Newbie

quote:

If I have the surgery will this bleeding stop
Is the rectum and bit of large intestine removed?
What is it like in the initial stages of living with a pouch
What about diet? Is it similar to diet with illeostomy
Do you actually make proper number 2s again or is it similar to what we produce now?
Any advice would be great

1) It depends on what is causing the bleeding. What was your diagnosis before surgery? What type of surgery did you have already? What exactly was removed and what was left in tact? I assume from your post that right now you have a temporary loop ileostomy?

2) If you're looking at J-pouch surgery, typically the entire large intestine, including the colon and rectum, are removed. The J-pouch is created out of pieces of your small intestine, and current practice is that it is stapled to the top of your anal canal.

3) While the J-pouch is learning it's new function during the first few weeks to four months or so, J-pouchers experience a high BM freqency (5-15x/day), and BM's are pretty liquidy with a high concentration of digestive juices which can irritate the skin around the anus causing what is known as "butt burn." (There are remedies for this, however.) Some people may have trouble emptying their pouches while others have trouble keeping it in (anal leakage). Some people experience cramping or pain around their pouches. Dehydration can also be a concern in the beginning, so there is a need to stay hydrated. Some experience pressure and/or painful gas. If any of these are overly problematic, it may indicate pouchitis (inflammation of the pouch), which is treatable with antibiotics. HOWEVER, all of these issues get better over time, and most of them will disappear completely, though it can take up to a year or more for all the adjusting and settling to take place. Having a highly skilled and experienced surgeon is paramount to avoiding post-op issues and complications. Typically, the only LONG-TERM DIFFERENCES from a healthy colon are as follows: higher frequency (average is 5-8x/day with one or two of those happening during the night) and somewhat less solid stools. However, some people do experience long-lasting issues and complications, and (according to studies) between 4-10% have continuing issues that are problematic enough for them to remove the J-pouch and opt for a permanent end-ileostomy.

4) After the initial healing period, diet is usually up to the individual. Some people eat whatever they want whenever they want. Others limit certain foods in order to better control their symptoms or bowel movements (i.e. to reduce frequency, to make things more solid, or reduce gas)... but that is highly individualized since different foods affect people differently. Some choose not to eat late in the evenings so they won't have to get up at night.

5) Although a few J-pouchers have been able to produce a solid stool, generally speaking bowel movements will be less solid... how much so will probably depend on your diet. It will also likely be more acidic, possibly causing a little irritation as it comes out. Again, this can also depend on your diet. Rinsing with water afterwards (using a squirt bottle or a bidet) and/or using specific creams can prevent a lot of irritation.

Since I have not actually had my J-pouch hooked up for use yet, I am not actually speaking from personal experience. All of this info is coming from countless hours of research and time on forums like this one. I'm sure other members will chime in to fill in anything I missed. :-)

Thankyou so much for the detailed reply this is the most info I've got from a person that isn't a doctor!!! I had ulcerative colitis my first ever bout in January resulting in the removal of my large intestine in February as none of the treatment worked. I was too ill to have the first step of the jpouch done so I have a temporary illeostomy at the moment. For me it was a matter of gettin the bowel out and keeping me alive at the same time. I've only really recently felt well enough to think of further surger and have only just started thinking of the reversal. I'm a person who will put a lot of thought into something an if I'm uncomfortable wont go ahead and once I've made my mind up it's made up.

If I go for the reversal it will be done in two steps first step is creation of pouch with loop illeostomy second step is the take down. My only concern would have been of this bleeding I have and the sever phantom pain that I expierence would still be there but I suppose the phantom pain would be gone as I will actually be producing BM. Im very comfortable with my surgeon and he is one of the most expierenced in northern Ireland.

When do you get fully connected up.

Speaking from someone who had no severe rectal disease prior to jpouch surgery and who now suffers from chronic cuffitis (inflammation of rectal cuff left and ATZ zone) and a stricture at the anastomosis site, (possibly due to post op inflammation, steriod use before surgery or surgical trauma), I would highly recommend trying to get the inflammation under control before opting for stage two surgery. You need to make sure they discuss this possible issue after surgery if you a are having a stapled pouch and not a handsewn procedure with complete rectal mucousectomy.

I do not wan to scare you as everyone is different and responds differently to surgery.
however, it sounds like you had an extreme case of UC and disease in the rectal area that is still persistant almost a year after colectomy.

I am now on continual rectal steriod suppositories, as well as canasa suppositories due to the issues I am having, and never was prior to jpouch surgery. If I can spare anyone from going through what I have since my takedown 18 months ago it will have been worth the effort to reach out.

See if your surgeon is recommending mucosectomy with hand sewn pouch due to the active rectal disease. AS others have mentioned on this board, this approach is still not a guarantee that diseased tissue will not grow back, but may be a better option, if possible, for someone with chronic rectal disease.

Thanks jeane I'm glad I came on cause I never heard of a lot of different procedures. I think he said he would do a test to see what road we would go. I've been keepin it under control with steroids but would not like the prospect of having to be continually on them!!! I'm only 4ft 10 an the increase weight I gained had really put a dampener on things!! Yeah it was quite extreme and I know the bowel actually disentergeated as they were taking it out but they told me it could happen. I spent few days afterwards in intensive care getting blood transfusions as well as getting my potassium under control. I have such pain now from my rectum that sitting or walking long periods really gets to me. Every time I go to the bathroom I go through a mental battle of im constipated and them my head goes no but you can't do anything!! Itry to ignore the feeling that of I don't make the toilet in going to have dyherria and soil myself. I'd need to find out if this will continue because I know what my option will be!! This is my biggest worry. Its so hard to no what to do. I usually dont have an issue with having my stoma or bag but recently I've come to think I hate changing my bag every day ( I don't feel clean if I don't and my skin gets irritated) and also I hate having to Carr all the boxes of steroid enemez as well as my bags wherever I go. This way I'd live some normalcy but I could never hate my stoma it saved my life. I wouldn't really have a huge issue with keeping it permanently and actually until this month I have been of the opinion I'd keep it. If I did keep it and everything was removed im afraid that I'd still have those awful phantom pains they wake me up in the middle of the night sometimes. So this is why I've been thinking of the reversal. Sorry hope this makes sense but thanks for the heads up.

What exactly happens with te other type of surgery and what is the difference in outcome between having the staples or the stitches?

the bleeding and pain is likely from your remaining colon and rectum they havent got to yet and mine stop after j-pouch creation. ive had a lot of struggles with my takedown but 2 months out im starting to see progress especially getting a difficult hemorrhoid under control after it thrombosed making it even worse. it got my attention and i think things will rapidly improve. i wasnt treating the hemorrhoid til after in flared to a thrombosed state so in a way it was a silver lining. i believe the ointment i was using kept it irritated from day one. preparation h is my new best friend and its cheaper cleaner and has a lubricant that is very thin and comfy but seems to stay on much better than the expensive stuff so it protects my skin better. i slept through the night last night first time since colon removal...

Tom did you have the bleeding before your pouch was created? If you did I'm gla to hear its healed up this is my huge concern as its really gotten to me lately and can make me feel really down which is unusual as I'm a very happy go lucky person.

I'm so glad to hear that things are turning out to be such a success and gla you got hymroid under control. Apart from your initial issues are you happy with the pouch. Sorry so many questions but I'm like this I like to research everything fully ten make my descion. Wow you slept through the night I can't remember the last time I slept through the night!!! Even though I wasn't diagnoised until January looking back over the summer I showed signs of UC and didn't sleep full nights then. Im glad to hear of someone who can sleep through the night!!

Grace