how UC spreads->surgery options?

1. Possibly, but not definitely. It may just stay in the left side of your colon.

2. In UC, surgeons do remove the whole colon. From past experience they found that if they only removed part of the colon, UC tended to spread to the remaining colon, even if it had never previously been in that part.

3. A j-pouch is constructed from the end of your small bowel. The entire colon and rectum is taken out, with only a small rectual 'cuff' left for continence (you need to be able to hold the poo in).

4. You won't get Crohn's colitis after surgery, because CC occurs in the colon just like UC does. You may get Crohn's of the pouch ('cos small bowel), although it's relatively rare - there's about a 5% chance if I recall correctly. If that happens, you can try to treat the Crohn's with meds, but if it doesn't respond to anything, you may have to revert to a permanent ileostomy.

5. I'm not terribly hopeful, but I'm a devout pessimist. I see from your sig you've tried Remicade, which basically leaves Simponi, Humira and Entyvio. Since Remicade initially worked, another anti-TNF may work for you.

Proctitus does not always spread until the entire colon is involved but it's best to treat whatever you have to try and prevent increased inflammation. My proctitis became left-sided because I did not use enemas and suppositories and relied on oral RX.

If you are allergic to mesalamines and do not respond to standard enemas and pills based on mesalamine try 95% curcumin capsules. Curcumin/turmeric studies confirm it is an anti-inflammatory with many other positive benefits. It is a safe supplement and can be taken in high doses. Don't take if you are on blood-thinners and let your MD know you are taking it.

1. Depending on how UC affects YOU, the disease may or may not advance to a point of being pancolitis. Most cases of UC start near the rectum and progress upwards. My colon had left-sided UC initially, but it wasn't consistent -- so they weren't positive it was UC. However, I've always had testing indications that I have UC, not Crohns. At my worst (2012 -- why I started Remicade) the disease was fully there from the rectum up to the mid-transverse colon... where an imaginary line was. Further on the colon was fine.

2. Yes, UC appears to be a lifelong disease in most cases. Most any surgeon WILL NOT remove just part of the colon, for the specific reason you're saying. I've asked about this with my GI doc, and the answer was that the disease would likely come back in the part of the colon that was left. Interestingly, colon transplants have been done for people that had UC in the past (very rare and you won't find someone wanting to do this), and patients again developed UC in the transplanted colons.

4. The J pouch is created from the end of the small intestine, not part of the colon. That is why it is less likely to become inflamed. UC affects the colon, not the small intestine. The J-pouch is created by taking the small intestine, and wrapping the end back on itself (forming a pouch that initially resembled a J when it was being folded. That double-width area of the small intestine that is folded on itself is turned into a pouch. (I believe they take the small intestine tissues and cut/attach them so that the whole pouch is one empty area, not a folded around piece (if that makes sense).

4. (Cont...) MOST people are very happy with J-pouch surgery. Take a look at some varied videos around the internet. Google things like "J-pouch success". If in the throes of a very hard struggle with UC, it's an almost obvious choice to choose J-pouch. However -- it's not without some challenges. Yes, some people get pouchitis type situations. I do not know enough to comment, but if it were that large of a deal I seriously doubt doctors would be recommending the surgery at all.

5. If your disease is discovered to be crohn's colitis (not UC) they will not want to do surgery most likely. Regarding "getting chron's"... that is unlikely if UC is what you have. In regards to "those intestines" related to crohn's -- they do not want to remove any more than necessary. Some parts of the small intestine do get removed in crohn's patients, but the risk is "short-bowel syndrome" where food is not absorbed well because there isn't enough length to the small intestine. Food is broken down in the stomach, goes into the small intestine to be absorbed, goes into the large intestine (colon) to become ready for expulsion (and a few things are absorbed like water), then it goes out the rectum.

5. (Cont...) Some patients with crohn's do have many surgeries... as there become strictures and other issues. It's just that the goal is not to do that for the risk of much more severe issues. I do not know the approach once a person is worried about taking too much of their small intestine. The alternatives are not something I know about.

6. Regarding advances in drugs, I'm always optimistic. This area of analysis related to my health (UC) has always been a challenge. There were never black/white clarity type answers in regards to what treatments I should hope for, plan on, etc. It's all VERY subjective. I finally stopped Remicade once I knew Enyvio was available.

6. (Cont...) I want to say that I've always felt there was hope to not have to have surgery. Sometimes I've lost that hope, but my instincts kept me trying things. I think what happens though, is that you run the risk of taking too much of your life hoping and trying things.

To help clarify your position, let me try an analogy:
Two people wake up to their last day on earth (for whatever reason). Their experiences available solely include a walk through a beautiful park. They are both hindered by the fact that they need one thing to enjoy the walk; a pair of shoes to get through all the terrains. One person sees a pair of dress shoes and says "well, those will be a bit harder to walk in since they're not really for parks, but that's what I have so I will use them and get to walking". The other person sees a pair of dress shoes... but says "I know how much more able I'll be in tennis shoes... I wonder if I can find some." So, the result is that one person is out enjoying their last day on earth... albeit a little slower than they might be used to. The other... is taking a chance that they'll find some better shoes, at the expense of invaluable experiences on their last day on earth.

You have to know how set back you are in your life with... and without surgery. You have to know the most and least likely results from making either choice. Then you need to compare the different possible results and see if there is a clear answer.

A book I read lately talked about the "Ben Franklin Assessment". Google that regarding decisions if you want.

The hardest part of this is to know what options are going to be available in the near future to treat UC (and IBD in general). I advise spending time researching the latest research and news you can find, and consulting your GI physician and possibly specialty hospitals near your area. If I were in the position you are I would consult with a certain hospital in Chicago, and the Mayo clinic in Minnesota. Those are the places my doctor has recommended I see for a second opinion if I want one on things. At least Mayo, and maybe both, are involved in research. What better place to get the most up-to-date and accurate information available in which to make a decision?

**PS, I'm trying to respond to all your posts. I'm in withdrawal from Tramadol pretty bad and just sort of coping with every day life. Had to spend all day yesterday with my wife for a commitment she enjoys.

Enormous thanks to each of you for your answers!

Exactly the info I need, and well-timed. I'm not at my best right now for synthesizing, so your clarity is of great value. Also you've pointed me to questions for GI on my next scope & seeking additional consultation.

PS: @Thoreau: I so appreciate your responsiveness to my posts as I'm trying to manage this new severe flare. You doing ok -- and weaning off Tramadol? You may want to add to our lengthy thread on managing pains that appear related to Remicade, since there's a bunch of us who continue to follow your progress since Mayo -- AND will remain by your side.