Concidering surgery

I have had UC since 2002.  The 1st time I was scoped I was told I have colitis all the way around my colon but the last time I was told it was only on the left side and it was patchy.  I am alergic to masalamine (asacol & rowasa).  I tried the steriods, canasa, cipro, colazal, cortenema, dipentum, flagyl, sulfasalazine & imuran with no luck.  I am unwilling to try Remicade or Humara do to the side effects sound worse than the UC and I seam to always get the side effects.  I do have issues with diarah and trouble not making it to the restroom but that is not my main issue.  My pain in my abdomin is horrible.  I am considering surgery.

1). Can you be hooked up to a bag for a while to allow your colonm to heal then remove the bag and be back to normal?

2). Can you just remove the disease section and hook up what's left of your colon which out the disease beginning to attach the remaining colon?

3). Since I'm considering this just to relieve the horrible pain, what can you tell me about the pain after the surgery.

4). Which is better the J-pouch or the traditional bag?  I'm 42 and have been married for 20 years so I'm not worried about dating issues.

5). Since the lastest scope was patchy does that mean I could have Crohns?  I see were several U.C. people was misdiagnosed and acutally have Crohns.

6). 24% of this year so far I've been wanting the surgery to stop my pain but the other 61% of the time I can manage with pain pills but 11% of the time I can get by with no meds.  With this in mind those of you who have had the surgery if you were me would you go ahead and do it?

Thank you for the help in advance.

 

I'm by no means an expert but my husband was in a similar situation. He has been living with UC for 15 years and was never really able to get it into remission. He did try Humeria and Remicade with no real improvement.

He just had the J-pouch surgery on 10/12 and while he did have a bunch of complications, I think he is still glad he did the surgery. He is basically cured of UC and no longer has any UC symptoms. He also had terrible stomach pain with his UC and he is very happy to be rid of it.

I'll try to answer your questions:

1). That is exactly how it works actually. If you get the J-pouch surgery (or one of the similar procedures) you will have a temporary bag (ileostomy) until you are all healed and then they put you back together again. And if all goes according to plan, you will be as close to normal as you can get without your large intestine.

2). They can do this, however it is not recommended. With UC, if they remove part of your large intestine that is diseased and leave the rest of it, the UC can come back in the parts that they leave behind. So, you will have gone through a major surgery only to potentially have your UC come back again.

3). Depending on how your surgery goes and if they can do it laproscopically or not... I think peoples pain levels vary. My husband was not a candidate for laproscopic surgery so they sliced open his belly to do it. The first words when he woke up was "pain, so much pain". He was on a lot of pain medication for a couple of weeks...however, he has been pain free for a little over a week now and does not need any sort of pain medication. I have read other people's post surgery reports though and some of them were only in moderate discomfort after their surgery. So, it will depend on you, your pain tolerance and how well your surgery goes.

4). This one I can't really answer for you... in my husband's case... the only reason he did the surgery was because he could get a j-pouch and eventually go back to "normal". He did not want to live with a bag for the rest of his life.

5). Anything is possible I suppose... in my non medical opinion. :) My husband's doctor told us there is a special test called the "Prometheus Test" (its a blood test) that can determine if you have chrone's or UC.
We didn't have it done though as we were 99% confident that he had UC.

6). Again this is a hard question to answer for you. Nobody can tell you if you should do the surgery or not. In my husband's case, he was tired of his life revolving around where a bathroom was and not being able to hold a job or go out and have a social life. He was able to control some of his UC with Vicodin but all that did was stop his pain...it didn't keep him from having to go to the bathroom in a second's notice. So, for us... the surgery was the only option in order to give him a more "normal" life ... I was also concerned for him because I didn't want him to end up 65 years old and still be living with UC and possibly developing cancer down the road.

Hope that helps a little. :)

Probiotic said...
Just commiserating.... I am not so afraid of the surgeries as i am fearful of the outcome not being good.

Oh yeah, this is exactly it! If the outcome is bad, you're f'ed.

Yes, but many of us are F'ed with the UC anyway, so.... might as well try this final solution! The vast majority of post-op issues resolve themselves over time, and personally I'd rather have a slightly higher frequency or live with a ileo bag or a K-pouch, and actually be able to leave the house and live my life, than be living in constant pain and pooping my pants all the time. It's just a matter of which option will give you a better quality of life based on your priorities.

Answers to your questions:

1). Can you be hooked up to a bag for a while to allow your colon to heal then remove the bag and be back to normal? Technically it's possible, but not practical, and you probably wouldn't be able to find anyone to do it. Any kind of surgery involving general anesthesia is a very expensive option that is also extremely hard on the body. They would not go through all that just to give your colon a little rest. Even if it did help attain remission, which it might not necessarily, the chances of your UC coming back at some point are almost guaranteed. You could achieve the same results with IV nutrition or a liquid diet. There are products out there geared toward Crohn's patients that will give you complete nutrition you can live on long-term. (I forget the name of it.)

2). Can you just remove the disease section and hook up what's left of your colon which out the disease beginning to attach the remaining colon? Similar answer to question one. If you have UC, they would not be willing to go through everything that's involved with surgery when the chances of your remaining colon becoming affected are so high - it makes a lot more sense to get a final cure by removing the whole thing. If you have Crohn's, it's a different story. Since a cure via total colectomy is impossible, that type of surgery is more common. It's called a "resection".

3). Since I'm considering this just to relieve the horrible pain, what can you tell me about the pain after the surgery. It is nothing like UC pain, it gets BETTER every day instead of worse, and it is entirely controllable with the pain meds they prescribe you. If what they give you isn't cutting it, ask for more, because being comfortable enough to sleep as much as you want and walk/move around frequently is important for the healing process.

4). Which is better the J-pouch or the traditional bag? I'm 42 and have been married for 20 years so I'm not worried about dating issues. "Better" is relative - it's all up to opinion. MY opinion is that I might as well try for the J-pouch, since it will simulate more of a "normal" function, so that is what I have chosen to try first. In the very small chance that it doesn't work out well, then I can always switch to a permanent ileostomy, a BCIR, or a K-pouch (which you should also look into as a third option).

5). Since the lastest scope was patchy does that mean I could have Crohns? I see were several U.C. people was misdiagnosed and acutally have Crohns. Yes, this is one sign that is sometimes indicative of Crohn's. It doesn't mean that you do necessarily, but your chances are a little higher. Either way, your surgeon would most likely run some tests to try and rule out Crohn's before construction of a J-pouch, since J-pouches don't work in people with Crohn's. My surgeon ordered a CT of my entire small intestine before surgery for this purpose.

6). 24% of this year so far I've been wanting the surgery to stop my pain but the other 61% of the time I can manage with pain pills but 11% of the time I can get by with no meds. With this in mind those of you who have had the surgery if you were me would you go ahead and do it? Only you can answer this question. But my personal opinion is that if you are either on pain pills or in pain 90% of the time, then your quality of life is affected, and you should do something about it. The vast majority of people I spoke with who'd had surgery - even the ones who'd had issues and complications - told me that they never regretted their decision, their life was better because of it, and many wished they'd done it sooner.

You are in the phase of considering and thinking about it, but most likely there will be a day when you just know. With me, I was in the same boat, after so many months of drugs, side-effects, pain, suffering... considering surgery. One morning I was taking a shower and in pain yet again, and I started crying and just yelled, "CUT THE MOTHER-F___ER OUT!!!" Just like that, I was ready.

.

"Yes, but many of us are F'ed with the UC anyway, so.... might as well try this final solution! The vast majority of post-op issues resolve themselves over time, and personally I'd rather have a slightly higher frequency or live with a ileo bag or a K-pouch, and actually be able to leave the house and live my life, than be living in constant pain and pooping my pants all the time. It's just a matter of which option will give you a better quality of life based on your priorities.
"

Not that simple, take a look at ESOR (Rosemary)'s case on here. She has the stoma and all and had to have like 3 surgery and what not to fix a not working stoma.

Having U.C. is bad for the stuff you mentioned, but at least things work. *knock on wood*. If you get the surgery and stuff stop working properly, then what do you do...

these are my personal dilemmas.

After reading the other response, I guess I misinterpreted what she meant in #1... I thought she was asking about having a temporary ostomy bag while the insides heal after removing the colon... my bad. :)

OK I am a FAILED 3step jpoucher who had to eventually have the jpouch excised and now have a permanant ileostomy. So I will get straight to the point. A FAILED jpouch is far far worse than the worst of UC days. And believe me, I knew bad bad UC days - going40+ times a day while vomiting at the same time, anemic, not eating, underweight, not leaving my house, pain, pain, and more pain. UC so bad that I had emergency subtotal colectomy surgery. Yes the majority of jpouches work. But if you are in the failure category ... ... it is far more difficult than dealing with just UC. And failures happen even if you have the best of the best surgeons.

and this statment that a previous poster makes needs to be very well thought out. "In the very small chance that it doesn't work out well, then I can always switch to a permanent ileostomy, a BCIR, or a K-pouch (which you should also look into as a third option)." Because that process is extremely difficult, wrought with complications, includes multiple additional surgeries sometimes, wastes more years of your life, and is a much more complicated surgery than any of the jpouch surgeries or even having just one original surgery to go to a permanant ileostomy that many of the posters on the ostomy board did. Also please note that it seems the poster who is promoting jpouches doesn't even have her's connected yet. Just sayin...

With that said...it seems you should be thinking about "quality of life". Is UC terribly affecting your "quality of life"? If you are not willing to go to the next level of drugs.. well then that leaves surgery as your only option. In that case you need to decide between a permanant ileostomy or a jpouch. Again.. you have to think about "quality of life". How many surgeries do you want to go through? Are you ok with an ileostomy and just want to get on with your life?

If you decide on a jpouch, you have to do eveything medically possible to give yourself and your doctors conviction that you truly do not have crohns disease. That "patchy" scope seems very concerning to me. The prometheus test does not alone guarantee a non-crohns diagnosis. In fact, nothing guarantees it. But you have to ensure that your medical team firmly believes you have no crohns. Though jpouches are the "standard" procedure for UC. They are not done for crohns because they will highly likely fail.

As to your pain question... major surgeries are painful. Simple as that. If you have complications, you may have more pain. Part of the job of your doctors and nurses in the hospital is to keep your pain under control. Surgery pain is very different and much worse than my UC pain. But with surgery pain.. you know that at some point it will end.

Jpouches are still relatively new entities and doctors are still discovering problems with them. Yes for the majority who were definite UC diagnoses before jpouch they work. BUT even with that you have to keep in mind, you will not be functioning at your pre-UC state. Yes after your break-in period if you are a succesful jpoucher you will not have urgency or pain like with UC. But a successfull jpouch means you will be more frequent, you probably have to limit some of what you eat, you may not ever sleep through the night, you most likely will have to take antibiotics for some periods of time, if not indefinitely for pouchitis. Greater than 50% of jpouchers get pouchitis. Those numbers are not considered in "failure" categories. but the things I listed above are how a succesful jpoucher lives.

To your last question... if I were you.. I would definitely consider surgery.. as it seems you are.. hence your posting. However, I would fully research, question, and think about whether I wanted a jpouch or a permanant ileostomy.
good luck with your thoughts.

ok.. lady vic. your last questions are now simple to answer! Yes, you are prone to more dehydration once your colon is removed. BUT, this is manageable. You have to be smart and take care of yourself. Many of us drink electroylyte beverages and most of us are very cognizant of our hydration status.

I believe most of your nutrition, vitamins, etc.. are absorbed in the small intestine. B12 is absorbed in the bottom of the small intestine. I don't think that people that go straight to a permanant ileo have any problems with B12. However, if you had a jpouch and it got removed.. like mine.. yes you many be B12 deficient. I give myself a shot once a week. No big deal at all.

Also it is not uncommon for jpouchers and excised jpouchers to suffer from anemia. It is my understanding that the medical community does not understand why yet. For myself, I get my blood work done regularly, and sometimes have to go for a series of iron infusions. Again, no big deal at all.

bootstrap.. not to get "into it" but obviously I too have done a significant amount of research. In addition, I am speaking from experience. I HAD a jpouch that was connected and supposedly working. I am in contact with others who have had "succesful" jpouches and others who have had their jpouches fail and have had to have them removed. In fact, one of the most followed blogs out there in the IBD world is from a person who went through a similar process as myself with a failed jpouch and now has a permanant ileostomy.

My reason for participating in these type of forums is not to look for help, advice, or comfort. Rather it is to educate people on things that the medical community and others do not necessarily share and to assist and guide others who end up in problematic situations like myself. In my post I was simply explaining that there are significant reasons to consider or NOT to consider a jpouch, particularly in relation to the poster's question #4. I know some on this forum chose to go straight to a permanant ileostomy and I strongly believe this option should be considered even though the medical community seems to almost "enforce" the jpouch avenue. Because clearly the jpouch is not the end all be all answer that some make it out to be.

The jpouch success statistics are vague. The concept of success verse failure is subjective. I pointed out that the word "success" in jpouch terms was not pre-UC habits and oftentimes include lifetime potent antibiotic usage or the serious IBD drugs like 6MP and remicade which clearly the poster was not agreeable with. The jpouch is a relatively new surgery. They are just now discovering that cancer is occuring in jpouchers and there is quite a bit of recent concern and medical research being done about UC turning into or Crohns or Crohns appearing after a jpouch becomes functioning. I am not anti-jpouch. I am anti- not being aware of the full ramifications of what a "succesful" jpouch is and what a failed jpouch really means.

I believe the poster was asking about whether she should consider surgery and whether a jpouch or straight perm ileo was the way to go. I was simply providing information for her to think about in her decision making.

I am sorry you consider my personal jpouch experiences negative. I did not express my attitude. I expressed facts based on my own personal experience and interaction with other connected jpouchers and medical specialists who focus solely on patients with problematic jpouches in order to assist the poster with her decision making process. I was not posting for or against a jpouch. I was simply providing experiential and educational information which oftentimes is completely overlooked and many don't find out about until after the fact.

I wish you success once you actually have a jpouch connected and hope it meets your expectations for "success". The value of a forum is for people to share their experiences. Real world experiences should not be negated just because they do not agree with someone else's opinion.

I've had a bag for about 12 years, it's not as bad as you may think it is, I do wish I didn't have it, but things could be worse

This is my thoughts so far:

The Colorectal surgeon I talked to from Cleveland Clinic was really pushing the J-pouch and acted like it would solve all my problems including my horrible joint pain. I thought it sounded too good to be true, so I really appreaciate anyone telling me the things to be concered about.

Cleveland is about 1 1/2 hours away and I get very nervouse there. My family Dr said if I go J-pouch I really need to go to Clevelnad but it I go with the bag the local hospital could do it no problem.

I'm so tired of the constant belly pain & joint pain. I can not plan anything since I never know how bad I'm going to feel from day to day. I can't drive since I'm on pain pills most of the time and even if I'm not I'm afraid while I'm out I'll have an attack and need to take one.

I'm afraid that the pain I have now (the known pain) is maybe better than the pain (the unknown pain) after surgery if I end up with complications but I really am thinking of taking the chance. I really am tired of all the drugs I have to take and would love to be rid of them.

So then I can't decide to go with J-pouch which has a greater risk of complications and have to have done in Cleveland or to just go with the bag and if I do that, should still go to the Colorectal surgeon in Cleveland or is the General surgeon here sufficient.

For those of you who have had the surgery what type of surgeon did yours? After you have healed what medicine or vitamines do you have to take? I really am trying to get as much information as I can before I make a decission since as you all know once you get your colon removed you can't put it back.

Thank you again for all your help!

Only you can decide which surgery is right for you. They are all valid choices. But I do have two pieces of advice:

1) I would not factor the driving time or the city in to your decision. A three-hour round trip of driving is practically invisible next to a lifetime of living with the results. And while you are there, 100% of your time will be spent in the hospital, where you will be getting much better treatment from the Cleveland Clinic from what I hear.

2) If you decide you do not like a j-pouch, it is possible to reverse and go back to an ileostomy. (That's what the 4-10% of "failed" cases do.) If you start with an end-ileostomy and seal up the anus, then it is impossible to change your mind and revert to a j-pouch... (unless you started with the intention of having a j-pouch created later and leave the right "pieces" in place.)

Just my two cents.

Somedude makes a good point as do others. I am the one who is on my third ileostomy stoma in the past 9 months. I needed a permanent ileostomy due to severe rectal/colon/small bowel scarring that strictured (scarred in) my rectum, colon, and small bowel during a pelvic organ prolapse surgery in 2006. Lot to it, on review of the scan upon which the surgery was based, i did not have many of the prolapses that these two docs "fixed"........not your typical surgeons.

upshot was i was without the use of my rectum, colon, small bowel for 13 months until i found a doc willing to take the risk of scraping scar tissue off my small bowel and doing permanent ileostomy. I was great for four years and did a LOT of travel having come close to death literally.

this past march my stoma severely stenosed at the abdominal wall level and i was basically in hospitals IV fed for 3 months. my ileo doc had retired and his replacement basically blew me off. Yeah!SO I have met them all. Anyway, I found another doc who lysed adhesions lapro and made me a new stoma. it was great for a month, then stenosed at the skin level.

so i had to find more help. This time i flew cross country to make a fresh start. i had a top notch surgeon at a major med center who tried to do this lapro. I had so much scar tissue in me she had to open me, but she did make me the picture perfect stoma, but it has issues with not being able to pass effluent that is very thick. SO she did a 5th finger test and found the stoma to be open then had me have aa retrograde enema xray to check for narrowings or twists and none found. the stoma does not move in and out of me like my first stoma did so cannot move out thick effluent. so I have no clue what is up. i see her again this week. she really worked hard for me.

Some important things to ask yourself. Have you had any or a lot of prior pelvic surgery? (If yes, then you may already have adhesions. They are dangerous and the more surgery you have the more adhesions you can get and they can block off your small bowel and give you obstructions. If you have not had many or any prior surgeries (especially open surgeries) you are not as likely to have an adhesion issue pre-existing.

ANY surgery causes adhesions but a one time laproscopic surgery done with Insuflow warmed-humidified CO2 insufflation gas done by someone who uses meticulous methods and is a board certified colorectal surgeon, you would likely not form many adhesions. I do know that certain colorectal surgeons at Cleveland Clinic do use Insuflow. If you have this done I would highly suggest going to Cleveland and having the least complicated procedure done. Many of these internal pouches are still in the experimental stages and remember like somedude said you never really know how things are going to turn out.

Best of luck to you. I know I rue the day I had that prolapse surgery. my only issue was it took me 2 to 4 hours every morning to finish what would amount to a normal bowel move, like it was incomplete rectal emptying. Boy would I go back to that in a heartbeat if I could. BUT I did not have a disease and pain and all that you have so we are not same situation. I am just our spokesman for adhesions, something never mentioned on consent forms.

I wish you well in your decision. All my best, Rosemary