I am surprised that your GI hasn't pushed surgery, due to the increasing risk of cancer with active UC. I had UC for 25 years mostly fairly mild and controlled with 5-ASA meds. I then had rectal...
I think your GI is probably right about removal, the big problem is not what they see but what they miss. There is a post on the site about people with well controlled UC having a tough time going to...
There are several K pouch boosters on Jpouch.org. IMO It is a problematic procedure. It can work well for some people but really, what do you gain? Only one thing lack of an external appliance. The...
The order from top to bottom after a ileal J pouch is created is: small intestine, J pouch, rectal cuff, anus. The entire large intestine above the rectum and the rectum save a tiny bit is removed...
I was back working within 3 or 4 weeks. Not much pain. I walked a lot pushing more each day, I did this after all my surgeries. Feeling "normal" a hard question, someone told me that it takes a month...
I did have a lot of adhesions. They didnt know that before the surgery began, there were two surgeons involved. They spent a lot of time cutting the pouch loose and one of the surgeons wanted to give...
It wasn't that bad, 4.5 hrs, it was done laparoscopically. I did not have anus removed which made recovery quite quick. A lot depends on the amount of adhesions present and those vary from person to...
I couldnt live with it though it was better than my J pouch. The problem was it keep getting worse. Some people dont have this or its very minor and live perfectly well with the disconnected J pouch....
Probably gas, that is always gives me the rare blow out. Always at night when I am in deep sleep. If you arent using them you might try the Brava strips they do help, give you a bit more time to...
I lasted 18 months. Could I have lived the rest of my life with the J pouch? Yes, but it would have been a pouch centered life and a restricted one. I found myself always considering the consequences...
I think it is all in the definition of "success". What I see is a whole lot of people with "successful" J Pouches who have problems. Some of the posts on jpouch.org begin with "I love my J pouch"...
I am about done with the follow up, which is 5 years after end of treatment. I wont be seeing my oncologist who orders the blood tests. I dont know if there will be continued CEA testing, I suspect...
Tumor markers, I assume a CEA blood test are poor indicators of cancer. It is unlikely a stage one rectal cancer would even elevate the test. Non the less while not a good indicator they are an...
If imodium helps some I would try tincture of opium. My pouch is gone now but the opium really helped with almost no side effects. I waited about 20 months before having my J pouch disconnected and...
Butt burn with a J pouch seems to be highly individual. For most it goes away in the adjustment period (first year or so) for some it never goes away. I had my pouch about 20 months and butt burn was...
It really depends on the airport you travel through. I travel a lot. The new scanners at SFO, my home airport always pick up the bag full or empty and you have to touch the bag (on the outside of...
Change it to UC and 1984 and that is my opinion also. And I am satisfied with my ileo. For me It is a question of functionality. I functioned well with my colon for 32 years and I functioned pretty...
Whatever works. Tried both but my idea is keep it simple. Saw only really minimal advantage for a two piece. Didn’t like the higher profile went back to one piece. Regarding hiking which I do a lot...
It sounds like you are/were at stage 1 of a three step J pouch and decided not to go forward? I think it good that the surgeon brings his or her opinion to the discussion but it's your body and life...
The reason I say malpractice is that as you say above you have a "rectal stump" that typically means you still have some rectum left, which if you have UC and go to a permanent end ileo with no J...
Sorry your having so many problems. There are quite a number of people who believe they have UC get J pouches and end up with a Crohns diagnosis after things go wrong Crohns can be had to...
Never have heard of UC in the anus and I would question the diagnosis. It may be that you have Crohns and were mis-diagnosed which is pretty common. Crohns can involve the anus. The treatment would...
Generally speaking not a terrible experience. My side effects were relatively mild. Some nausea controlled well with Zorfram, I did have some cramping a few times toward the end of the treatment that...
Took Xeloda with a loop ileo, had no problems related to the ileo. Should not be an issue...
If you are concerned about the function of the ileo while undergoing chemo you shouldnt have any problems. Yours is a bit different but generally with rectal cancer that involves the removal of the...
Age 62 now, its been almost 5 years since I had the first treatments. I dont really remember how much radiation I had (28 rings a bell) and it was chemo (xeloda) radiation. Basically the standard...
I had UC that went to rectal cancer and I tried a J pouch which after about 20 months I had diconnected and then 6 months later removed. Have end ileo. I am happy with the results. Disconnection is a...
No need to remove the entire residue. My usual procedure is that I remove pouch, take a shower and scrub the area gently with soap (Ivory) and rinse well with water. In the shower the texture of the...
I can tell you what I have. I had a J pouch and the cuff was stripped when the the pouch was formed. The pouch was a failure and I went to an end Ileo, pouch removed. From what I can tell they left...
I think it important to get the terminology correct. The rectum is the located at the bottom of the colon and is actually part of the colon. The rectum is connected to the anus/anal canal, there is...
It depends on several things: first what disease or reason you have for surgery. Then on what your surgeon wants and finally on what you want, though typically they don’t seem to ask and you have to...
Curious as to what the small pouch is, anybody have an idea?...
Your surgeon told you the two main pouch fail reasons. They really don’t know why some people get chronic pouchitis, which is another. Some others are weak or damaged sphincters, radiation treatment,...
Given your pouch is already made and if there no factors that might indicate you would be more prone to failure I probably would go ahead and try it. This is coming from someone who had a failed J....
In the UK when they leave the pouch do they do an end ileo or a loop? I think most of the secretion problems happen or are much worse when you do an end ileo and leave the pouch in place. The...
Yes to merely disconnect the J pouch and go to end ileo is not a difficult procedure. On J pouch.org there is one poster who has done that with good results but she is also on biologics for crohns...
I don't use the word "wrong" in a moral sense. I made the choice as I said because of vanity but also because of uncertainty of what life would be like with an ileo. Additionally the thought that I...
Having had both a J (failed) and now an end ileo my opinion is somewhat but not completely jaded regarding the J. Honestly when you think about what we ask a J pouch to do it is really remarkable...
Basic feeling among people, with a few exceptions, is that filters do not work well with an ileostomy. The output is too liquid and plugs up the current filters quickly. This is my experience. The...
I have a permanent Ileo and have had quite a few partial blockages. They always have resolved on their own but not without a fair amount of misery. This may seem simplistic but what I have found that...
They simply dont understand that we without colons need very little prep. I had a scope of the small bowel through the stoma and had clear liquids from noon before with miralax prep and it was...
Well as they say it's the squeaky wheel that gets the grease, so to speak. That said, it is interesting that once we have the surgery we (speaking for myself) lose interest in IBD. I never visit the...
A lot depends on your stoma location and your body type. Mine is pretty high (navel height) and therefore I wear my shirts out, typically polo types or colored tees for casual. However like you I do...
I use the same pouch you have, but use an eakins seal and the brava strips. This is a very secure system. I am extremely active and have never had a leak related to being active. I dont think a two...
I take sauna every few weeks, its not a problem. Dont over do it and bring water to drink into the sauna. At the place I take my sauna there is a shower just outside the sauna and steam rooms and I...
I had exactly the same reasoning. Others have mentioned this but I make a "duty " to respond whenever I hear this line of thinking. You are absolutely right you can almost certainly go from a J...
I think this more of an issue if you are not in committed relationship. Since I am in a long term relationship it hasn’t made much difference. Most of the time I do wear a belt to cover and hold the...
I wouldnt be too worried, but hydration is key. My experience is it takes longer to recover from an intestinal virus now than before the ileo and I think it is mostly related to rehydration. Though I...
In your considerations be aware that a failed J pouch is a miserable thing to have. Additionally the removal of a J pouch is a tricky, complicated, big surgery with many possible complications...
I use the Coloplast Brava elastic barrier strips and they work really well. I used to use a belt for extra security but do not anymore. They do contain minor leaks which since using the strips are...