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Hi guys, been lurking here for a while so consider myself well briefed but afraid I still have a barrage of queries..… You guys are an inspiration and reading your tales and how you cope certainly makes me feel more optimistic. Anyways…

 

UK 41yo male and sounds like I will soon be joining the ‘club’. I have had long standing UC which has been well controlled to the point I feel entirely normal and have done for the post 10 – 12 years without meds.   Have the routine Colonoscopys etc, and there are now signs of dysplasia, and specifically a DALM.

 

Doc recommends immediate removal and im aware that this mean full colectomy with J pouch, although because im ‘healthy’, he would consider sub total colectomy if I insisted, but im aware of I would need regular screening.

So questions are

 

  1. Anyone had sub total colectomy? With J-pouch I know to expect 6 – 8 bathroom visits a day, what about sub total? Any Urgency with sub total?  Im thinking the difference between procedure outcomes might be negligible?
  2. For pouchers, i hear a lot of comments about bathroom noise. Im wondering if there is something I can request at time of surgery to reduce/eliminate this issue? For example Rectal Sparring, leaving more stump etc. What is it about J pouch that causes the noise?
  3. Anything I can request to make it easier to pass gas (standing or sitting down I mean). Would it be made easier by keeping the rectum etc

 

I know this stuff is not normally done for UC, due to the risk of later ‘developments’, and to be honest I am erring on the total colectomy to prevent future worries, but even so I would appreciate any thoughts on the above.

 

Thanks in advance

Replies sorted oldest to newest

The way the surgery is done in the USA a small amount of rectal cuff is left in, not sure what the standards are in UK.  I had procedure done and there is no urgency like there was with UC.

Try to use as little painkillers as you can after surgery, as you do not want to slow down motility and end up with an ileus postsurgically.

Good luck.

CTBarrister
Last edited by CTBarrister

There is no surgical technique you can request to provide a quieter pouch, or one that more readily facilitates farting. There may be surgical differences that contribute to these results, but no one (including your surgeon) knows what they are. 

In theory a subtotal colectomy should function better than a J-pouch. The remaining colon and rectum should provide factory-installed water absorption and stool storage. In practice you still need a good surgeon to get a good result. Plenty of people have had these procedures, but few of them are here. FWIW, "subtotal colectomy " is often used to mean removal of the rectum, which will behave differently than the procedure you're describing. 

The risk of leaving the rest of the colon in is significant.  If the screening procedures were highly reliable at catching all malignancies and dysplasia early then it might not be as bad, but the big risk is missing a predictable-but-sneaky cancer until it's too late.

Scott F
Last edited by Scott F

Bobish. It's like déjà vu. I was diagnosed with dysplasia and given same option. I chose to go for the j pouch as I did not want to go for the constant screenings or risk any further developments.  I had a two step surgery as I was also for the most part healthy. 

Step 1- removal of colon and development of j pouch and temp ileostomy. The recovery from this one I found most painful. First 5 days post op was hell but manageable. Try to walk as much as possible. The bag was a bit of a shock and it took me about three times changing in it while at home with a nurse to get the hang of it. Once I did it was pretty easy.  Emptying the pouch is easy annals manageable. If there is one thing I liked about the bag was the ability to empty it at my discretion. There is some initial noise in the first days post op while the stoma comes alive. Don't panic. Goes away or is less noticeable after a couple of weeks. 

Step 2- Ileostomy reversal and j pouch hookup. I am currently 18 days post op. Pain is no where near the 1st op although there was some. The biggest adjustment for me was and still is adapting to the new plumbing. Man does the system was up violently once you start eating solids again. This is the part that has caused me most anxiety. There is a lot of gas in the beginning rumbling through the system. Frequent bowel movements that were for the first couple of days watery. You need to manage this with spray bottle flushes and barrier cream as it can be sore.  This has got better with more time.

That said, I am still adjusting. My bowel movements now vary. Sometimes watery and some more formed (not like before removal of colon). The thing that still irks me today is the sudden onset feeling that can come and sometimes an hour after I already had one. And because it's hard to tell wether it's gas or  stool, it has made me panicky. However, based on what more experienced j pouchers will say, that it takes 3-6 months for your pouch to adapt fully where you get the feeling but it is easier to manage. 

Therefore, there is adjustment from a bodily function but what i do like is my body without the bag. And worse case scenario, if things do not work out, I know I can always go back to the bag. That is worse case. I am thinking optimistically as I am longing for the day where I can feel confident in being out and about. I am just starting to do that now. My mornings to mid afternoon seem to be best. After that my bowel movements times seem to be era tic. I am on average going 8 times a day (currently) and trying to feel better more confident about myself. It's slowly coming. But this is my biggest hurdle.

Whatever decision you make, I hope you can use this info and get all the info you can on what to expect post takedown surgery as this is something I wish o had so I would've know what to expect myself. No one told me that my system would be waking up once again and be erratic. I had to figure this on my own. 

Good luck with your procedure. I know it will be fine. Just be prepared mentally and you will get through it. So many already have. And don't worry so much as I did about the possible complications. My doctors didn't seem to be to worried. That were very positive. 

If you need anything, don't hesitate to reach out. 

Good luck. 

Itsanewworld

Cheers for the thoughts guys, much appreciated.  Cheers for the advice CTBarrister.. will bear in mind.  ive always been a 'minimal drugs' kinda guy anyway.

Scott, that's kinda what I thought to be honest, but figured so many people on this board have been through the procedure, someone might have some thoughts.

ITSaneWorld, wishing you well with your outcome... will be interested to see how  things improve for you over the next few weeks/months.  Thanks for your support

Bobish

my understanding of having a subtotal colectomy with rectum left would be that you still have an end ileostomy and the rectum is just left there 'disconnected' and hopefully not causing any problems

I had this as phase 1, and life was good. the ileostomy was easily managed and I could eat and drink everything I wanted. one of my surgeons patients decided life was good like this and not worth the risk of going for the pouch.

I went for phase two, so I got the rectum removed, j pouch created and then a loop ileostomy replacing the end ileostomy, whilst the pouch healed up. at first the loop was troublesome but after a few weeks I got used to it. I did have a sinus come up on the pouchogram so I had to delay the reversal by 6 months. this was a worrying time as I didn't know if the sinus would heal up, but it did. I had reversal in February 2015 and after a few months of getting used to things I never looked back.

there are things you can do to manage output (Imodium etc.)

as for passing gas, overtime I have learnt when its safe to do it or not, and I can pass standing up or lying down. lying down is easier. I think they key is to have fairly thick output. I can't tell you what makes me know if its gas or not, but somehow by brain has learnt to tell the difference.

S
Last edited by Shainy

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