Please help, I have reached a point of nervousness and concern. Even with that I am hopeful that this will solve the problem.
I am scheduled to have a colectomy in about a month. My surgeon has tried everything he can think of to help fix my constipation problems. At this point I am lucky to have a bowel movement every two weeks, but have gotten into a routine of having to have a disimpaction about once a month. My surgeon had sent me to a specialist (no results from the specialist). At a follow up with my surgeon, he had mentioned the possibility of removing my colon. He told me he had to go to a conference and would ask some of his colleagues for their opinions. With that being said, I got a call from his office yesterday. The nurse had told me that my surgeon had called him to let me know that the general consensus was that I needed to have my colon removed.
I scheduled the surgery for the next available date (my surgeon will get back basically in time to do the surgery). This means I do not really have an opportunity to talk to my surgeon before hand. I have a feeling I will not be able to get many answers before the surgery date comes.
I do not really know exactly what my surgeon will be doing - other than removing the colon. I am hoping I will not end up with an ostomy (temporary or permanent). I have no idea what to expect after the surgery. Having to wait a month without answers is a little nerve-racking.
If anyone has had a colectomy to treat chronic constipation and could share some information with me I would really appreciate it. Right now I am sitting in the dark waiting for a little light to shine in.
You might like to log on to this posting and maybe print it off and show it to your surgeon and ask "is this what you would expect for me?" I think you are entitled to pose these questions to your surgeon in advance and receive his/her feedback.
Another question I would ask:- prior to the operation the large intestine is "cleaned" via a purgative. In your case if there is still residual faecal matter (due to constipation) is there a greater risk of peritonitis due to and leakage/spillage of faecal matter into the abdomen?
By the way at which hospital/which surgeon is your surgery scheduled? This may be of interest to another Medhelp patient with whom I have corresponded and who has found it difficult to locate a willing surgeon
Do come back with any questions that you may have after reading the above etc.
Thank you for the information. I am very concerned about the preop clean out. The problems with constipation have reached a point where the only way I am really able to get anything other than little bunnie poos is to have a disimpaction. I have not found any medications that have been able to move things through. This includes bowel preps. I have been put on several different kinds of bowel preps, All I get in response to the prep is extreme bloating and pain, nausea, vomiting... no bm. If the bowel preps do not do anything for me, how will I be able to clean out prior to the surgery?
I am concerned about the surgery. I have had some issues with my surgeon's PA in the past when talking about my bowel resection I had. My preop appointment is with the PA because my surgeon is out of town at a conference and from what I have been told, is not due back until a couple days prior to my surgery. This minimizes the oppertunity I have to speek with my surgeon prior to the surgery other than the few minutes before being taken back.
I am futunate enough that my surgeon is taking an approach that I have not seen many others take. He has been making calls and contacts while being at the conference. He has been taking the action to identify what other doctors think about the situation. I am very thankful that he is willing to accept that he does not havr all the answers but instead of sending me everywhere he can think of, he is contacting places to find the answers.
I am in Wyoming. Due to previous safety issues, at the moment that is as much information I am comfortable giving on personal location. My surgeon is Dr. Ratcliff.
Thank you again for the information. I appreciate any and all information that I can get while I am in this waiting game.
I just wanted to give everyone an update. I had another disimpaction on the 1st. This time it was done by my GI doc. Things went a little differently this time. I ended up spending the night in the hospital because I was having several problems after the procedure. With the problems I was having and the fact that my surgeon had taken over primary care with my constipation problems, he was consulted by my GI doc.
I had been scheduled to have a total colectomy on the 21st. My surgeon decided it was best to bump the surgery up. I had a total colectomy with ileorectal anastemosis (sp?) on the 4th. My surgeon was a little concerned about the recovery for this surgery since the recovery for my bowel resection was not an easy one. It turns out my surgeon was right to be concerned. On the informed consent there was a list of possible problems I could have following the surgery. Near as I can tell the only complications I did not have were death or a leakage from the anastemosis.
Coming out of surgery everything seems to be going well. I had a bit of pain, but with four incisions what would you expect. I had a low grade fever from the time I came out of surgery. At first, we didn’t think much of it. It was low so there wasn’t much concern. I was on ice chips for the first 3 days as my bowels were slow to wake up. Once things got moving a bit (more than just a little bit, if any of you don’t know, having you colon removed leaves a lot of water in the bowels). I was making several trips to the bathroom and hoping every time that I would make it there in time. I also spent a lot of time walking around the hospital. Even with the pain, it is about the best thing you can do to help the healing process. There were signs posted stating that 14 laps around the surgical floor was 1 mile. I set myself to make sure I was able to walk at least 14 laps each day. It took a while before I was able to make more than a couple laps without having to take a break due to the pain.
Once my bowels got moving I was able to increase my diet from ice chips to clear liquids. That doesn’t sound like much unless you had gone over a week on clear liquids then 3 more days on ice. Well, it was about the time I increased my diet to clear liquids that things got to a bad point in my recovery. The day I was able to have clear liquids, I had a great day, but that night things got desperate. I ended up very ill. I had not had any nausea up to this point. I ended up projectile. I ended up getting sick about every half hour that night. To top things off I ended up coding. If you don’t know what this means, I became unresponsive, blood pressure plummeted, pulse dropped dangerously low, and I quit breathing. The nurse had to call a “code blue” meaning I was basically close to death. While I was unaware of everything going on around me, I was apparently vomiting blood. These are not things you want to hear happen to you. Once they got be stable again, I did not get as bad. I continued and still continue to be stuck with projectile vomiting with absolutely no control (yet this only happens at night). My surgeon has changed my meds to help control things as much as possible.
I am now back at home. Things seem to be going fairly well, other than my nightly vomiting. I am still having a little bit of pain, but I am not relying on the medications to help control it. I do not have much of an appetite, but can eat enough to maintain. I am still going to the bathroom several times a day, but with set limits in the evening I do not have to get up more than one or twice at night for a bowel movement. As some may find this a problem, for me it is welcome. I no longer have the feeling that I am going to pop and I am able to go to the bathroom without straining and hours of effort for no results. At this point in the recovery, I am feeling really well after my surgery.
thank you so much for being candid and posting your recovery. I am facing a possible subtotal colectomy and had posted a question on here with no response; however, I had previously posted and read Morecambe's journal entry, so I had some reference. I was just now looking for my question and read this post.
I pray that you are doing much better now and hope that the vomiting has stopped. I would think that is definitely not normal. I know how it feels to always be bloated and think you will pop any minute so glad to know that you have relief from that now. Take care!
I just wanted to give an update to the recovery process following my surgery. I am not having as much pain as I was when I first got back home. I am still battling the nausea and vomiting every night, but it is not as intense as it was. Shortly after I got home I was in a pattern of vomiting between 5-7 times every night. Now I am vomiting between 2-4 times a night. My doctors are still working on finding the right combination and frequency of the medications to stop it.
I had all 22 staples removed on the 15th. My incision was looking really good. I had a little bit of an area that was red, but I had not had a temp since I got home. When I got up on the 16th, part of my incision was really squishy and I could see a little bit of pus right under the skin of part of one of the incisions. With my experience as a CNA working on the surgical floor of the hospital, I was able to quickly identify the signs of an infection. I made an appointment with my surgeon for that afternoon. My surgeon looked at the incision and decided that it was good that I made the appointment because as he said, the infection could take over very quickly. He told me he was going to write a prescription for antibiotics. He also told me to try to play with it a little bit to try to get it to open and drain. When he left the exam room to write the script I took the opportunity to try to get it to open up a little bit. I did get it to open, although not in the spot we were looking at. Part of the incision opened up just enough to allow it to spray all over the exam room. I managed to spray the wall across the room and it left a massive trail. My surgeon came back in the exam room, and decided he wanted to look at it because neither one of us thought it was that bad. He barely pressed on my abdomen and about 1.5 ounces of brown pus gushed out. He cleaned it and again applied a little bit of pressure, this time about 2 ounces gushed out. My surgeon decided that I needed to go into surgery the next morning to open the incision and clean it out.
Following the surgery to clean out the infection my surgeon decided to leave the incision open. He did this to allow dressings to help pull any remaining pus and any thing else that might contribute to more infection. I have a hole in my abdomen about 2 inches long, 2 inches spread apart, and about1.5 inches deep. I have to go to the hospital every day to have my dressings changed. We are doing a moist to dry dressing. With this, moist gauze is packed into the incision with a dry dressing on top of it. Every morning I have to go in to have the gauze pulled out, have the incision flushed with saline, scrubbed out with q-tips and gauze, and then repacked with more gauze. This is not a fun process. The incision hurts, and parts of the gauze that is packed dries and sticks to the inside of the incision. When the gauze is pulled out it tears bits of the inside of the incision. This is a very painful process. I was told that I will have to continue to have the daily dressing changes for at least 3 weeks.
Over the last couple days, I have been feeling like I may be starting to develop an infection again. My body is beginning to feel like it is breaking down. At this point in time other than feeling very weak, I am not showing any proof of an infection. So we are just keeping an eye on everything and hoping I do not develop another infection.
I am able to eat a regular diet. I just pay attention to what I eat and identify any foods that cause problems. I am able to go to the bathroom without medications or surgical procedures. This is a great feeling. As odd as it sounds, I am amazed every time I go to the bathroom and see how much comes out. I am able to expel more poop each time I go than I was able to get out in a month. I am going to the bathroom between 5-8 times a day (may be more or less depending on what and how much I eat). I have learned to limit my food intake in the evenings to reduce the trips to the bathroom in the middle of the night. If I eat past 7pm it is guaranteed that I will go to the bathroom in the middle of the night. Depending on what I eat in the evenings I may make 2 or 3 trips to the bathroom. If I pay attention to what, when, and how much I eat I am able to go to bed and only have to get up once if at all. The last couple nights I have been able to go to bed between 2 and 3 in the morning and get up at 8. During this time I am able to sleep through the few hours I am actually able to sleep without lying awake or getting up to be sick, but I do not have to go to the bathroom. If I am able to make it through this time frame without getting sick, I am able to stay in bed without the overpowering urge to have a bowel movement. Most of the time I am able to go at least 3.5 to 4 hours without going to the bathroom. This is very dependant on what I eat, how much, and when. I have had a few days where I apparently tried to introduce foods that my body is not ready for. This has led to watery stools, unbelievable urges, and a very strong need to find a bathroom quickly. Though I have had a few days like this, it is not the norm.
Two concerns that have come up at this point are dehydration and weight loss. Without the colon and my small intestine has not yet figured out that it has to take of over for the colon, my stools are very loose and wet. This has contributed to a good deal of fluid loss. Also as long as I am battling the vomiting I am losing a lot of fluid. Dehydration under either of these conditions would be a concern. When you mix both of them, it is extremely difficult to maintain a proper level of water in my body. I have also lost a bit of weight. During the day I try to maintain a higher calorie diet to try to maintain some kind of normal weight. I have always joked with my family that I would never be able to have an eating disorder. I like food and I hate being sick. It is a little hard to have any kind of eating disorder with those factors . My family knows what is going on and is able to see that I am doing everything I can to maintain, but those who do not know me as well have made a few comments about having an eating disorder because of the weight loss, vomiting, and frequent bowel movements. There are a few people who are convinced I am intentionally causing these things. Those who believe this do not understand what happens when you remove the colon. I have tried to explain the surgery and the issues I have been having, but they are under the impression that I am trying to come up with a creative story. From the time I left the hospital I am averaging a loss of 1-2 pounds per day. I have been out of the hospital for 10 days now and have lost 19 pounds. That kind of weight loss is not healthy. The day I got home from the hospital I weighed myself. I weighed 127 pounds, as of this morning I weighed 108. I am 5 feet and 3 inches tall. I am quickly going down to the underweight level. My surgeon and I are trying to figure out how to slow down the weight loss, but again with vomiting and frequent stools, it is a little difficult.
So far this has been a long road of recovery from the surgery. All of the complications I have gone through are making things a little difficult to deal with. Even though I am having so many problems, I do not regret having this surgery. I have been very sick for 2.5 weeks now, but I remain hopeful that these issues will be resolved at some point. I am also trying to keep a positive mind by comparing all of this to the problems I was having before the surgery. As miserable as I was with the constipation, I keep telling myself that all of this will be worth it. I do not have to keep an eye on the calendar to determine if it is time to have another disimpaction or seeing how long it has been since I was able to go to the bathroom. During the day, after having my dressings changed, I may go to the bathroom a few times a day, but that is no different than me trying to go to the bathroom for several hours each day. I am also able to go through my day without having a major impact from the surgery. I have not been the kind of person that gets the full 8 hours of sleep for over 10 years. With that, not being able to sleep much because of being sick is not having much of an impact on me. The only two things that every day I hope will go away are the vomiting and the battle with the infection.
I hope everyone is doing well. I will provide another update after a few more days or by next week. I want to be able to provide information for anyone who may be facing surgery to remove the colon. I did not have much time to find this information before I had the surgery, but I hope everyone else is able to take the time to understand what they may experience prior to having the surgery.
I am facing this surgery in the near future so your posting has been invaluable to me. I cannot tell you how nice it is to read your posts, although, I hate to hear about the problems you have had, the infections and the vomiting. I appreciate the candor though that you express. I will keep you in my prayers that the vomiting and infection will stop soon and that you will continue to heal and feel better. I will be thinking of you!
I am glad that my postings are able to provide you with information about this surgery. I’m sure reading about the issues I have gone through does not make this seem like a fun surgery to look forward to. Everything I have gone through over the last few weeks, I was told were possible complications. It is important to know the possibility of these complications. You do not want to get hit with all of this kind of stuff without knowing that it was a possibility. To try to ease your mind about all of this, I can say my doctor told me that very few people actually have these complications. There are some things that are more common, like frequent bowel movements, dehydration, and weight loss. All of this is due to the lack of the colon absorbing the fluid from the stool. Over time the small intestine does learn to take over and absorb the fluid, but this can take several months to a couple years.
My surgeon had planned on the possibility that I might be more prone to the complications. My previous surgeries had a high frequency of complications. With my history it was almost expected that I would have problems with this surgery. My surgeon had mentioned that the average hospital stay with the colectomy is 5-6 days. He also said, prior to the surgery that I would probably be in the hospital a few extra days and made plans for that. He did say that if I did not have the complications he would release me from the hospital as soon as possible. There was a possibility that I could have been released prior to the average 5-6 days. I did have complications so I did stay in the hospital the extra few days.
Part of the problem with me having as many complications as I had is due to the fact that my health has been deteriorating and preventing my body for healing normally. With all of the surgeries I have had my immune system is a little weaker so I am more prone to infections. I have severe gastroperisis so my stomach does not empty within the normal time frame (leading to my nausea and vomiting). I have also been battling constipation long enough and severe enough that I was unable to clean out my bowels prior to the surgery. This led to an increased spillage of stool from my intestines into my abdominal cavity. The stool has a high count of bacteria normally. That is why it is so common for mostly women to have more frequent UTIs. The majority of UTIs are caused by e coli from the stool. With the spilling of stool into my abdominal cavity there was a major increase in the possibility of any of my incisions becoming infected. That is why my surgeon ordered so many IV antibiotics prior to going into surgery, during surgery, and following surgery. He was hoping that if he gave me enough preventative antibiotics I could avoid the infection. I also have a very lengthy list of allergies, so it is possible that some of my complications were due to an allergic reaction to something.
With all of that being said, it was expected that I would have complications from the surgery. It is not common for patients to go through everything that I have. It all depends on your overall health prior to the surgery. Everyone's body is different; some people are more prone to complications while others have a higher frequency of faster and easier recovery.
As I provide updates of my recovery process I am not going to sugar coat anything. I think it is very beneficial for people to hear from those that have quick and easy recoveries and those of us that have more problems along the road of recovery. Having this information can make preparing for surgery easier. You can have an idea of the variety of things that you may go through, yet you can also see that some people have a great recovery. Though I new it was possible and highly likely that I would have complications, I had high hopes that I wouldn’t and that this surgery would fix all the problems I have gone through in the last 14-15 years. Because I had high hopes, I did not pay as much attention to the likely hood of complications, so when I got hit will all of this I was a bit disappointed and surprised about it. I think all of this might have been a little easier for me to deal with if I would have paid a little more attention to it and prepared myself a little better. There are some things that no matter how hard or long you try, you can never be prepared completely. But, with an understanding of all of it, you can be at least partially prepared. With my stuff, I was expecting that if I was going to have complications I thought it would happen with the first day or two following surgery. Since I did not have any problems within the first couple days I allowed myself to feel relieved and made the mistake of thinking I wouldn’t have problems. My complications also came on very rapidly. The first night that I had issues I literally was up walking around and felt great 20 minutes before everything hit. After my walk I had gone back into my room and got ready for bed. I did not have any signs that that night would have been the longest night of my recovery. As I was lying in bed I had no indicators that I was going to get sick. I was not nauseous, did not feel hot, weak, or anything. I was very comfortable until the second that I got projectile. It was within a couple minutes of getting sick the first time that night that I coded. I was lucky enough that I had pushed my call light to get things cleaned up and try to get some medications. My nurse had told me that within 30-45 seconds of her coming into the room I coded. With these kinds of complications, there just is no time to prepare for. Fortunately after the first night I started to feel a little nauseous prior to getting sick every night. Though I was a little nauseous I had and still have no control over when I get sick. I do not have time to get to the bathroom or to have anything ready to catch. Because of that and knowing it happens at the same time every night, I spend several hours in the bathroom every night knowing it is easier to clean things up in there.
I do not want to provide information that makes you over concerned about the surgery, but I do want to provide enough information that others can have an idea of what worst case scenario might be like.
On a positive note, for me. I went in this morning to have my dressings changed. The nurse who was changing the dressings measured everything and concluded that the entire hole in my abdomen is about 3/4 of what it measured when I had my first dressing change last Friday. So in six days it shrunk by about 1/4 of the size. This is encouraging thinking that the incision is trying to heal quickly. It is still possible that I will have a few more weeks before things are close to being healed, but I am off to a good start. We are still keeping an eye on things to be able to catch an infection as soon as it shows if it does happen. I do know it is a possibility for the infection to return, so I am keeping myself prepared for it, but hoping it doesn’t. I am still feeling over weak, tired, and in general uncomfortable, but I still am not showing absolute signs of the infection developing. It is possible that I may be feeling like this just for the fact that my body is in overdrive trying to heal. Only time will tell on what happens next.
If you have any questions or would like more information please let me know. I am currently in a detailed conversation with someone else through the private messaging in here. If you would like to I would be more than happy to use the messaging to provide you with more information, other wise I will keep an eye in here to look for any questions you or anyone else might have.
I hope everything is going well for you right now.
It is saddening to read of the long painful journey you are on.I wish your doctor and looked at your history more; and that the recovery haid been smoother. I pray and will pray hat you get back to that person who likes food & hates being sick.
Just an extra note that I forgot to mention. If your surgeon attaches everything back together so you can go to the bathroom normally (that is what my surgeon did), you are going to have frequent bowel movements. Yes, I already mentioned that part, but I forgot to follow up with that. With the stool coming right from your small intestine you will likely face a couple discomforts. First of all, frequent bowel movements leads to frequent wiping. It is also common for the stool to be a little more acidic (the bile is more concentrated in the stool in the small intestine). Both of these factors lead to irritated skin around the anus. I have found a couple things that help ease this.
First I use A&D cream (the cream goes on smoother than the ointment and also cleans off easily). I also have Desitin, but I have always gotten a rash with Desitin so I do not use it very often. This will help to protect the skin from the acidic irritation. I reapply the cream after each bowel movement. I do not recommend using much of anything with menthol in it. One of the nurses in the hospital gave me some barrier cream that the hospital uses. The menthol is supposed to provide a feeling of cool (some times cold). It is thought that this helps things feel more comfortable. I used that ointment once, and shortly after applying it I was struggling to get it off. This ointment does not clean off as easy as the A&D or Desitin. That ointment made it feel like I had an ice cube shoved up my butt and felt so cold that it felt like it was almost burning cold. It also stings when being applied. With as difficult as it is to clean off, you are not going to want to fight that battle. You will be butt hurt (sorry, you have to have a sense of humor when going through this) you do not want to do anything that will make it worse.
I also use the Cottonelle moist wipes. The moist wipes makes it easier to completely remove any stool that tries to stick to the skin around the anus. They also are a bit softer than just using toilet paper. The moist wipes clean off the stool and the ointment that had been applied. Do not use anything with perfumes, the perfumes will irritate the skin further. Some people recommend using the sensitive baby wipes. This is fine for general soft cleaning, but I do not recommend using them after bowel movements. Baby wipes are NOT flushable. You may get away with flushing one or two, but baby wipes can clog drains because they do not break up like toilet paper. The Cottonelle moist wipes do break up like toilet paper and are safe for flushing. If you use the baby wipes, you will need to put them in the trash. I personally find it very nasty to put anything you wipe off in the trash, unless it is just an in general soft cleaning. I have not found any baby wipes that are flushable. When you are going to the bathroom frequently, you do not want to add anything that could lead to clogging the drains.
One other thing I have noticed with having surgery on the GI system is gas pain. It is hard to describe this pain, but it is like the worst gas bubble you have ever had. Unfortunately, you will feel at least 75% of the gas bubbles that develop in your intestines. I know of a few people who tried to use their pain medication to relieve this pain. The problem is pain medications slow things down in the GI tract. This causes more pain and discomfort. I regularly take 1-2 simethicone tablets. The simethicone tablets are chewable, and you will want to chew them completely, the more you chew it into tiny particles the better it works. Simethicone is the ingredient in Gas-X. It breaks up the gas bubbles so that they are much smaller and easier to move through. I take them 4-5 times a day. I try to take them regularly to avoid the gas pain instead of taking them when the pain hits.
When are you looking at having this surgery? Is it scheduled or just a possible plan in the future?
Wow, you are truly a wealth of information.Thank you so much for responding and letting me know all this. The surgery is a definite, we just haven't set the date yet. My husband retires soon, so we will wait until then, so that he can be home with me. I also have a son who will be out of school then too so I can have help around the house.
But this info you give me is not the kind doctors give, so I truly appreciate it. I already use the Cottonelle wipes so that is good to know.
I pray everyday that you will continue to heal and feel better. I told my husband that I read your post, you had a rough go but you are still happy you did it, and he felt that is good to know. Worried about me and all.
I am glad you are getting benefits from my postings. That is the reason I decided to reveal so much of my personal struggle with this. As long as I am able to help one person I have completed my goal. There are parts of this surgery that I am willing to bet you will not enjoy. It is a major surgery, and there is a good deal of pain at first. The pain does get better over time. I am almost 3 weeks out of surgery and have been home for 2 weeks. Tomorrow will mark those time periods. As of today it has been 1 week since I had the last surgery to clean out the infection.
Right now you may be wondering why I am rattling off this time line. When I left the hospital after the main surgery I was given a script for pain pills. The doctor put that I can take one every 3 hours as needed, he wrote for me to get 30 of them, but no refills (laws and restrictions, none of my doctors have been able to write for refills on the original script for several years – this information is for those who do/did not know about that). I will probably be calling my surgeon’s office today to see if I can get a refill. After 2 weeks I ran out of my meds last night. Part of that is I do not like to take medications, and I hate taking anything that could make the constipation worse (pain meds slow down the GI tract if you didn’t know). The other part of that is that I have been able to manage the pain really well. I was taking the pain meds a couple times a day and alternating between ice packs and my heating pad. Typically by now many doctors would be able to tell me that I can sit in a warm bath to help relax and ease the pain. With the open incision I have from the infection I cannot do that, but most other people (who do not have a hole in them) would be able to do this as long as the incision is closed and any stitches or staples are out or healed.
Many doctors choose to remove the staples (I had 22 staples – will explain in a minute) after about 1 week. This means many people will have their staples removed prior to being discharged from the hospital or shortly after going home. My surgeon likes to leave the staples in for 14 days to make sure there has been enough time for the incision to completely close and not have any problems. I don’t remember if I mentioned this in one of my earlier posts so I will just put it here now to be sure. I have 4 incisions. I have 2 laparoscopic incisions from where my surgeon inserted a couple tools, one was a camera and the other was to inflate my abdomen with gas. Once I was inflated my surgeon was able insert a different tool to help do the surgery without having to open me from top to bottom. Both of these laparoscopic incisions are on my sides (kind of) I have one on the right just below my ribs and between my sternum and my side. The other one is in the same location except it is on the left. I have 2 4 inch incisions. One goes around my belly button. This incision starts below the belly button, curves around the right side of it, and then continues up. The top and bottom of this incision is in line with the middle of my belly button. This incision was where my surgeon removed the large intestine. The final incision is a bikini line incision. My surgeon was able to make this incision through the scar from the 6 inch incision I had from my bowel resection in September. This incision was so my surgeon could reconnect the parts. My small intestine was connected to my rectum (my surgeon was able to leave most of the rectum intact so I did not have to have a J pouch, if you want to know about the J pouch please let me know. A J pouch can be a frequent occurrence with this kind of surgery depending on what your surgeon has to do). Each incision had staples (I was laughing with one of my family members about my surgeon being staple happy). I do not think I really needed the staples in the laparoscopic incisions (these incisions are small than what I have from having my gall bladder removed). Each laparoscopic incision had one staple, my bikini incision had 8 staples, and the incision around my belly button had 12 staples. This seems a little excessive. I think we could have done with just a few less staples.
There is a reason why my surgeon was staple happy with me. This is the same reason why he did not use the stitches. When I had my bowel resection I had about 1.5 inches of my incision open. I made a bad choice (I helped move the trampoline in my back yard, this was done about 3 weeks after the surgery) I also fell down my stairs shortly after moving the trampoline. This may have contributed to the opening of my incision. I am also, typically, a very active person. Trying to limit myself after that surgery was difficult. I was back to work after only a couple days when I had my appendix removed and I only missed one day of work when I had my gall bladder removed. I did not like the idea of being so inactive after my bowel resection. With that, I felt the majority of the inner stitches pop. My surgeon did not want that to happen again so he decided to use staples on me. I am also more willing to be less active right now hoping to get the incisions to heal properly without having to extend the recovery process any further by not following the orders of my surgeon.
There are some people who regret having this kind of surgery. It is major surgery and it can be difficult to adjust to the changes in life that you will face for a little while. You will be going to the bathroom much more often. Some people find this to be very embarrassing when they often have to find a public bathroom. One other very important change is with any medications you take. You will not be able to take any medications that are extended release or have any coating. These types of medications are designed to that they start to break down and release the medication once they are in the small intestine and some wait until they are in the colon. Without having a colon these medications will not have enough time to break down before you have to go to the bathroom. I tested this theory. I took one coated aspirin. The coated aspirin is designed to make it through the stomach acid and start dissolving in the intestines. It does this to reduce the risk of ulcers developing. True to what I was told about this, the aspirin moved right through me. The aspirin was still fully coated when it was in the toilet. I know that sounds nasty, but that is the best way to get this information across. Any coated or extended release medications will not have enough time to work properly when you do not have a colon. This is something your doctor should go over with you. It should also be on the discharge instructions. From the time you have this surgery it will be very important for you to mention this to any doctor that is giving you medications. Any doctor that know you have had this surgery should know about this, but some doctors may not know that you have this surgery so you will have to take the proactive approach to your health care and let them know.
If you have any questions about the surgery please let me know. Other than what your doctor can tell you, I am not here to replace any doctor’s information, I am only providing information I have been told and my experiences. My information should not replace the importance of speaking with your doctor.
By time you have this surgery I will be a little further along in my recovery and I will continue to provide information about my recovery process. This will allow you to have an idea of the recovery before you have the surgery. I am more than happy to explain anything that I have been through and provide as much information as possible. If you have any questions about the recovery process that I may have over looked with my postings please let me know.
You may not know yet until you go over everything with your surgeon, (if not you might want to ask before you have the surgery) but do you know how your surgeon is wanting to do this surgery? What I mean is with a colectomy surgery can be done in either a 1,2, or 3 step process. Mine was done as a 1 step. With this I only had one surgery, when my colon was removed my surgeon reconnected my small intestine to my rectum at the same time. With a 2 step, the surgeon removed the colon, gives you a temporary ilieostomy, creates a pouch out of the small intestine, and waits to reconnect everything until the next surgery. A 3 step is where the surgeon removes the colon and gives you a temporary ilieostomy in the first surgery, recreates the ilieostomy and makes a pouch in the second surgery, and in the 3rd surgery removes the ilieostomy and reconnects everything. Most of this depends on whether your surgeon leaves your rectum in tact. If your surgeon is leaving the rectum it is most likely that it will be a 1 step, but even with leaving the rectum it may be decided to give the rectum a break for a little while before putting it back to use. Typically, most people have about 3-4 months between surgeries if it is done as a 2 or 3 step. If you will still have your rectum, there will not be a need for the 3 step even if you have the temporary ilieostomy. Why are you having the surgery?
I am just curious about the 2-3 step surgeries. If you would like me to explain all of this a little more, please let me know. If you and your surgeon have not talked about this, it might be a good idea so you have a better idea of what to expect.
You have been wonderful. From what he said at our last appt, I think I will be only having one surgery as he will connect it then. However, I also have rectocele, which will be corrected surgically and I am hoping they do that too. I have had 5 surgeries in the last 2 1/2 years and am so not looking forward to another surgery. The reason for mine is basically slow transit colon. I have also not gone on my own to the bathroom in almost 4 years, so I am currently in bowel retraining before we do the surgery. They are 2 separate issues however; I have to do the retraining first. My neighbor had this done about 5 years ago and he called me last night and told me that he had micro surgery instead of a vertical incision and then went on to explain alot. He ended up with an ileus after his surgery but that was his only complication. It is so helpful to talk to others, thank you so much!
Just a thought of hope for you, I had a rectal prolaps that was surgically fixed when I had my bowel resection. With that, I would think you should be able to have your rectocele fixed during the same surgery. They are slightly different issues, the rectocele involves an additional layer of problems than just a rectal prolaps. The only way to really know if you will be able to have it done at the same time is to ask your surgeon.
I am glad you are able to talk to a couple different people to get personal information about the surgery and recovery. I think it helps to read the pamphlets and other information about procedures, but they do not include as much information or personal experiences from those who have had the surgery. My experiences may be different than the experiences your neighbor had. Hearing different experiences will give you a better idea of the possible things you may experience. (Sorry, I know my wording and typing in this is of poor quality, I am medicated right know).
Thank you for responding. I am having the rectocele at the same time, my surgery is scheduled in May. It definitely helps to hear from people who have actually had the experience of the surgery and they can tell you their perspective, whether bad or good. It's always good to be prepared.
I hope you are doing ok (you said you were medicated).
I was re reading through your posts, so very informative and writing down info. I am glad I did, as I take alot of other medications for my heart and for my peripheral neuropathy and some of those are coated and ER, so I will call my regular doctors and let them know. I would not have known that if you hadn't told me. My surgeon has not mentioned anything at all.
He is giving me a medicine called Entereg while in the hospital. It is to help you to be able to transition from liquid to foods basically. Did you have that? and did it help?
Thanks for all your help, truthfully, it's a blessing!
Sorry I did not get back with you for a few days. Yes, I am still medicated. I had another minor surgery for a stitch abscess (some of my stitches did not dissolve). I am doing much better as time goes on (update below). You mentioned your surgery is scheduled for May, when in May are you looking at for the surgery?
Yes, I have been given the Entereg. I was given it for my bowel resection and for the colectomy. I was given it right before the surgeries (YES!!! I got a small drink of water with it :-) ). I was also given it for a few days following the surgeries. One of the key things I can say is you will be going to the bathroom a lot (personal recommendation – do not try to pass gas without sitting on the toilet, be prepared for things to be ready to move through you). This medication gave me very watery stools. Once I was taken off it things thickened a bit and slowed down.
I am glad to hear that you will have the rectocele fixed during the same surgery. It really will help to have everything done at once. I am battling recovery from having so many abdominal surgeries so close together. My surgeon has mentioned a few times that I will be having a difficult recovery for a while (probably at least a few more months).
With all of that being said, I will now provide an update on how things are going for me.
I had the stitch abscess which involved a minor outpatient surgery. I was lucky enough to only have a small incision and my surgeon mentioned that it was not as bad as the last time I had a stitch abscess from my bowel resection. My surgeon and I were concerned about it because everything was presenting the same as it did before and was even in the same location. I am not dealing with what I am guessing is another infection (my incision is not completely closed like it should be and I am having drainage that is eating away at the skin and making me smell like I have been cuddling with a dead animal – sorry for the details I know it sounds nasty, it is really nasty for me to be sitting here smelling an animal rotting knowing it is me. Unfortunately I cannot get in to see my surgeon until Thursday afternoon.).
My nausea and vomiting is getting a little better, it is still a battle, but we have been able to reduce my medications. I am now only on a few medications a day including my nausea medications and pain medications. I no longer have to take all of the medications for the slow transit and gastric perisis (sp?).
I am still trying to figure out what I can eat without having problems. I have not yet been able to pinpoint what I have been eating that has increased my bathroom trips and making my stools more liquid. Other than trying to figure out what occasionally causes these changes, things have been improving. I am still making between 4-8 trips to the bathroom but there has been a little less urgency. The last couple days I have found that I have to go to the bathroom right after eating. I am able to sleep through the night (for the most part, again depending on how foods agree with me there have been a few time when I have had to get up in the middle of the night). I have gotten used to going to the bathroom right before going to bed so I am getting myself on that schedule.
Most of the abdominal swelling has gone down, I am still a little puffy but not nearly as bad.
I have been able to eat most of the foods I was eating prior to the surgery. I am eliminating corn, celery, and asparagus from my diet as these foods are not easily digestible and can really be kind of disturbing when going to the bathroom. I am still working on medicating before eating to reduce the nausea and vomiting, but it is getting better.
I am still trying to get used to the sounds that come from my abdomen. Oddly enough I can also feel things moving through. I can feel it internally and if I have my hand on my abdomen. I am also trying to get used to the wonderful sounds that are now part of my bathroom trips. It is a little difficult to be discrete about going to the bathroom when you have very loud gas and soft (putty like) or liquid stools. I know, again I am going into details that some people may not want to hear, but it is something you should be prepared for when you are having your colon removed.
Overall, other than healing from all of the surgeries I am not really having many of the problems I was having prior to the surgery. I will always have to deal with my food allergies and am getting used to dealing with the delayed emptying, but I no longer have the inner abdominal pain or the constipation. For the first time in 13 or 14 years I am starting to feel like a normal human. I am not really sure what that is like because I have been dealing with the GI issues for so long. I really am glad I had this surgery. It has been a long road of recovery for me, but I do not regret anything about it.
I wish you the best of luck and health with this surgery. Please keep me posted on how things are going with you. I will continue to provide updates as time goes on for me.
Another note on the Entereg. I just realized I did not answer all of your questions. When I was given the Entereg after my bowel resection I was able to eat quite a bit while in the hospital. It does help to get your intestines working faster after having surgery on them. I was not given the Entereg as long following the colectomy, now I want to ask my surgeon if that might have been related to the nausea and vomiting I experienced while in the hospital. I did not experience the nausea and vomiting after the resection like I did with the colectomy so I am not sure if there was a connection there. I will say from my experience working on the surgical floor as a CNA a few years back, I had a lot of patients who had GI surgeries. The Entereg was not something I knew of the patients receiving. Many of them had a few days before they could eat solid foods due to the slow waking of the GI system. While I was in the hospital following my surgeries I had talked with a few other patients who had similar surgeries. Some of them mentioned that they were given the Entereg while others said they were not. Those of us who did get it seemed to be moving on to food faster than those who didn’t. With that I am guessing it does help. It is kind of hard to say on a personal level because I do not have anything to compare it to. I am not able to say with one surgery I didn’t have it and with the other I did. So I cannot really say with certainty that it did help me. Overall I think those of us that did get it seemed to transition faster and not end up with the NG tube (though it was mentioned with my colectomy due to how sick I was), some of the patients that I had talked to had the NG tube and that slowed things down even further for them because with the NG tube you cannot have anything other sips of water and ice chips until the tube is removed.
You have helped me immensely - you cannot imagine. I had all my medications changed over already because of your post about them going right through you. My doctor has not mentioned that at all and of course, that's very important. I take quite a few meds and I did not want a lag time if possible, so that alone was helpful, but truly everything you have written has helped me. It is good to know that the Entereg will probably be a good thing. I have a fear of the NG tube!!! I plan on giving my intestines a break and not jump into eating regular food right away anyway, planning on smoothies, soups, things like that when I get home.Thank you truly!
I am glad you have been able to find people who you could talk to to get information about the surgery. It can be concerning as the day approaches. I have had a NG tube (a month or so before my colectomy, I ended up so sick I was in the hospital for a few days and joy I got one), it is not a fun process trying to get in put in. If you have to have a NG tube, ask your doctor to have it put in while you are under some type of anesthesia. It will make it easier on you and who ever gets lucky enough to insert it. Having it taken out is not nearly as bad as it going in.
I am a little surprised your surgeon has not mentioned the medications. When you had them switched did your other doctors say anything about it? Your surgeon may mention it after the surgery, that really doesn’t help much when you have to get a bunch of meds changed. I am sorry you have been through so much. It really isn’t any fun when you have to fight you health so much and for so long.
While you are in the hospital I would recommend that you try out a few different kinds of food. I agree with taking it easy for a while, but you want to know how things are going to go. If you do this while you are in the hospital, they can give you meds through your IV to help if some of the foods are not sitting very well. With simple foods like soups and smoothies, just keep in mind they do not have much that will thicken things up. With that being said, you will be having loose and frequent stools. This will not be a fun process just from the nature of the surgery, so keep that in mind. When I got home, I had a diet of very bland foods (eggs, toast, mashed potatoes, etc.). Not to be too nasty here, but I want to give you an idea of what you are about to experience. The foods you eat will move through you fast enough that they will not have much time to change. Some things I have noticed – mashed potatoes, if that is all you eat that is what will come out, yes that means very light colored stools in the consistency of mashed potatoes (I am about 2 months out from the surgery so things have changed my me with regards to thickness in stools). I have also noticed red foods (tomato sauce products like spaghetti sauce) and the vegetable soup, have made my stools almost black (this again is where I am still trying to figure things out, it is with some of these foods that I end up with almost watered down stool, not sure which food is doing that). I also have not yet figured out what I have been eating that has made my stools move through me with higher concentrations of bile. Having large amounts of bile is not comfortable on the skin.
As you are progressing your diet to more regular foods, keep a diary of what you eat and what your stools are like for the next 24-48 hours. Some of the foods cause changes faster than others. Generally, for me, I am passing the foods through within about 12-18 hours. Just keep in mind my body will react to foods differently than yours and what I eat may be moving through me at a different rate. We are all different and our bodies will follow different patterns.
**** For the first few weeks, though things will be moving through you very easily, remember to try not to push to have a bowel movement. For those of us who have gone so long without being able to go to the bathroom normally, we have trained our selves that we have to push to get the stool out. I was confused when I had some people telling me they do not push to have a bowel movement. I am still trying to retrain myself not to push. Early on, pushing will make things difficult. As the stool move through you may not notice much (I was able to and still can on some days, feel when the stool reaches the part where my intestines were connected. It is a weird feeling, but not really much pain with it). If you try to push to have a bowel movement, you WILL feel it in your abdomen where the incision is. It is much more comfortable on the abdomen to just let the stool come out on its own or with some movement of the abdominal muscles, you really don’t have to push to get it out.
I am trying to think about some of the important things that I may not have mentioned through our discussions yet. I may have a few more posts as I think of things.
You are absolutely the best. You have helped me more than anybody. My doctor doesn't say much and when I ask questions, his answers are short. I see him on the 16th so will try and ask some more.
Thanks for the info on the pushing. It's very important to me as before I have the surgery, I am retraining my bowels as I was doing the opposite of what should have been done. It has helped me but I still sometimes try to push and from what you are saying, I shouldn't do that so thank you!
and as for the foods, I guess like you say, try some out at the hospital first and then afterwards at home, keep a diary. I like that idea as it will definitely help me to see what is doing what. Otherwise, I might forget. I think I read somewhere else that some people use a stool softener at first. Did you? I can't remember.
My surgery is May 18th, as long as my blood work is ok. It came back with a clotting factor issue so they sent me for more testing. I get those results this upcoming Monday.
I am also currently being tested for MS so have alot going on.
All my medicines but one have been changed over and that doctor wanted me to ask my GI doc so will do that and hopefully, won't have to change it out, as I will only have 2 days and one day is prep day and the other, surgery day!!
Thank you, thank you for all your help!!!
It is important to get as much information as you can prior to the surgery. If your doctor is not really answering your questions, keep asking him or her. If you still do not get any answers, ask in here or in another thread so that someone can help you.
The 18th really isn’t that far away. How are you feeling about having the surgery? Understand that it is a stressful process and for some people (like me) recovery may be a little difficult. As one of my last words of encouragement for the surgery, I just got back home from my graduation ceremony from the University. The school is in another town than the one I live in. This meant I had to drive about 3.5 hours to get to the other town. I had to stop once on the way there and once on the way back. For some reason things are moving through me a little quicker right now than they had been the last few weeks. Even with that issue I was comfortable with making the drive without having any problems (I packed to be prepared, but did not need it). I was able to graduate with by BA is Psychology and had been invited into Phi Kappa Phi which is a national honor society that only the top 10% of graduating seniors get invited into. I have been through a bit with my medical issues (total of 12 procedures in the last 8 months) but was still able to finish school. I am still waiting on 2 grades, but even if the last assignments I turned in do not get the best grade I will have received my credits for those classes.
Long story short, despite the surgeries and difficult recovery, I was still able to complete school. It was a difficult process, but like I have said before I am currently taking things one day at a time to get through it. There are some changes (like bathroom breaks) that you will have to go through, but even if things are difficult for you (I am praying everything goes smoothly for you), stay positive.
I hope things work out with the blood clotting. That could cause some problems if things are not clotting properly. I had a bit of bleeding from my lower incision and I do not have a history of clotting issues. I really hope things go well for you and the clotting issue.
As for the stool softeners, I am not sure why anyone would need them right after having any part of the colon removed. Quick anatomy lesion – the small intestine mixes the food and liquid with bile to help break everything down even further and absorbs a good deal of the nutrients, the large intestine (colon) absorbs excess water and a few vitamins and minerals. With that being said when you disrupt the process of water absorption from the colon, your stools are going to be softer and more liquid than prior to removing any part of the colon. After I had my bowel resection I had about 3 weeks of pure liquid stool, after that time I returned to major constipation. As I am now a full 2 months past the colectomy the thickest my stools have been is about the consistency of putty. I have not taken any kind of stool softener or laxative since I had the colectomy. I am still on my pain meds which for people with a colon can cause constipation. I have not had any issues with that. The longest I have gone without going to the bathroom is about 12 hours. During that time I was a little more nauseous than usual so I had not eaten much. Even after the period of going about 12 hours without a bowel movement when I did go it was still very soft and again, not more than the consistency of putty. I do not think you will need the stool softener. It took me about 2.5 weeks following the colectomy to have anything other than water like stools.
Have fun with the prep. My prep was about a week long. I had Monday through Thursday on a clear liquid diet. Wednesday and Thursday I had to drink the half litely. Wednesday I also had to drink 2 bottle of Magcitrate. Unfortunately for me even with all of that I was only able to have 1 very small bowel movement. Everything that was left in the upper part of my intestines were pretty well prepared for things to work, but the colon was not doing anything so it was kind of blocking everything else from moving through. Due to the amount of stool I had left in my intestines my surgeon and I are convinced that is what caused the massive infection I had. So I am glad to hear you only need the day before for the prep. The prep is not a fun process, but it is very important in helping to reduce the risk of infection.
Best of luck. Keep me posted on how things are going. You are welcome for the advice and information on my experiences. I really am glad that my experiences were able to help you.
Although I am quite late to chime in on this conversation, I thought that my little input may help someone along the way. I am 31 years old and recently had a colectomy (2 weeks ago)
I have had bowel issues since before I knew exactly what a colon was. When I was a child I used to shy away from foods and was labeled a very picky eater, but although I was somewhat picky that was not the real issue. The issue was that my body had serious problems with digestion and many foods caused me great pains. I was not at all aware of what was going on until I was about 12 or 13 years old and went on a church trip with my younger sister. Of course no one talks "poop" talk as a pre-teen or teen girl so still at this point I had no idea that me having bowel movements every 3-4 weeks was not normal. It was not until this trip that I noticed that our chaperone would get up every morning and "stink up the bathroom" I made a joke to my sister about it....something to the effect of "OMG she uses the bathroom every morning, who poops that often?" LOL An to my surprise, my little sister said, "Uhhhh hello, I do, everyone does." So it was then that I started paying attention that there was something wrong. Oh I forgot to mention that as a child or teen I was underweight for my height, not severely but definitely underweight as I weighed about 115-125 standing 5'7" and I am an African American female.
Well I brought my issue to my mother and she began to look into it. Soon I started seeing gastro doctors and all kind of people because I would have horrible pains and distention after a couple weeks. I had actually kind of learned to solve my own problem at the time because after I'd use the bathroom I'd eat until my belly was full for a few days and then I'd literally go without anything again until I could use the bathroom which could be weeks.
By the time I entered college, it was worse than every. When I got pregnant with my son, I gained over 125 lbs and still didn't eat much during the pregnancy. The pregnancy was horrible but retaining that weight after was much worse. I only lost about 35 of those lbs and that was with some serious exercise and taking adipex for a few months. Anyways I continued to go to my regular gastro doctor but eventhough he listened to me he just diagnosed me with chronic constipation and began treating me with all types of meds. I've taken everything from Dulcolax, Amitiza, Colace, Reglan, Muralax, Cytotec, Go Litely, Lactulose, etc...you name it and I'm sure I've taken it.
Well if you've suffered this problem then you know medicines only work for a short amount of time and then your body adjusts so everytime you think its getting better, the meds stop working and then the doctor has to adjust and re-prescribe expensive meds that you've already paid for but stopped working.
So fast forward to present day: 2011, I have 2 bilological children, custody of my nephew and a loving husband, I have had gallbladder removed, several hernia repairs, tummy tuck, breast reduction, c-section, endometrial ablation, and hysterectomy....AND MANY MANY MORE plus now a colectomy!!!
So I am hospitalized atleast 2-3 times a year due to my severe constipation and this time was no different. I went into the ER and they kept me. I sat in the hospital as they pumped me full of Lactulose, Muralax, etc for almost 2 weeks with absolutely no result AT ALL before they finally had a surgeon come to talk to me. They sent the surgeon who had removed my gallbladder so I felt very comfortable with him and trusted that if he reccomended the colectomy then I'd go forward instead of trying to avoid it like I did over 5 years before. They did the gastric emptying test and sitz marker and of course I failed. They told me that the key to this surgery was that they needed to get me cleaned out before it would be a good idea or else they were certain Id have to get a "bag". Weeeeelllllll here is the problem, I couldn't!!! I tried all I knew how and then I tried something that had proven to be very harsh on my stomach in the past but was worth it if it would allow me to have the colectomy and not make me have to have an illeostomy. It was called DULCOLAX BALANCE & I mixed it with gatorade. It took me two whole days of drinking before I even started to have a result and then when it started, it never stopped. I was nauseated, in pain, and just flat out sick but my system was actually cleaning out and I would not have to take the Go Litely which automatically made me vomit.
The day of surgery all they made me do was drink 2 bottles of the magnesium citrate and some antibiotics (pills) I got really sick the night before the surgery because I was so empty and they kept making me take those antibiotics but I had good nurses so I was ok, eventhough the phenegran did not work.
I did get all the way cleaned out and my surgery went well. It was only 3 hours. The surgeon said he left about 6 inches of my colon but the rest was useless. He did have to remove some mesh from my previous hernia surgeries and some stitches from my tummy tuck but I was okay with that as well. The worst part about my surgery was that I woke up with a tube in my nose down my throat (NG tube) and it remained for 5 days. It was the worst part of the entire surgery. While I was in the hospital I remained on ice chips until the tube came out and also I was receiving TPN (gross smelling vitamins & minerals through IV) and I kept my PCA pump (pain meds) until the last day so I could administer my meds every 6 mins with no help from a nurse. Anyway I had 40 plus staples that went home with me on the 7th day (they released me after 1 full week) No horrible stories of infection or anything to speak of, my story was a pretty good one. And although the tube was a bad experience, I'd rather wake up with that tube than for them to have to put it in there while I am awake. I witnessed them do it to my mom years earlier and it is horrible. So I won't complain.
So here I am 2 weeks post op, been home for a full week and I got my staples out today. i actually feel pretty good. Of course I am a little sore from the 10 inch cut but if that is all I have to complain about then I am just trying to make up something. After leaving the hospital, my stools were still very runny and I'd go almost every 2 hours but as I have started on regular foods, I only go when I eat and I can deal with that. My doctor warned me that I could have to go 8-10 times a day but I was willing to do that as well because anything would be better than not going for over a month and feeling as if I would burst and when I finally did go, it felt as if I would die and still didn't do anything but pinch off a little bit. Oh and some other great news, I have lost 40 lbs since the surgery and I feel better about the weight and am really excited to see how all of this will pan out.
So for all of the people who are contemplating the surgery. I think the best way to make the decision is to take a step back and think about all you've gone through and how dibilitating your issues have made you. I was spending atleast 3 weeks away from my family a year from being in the hospital alone not to mention laying in bed because my pain wouldn't allow me to move. I can't promise that your experience will be as easy as mine but I will say that if I had to do this all over, I'd do it with no thought. sorry I wasted the last five years trying to avoid it. Good Luck to you all!!!
I hope you read this as I never knew that you had responded to my last post. I am just now reading it and it is December 22nd!! and you wrote a wonderful post to me. So appreciative of that. It helps me to read it even now but I sure wish I had read it after my surgery. I somehow missed it.
First, may I say congratulations on your schooling! That is absolutely wonderful. I have 4 children in college so I understand how hard it is even when you are perfectly healthy. You should be so proud of yourself!!
I am doing well since the surgery. At first, it was like you describe, runny and I would have to go right away but it has calmed down since then and I can always make it to a bathroom if I need to. I even drove 5 hours away recently and went on a cruise that what a gift from my oldest son. I find that to be a big step in my recovery. I am still not eating meat at all or eggs and not too many vegetables but am getting there. That would be my only question probably? Are you eating meat?
I really hope you get this! You were so helpful to me. Have a Merry Christmas! and hope to talk to you soon!
and to MYNZZZ
You are the reason I even read this and I am happy to hear about your good results too and that you are happy you did it. I am so happy I had mine. I am so relieved not to feel so badly all the time and eating so very little. It's such a relief. I still don't eat much but that's ok, no more bloating and I can go!! I also lost about 25 pounds and am working on a bit more.
Good luck to you. I wish you all the best.
Thank you for sharing your story. I have to be honest and say that I started laughing as I was reading it. Don’t get me wrong, I was not laughing about what you went through, but I was laughing about the fact that almost everything you mentioned I went through. Yes, I took all of the medications you were given. When I started them (though some of them were not fun to take) I had high hopes because I was getting relief. Like you mentioned, I was only able to take them for a short period of time before they quit working for me. Once they quit working I got new meds or doses were changed and I went through the process all over again.
Trying to get cleaned out for the colectomy was a horrible process. By time it was determined that I needed it nothing was working for me other than being put under to have the disimpactions done. My surgeon knew how difficult things were for me because he was the one who did all of the disimpactions and was changing my meds. Because of that he decided I was miserable enough and opted to do the surgery without me being cleaned out. He did give me plenty of antibiotics prior to, during, and after the surgery, but I guess that wasn’t enough to prevent the infections for me. I have to say I am glad I did not end up with the NG tube, though there was a period where I actually asked for it because I got so sick while I was still in the hospital.
The weight loss was an unexpected benefit, I knew I would lose a little bit but not this much. I have reached the point now where I am not sure if the weight loss is still a good thing or not because I am still losing weight. My primary physician is concerned about my weight and is trying to stop it and get me to gain a little bit back. On average I am losing 1-2 pounds per week. I am 5’3” and down to 110 lbs. Prior to the surgery I was in size 11-12 pants, now I am in size 3-4 and those are a little big on me.
Now that you are a couple months out of surgery how are you doing? If you have any questions feel free to ask. At one point I was a little shy about talking about my poop but now I am comfortable with it and am willing to talk to anyone about it lol. Being 25 and talking about your poop seems a little odd for most people and there are days when it seems odd to me, but I would rather talk about it and help people than not.
Sorry I didn’t reply to you sooner, I didn’t see your message until today February 26, 2012. Not sure why I didn’t see it until now, but signed back into my account to look for some other information on a different topic (having issues following the Plan B pills). You are more than welcome for all the information I can give you. I am happy that I was able to help you through some of this and I am still willing to talk about anything regarding it with you.
Thank you, school was rough but I am happy that all of my medical issues didn’t interfere with it too much. I just started a masters program for counseling and am looking forward to the next 2 years of school to get that done. I am a bit healthier now so I am hoping school will seem a little easier this go round.
I am happy you are doing well following the surgery. I have to say the first couple months seemed the hardest for me, but I also had a lot of complications from the surgery so I really am hoping you don’t have to go through any of that. Congratulations on the 5 hour drive and cruise. That really is a big step when you are able to do something like that after going so long with GI problems.
I do not eat many fruits or vegetables due to my food allergies so on that I can’t really tell you what to expect. I do eat meat and eggs. I eat more meat than eggs but that is personal preference not for any GI related issues. I have been eating meets and a regular diet for a while now and really don’t have too many issues. I have noticed if I eat or drink much dairy I end up with VERY runny stools. I’m not sure if that is related to the colectomy or my lactose intolerance. Other than my food allergies, I am not following any special diet. I am supposed to because I am still losing a good deal of weight but I find it more enjoyable to eat what I want when I want instead of being told what and when to eat. The only thing I really avoid since the surgery is spicy foods. I have found that if it is spicy in my mouth it will be in my stomach, intestines, and when it comes out… That is not the most enjoyable experience. I have also found that tomato based products tend to increase the frequency and liquefy my stools but it hasn’t been bad enough to make me decrease who much I eat. I just know if I choose to eat it I am choosing to make a few trips to the bathroom for a day or 2 afterwards.
As I am approaching 1 year post-op (March 4th) I guess it is time for a review of my life and GI system. I am still battling nausea and the vomiting has eased up a little bit, but it is still there. My primary doc is currently trying to convince me that I will never have a normal digestive system, but things are SO much better than they were. My bms have slowed down a lot at this point. Oddly enough I still have some issues with constipation, but now at most I go 4-5 days without going. I can deal with 4-5 days so much better than over a month. I do have days when for whatever reason I have to make 5-6 urgent trips to the bathroom (don’t have many days when its more than that). On those days my stools are anywhere from slightly colored water to just runny consistency. I have noticed any time I eat lettuce it seems to come out the same consistency and color as it would if I chewed it and spit it out (I know that may be a little graphic, but at this point are any of us not used to that? lol). When I go a few days without going to the bathroom my stools are firm, but not hard. I do still occasionally get intestinal cramps but I do not get the pain I use to have prior to the surgery.
I currently am taking byntl (sp?) for the cramps, pepcid, viibryd to give me the munchies and to prevent constipation, and cymbalta to prevent abdominal pain (cymbalta does cause very watery stools for me, not sure why and my doc doesn’t really know either), plus I still take my promethazine and zophran for nausea. I am able to travel pretty well, I do have to watch what I eat and how far the next rest stop is if I eat while driving, but I don’t really have any problems with that. As embarrassing as it is, I have learned it is always good to carry an extra pair of panties. There have been a few times when I thought it was just gas and I have been wrong. That does not happen very often though, but I like to be prepared at all times incase it does. I have been lucky enough that that has not happened while at work. That is another BIG advantage for me. I am not in so much pain like I was prior to the surgery so I have been able to work full time. I question my sanity for working full time and full time in the masters program, but that is only due to the work load not anything from GI issues. I do find it a little embarrassing to have to go to the bathroom frequently while at work, but I would much rather do that than not go at all. I am still 100% happy I had the surgery. I have not once thought it would have been better without it. I still do not get the cramps, nausea, and diarrhea with my periods like I used to get prior to the bowel resection I had in Sept 2010. Still not sure why or how that surgery fixed those issues, but I am not complaining about it one bit.
How are you doing since you had the surgery? I hope everything is still improving. The weight loss can be a mixed blessing depending on how you look at it and where you are in general with your weight. You mentioned you don’t eat much, why is that? Just curious on your appetite, mine has been pretty low. I have days where I may only eat one or two small snacks and feel fine with that, but that is why my doc put me on the viibryd.
I wish you all the best of luck and health and hope to talk to you soon if we can get back into checking in a little more frequently. Feel free to email me anytime if you have any questions (my email goes to my phone so I will see it no more than a few hours after you send it).
I am basically never on here but got this today on my regular email. Thank you for answering me.
It seems like you are doing pretty well, all things considering what you have been through. One year! Wow, hard to believe probably. Mine will be in May. I do think your doctor is right, your intestines will never be the same. Your large colon is gone! and your small intestines have to do all the work - they get tired of that right? LOL
Salad is the hardest thing to digest so that is probably why it comes out like it went in. I haven't been eating salad at all because that is what was in my small intestine when I had my colon resection - a TON of it and the doctor told me not to eat that anymore, so I don't. I am glad you are eating meat. I still can't do that. I get my protein from smoothies my husband makes. Yogurt, protein drinks, fruit....
I would love to talk and share experiences but not sure how to do that because your email was blocked. I think I have to send you a private message. Will do that next.
I am traveling in March - about a 10 hour drive and I am nervous, farthest I have been and will be out of town for 10 days so will have to take foods I can eat as not everyone has them or grocery shop when we get there. I am also embarrassed about the bathroom at my in-laws place but there is nothing I can do.
Thanks so much for responding. If you read this, check your private messages too and I will give you my email.
Thank you so much for all your information and your story! I will be going in on Dec. 3rd 2012 to have a total abdominal colectomy. I am scared and yet looking forward to getting on a new road to a better life! Your story sounds very familiar to mine before the surgery...I just hope I also can say that I don't regret having the surgery.
I think you have help many people and I admire you for that. I am posting this almost a year since you first posted in here...But, I do hope you receive this and can update me on your progress. Thank You
Sorry it has been a little while since I have checked in on some of this stuff. I hope everything goes well for you and your surgery. As for me, things are still going really well in that department. I have had such a long battle of medical problems that I am now facing concerns with my pregnancy. But near as my doc and I can tell it does not seem very likely that these complications are from the surgeries I have had. If you would like any personal info or specific information from me feel free to send me a private message. I will do what I can but have been busy so I cannot guarantee that I will be checking this very frequently.
Thank you all for your honest retelling of your stories. I am getting desperate, and starting to consider surgery for my problem. Like you, I have tried all of the medicines out there, including the new one "Linzess" and they are not working. I too go two...three...four weeks at a time without ever really cleaning out. I really have quality of life issues at this point, but I don't know if it really gets better after surgery or just changes to new issues. Even those of you with major post-surgery problems still seem happier now. I'd love to hear how you are all doing now that it has been another year.
I saw your comments this morning. It has been 2 years since my surgery (almost) and I have to say that I am so happy that I had it. My life is so much better now. Yes, there are minor issues but nothing major for me and I don't regret it at all. My biggest issue is that I can't eat all the things I used to eat, but that has gotten better over time. and having to go to the bathroom has gotten easier too. I can tell pretty much how much time I have between eating and having to hit the restroom. Hope this helps some.
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