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Colectomy without jpouch or ileostomy bag
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Colectomy without jpouch or ileostomy bag

Hello everyone. I recently had surgery to have my colon removed and did not need to have an ileostomy or other surgeries to create a jpouch. The surgeon removed my colon and attached my small intestine to my rectum. That's it. Almost everyon out there has had more than one surgery or has the bag, am I alone? Looking for others to compare outcome of surgery with.
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Avatar_n_tn
Hi, please please please tell me more, I'm having the same surgery on the 15th of october, was meant to have it yesterday, 1st of October, but hospital had no beds. So, please tell me everything, even the gross painful stuff!
Cheers.
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Avatar_m_tn

Hi - I've already been communicating separately with Kazann - but, from your reply, I notice that you would like some information on the total colectomy surgery.

Well almost five years ago I underwent this operation for torrential diverticular bleeding and described my experience to another Medhelp patient on:-

http://www.medhelp.org/posts/show/523166

Have a look at this posting and do come back if you have any questions

Good luck
Morecambe
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637767_tn?1227583107
Hi. First let me say good luck with your upcoming surgery. Are you having the exact same surgery? Do you mind me asking why?
Well I had 2 fun filled days of prep, just to make sure I was clean because in the past those lovely gallon drinks of junk did not work. So I spent the first day at home and the 2nd in the hospital on more special drinks etc... to help make sure I was a clean as could be. The was just the beginning of the fun. I want to first say that everyones surgery is different. Everyone deals with pain differently too - just remember because something happened to me does not mean it will happen to you.
My surgery lasted over 5 hours long. They had a problem getting my colon detached from my pelvic area. I'm not 100% sure why at this point but it went well anyway. Just took a bit longer. Then I went into recovery and was sent to me room later that day. I don't remember much but at this point the nurse upped my morphine drip becasue of the pain I was in and it obviously was too much for my body to handle at that time because I ended up having a breathing emergency (which scared the poop out of me). I quess it supposedly is normal due to the morphine and the meds they give you in surgery. Sometimes your body just reacts and can't take it all in. What is scary about it - is you are so drugged you come in and out of it and there is all this excitement going on around you and you don't understand it. Like 9 or more people all dressed in dark blue outfits (i think they were all from respitory department) were suddenly hovering all around me. I remember this one nurse kept telling me I'll be fine..."we just dont' want you to bottom out" or you'll be fine..."we just dont want to lose you"...Aaaahhhhh! Talk about freaking you out. If i'm gonnna be "FINE", stop saying these other things. The only other things I remember about this was asking for them to please call my husband and get him back to the hospital and them telling me they were going to give me a shot that was going to counterreact what was happening and it would give me a huge migraine. I thought i begged them not to cause i hate headaches but I dont' really know if I did or not. Then I woke up in ICU and had no knowledge of getting there. They put me there just so they could monitor me better and had me on all the machines, to make sure my breathing was ok. I hate those things ... the minute you breathing goes slower the thing beeps, the minute your oxygen level goes down...the thing beeps...aaaahhhhh! I know it was there to help me but it drove me nuts. I was there for 2 days. Again remember it does not mean this will happen but if it did, i have been told it does happen to lots of folks just because of the meds. I'll pray it won't happen to you.
Getting back to surgery... while in ICU the nurses would keep asking me if I had begun passing any gas (i'm sure they will do this with you to). They keep after you to make sure that your bowels are waking up after the surgery. Finally at one point later in that second day ... I finally passed gas and when the nurse came in I told her and I also said that I wasn't sure but it felt a bit wet too. Sorry for the "gross" stuff. So they (2 nurses) decided that maybe I should use the potty in the room (a toilet that pulled out from under a sink...how weird). When I moved they said oh yeah just a little wet. The embarrassment begins. And it gets much better from here. So I go to get up from the bed to use the toilet and a Waterfall happens and I have no control what so ever. #2 flowed down both legs, hit the floor like a storm came through and I just stood there so frozen by this unbelievable "OMG I can't believe that just happen" feeling. I also remember feeling "like great, this is what I have to look forward to". I was a bit depressed about it. The nurses on the other hand didn't seem phased. So... you may or may not have "accidents" in the hospital and at home the first month or so. I'm out 4 weeks now and I occasionally still leak a little bit if the stools are too soft. At first I had nothing but very loose stools and they have begun to thicken up now that i'm eating more of a regular diet. For me... I seem to go back and forth and it makes it feel like I can't leave the house much. I've only left to go to the ER and to the doctors for follow ups. It seems that every one has a problem with the stools thing. All I can say is just be patient with it, take it day by day. Take it all day by day and remember you will have just gone through a major operation and you need to cut yourself some slack and realize it will take some time to heal.

So the rest of my hospital stay was pretty uneventful. You go to the bathroom a lot. They make you get up and walk, which at first you think "you're crazy, I can't do that" but you do and you do a little more each time. Just do your best. I was offered solid food on the 4th day and I looked like I saw a ghost when the dr told me I could have anything I felt like eating for supper. I couldn't believe that I was allowed to eat yet. I did pretty good and the next morning had breakfast and my biggest problem even before eating was dealing with feeling nauseous (sp?) (i misspell that word every time). The good thing about being in the hospital if you still have your IV is that they can give you good stuff for that.On the 5th day I had to have my IV removed and did not allow them to put another one in because they couldn't stick me. My veins werre not cooperating Funny story about that... they had to remove two of my IVs because they were no longer working and needed to give me another one so at like 4 a.m. the nurse came in with a "VEIN FINDER" sorta like a stud finder. She shut the lights off and began searching with this thing for veins that she might be able to use. I was absolutley horrified. Here i am thinking this woman is going to stick me in that dark when they can't do with all the lights on. Turns out they just use the machine to find the area and turn the lights back on to stick you....aaaawwww Thank God. She still couldn't do it. I huge nightmare for me. She ended up sticking me with the smallest needle possible and then within a few hours it wouldn't work and they had to take out...at which point I said "NO MORE IVs". So later that day there was not much more any one at the hospital could do for me that I couldn't do at home, so I went home. I was sorta happy but very scared to leave the place where the nurses and doctors where.

Recovery has been rough. For me i've had a ton of what I believe is muscle pain. It feels like I'm so bruised from the inside out and someone is pressing on it. The soreness/acheness is really very hard to explain. I'm sure you'll see what I mean. Please let me know how you feel after your surgery. The first few weeks are very tough to move around. I find that once I'm sitting up in a straight position even though I feel fine while there I hurt like hell when I'm ready to lay down again. Taking a shower is still tough for me right now. I think it is just because you ache so much, you lose muscle mass and it is a catch 22 kinda thing. You need to be moving more and more but it hurts to move.

(needed to cont..in new message below)
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here is the message continued..... I might need to do this again because it only allows so many characters....

The only other thing I can think to tell you about my recovery time is that my first full week after being discharged from the hospital was a nightmare for me. I hate feeling nauseous/throw up feeling. There is not a whole lot more that makes me want to cry than the feeling of throwing up. Well I was like that all week and never did anything until that Friday. I feel for you ahead of time if this happens to you. I for some reason couldn't get it under control and felt so lousy. On Sunday early a.m. like 2 ish I went to the ER to get some relief. I knew from previous experience they have this drink they can give you that will numb everything from your mouth to your intestines. Gives lots of relief. They gave me something for the nausea through an IV and gave me fluids for a little bit of dehydration. Within a few hours I was good to go and went home and tried to sleep it off. That day ended up for the most part being the worst of that round.

My next battle was fighting the blues. I had several "break downs". Some of which I know where just because I was so uncomfortable and miserable that I could do nothing but just let it out. Other times I had no idea why i was crying but do know that after any surgery (especially something this big) it is normal to have post of blues. This has come and gone. You kinda don't know when it will hit next. Just remember take it one day at a time.

The next big battle was sleeping. I couldn't get comfortable so I couldn't sleep. I ended up having to get sleeping pills for a few weeks just to get some rest. You need to sleep to help your body heal and if you're not sleeping you're going to get depressed. Make sure you let you doctor know if you need help sleeping

So here I am on week 4 and I'm doing better. I take it one day at a time like I said. The bathroom trips some days are really bad and other days I can handle it well. (one more thing about the bathroom trips... before your surgery go out and buy yourself some nice "butt paste", something that will put a protective barrier between you and the acidness of the stools and something that will help with all the wiping you will be doing)All I can say is "my butt has never seen so much action and boy does it hurt sometimes. Once the movements slow down, it will get better but being prepared will only help you. Ask your Dr what will work best. I know some people say use baby wipes to help with clean up too. Your Dr should know what will hopefully work for you. The important thing is to make sure you have a good solid barrier at all times proctecting your skin. I told my doctor if I knew someone who was having this surgery I would put together a "butt basket", you know instead of a gift basket, for them. He laughed but I'm serious. No one seems to warn you about this issue.

I'm still having good days and bad days but at this point the good are out numbering the bad. A sign to recovery. I hope I didn't scare you. I just wanted to tell you my story becasue I know I tried to find people to do the same for me before I went in for my surgery and had no luck. I still feel like I'm out in left field because I don't feel like I have anyone to talk to about things except for my doctor and although I know he knows what he is talking about..its not the same as talking to another patient. I wish you the best of luck, please keep my updated as to how you make out. If you have any other questions just ask. If you feel more comfortable talking more one on one, more private setting... I can give you my email. Just let me know. If I don't talk to you again before your surgery ...good luck. I'll keep you in my thoughts. Just curious ... where are you from? etc... tell me a little about yourself and why you are having the surgery. I live in NH and had the surgery after 20 plus years of suffering with giardia, IBS, colonic inertia (which is a slow moving colon) and in the end it was moving so slow it was barely working. Nerve damage took place or something. So that's my story, again I hope I didn't say anything to scare you. It is the best thing I could have done and I know I'll be better off for it. I'm sure you will be too. Take care. ~Karen
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Well I was able to do it in 2 post.... So good luck with everything. ~Karen
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Hi, I have had 2 colon resections, recovering from the 2nd and adhesions on the small bowel, I was encouraged about this surgery. Its different than the J pouch, do they do it everywhere or only where you are from. I am almost there because I only have a little of my colon and it just is dead. I wish I had what you had done. Its so tough I have been at this for about 7 years now. I don't know how much more I can take.
Thanks for the info.
Nancy
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637767_tn?1227583107
Hello... I'm sorry to hear that you have had to suffer so much. I'm not 100%  sure what you are asking but I'll take a stab at answering you. Have a total colectomy and just having the small bowel attached directly to the rectum in one surgery like I had done did not involve having a ileostomy bag or a J pouch. I quess I was lucky enough not to need either. I don't know much about the J pouch but from someone else I've spoken to she told me she didn't understand how they could do the surgery the way that they were for me. She was so convinced that it was weird that she suggested I question my surgeon about it. Which I did and I was told that I was fine to have the surgery the way we discussed and that eventually the small bowel would learn to behave as the large one had. Obviously they (the Drs) never know until they actually get in surgery as to what they will find, which can always change the outcome. My surgery, lucky enough, worked out the way it was planned.

Now I don't know where you are from (I'm in New Hampshire) but I would ask questions about what your options are. Most folks that have had this surgery (that I've read about anyways) seem to have had many operations. The first being where they do the total colectomy, whether open or laproscopic, and then create an ileostomy. The second being where they create a j pouch and usually so that the j pouch will have time to heal the third operation is to attach the j pouch and remove the ileostomy.

I hope that I've answered your question. Take care and feel free to ask anything else, I'll do my best to help. Good luck. ~Karen
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Avatar_n_tn
I had total colectomy march 2008. The hospitalization was rough for me. I had problems with my small bowel waking up. I needed a NG tube two times and needed feedings through my veins. I was in the hospital for 2 weeks. I had the problem for the first week with no bowel control so I need to use adult pullups. This was disturbing because I was afraid this wouldn't get better, but it did and I didn't need to wear pads or pullups after the third week or so. I had my surgery all done at one time. I had significant spasms for the first 6 weeks. At the 7-8 week mark is when I started feeling better and returned to work. I would get tired quickly and it took time to build up my strength. I lost 22 pounds in about 3 weeks before and during my hospital stay. I really didn't have 22 pounds to loose. Now I'm having problems with my small bowel because I have been diagnosed with Profound Bloating Syndrome. They feel this is what caused my large colon to go bad. So now I'm having surgery again at the end of October. I have to have gastrostomy tube place this coming Friday to deflate my stomach from the distention. I'm 7 months out from my colon surgery and recovered quite well from that. I'm glad I had the surgery because my colon was giving me so many problems and caused me to be rehospitalized frequently. Just remember that everyone is different. My doctors tell me that it take 11/2 to 2 years to fully recover from bowel surgery. I hope you continue to recover well. Each month that passes it does get easier.
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hello all, i just had my surgery and had my colon removed because of colitis..i must say its a living hell!!!i wish i would have not gone along with all this..i had a very bad experience the last 7 months with non stop bleeding and sitting on the bowl non stop 10 times a day..but the pain of the operation is unbearable for me..i have non stop gas pain..and the bag they have attached to me is horrible..i use to be a beautiful woman now i have turned into some sort of a monstor i cant even bring myself to look at my poor body..all the suffering and diets ands exer i did to keep a good figure was robbed of me with this ugly smelly awful bag!!! tehy say i have to walk around with this a good 4 months..i can timagine having to go to the hospital again and doing this all again..i was mistreated in the hospital by the nurse there..she forced me up while i told her i was too weak and made me get up..i got up alright..and hit the floor and pop went a stitch!! i went into this awful state where i was unable to move anything my hands froze up tight as did my legs and the nurse was standing there telling me to get up!!! i was at last rescued by a compassionate nurse and a visitor who were kind enough to realize i was too weak to move after just being given 3 bags of blood..after that i wanted to come home..i am home now with daily nurse visits..i have been home 3 days..i feel very weak still but more comfortable here..i wish i knew what to do about the gas pain and the inflamation (inflammation) i am experiencing..i have so much flare up i look as a lop side pregnant woman..its strange how its all to the left side..please pray for me..i need all the prayers i can get      
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Hi, I was just wondering if you've had your surgery? I hope all is well. Let me know how you are doing when you feel well enough to be online. Take care. ~Karen
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Hi mozhe... did you just have your surgery? I'm sorry to hear about how bad things are going for you. After my operation - 6 weeks ago at this point- i had a huge problem with major gas and inflamation (inflammation). All i could do was take gas-x because non of the other meds would work on me. It would help a little but not nearly enough. It got so bad that I ended up in the ER just so they could give me some meds to numb everything from the mouth all the way down. It helped for a while, long enough to give me a break from the intensity. While I was there they also gave me some stuff through my IV. I was okay for several hours and was able to get some much needed sleep.

Unfortunately, i'm not sure what other people think, but i think it just takes time to get through that first few weeks of hell, when you feel like nothing you do is helping. I know I was pretty bad off. I would just cry and my husband felt so helpless because there was nothing he could do to help me feel more comfortable.

It sounds like you have a bad experience in the hospital too which i'm sure doesn't help your overall feelings. I had a bad experience with a charge nurse the last day i was in the hospital and even though the whole visit (generally) went well - that last incident but a bad taste in my mouth about the hospital stay. I'm glad that you were atleast able to get a compassionate nurse to help you out.

So again, about the gas and inflamation (inflammation), just hang in there and if you can take something like gas-x that might help. I also used a heating pad to help with some of the discomfort, just make sure you don't burn yourself. One more thing is to watch the foods you eat, like for me I can't eat fresh fruits and vegetables without getting gas. Which was much worse a few weeks ago. Try to keep an eye on which foods might be bothering you and avoid them till you're feeling much better and then try to reintroduce them.

The last thing is I know that having to have another surgery is not good to think about but try to stay positive about it... you'll be able to lose the bag. That's a plus. I know it is all much easier said than done but try to have faith that you'll fell much better some day soon. I will keep you in my prayers. Take care and keep in touch. ~Karen
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To answer a previous question, the J-Pouch is required when you have a diseased rectum.  When you have the colon removed they will also remove the rectum.  The J-Pouch is actually a new rectum sewed together from your small bowel.  The after-surgery part would likely be very similiar to connecting the small bowel to the existing rectum.  I had the J-Pouch surgery 15 years ago.  I didn't have a choice as I had mega colon and had perforated.

Mozhe, it will get better.  When I had my initial surgery they did not do the J-Pouch because I was so sick.  They gave me the ileostomy and because the pathology could not determine for sure whether it was Crohn's or Colitis I had to wait a year to ensure I didn't get sick again before they would do the J-Pouch surgery.  So mine took 3 surgeries with the 3rd being the take down of the temporary ileostomy.

Once you are done your next surgery you will have some of the problems mentioned above but after the first few months it gets much improved.  The advice about a barrier cream is very good.  Immodium will become a good friend of yours.  Your diet will change.  Things that are high in fiber, spices and sugar will loosen your stools.  Things like marshmallows, apple sauce, oatmeal and protein sources (eggs and meat) will bulk up your stools and help to reduce the number of movements in a day.  Good luck with everything.
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Hi...thanks for elaborating about exactly how the J-pouch works. I sort of got some of it from my dr the last time I saw him. I had explained to him that I was trying to speak with other people who had a colectomy and mostly kept meeting folks who have had the J-pouch surgery as well. I iniatially posted this question because i just wasn't sure if I was even close to being in the same catergory with those of you who have had many more surgeries. I came to medhelp to communicate with people about the things I was dealing witth, etc... like the muscles soreness, the pain, the fears and found that there were so many folks that seemed to have been through so much more than me (surgery wise) that I almost didn't feel right complaining (talking) about how I felt. I've kinda explained like someone with Brain cancer talking to someone with lung cancer and them saying they feel exactly the same way. Yes, they might be going through the same kinds of things but they are two totally different cancers and I'm sure (cause I don't know personnally) that they  have different symtoms (symptoms). I'm sure you know what I'm trying to say. I want to be able to offer suggestions or information to others on the site and also want to be able to ask things about my own surgery and feel like other's aren't feeling like "hey, you didn't go through what i've been through so...."or "you don't have a J-Pouch so who are you to offer info" etc.... Do you know what I mean?

So, having said all that. How are you doing after 15 years? Hopefully all is well. As I said in an earlier post I'm 6 weeks post op and for a while there I didn't think i was gonna make it. I really wanted to just die and get it over with. Especially the first few weeks. Then the muscle soreness and pain all throughout the abdomen was horrible. I couldn't stand up straight, it hurt to sit or lay down. I just couldn't get comfortable right up until about a week ago. I'm doing much better now. I even went out for a long drive and walked around to take photos of the foligage today. I over did it a bit but it was well worth the trip out of the house.

Do you have any issues that have lasted long term? Do you remember when you really started to feel yourself again. I've heard 6 months to a year from my dr. Some people online have said up to 1 1/2 - 2years. WOW. I hope not. I'm so excited to just get my life back a little bit more each day. That's all I can focus on is today but i'm hopeful that it won't take quite that long to recover fully.

Thanks for responding and again I appreciate the explanation. Take care. ~Karen
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I'm a 59 year old male who had my colon removed and small intestines attached to the rectum at the end of July,08. Like some others have said the surgery and post surgery factors are different for each person but you can get an idea how recovery will go. I had three prior colon resections due to pain and obstruction. Then i started getting obstructions every three months like clock work from the colon twisting on itself. The doctors decided I should just have it removed and after all the pain I agreed. It took me awhile (over a year) to make this decision since I wanted to get other opinions. My surgery took over 4 hours and I couldn't be cleaned out because I had obstructions in both the colon and small intestines when I went to the ER. My surgery went okay but i ended up with some unknown infection (probably from leakage since I was not cleaned out before surgery). This was a tough one unlike the previous three when i was out within 5 days. I was in this time for 27 days and didn't eat for three weeks. Finally I was so weak they fed me through a NG tube in my neck. They put me on every antibiotic they had before giving me there strongest one which finally worked. After going home I lost another 10 lbs plus the 25 I lost while at the hospital. I was so weak at home I didn't think I was going to make it. When I went back for my 2 week follow up I had to be wheeled in a wheel chair since I was to week to walk. They thought about keeping me in but decided since I had the infection while there it would be better to stay home. They gave me iron pills and something to stimulate my appetite since i didn't feel like eating and was still losing weight. After about four days I started eating and slowly gaining my strength back. After 5 months post surgery now I have gained back 20 lbs of the 35 I lost. My stools are still like diarrhea and I go about 5 - 7 times a day. I've had a few accidents/leakage during the night which is tough for me to handle. I have a hard time sleeping thinking I will leak and it's wearing on me. I do feel pain and bloating still from gas but it is better than before having the surgery. I have been having this problem over 30 years and pain pretty much daily.  I to have to be aware where the restrooms are and have not taken any out of town trips. I just don't feel comfortable and didn't even go to friends house for 3 months. Now I go to the gym and do local things. My bowels make these very loud sounds all during the day. At times it sound like water running through a pipe and other times like a loud growl even though I have just eaten and not hungry. Don't know how long this will go on but it's very loud and embarassing. Does anyone else have this? This is what I'm currently going through 5 months after surgery. If I can get the diarrhea to be formed stools I would feel better and not worry about leakage as much. This is a humbling experience but I'm alive and thankful. I'm glad I found this site as it helps to know others can relate to what you are going through. At time it feels like you are alone because no one really understand the pain and what we are dealing with. I don't think doctors can appreciate what we are going through either. Sometime I think they don't beieve what I'm telling them eventhough I'm not one to complaine about pain and very rarely take pain meds. I don't want to get dependent on pain meds. I was told my small intestines would start adjusting and acting like the colon in 6-12 months. I hope it happens sooner rather than later. Good luck all and hang in there.
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Avatar_n_tn
Just wanted to add my thoughts and to try and reassure people.
I had a total colectomy because of megacolon. it was back in 1988 and I was one of the very first to have the op where they attach the small intestine straight to the rectum (no bag needed).
I was in hospital for two weeks, then at home sore for a month or so, but only sore cos of the big slice down my tummy. Once that healed, I had no problems. And I've had no problems ever since (21 years now - I'm 45). I eat what I want, when I want (whereas before the op I couldn't do fried or fatty food etc - got terrible pain in stomach).
I can honestly say that apart from having to poo two or three times a day (and it has never been solid - sorry to be graphic) it has had no bad effects on me at all - in fact it completely changed my life for the better. So although I'm sure some people have a hard time afterwards, it is not always so - and i was one of the early guinea pigs!
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Avatar_f_tn
You really have been through to hell and back, you are very brave.
I have also had colon surgery, and after 2 months am still trotting of to the loo every 15 to 30 mins in the morning, in between I leak a little, and have to wear a pad,though in the afternoon,I seem to be able to hold myself longer though I have no idea why
Does it get to be anything like normal again? I just hate the thought that I am going to be tied to the house all the time forever. Feeling like I do, I just cant make any all day trips anymore.
I am glad I found this forum as it is very supportive and helpful.
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Avatar_m_tn
It does get better with time and trying different eating habits. I'm now nine months post surgery and I can control myself pretty good during the day. I tend to have about 3 BMs between 10pm and 3am each night. Kinda scary going to bed before 3am since I don't know if I can control my bowels. I'm starting to do better if I eat more fiber and not eat late. I make like have day trips now and feel ok. I still need to be around a bathroom though since I never know when I have to go. My stools are still liquidy and I don't know if or when that will change. The doctors told me it may not get any better. I want to take a 7 day trip at the end of June but kinda worried about the 5 hour flight and then the daily sight seeing. I'm trying different things but what works one day doesn't work the next. Maybe in two months my bm's will change, I hope. Hope you are progressing well. Give it time and try different foods. Keep a diary of sorts so you can tell what works, unlike I did. Take care.
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Avatar_f_tn
There are a lot of doctors now doing the surgery in one step.  These doctors are on the cutting edge of medicine, be grateful you had one!  It's modern medicine at it's best.  Relax and enjoy life, you've got the best!
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I agree with kazann34.  You have to be careful of what you eat after surgery, and learn what causes the gas.  I'm sorry to hear about your problems, I've experienced some of the same.  I know you hate having the bag, but it is temporary, and you are alive.  My 10 year old grandson had his colon removed at 10, then 38 surgeries by the time he was 16.  Then he developed a 38lb tumor, it was removed and he was dying.  Ten days before he would have died, a set of 5 organs came thru for him.  He died four times during the surgery, endured Stage II organ rejection, could not go outside or eat anything by mouth for a year.  He had to hook up to IV feedings at night while he slept.  This boy always smiled, and never complained, you see he lost his dad to the same disease when he was 9 and realized how precious life is. He missed out on all the things that go along with being a teenage boy.  He missed the football games, Homecoming, Prom, couldn't swim, couldn't drive, etc.  Still, he never complained, and if anyone had a right to, it was him. He viewed every scar on his body as one more battle he had won. Last fall he had 1 last surgery to endure and this was to remove the 2 bags he had, ileostomy and colostomy.  The doctor wanted to wait until after Thanksgiving so my grandson could enjoy dinner, as last Thanksgiving he was not able to have anything by mouth. He called me one day at the end of November, he was down, not because of what he had been thru, but because he was missing his dad.  We talked for about 45 minutes about his dad, who was my son and made plans to go Christmas shopping the following week. As we were hanging up he said "I love you grandma, and I said "I love you too sweetie."  We never got to go Christmas shopping.  A few days later he started vomiting blood, his bags filled with blood, he was rushed to the hospital where he bled to death on Dec 1st. he was 18. They had to perform an autopsy to determine what caused this, but I could not bear to hear any more of his suffering and did not attend the reading of the autopsy.  This young man always found a reason to fight, he saw the value in life.  He had a smile that lit up a room, and was always making others laugh. He was the light of my life. I feel badly for people who have to endure so much suffering, but find it difficult to understand how one can put so much emphasis on what they have to endure for just a few months, especially cosmetically.  My grandson would have gladly traded places with you, as it wasn't about his looks, it was about life, and his little brother who still sobs at night, missing him so, and his mom.  Try to count your blessings, there are so much more important things in life than having the perfect body.
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Thankyou for the moral letter. I always thought fibre helped with constipation to make the stools soft, maybe I got it wrong. For the last week I have been a fraction better. I eat nearly every meal mixed with  with rice or macaroni, sometimes potato.hopefully things that will help block me up. I try to put protein in the meals with either chicken,fatfree meat or fish. I still eat salads and fruit, but dont eat any beans or lentils. As you said one has to experiment, on what to eat.
It's going to be tough, a 5hr journey, but at least there are toilets on the plane, make sure you pad yourself in that area in case of leakage, and take extra padding in case you there is leakage. I guess in cases like ours, we have to try tactics that will or wont work.
I have an awful lot of gas (why does this happen I wonder) I find just by coughing or letting out gas causes a 'mistake'.My doctor says this is all normal, which isn't much comfort.
I hope you enjoy you holıday, I am sure you will adjust to whatever situation you find yourself in, cheers.
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just trying to get involved with you all.  I suppose right now only for selfish reasons..I was diagnosed with UC in feb 2009...been on and off pred..I'm fairly good till I get down to 5mg...Each time I get down to 5 mg, (pred), seems to start back up..I'm also on imurin, lialda...anyway, i'm down to 5mg pred, seems to beginning to come back...last time this happened,,he raised me back to 10mg for extra 2 weeks....any suggestions ....is colectomy inevitable...thanks for all and everyones time...this whole "community", is appreciated...by the way i'm soon to be 58   thanks again
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Had a colon resection on Dec 21/09 and am now 3 1/2 weeks out from my surgery.  It was difficult...very difficult but I had no choice.  Today I am still extremely weak, cannot figure out my new normal in regard to bowels, and my belly hurts.  Sometimes I have 20 bowel movements a day and then other days I have none.  I have a hard ridge underneath my scar...sort of hard knots which are quite tender.  I am slightly discouraged and still can't understand why I feel so bad...I am 56 and in good shape.  But I feel like crap....and just hurt.  I want to stay in the fetal position. I lost tons of weight and I had absolutely no extra weight to spare...I get tired of hearing how bad I look b/c i feel as bad as i look.
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Hi. I'm sorry to hear you are having difficulties in your post surgical time. I just wanted to let you know that I too had ups and downs as far as amounts of potty trips when I first had surgery. I still have this problem. Some days are light and some days are just crazy. You are only a few weeks out and I think it is so important for you to give your sefl the time to heal and not rush it. Not to discourage you but it took me the first 3 full months to really start to feel even somewhat normal again. It will take time and evey day you'll get a little stronger and feel better. Then there might be days that you feel 'wow, why do I still feel so horrible' but i think that is normal. I went through that for quite a while. I understand about just wanting to lay down in the fetal position and not move, just like I said take time and be good to yourself. Your body has been through a lot. So I can't be of more help but hope you feel less alone. Take care and hang in there!
~Karen
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Thank you for listening to me complain and for your encouragement...I just keep hanging in there.  My belly hurts and I want to feel normal.  I am now 4 1/2 weeks into recovery. I wonder if a heating pad would help?  I just had no idea that I wouldn't feel okay by week 4...I just want to stay stooped over and stay perfectly still.  Thank you for your encouragement. Becky
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Hi. I know this is way past your original post date, but I had the EXACT same surgery done in January of 2011. I had severe constipation for almost 30 years and nobody could figure out why, so I finally had an appointment at the Cleveland Clinic. The surgeon there was wonderful. Did the same procedure. Stayed 5 nights and went home. I am doing absolutely WONDERFUL. I would recommend the procedure to ANYONE!
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Hi There...I was diagnosed with UC in 2000. I went through years of  low and high doses of prednisone and sulfa drugs. Nothing stopped the flareups, cramping, bleeding and urgent bowel movements. I felt totally isolated and didn't like going anywhere. If I did go anywhere, I made sure I knew where every bathroom or porta potty was located. My doctor even suggested that I try IV predisone, but even 5 days in the hospital on IV's did nothing for me. I absolutely hated the stuff...I gained about 50 lbs, my skin was thin and I couldn't sleep some nights because I felt like I was burning up. I was wondering if I was going to get colon cancer or have tons of serious side affects from the prednisone. I agreed to try Imuran but  I was deathly allergic to it and ended up with pancreatitis and a rare diease called Sweet's Syndrome. I was in the hospital 9 days. I finally opted for an illiectomy as a last choice, but was so happy that I would no longer be on the prednisone that I didn't even blink. Then the doctor told me that I could have a pouch restructured in a second surgery. Yippee...what a bonus. The 2 months of having an illiectomy and having to wear the appliance bag was challenging but I just looked at it as having a new knowledge in how things work and what experience I could get. I tended to "empty" about every 1/2 hour. Seemed like whatever I ate went straight to the bag. I also had gas and had to "burb" the bag often. I ended up dehydrating from emptying so often. Spent many, many days in the hospital on IV fluids, sodium, magnesium and calcium to keep me from having all over body cramps. They put in a PIC line so I could just go in and get hooked up...my doctor was wonderful in helping me get everything set up through the hospital. After two months I had my take down surgery in Eugene Oregon and went home 6 days later. Butt Paste is a necessity because the acid from the digestive track is more concentrated and can begin to burn, plus it helps protect and heal irritated anal skin and then  Metamucil helps me from having watery stools. It bulks up and firms the stool. Even Vasilene ointment put on toilet paper before wiping keeps senstive skin from hurting so much and sitz baths work wonders.I have still had to go to the bathroom about every hour or two but with BIG differences from the UC days...No bleeding, no prednisone and now if I have an urge to go, I actually can hold it for 10 to 20 minutes to get to a bathroom. I still do Kegal excercises to keep the anal muscles tight and I keep panty liners on hand just in case. I hope this will help some of you with your concerns. Yes....if I could do it again....I would definately do it all again. I am social and go places again....Email me if you want..Make your subject "UC"
***@****
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How is control of your BM's ?? Are they they same as everyone else where you have to wear pads?
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One thing I havent seen asked.. how has this surgery effected your sex life? Once you have been all healed up are you able to have sex without losing control of your BMs???
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I am 34 yrs. old. I have been living with an illiostomy for 7 yrs now. I was diagnosed with Crohns disease. I had a total colectomy, two years later I had a sm. bowel ubstruction. Ya, I know its alot but I still want something done to get rid of this ostomy, I hate it. I live in Akron, OH, my surgury was done in Akron, OH by Dr Joel Porter. Everytime I see him, I ask , how can I get rid of this? His reply has always been " I will do nothing I think its to risky if you want something done, I advice that you go to the Cleveland Clinic in Cleveland OH." If something would go wrong, keep in mind that you are over an hour away" For 7 yrs now I am still embarrased that I have an ostomy and find it exhausting to be constantly hiding it.
  The other factor that I am dealing with is, that I want a baby and if I would go ahead and follow through with this, I know that is pry out of the question for quite some time. My husband and I have already been trying for a good year and half but have had no success yet(using fertility treatments)
  So I guess I am on the fence about the resection  now just a little, I am sheduled for a scope of my rectum and sm. intestine on the 23 of Nov.
I am In need of some advice Should I even consider this surery or is impossible? My surgeon said that all the disease has been removed, and actually I have had no problems since the surgeries. I do know that I want to pursue this pregnancy thing, but i dont want to think what if, if something can really be done!!! HELP
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Go to the Cleveland clinic or Univ of Mich.  See a few doctors and get several opinion about the reversal.  If you get two like opinions, then that is likley the advice you should follow, whether it is the answer you want to hear or not.  Not knowing you medical history, I don't see a reason you cant have a reversal.  I had a reversal 8 weeks after having 14 inches of my colon removed and 3 inches of my rectum.  I have a very good friend that had hers reversed after a few doctores told her no way.  We both have inertia after, and risk of blockage, but otherwise fine.  Talk to the sugeons about  wanting to get pregnant as well.  They will tell you best.  I would ditch the doctor you have now, it doesn't sound like he has the skills to help you.

Best of luck to you.  
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Has anyone had there large intestine removed and had their small intestine attached to their rectum for colonic inertia and ended up with constipation after surgery? I heard that is a risk factor. That you can get the surgery but there might be a chance you will have constipation again one day. Also has anyone had their large intestine removed for colonic inertia and then their small intestine eventually give out on them? What happened then?
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So had a special doctor visit after hours with some of the staff (gi specialist and colon surgeon) at a hospital I have been having all these tests done at. They talked to me about all the results and all that I have told them and they feel I have 2 issues going on

1.) Colonic inertia = constipation/slow transit
2.) SIBO/IBS

they told me that the only way to be sure if the large intestine is working is to do a temporary jpouch for about 4 - 6 weeks. Test the waters and see if I feel better without use of the large intestine. If I do then we know the large intestine is to blame and they can remove it. They told me that they would remove the jpouch and the large intestine and then connect my small intestine to my rectum.

Did anyone else go through this before having their large intestine removed. It means 2 surgeries for me.
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I had a MI in April 2002 and lost 21 inches of my bowel. 10 years later, they are still loose. Unexpected and very loud. I can take 8 or 10 imodium (immodium) just to go grocery shopping and town once a week. I must know where all bathrooms are at all times, and this has been my life for 10 years. The more I eat, the more I go, just like a baby. I do not visit at night due to this fact and the loudness of some of the events in the bathroom. It seems to be more ordorus or stinky since it does not stay in long enought to get fully processed. No match and floral spray and poo smell just don't get it if you are visiting, so you become isolated, depressed and a hermit at night. Wish it would get better but there's no hope, sorry this is my life from now on
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I had previous left-colectomy for severe constipation. My left colon was always loaded and bloated causing discomfort. All tests i.e. colonoscopy, Barium enema, rectal biopsy etc were normal. However no transit study, rectal manometry were conducted before left-hemicolectomy. A repeat barium enema reported 'grossly dilated and redundant sigmoid and descending colon but normal transverse and ascending colon'. Operating surgeon made a mistake and he did not take out whole of sigmoid colon.

My condition improved but I had to strain to defecate for an average 20-25 minutes. I always felt that my rectum was empty.
I went through more tests like rectal manometry, nuclear transit study which showed held up in recto-sigmoid colon. I planned a high-anterior resection with a surgeon in India for removal of 3 inches of remaining segment of sigmoid colon. but this mis-guided doctor out of his wild imagination did a J-pouch rectal anastomosis. He took out part of my healthy rectum and on top of it made a J pouch (15 cm long). Now I am experiencing that my rectum has become redundant (except when stool is watery) and stool is primarily stored in illeal pouch.This gives me a feeling of being constipated and I feel I have to strain to push stool from pouch to rectum.
Can anyone advise me, would it be a wise decision to get rid of this un-necessary  pouch and have an illeo-rectal anastomosis done? I have 14 cm of rectum left.
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Hello:

I had UC for 12 years that was not responsive to treatment.  I ended up on 80mg or prednisone, 15 pound weight loss [was already "skinny"] and could not keep anything down except a few sips of water.  I had bloody stools, emesis, cramping, and was in pain 24/7.  I ended up having surgery with Dr Bruce Harms in Madison.  Two surgeons performed a total colectomy with a J-pouch, which took 5 hours.  I had a temporary colostomy for 3 months, and then had the colostomy take down surgery.  This was in 2005.

Since then I have had several hospitalizations for bowel obstructions and another surgery in 2009 for a hernia repair and bowel obstruction.  Even though I periodically end up in pain and hospitalized (every 2-3 years), I have not a single regret.

I have about 6 BMs per day, rarely are in pain, can eat almost anything, have rare incontinence, and essentially have my life back.  

If you are an Ulcerative Colitis patient who is being advised to consider this surgical procedure, it is my opinion that it is worth it.  Yes it is more than one surgery, expensive and takes months to recover...but for me it meant being able to live my life and immensely improve my quality of life. I believe I might have died without this procedure since I was so ill and malnourished by the time I had to the first surgery with the total colectomy.

---Former UC patient in chronic pain and not responding to treatment  but now happy and carefree

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I had a laparoscopic colectomy with ileorectal anastomosis surgery at the Mayo Clinic on January 18th for slow transit constipation. I was suppose to be in the hospital for 1 week and ended up there for 3 weeks. I formed an ileus.. the most pain I have ever felt in my entire life. I was on decompression tubes.. one in my nose/throat to my stomach and the other inserted in my rectum through the small intestine until my body could do things on it's own. Before the tubes I was vomiting bile. I was on morphine drip and it still was not enough for the pain. It has been aweful. Now I am home and no more narcotics.. just tylenol which to me does nothing but I understand that the narcotics are not good on the stomach. Did anyone else form an ileus? The surgeon told me that it happens to 10% of people and that the type I had was very rare. He also scared me when he said there was no guarantee it would not come back later on.

I also formed a blood clot in my liver so now I am giving myself Lovenox shots in the stomac every morning. I go to a doctor on March 9th to start coumadin pills. Because of this I had to stop my birth control. They believe it could have contributed to why I got the blood clot during surgery.

I am going more frequently (which is great from never going at all or feeling like your being ripped apart when you go) but because I am still on the liquid diet the bm's are also liquid. From hearing other people's stories I am surprised I do not got a million times a day. How much I go is pretty tolerable. I am behind as far as food.. I should be on week 4 introducing foods etc but instead I am only a week into things. The doctor sortof started me over after the ileus cleared so I am still on liquid/soft food.

Now its a matter of trying to deal with the aches and pains and these cramps whenever my bowls decide to move. Did anyone else experience these cramps? They are aweful. The doctors say its the small intestine trying to figure out what to do and that if it's making noises and moving that is a good sign that they are still working. It might be a good sign but its painful and keeps me up at night. I also getting a shooting pain whenever I pass anything that is not liquidy.. like if my bowl has any bit of substance to it I get this shooting pain in my lower right abdomen. Anyone experience this? Doctors say its because my body is healing. It just makes me nervous as I really am scared of the ileus returning. They told me as long as I am not vomiting again, passing gas/bm and do not have a fever that I am ok.

Just curious if anyone else experienced anything similiar?
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Hi i need advise. Last year, i went in to hospital with chrones disease, to have a small intestine surgery, to remove only 5 inches of  inflammation.  I was told only 5 inches would be removed.
The doctor, general surgeon , in emergency , lied to me and told me he was an expert with chrones patients.  He did the surgery and punctured several areas of my large intestine-my large intestine was perfectly fine before he touched it.  Realizing he had done it he tried to stitch back up all the holes, he was so careless that he forgot a few and stitched me back up.  Once in my hospital room the nurse went frantic, for two days she kept at my surgeon told him , judging by the symptoms she does not think he stitched up all the holes, he told her he did , and she insisted he did not and demanded he do x-rays.  Well nurse was right , and by time the stupid incompetent doctor came around to realizing it it was too late.  Two days after my first surgery doctor took me in to an emergency surgery, i had fecal matter all over my body, he forgot to stitch up a few more holes he created.  The two day delay destroyed my entire large colon and left me with an iliostomy bag. I went to new hospital and they said  my large colon  is completely destroyed leaving only 34 centimeters of it .  I am scheduled to go back to hospital to do a re sectioning of my iliostomy.  Any advise?
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I drank Diet Pepsie in 1995 and had a severe reaction to it. After months of awful abdominal pain, diarrhea, tugging sensation in throat, etc. and after years of constipation, my large colon simply stopped working. After years of many tests, finally a sitz marker test showed that the large colon no longer functioned.

I was supposed to have a total colectomy in August 2010, but the doctor made a bad judgement call during surgery and left 2 feet of the large colon intact without telling me or anyone. There were post surgery complications because I had a blockage on 3 separate occasions. The doctor discharged me 3 days after the surgery even though I had a blockage and complained to the entire staff about my acute abdominal pain, but no one listened. The doctor told me to "deal with it". Three days later, I was in the ER getting my stomach pumped.

Months later the constipation returned. In January 2013 I had a colonoscopy and we learned that 60cm of the large colon remains to my horror. My new doctor asked the first surgeon why he left a portion of the large intestine inside me, and he replied "because I'm a man". I sought legal action but no law firm wanted to take the case. Since surgery, I've been having chronic headaches, fatigue, constipation, and generally feeling sick.

Now on October 2, 2013 I'm having the remaining section of the large colon removed. I'm optimistic and can only hope that all goes well.

I see from the many posts that I am not alone in dealing. Many others here have very similar issues and I wish you all the best. There's always hope. One day at a time. God Bless.
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I drank Diet Pepsie in 1995 and had a severe reaction to it. After months of awful abdominal pain, diarrhea, tugging sensation in throat, etc. and after years of constipation, my large colon simply stopped working. After years of many tests, finally a sitz marker test showed that the large colon no longer functioned.

I was supposed to have a total colectomy in August 2010, but the doctor made a bad judgement call during surgery and left 2 feet of the large colon intact without telling me or anyone. There were post surgery complications because I had a blockage on 3 separate occasions. The doctor discharged me 3 days after the surgery even though I had a blockage and complained to the entire staff about my acute abdominal pain, but no one listened. The doctor told me to "deal with it". Three days later, I was in the ER getting my stomach pumped.

Months later the constipation returned. In January 2013 I had a colonoscopy and we learned that 60cm of the large colon remains to my horror. My new doctor asked the first surgeon why he left a portion of the large intestine inside me, and he replied "because I'm a man". I sought legal action but no law firm wanted to take the case. Since surgery, I've been having chronic headaches, fatigue, constipation, and generally feeling sick.

Now on October 2, 2013 I'm having the remaining section of the large colon removed. I'm optimistic and can only hope that all goes well.

I see from the many posts that I am not alone in dealing. Many others here have very similar issues and I wish you all the best. There's always hope. One day at a time. God Bless.
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Lost the first half of my colon in '97 due to Cancer, continued to work as a Firefighter?Medic until '07 when I lost the remainder for the same. No pouch, no bag.  Small intestine to rectum to complete. Many episodes of dehydration and "kidney failure" (no dialysis) over the years. Overall, I am now 16 years post colectomy, no big deal. I pretty much do as I please. Lots of bathroom time..yeah. yeah. Deal with it. And F*K cancer.
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hello I had the surgery in 2006 entire colon removed and small bowel attached to my rectum so far so good it has altered my life some as to what i eat but im thankful to have had the surgery and thankful to be alive
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hello I had the surgery in 2006 entire colon removed and small bowel attached to my rectum so far so good it has altered my life some as to what i eat but im thankful to have had the surgery and thankful to be alive
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hi karen....im mike from pa...............i had my entire colon removed also in dec of 01.............luckily i also didnt need the pouch...hospital stay was 12 days and had too many tubes in and out of me to count..even an epidural for pain...short handed staff were great!...however i ended up going back in to hosp a few days after being discharged because of an abcess (abscess) in my rectum...they inserted a small 1 inch tube about the size of a coffee stirrer to help it drain....but since then and 50 lbs lighter it was the best decision ive ever made...altho i was a imperative decision as ive dealt with ulcerative colitis off and on since 1978 when i was going on 23 yrs old...........i hope you are continuing to improve!
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hello ladi.....im glad ur surgery went well..................i guess we are both lucky to be alive now...thank goodness for modern technology..........my surgery was in dec of 01 in pittsburgh....cant say enough about the staff there!!
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Glad to hear you are doing so well. Yes bathroom trips galore but better than the alternative! That's my life to but you get used to it and you learn what you can and can't do.
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Also in total agreeance about the cancer!
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Thank you! It was yet another awesome decision for me! It took a while but I'm doing well. I have my times and or days where I have to be closer to the bathroom but for the most part I got some of my life back. The stomach aches I used to deal with were horrific and those are no more, so I can not complain in that department. Glad you are doing well also. Hope it stays that way for us all. :)
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Glad to hear all was successful. Hope you continue to due well.
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