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Should I stay or should I go now? Can anyone help me decide on whether or not to have Jpouch surgery

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Ulcerative Colitis
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Posted Today 8:28 PM (GMT 0)

I'm trying to decide on whether or not to have Jpouch surgery and I am having an extremely difficult time trying to decide whether or not I should have Jpouch surgery.

 

I have had UC for 10 years with three major flare ups that required hospitalization. In between, you wouldn't know I have UC. I pretty much eat what I want, and I have 2 to 3, leaning more so to the 2, bowel movements per day when in remission. In conversation with my UC doctor, he advised me to have the surgery. However, I also have a doctor caring for my arthritis, and he advised me to pursue the remicade and tnf blocking medications currently out there.

 

Because my remissions are relatively pain and bowel movement free. I have had reservations about Jpouch surgery and the implications that come with it. I may be living on false hope because of my quiet times, and I also know that going into surgery when you are in better health ensures a better recovery. So my dilemma is in trying to come to a conclusion as to whether or not to have the surgery.

 

So my question to all, and hopefully you can assist...Where can I find more information to help me make my decision?

 

Sincerest of thanks,

Dominique

 

4800mg Asacol

100 mg Imurane

350mg Remicade

75 mg Alendronate

 

Posted Today 8:59 PM (GMT 0)
Hi Dominique, welcome to Healingwell :) The ultimate decision is up to you and a highly personal choice. But a few places that can offer more insight is the Ostomy forum here on Healingwell as well as www.jpouch.org.
Posted Today 9:03 PM (GMT 0)
Hi Sherry:

Thanks for the response. I am familiar with the JPouch.org site, but noted that most of the posted information is dated.
I will look into the Ostomy forum in Healingwell.

Regards...
Posted Today 9:12 PM (GMT 0)
Just my 2 cents but I would say that if the flares are too much too handle then go for it. However, I know a lot of people have success with Remicade and other meds. It's definitely a highly personal decision. If you don't have any cancer concerns and you can handle the flares when they come then I say hold off. Surgery for me will be a last resort if things turn for the worse and don't respond well to the meds out there over a lengthy period of time. There are also risks with surgery so make sure you spend time researching those. Definitely don't rush into it though until you have thought it through thorougly as I imagine it's not irreversible. Don't let your doctor push you toward something you are not ready for.

Posted Today 9:15 PM (GMT 0)

Dominique,

Only you know what your quality of life is and how long your remissions usually last. As for me, I'd say I'm in remission but I can't eat what I want...it's kind of a trade off to maintain my quality of life. However, if my current methods do not return me to full health...I will be faced with the same decision as you. All I can say is...do the research about...recovery (post surgery), how your life will change (required supplements, diet, etc., possible infections, etc.) and make an informed decision.

NBT

Posted Today 9:24 PM (GMT 0)
Dominque,

Having made the decision to have surgery 7 years ago I can honestly tell you that making that decision was extremely difficult. My GI first proposed surgery at the one year mark of a ongoing severe flare I had. His thinking was that staying on prednisone was not acceptable for managing the disease. At that point I opted to try 6-mp to get off the pred but after 1.5 years I realized that it wasn't going to work. It was at this point that I was so afraid of long term side effects from prednisone and the unknown (at that time) side effects of 6mp that I opted for surgery. For all of us who have had surgery I would venture to guess that making the decision to have surgery was the hardest part. This is something that you will personally need to decide. However, I would encourage to make no decision if you aren't 100% behind it. Surgery and recovery are difficult and recovery is easier if you have bought into the decision whole-heartedly.

I had surgery prior to the release of Remicade. I think that most doctors are using Remicade as a last ditch effort before pursuing surgery. Back when I had surgery Immuran or 6mp were considered the last stops.

Sue
Posted Today 11:56 PM (GMT 0)
Dominique,you say you've had 3 major flares in ten years.That's one every 3 years and 4 months.I think the question is,how long are these flares and to what degree are they hampering you i.e;work,do they understand,is it financially stressful?If you have the j-pouch,you won't have those "normal" periods of 2 movements a day,it will be several.I'm not decrying the procedure,many have benefitted,but I believe they were spending much more of their lives in a flare than you seem to be.

Obviously only you know what's best,but I'd urge you to assess the extra bm's you'll have permanently from a j-pouch,against the worry and hardship of your flares.Whenever I'm flaring the thought of surgery seems attractive,then I get back under control and think I'm glad I didn't pursue it.This disease varies so wildly in it's severity,only the sufferer knows if surgery is the best option.By saying that,I also mean above the opinion of any doctor.They can examine your colon all they like and "grade" the inflammation,they have no idea how badly it affects your lifestyle.That's why the best person to decide on surgery(or not)is you.That's my two pennies anyway!
Posted 12/4/2007 1:17 AM (GMT 0)
Dominique, I don't know how extensive your UC is or your family history, but sometimes doctors will recommend colonectomy for reasons other than controlling the UC. I've read that if you have pancolitis for more than ten years, your chance of developing cancer increases significantly. That may be why your doctor is suggesting you consider surgery. Or if you've ever had dysplasia on your biopsies, that would be a factor too.

Probably it would be a good idea to talk to your GI and ask why he's encouraging you to think about surgery at this point. That will help you to make a decision in a more informed way.
Posted 12/4/2007 3:35 AM (GMT 0)
If you are being hindered by UC then it's best to have the surgery, and it is the only way to cure it. I have an ostomy, i opted not to go for the j-pouch. No meds were workign for me, and even when i did have something that was keepign it under control, i was always waiting on it to fail. And they all did, remicade was a miracle for me for about three months, then it started failing too. I was missing out on everything, and i was tired of it. It was hard to decide on surgery, and in your case a J-pouch will mean going to the bathroom more, but it will also mean that the sickness is gone. No more meds, and that's a plus. The best thing for you to do is to talk to people who have them, and find out personal experinces, i actually found that much more helpful than my drs advice. When i orignally went to him to tell him to get me a surgereon he pretty much pushed remicade on me, then when i went back after it failed, he was trying to talk me into a j-pouch and to try other things, and i looked at him and said, either you find someone to thake this out, or i will do it myself. I had found myself, for about the past year, before i opted for the surgery, hopign i would develop something that woudl require an emergency surgery so i wouldnt' have to make the decision, isnt' that awful? and it is better to go into it healthy
Posted 12/4/2007 4:11 AM (GMT 0)
The other thing I would add is -- have you tried something novel (but reasonably effective in trials) such as the pig whipworm egg therapy yet (TSO)?  It has given me hope for the first time of getting off of Prednisone. It definitely has taken a big bite out of my UC and no side effects whatsoever.  The main side effect for me is a big drain on my bank account, but it seems to work in my case.   I realize that there is a strong chance I will eventually lose my colon if I develop confirmed dysplasia, but in the meantime I am giving TSO a good college try and so far it is working, and at the very least it will buy me time, hopefully, to get off pred and stay in remission prior to any fateful surgery decision.  I wouldn't resort to surgery unless I first tried treatments such as this.  The other non-toxic option out there worth trying, in my view, is the fecal bacteriatherapy i.e. infusions of healthy donor stool up the butt. 

Posted 12/4/2007 7:59 PM (GMT 0)
Id check out that jpouch.org site real well before I did anything... It seems those guys have as much problems as we do.. It was disheartening to me..
Posted 12/5/2007 12:11 AM (GMT 0)
I had surgery for the jpouch about 18 mos ago and it was the best decision I ever made. My situation was very different than yours, but it was a very hard decision to have the surgery. There are a lot of what-ifs in any situation like that. Jpouch.org can be a useful site for peer support, although there are also a lot of people posting there for help. Unfortunately, much like here, those who are doing very well are too busy living life to post often. I am as guilty of that as anyone. Be aware of the risks, but don't get carried away by reading the site and think that everything will be a mess. It's much like childbirth-- the worse it was, the more people will tell you about it.

I had a 2-step jpouch, and I did have a few complications in between surgeries. It was still worth it.
Posted 12/5/2007 4:28 PM (GMT 0)
I had my Jpouch surgery 2 years ago and it was easily the best decision i've ever made. Don't let the forum mislead you. I'm sure for every one of those people, there is another who doesn't post on there because they are healthy and living there life. Since the surgery I have no urgency, no cramping, and no medications(UC related atleast :D). It's ultimately up to you, but if I had to go back and do it again, I would of done it the second I found out I had UC.
Posted 12/5/2007 6:36 PM (GMT 0)

Jeremy said...
r. Snuts""]I had my Jpouch surgery 2 years ago and it was easily the best decision i've ever made. Don't let the forum mislead you. I'm sure for every one of those people, there is another who doesn't post on there because they are healthy and living there life. Since the surgery I have no urgency, no cramping, and no medications(UC related atleast :D). It's ultimately up to you, but if I had to go back and do it again, I would of done it the second I found out I had UC.

Thanks for the post, I think alot of us are holding on to our colons hoping a cure will come. And it may..
Posted 12/5/2007 7:37 PM (GMT 0)
I would check out remicade. If it helps you with the arthritis - maybe it's a win-win situation for you.

However, flaring every three years seems tolerable to me - someone who flares yearly. It's a matter of perspective.

Of course - like others have said - surgery is a choice you have to make with your doctors.

PS - a second opinion is NEVER out of the question. Have you checked into one?
Posted 12/6/2007 2:06 PM (GMT 0)
Thank you to all who have taken the time to offer truly valuable insight. It is growing increasingly apparent that this is a decision that I will have to weigh out and come to a decision myself. I was hoping that my disease would make it for me, however, it is just not that cut and dry with my particular case — and for that matter anyone else’s. I desperately want to hang on to my colon as long as I can, and I think that I prefer to hear only the advice that supports that decision.

The reality is that it seems that I am unable to make the decision, and my decision to lean toward the surgery is solely based on what my GI has told me. He has told me that if he was me, he would go for the surgery and not one of his patients have ever regretted making that decision. That to me is a huge factor for I have come to trust him over the course of the ten year period being his patient. But when I visit some of the sites and hear of the complications, it quite frankly frightens the surgery right out of me.

My GI has also informed me that the longer I keep my colon and it lives in a diseased state, the higher the risk I am for colon cancer. I have also been informed that the older I get, the more difficult it is to have the Jpouch surgery because of muscle tone in the sphincter. I’m hanging my hat on his advice; however, I have wild mood swings on whether or not to have the surgery.

So as you can see, I am incredibly conflicted and know what not to do.
Thank you again, for I truly appreciate and greatly respect the insight of those of us who live with this disease.


P.S. Wouldn't our lives make for a great "reality show"?
Posted 12/6/2007 2:35 PM (GMT 0)

You are doing the right thing by seeking all the angles.

The older you get the more problematic jpouch surgery becomes?  I am not sure about that one, or any other advice from just one GI.  I would check around and look for hard evidence.  I asked that question once on the jpouch forum, and also searched pubmed, and it didn't seem as if there was any strong correlation.  Obviously, as one becomes older, recovering from surgery can become more problematic, everything else equal, but I am not sure this is significant as long as one is in otherwise good health (apart from the issue of the level of UC activity and the prior damage, which seems to affect the types of surgeries).

I have noticed from peoples posts on different forums over the years, that one GI can be extremely gung ho about surgery and others are very wary unless it is an absolute last resort.  I would never let a single GI or doc make that decision for me though-- ask around and get second and third opinions before doing anything drastic unless deep inside you have decided 100% for yourself.  And you did have a long remission, so who is to say you won't get another? 


Posted 12/6/2007 2:55 PM (GMT 0)
I don't think you and your GI can sort this out. It took a consultation with a CR surgeon for me to get my hands around the idea and to get a good understanding of where I stood. Even after a surgical consultation you don't have to make a decision but at least you will be armed with more information.

Age doesn't have much do with success. There are j-pouchers who had their surgery in their late 60s and early 70's. I was in my early 40's when I had my surgery and quite a few are in the 50s. My GI also gave me conflicting information. He told me that I would have diarrhea for the rest of my life if I opted for surgery. Nothing could be further from the truth. I think that many GIs don't have j-pouch patients and therefore don't know what life is like living with a j-pouch. It certainly is true for my GI, I had surgery 7 years ago and have not seen him since!

Sue
Posted 12/7/2007 8:31 AM (GMT 0)

Brookview said...

I'm trying to decide on whether or not to have Jpouch surgery and I am having an extremely difficult time trying to decide whether or not I should have Jpouch surgery.

 

So my question to all, and hopefully you can assist...Where can I find more information to help me make my decision?

 

The other people on here gave great advise on the websites http://www.j-pouch.org and the ostomies forum here on this site.   I am in the same boat as you...trying to decide whether or not to have the surgery.   I have been advised by several docs now to have it.    My GI doc had never really brought it up to me in the past, at least until I was hospitalized last month.  Apparently the flex sig I had in the hospital showed that my disease has progressed,  and my usual treatment with steroids was not working.  His method of approaching the subject of surgery was to tell me that he had patients that said they wish they had the surgery done earlier in life, and some patients that said they wish they held onto their colon longer...and then he went on to say that the decision has to be totally up to me.  So,  he then referred me to a general surgeon to talk to him.  I saw him yesterday.   He recommended surgery to me for several reasons:  1.  my age.  He said I"m "young" (woo hoo) and with every year I have UC ,  my cancer risk goes up.  2. my diabetes.  Steroids and the inflammation raises my blood sugar.  3. My options for med therapy is limited.  I have already tried so many UC meds, and the fact that they haven't been controlling the flares or  not tolerated well, that surgery would be the next step. 4.  the biopsy results from my flex sig in the hospital.    It was showing possible dysplasia. and finally, 5.  The fact that I"m proving to be prednisone-dependant.   The steroids are very bad on your whole body,  so it would benefit me to not have to take the darn stuff anymore.  So, now he's referring me to a colo-rectal surgeon that does the surgery laparscopically.   I don't know how much of that would apply to you,  but I think getting a second or even third opinion would benefit you as well.  I am seriously considering getting it done, but still have so much more research to do, and hearing from those that have had it done. I've been visiting the forums listed above as well... I wish you lots of luck on finding the decision thats right for you.  :-)

Posted 12/16/2007 10:42 PM (GMT 0)
I've had UC since Aug. 2003 (I was 21 at the time, now almost 26) and am also trying to decide whether to hvae surgery. I've been on steroids since February '07 without being able to get off. Thing is I'm still having symptoms even with the Pred. I think it's keeping me from being severely ill but not clearing up the inflammation either. I'm on 15 mg right now - not too high of a dose but I don't want to be on it for much longer and am paranoid to taper any lower. I am leaning more and more toward having surgery because I bleed pretty often and my energy level is always low. I've read lots of success stories on here. Anyone have any suggestions? Other meds that I should look into? I've tried Remicade too and it didn't seem to do too much. My doc doesn't seem supportive of Humira for UC. Thanks for any help!
-Pat
Posted 12/17/2007 7:47 AM (GMT 0)
something doesn't add up here... you have what seems to be a tolerable case of UC. You also have a co-morbidity (RA) that is treated by the drug favored by many UC'ers as a savior (Remicade). Definitely take the Remi and see if both of your conditions improve.

You can only have your colon removed once... if you flare every 3 1/3 years, that means there are approximately 2 new UC drugs available EVERY TIME you flare (taking the average over the past 8 years or so). Next up are Humira. Cimzia, alicaforsen, pred-col, etc.

There are certainly people here who are FED UP with UC and never look back from their decision to have surgery. You don't seem like one of them (you are basically stating that your UC isn't all that bad, despite the hospitalizations). I think the defining mark is if you feel bad even when you're in REMISSION (or have cancer looming), which does not seem to apply to you.

Finally, let's say you don't have UC but actually Crohn's or Chron's colitis. Now you have all the 'fun' of a J-pouch, and your illness isn't gone. For people who elect surgery, that risk is worth it. You don't seem able to justify it, YET.
Posted 12/17/2007 2:09 PM (GMT 0)
I agree with AKB, that's what I was gonna say!  If I was in your shoes, I would not get surgery.  I hope the Remicade helps with your arthritis.
Posted 12/17/2007 11:04 PM (GMT 0)
I remember months before my surgery how I vowed I'd never do it because of how scary the thought was. 2 months later I was told I had no choice really..I got all the information I possibly could on J-pouch and the total colectomy and it still wasn't enough to make me feel like I was making the right decision. After my surgeries and 2 years later - I'm able to take a helicopter trip through the grand canyon, get out and toast with my friends and drink champagne and eat cheese and just take it all in without having to worry about finding a bathroom. I don't think anybody back then could of talked me into surgery being a good idea..i'm just glad I went through with it.

Just remember when you're reading the j-pouch forums with everyone complaining about how horrible it is, and all the things that could go wrong. The only reason you don't find an equal amount of people praising it is because they are out living their lives.
Posted 12/17/2007 11:37 PM (GMT 0)
I suspect the doctor is recommending colectomy because of the statistics that show the risk of colon cancer rises sharply after ten years of pancolitis. Some doctors will tell us that the risk at that point is too high to take. Of course, it's always our decision in the end.
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