Bleeding again

[SoIhaveUC]

Hi Everyone,

I haven't been on here in a while, which is because I have been doing really well. However,lately my immune system seems to be a bit all over the place. I have picked up 2 colds in the last month, and now I seem to have a sinus infection, along with IBD symptoms. The IBD symptoms stated on Thursday and got worse on Friday of this week. I was in the loo at least 10 times, with bleeding and mucus. I would call the doctor but they are not back in their offices till Monday, and I don't think it is serious enough to go to ER about, so I will just wait, but this makes me wonder if it would be better to get the surgery. I don't know much about it, and I not sure how it affects your actual life such as; swimming, traveling etc.

I think that I would be a good candidate for the J-Pouch as my UC is only in the rectum and has not spread throughout the entire large intestine, and I don't really like the meds. I don't really want to be on 6MP or Influximab. Is there anyone on here which could tell me about the surgery and how it affects their life? Is it worth having?

I get so sick of the bleeding and the loo trips.

 

[2thFairy]

Hiya!

I had proctocolectomy with J-pouch two years ago. With any reconstructive bowel surgery such as a J-pouch, you will need an ileostomy for a minimum of 6 weeks. My J-pouch is good for reconnection, but I have elected to keep my ileostomy long term. The actual surgery to remove the colon is hard on your body, but most people do very well after this. Having an ileostomy can be very challenging, especially in the first 4 weeks, and issues such as malnutrition and dehydration are very common in the beginning.

Another forum member, canuckscouter, has an S-pouch (similar to J-pouch) and can tell you what their experience has been after surgery.

I have absolutely no regrets in having my colon removed. I feel the healthiest I have ever felt! I had undiagnosed UC for about 18 years before finally receiving a correct diagnosis and treatment. Two years after that, when all medication failed, I consented to proctocolectomy to just be done with it. At this point, I am still considered "cured" of UC, but only time will tell. Some people have been diagnosed as having UC, had their colon removed, and years later had further problems in their small bowel indicating that it was Crohn's disease all along. To have this surgery is such a very personal decision. Do as much research as possible. It is a major life-changing operation.

There is also a website dedicated to those with a J-pouch. You might check them out and ask your questions there as well.
http://j-pouch.org/eve

 

[SoIhaveUC]

HI 2Th fairy,

I think that I have spoken to you before, but I forgot how much yours had spread. Was it in the rectum only??

What is the difference between and S pouch and a J pouch??

 

[2thFairy]

Mine only spread as far as the sigmoid, but due to failure of all medications, my GI recommended the surgery. Member vonfunk had pancolitis when he had his surgery. He also kept his ileostomy, but is now having further surgery to connect the J-pouch due to parastomal hernias causing obstruction with the ileostomy.

The only difference between S-pouch and J-pouch is that the S-pouch uses an extra loop of small intestine in the shape of an S to form a slightly bigger pouch rather than just a J shape.

 

[SoIhaveUC]

Ok. Mine has been a little in the Sigmoid, I had a couple of ulcers there once. So I mine is similar to yours. So with yours did they keep a lot of the large intestine. If I had surgery I would not want them to get rid of the good sections.

 

[2thFairy]

The entire colon and all but 5 cm of rectum are removed. Normally, colon resection is not done for ulcerative colitis since the disease is likely to come back in the remaining colon. With UC, removal of the entire colon is done when surgery is indicated.

 

[SoIhaveUC]

Oh man, that seems like they are getting rid of a lot of intestine which is sill unaffected.

 

[2thFairy]

But, think about your UC. It starts in the rectum and creeps upwards into the rest of the colon. UC only affects the colon. With Crohn's disease, it can affect the small and large intestines. When it does show up in the colon, it occurs in patches rather than a steady large area...just a little here and a littler there, and can sometimes take over the whole colon. But, since UC follows a steady trend to creep upwards, by taking out just the diseased parts, the rest of the colon is still there to continue the disease at some point in the future, and most doctors say the chances of it continuing after resection are very high.

So, for UC, the idea is that if you aren't responding to any other therapies and surgery is deemed to be the next step, take it all out once rather than continuing to have additional diseased areas removed until there is no more colon left. I'm sure you could find a surgeon willing to take out just the diseased area and leave the rest, but most GI docs and colorectal surgeons agree that take the entire colon out at one surgery is the better thing to do.

Just something to think about.

 

[SoIhaveUC]

Ok thanks, I can see the reasoning, and surgery after surgery is not good for one either. I need to speak to my doctor tomorrow, and they will probably put me on the steroids again. I also have a sigmoidscopy coming in April.

I haven't tried the bigger drugs, not keen too. It seems that I can get into remission but only for a couple of months. Then I flare up again due to a cold or flu. I used to use the diets, which seemed to help with some of the pain, but the rectum was not effected with the diets at all. I used to do Paleo, but still was bleeding the the rectum. That section doesn't like to respond to anything.

 

[vonfunk]

It made my overall life enjoyment better. Once I had gotten a handle on things it was fine.
For me it made travelling easier, no washroom urgency on planes or trains, went on my own time, never had the mad scramble for washroom (and depending on the country I got through customs easier). I've done a multi-city train trip, flown down to Cuba, while I've had some issue they were hernia related. I found different companies were better for different types of trips (coloplast was great for the beach side resort, rubber baseplate, that I sealed with tape, lasted the entire week). After a few months I learned how long it would take for food to pass through my system, I was able plan out things. For example, it's a 3 hour flight, if my system is empty, I can start eat just before and during the flight and I'll be be at my hotel room before I need to empty. I've only had one appliance malfunction travelling, and that was at train station in Detroit because I was using an untested hernia belt I had designed but not tested before the trip.

I had planned on keeping the stoma, because it's fantastic by comparison, but as mentioned above, I developed a hernia (probably my own fault), had it corrected Dec 2012 but it came back. I've had around 25-30 small bowel obstructions in the past 2 years. I was scheduled to have surgery for the J-pouch beginning of March, I'm now in limbo as my spot was given to someone with cancer (can't really be mad about that).

The one thing I had been told by multiple surgeons, is that if I get the reconnection and hate my life, I can always have the ileostomy put back in.