Colectomy to treat constipation?!?!

[quartzn99]

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.

Thank you for your help.

Quartzn99

[quartzn99]

Lvfrogs,

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).

Best of Luck,

Quartzn99

[lvfrogs]

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!
Colleen

[quartzn99]

Lvfrogs,

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.

Best of luck and health,

Quartzn99

[quartzn99]

Lvfrogs,

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.

Best of luck and health,

Quartzn99

[lvfrogs]

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.
Thank you!!

[quartzn99]

Lvfrogs,

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?

I hope this information helps.

Quartzn99