Need advise about surgery

I think the most common response you are going to hear is something you have already thought through. That is, you can try the j-pouch and see how it goes (should give it a year at least unless it's simply unbearable), and can revert to an ostomy at a later time if things don't work out with the j-pouch.

Several people on the site have since been diagnosed with Crohns and manage their disease with a j-pouch fairly well. So it's not impossible to live well with Crohns and a j-pouch, but there's no way to say for sure how you individually will do.

Remember, an ostomy does not cure Crohns disease either. It does make living easier from what I know - but the disease can still take a toll on you.

One thing I would really consider in your decision: what is the j-pouch experience level of the surgeon you are working with. I doubt I would opt for j-pouch surgery now if I didn't have a lot of confidence in the surgeon's experience and abilities.

Steve

You could private message Atul . He also lives in Mumbai and has an ileostomy. He's a wonderful person and very helpful.

I agree with Steve/ElmerFudd - you could try the j-pouch and see if it works for you. If it doesn't you can revert to an ileostomy.

kathy

I agree with Steve. A pouch is worth a try, and not permanent. Try to find a good surgeon. That does make a huge difference. Best of luck.

I completely disagree with the philosophy of "try a pouch and if it fails.. well then go for the permanant ileostomy". That path is NOT a simple path. If your jpouch fails you will go through some period of time probably 6 months minimum to even 10 years max... of drugs, tests, treatments, etc... searching searching for how to get it to work. Meanwhile you could be house bound and going to the bathroom 40+times a day and in constant pain and on medications that are wrecking havoc on the rest of your body. If after finding help... it is decided to go to a permanant ostomy it can mean 2 additional operations. One to temporarily divert the jpouch so that you can regain some health and be strong enough for the second operation to take everything out. Also the jpouch removal operation (the 2nd one) is a very serious, very complicated operation. Much more serious and complicated than the initial jpouch creation operation. So if you go through all of this.. at best you could have "wasted" 4 years of your life!

Also - jpouch "experts" are hard to find. So if you have problems with your jpouch your care may very well be beyond that of your local GI. And if you end up in an ER or A&E anywhere, most likely they will have no clue what a jpouch is. Doctors are far more familiar with ostomies.

I am speaking from personal experience. Please trust me with the fact that "you can just try it" approach is NOT a way to think about it. I was really never given the option of a permanant ostomy. I was told ALL people in my health state got jpouches and when I asked about a permanent I was laughed at by my "top notch trained at Cleveland Clinic" local colo-rectal surgeon. My fault for not doing further research. But now I feel if you know you can live with an ostomy - then why would you put your body through the additional surgeries and potential medicines required for a jpouch? Your small intestine was never meant for the function it is being forced to do when a jpouch is constructed. Also an ostomy does not limit you from social or physical activities of any sort.

However, please keep in mind, that jpouches do work for many. I am simply trying to explain what is entailed should the jpouch fail.

Lastly, I encourage you to try and think about quality of life, impact of everything on your total body health, and time involved that you cannot get back.
Best of luck.

The odds are in your favor that you will have a successful surgery with a highly skilled surgeon. It was definately a risk I was willing to take, however, I knew with as much certainty as possible that I had UC not CD. So I can see why you are conflicted. There is nothing wrong with opting for the ileostomy especially if you know you'd be okay with it. That's something I knew I didn't want to chose for myself but if my j pouch fails me tomorrow, I know I would be ok with the ileo. Good luck with your descision.

Thank you all for your replies. You all are saying that j-pouch should be tried IF you are sure of the surgeons experience and expertise. Now as many of you are aware, IBD patients in terms of % of total population is much lower in India and asia/elsewhere in general. It is difficult for surgeons to develop that much expertise when there are not enough patients. So, there are no IBD specialists here like yours. We have GIs and GI surgeons, some of whom have done more of these surgeries. They are mostly UK trained/ goes outside for training. For example, I live in Mumbai. There are no IBD hospital like your cleveland, but yes, in each of the top 7 or 8 big multispeciality hospitals in mumbai, there is anywhere between 4 to 12 GIs, and 1 to 3 GI surgeons. One out of these surgeons in each hospital has done more collectomy/j-pouch/ileo than others, so he gets all patients. The surgeon I have talked to is a very reputed GI surgeon, has done 30 j-pouches and 10 permanent ileo in last 10 yers. He claims only 1 poucher has reverted and 2 more are having issues/very unhappy. He also has given contact list of 15 patients to get feedback (lol - remaining are unhappy?). And yes, in my city there are 6/7 more like him, some might have done slightly more or less, but none are doing all the time like cleveland or some other reputed specialists of yours.

Do you feel this surgeon is somewhat experienced?

@Kathy - I will try to contact Atul.

Anybody else know any other Indian IBD patient/poucher?

Atul has had the j-pouch created but hasn't yet had it all hooked up as I recall. So he could also give you information about j-pouch surgeons.

I also agree with Liz about the time involved if you have multiple surgeries. I had a 3-step surgery - an end ileo, a loop ileo, and takedown/functioning pouch. I thought I'd hate having an ostomy but it wasn't horrid at all. In many ways I had a better quality of life with the end ileostomy. (The loop ileo is just plain naughty.) Of course, knowing what I know now, I might have stayed with the ileostomy.... just because I hate hospitals and surgery.

If you're fine with the thought of an ostomy then that may be the way to go. I wish there wasn't such a stigma attached to ostomies because they don't deserve that negativity.

It sounds like you've really done your research and whatever you decide to do will be well thought out.

kathy

get second opinion of other GI.
pouch surgery is a major surgery and to be a permanent stoma is also quite difficult.
remember UC can manage if it is in early stage with proper treatment.
if CD then it cant avoid by pouch surgery.
best of luck.

@parag I have already taken opinion of 2nd GI he says either go straight for surgery or try remicade for 6 mths if some drastic improvement ok, otherwise go for surgery. BTW do you know any GI surgeon in mumbai/elsewhere who has done lot of colorectal surgeries? Have you heard of Dr. Sanjay Nagral?

@kathy if I am going for permanent ileo, my surgeon also want to remove full rectum, anus and sew it up. I heard sometimes that sewd anus take time to heal and in a few cases lead to complications. If I want to keep the option of j-pouch later, then I have to tell him that way and he will do 1st step of your 3 step, but it seems many have frequent mucus discharge. With colostomy bag I was very comfortable, but with ileostomy bag the output will be more watery I guess as it is not coming via colon and some digestive enzymes might be present which might cause more skin irritation. Can anybody give some opinion?

But maybe these are issues which can be handled. In Mumbai we have many 'ostomy society's with large no. of members, they provide all ostomy supplies at a very affordable rate because they bargain while purchasing in bulk from advantec/coloplast/others, also they have monthly seminars for enlightenment which also become a meeting/discussion place for the members. I am sure this will be of help to me in case of a permanent stoma.

In response to Liz, I won't disagree with the fact that j-pouch to ostomy is complicated and difficult. However, I won't discount the "try the j-pouch because you can still revert to an ostomy later" way of thinking about it. There is truth in that statement - and it does not work the other way (once the rectum is removed and things are sewn up, there will be no possibility for a j-pouch). I don't think anyone was trying to minimize the difficulty of that path - just the reminder that is often put out there that an ostomy is usually a one-way trip and if you are considering other options it's good to keep in mind.

With respect to your decision, you seem to have a LOT of good information on all things. And yes, an ileostomy is typically more liquid and is more likely to cause skin irritation. However, it's amazing how resilient the peristomal skin is - it heals very fast and usually you can resolve any issues that come up. Again - not to say that it doesn't have it's own challenges. But I was very happy living with my ostomy for 8 months - I got back to being healthy and doing things I really enjoyed (and very minimal issues to deal with).

Steve

Then it seems like going for the j-pouch with an end ileostomy might be the way to go. Your surgeon may or may not create the j-pouch during the first surgery (if it's a 2-step). You may not experience as much mucus with an end ileostomy. However, I did experience it even with the end ileo. If you have a 3-step and the second step is creating the j-pouch then you may continue to experience UC in the rectum until that surgery. Once the rectum is removed those symptoms may go away. (I'm now even confusing myself.... is this at all understandable?)

Atul has had a j-pouch since 1998 I think and he may still decide to go for hook-up at some point.

You might want to private message JillM about her permanent ileostomy. And there are others who have a permanent ileostomy who have chosen not to have their j-pouch removed and they're doing fine.

kathy

I think Liz has a valid point that you should not consider j-pouch surgery as sort of a "test drive" situation, where you can easily have it removed and opt for an end ileostomy if it does not work out for you. Ordinarily, it would make sense, but with an indeterminate diagnosis, it is far less certain what your outcome would be.

What I would suggest is the 3-step approach, leaving you more time to consider all possibilities without having to decide definitively all at once.

With the 3-step, you have a total colectomy, leaving the rectum in place for future j-pouch surgery, and have an end ileostomy. This gets the diseased colon out (although you may need treatment for the retained rectum) and you get to live with a real ileostomy (definitely not the same as a colostomy). In addition, they will have the entire colon to examine for signs of Crohn's disease to help make the next decision. They still may not be able to determine what type of IBD you have, but this definitely buys you time to think without pressure. You should have 3 months or more, if you wish, to figure this out.

Once you decide, you can have the retained rectum removed or j-pouch construction. If you opt for the j-pouch, there may or may not be the 3rd step of a diverting ileostomy, depending on your health at the time.

I know that there is much for you to consider, and now I think having time to fully ponder it all is important. You can't do that when you are suffering an unrelenting flare that is just making you sicker.

Good luck!

Jan

Yes, I like Jan's approach. Just get the colon out for now. It is really the first step in either path you would take. Then you can get well. You will have an end ileostomy which is easy to care for. You may have rectal issues to deal with but usually they will not be too bad. Then you have time to decide... permanant or jpouch. However, based on your positive attitude about ostomies and the support that is offered in your country, it seems like a permanant ileostomy may be a good choice for you.

Also,I believe I am the only one that has posted on your question here who has actually suffered through a 3step jpouch construction process, then a failed jpouch, then a diverting ileostomy, then finally an excised jpouch with everything removed and a permanant ileostomy. I'm now on my fourth stoma and I think a total of 9 surgeries. In addition a lot of hardcore medicines, a lot of trauma on my entire body, and a lot of years that I cannnot get back. So for anyone to suggest to "test drive" a jpouch is completely unfathomable to me. Either you go into the jpouch situation firmly believing it is the right solution for you or you don't do it.
again.. best wishes on your thought process, but more importantly regaining your health.

You're right Liz, you definitely have lived through the worst case scenario and know that it is no joy-ride. On the other hand, it not the usual outcome, so most people look at it from that angle and the fact that in most cases the odds are in favor of a good outcome with the j-pouch.

However, in this instance, the scales get tipped less in favor of the j-pouch because of the indeterminate diagnosis and living in a region where there is limited experience by the sugeons, due to reduced occurrences of IBD. Most people think in terms of their own knowledge base and experience. Hindsight is always 20/20. If only we could see into the future, these types of dilemas would be much easier to figure out. How do you decide when the only "expert" you know, your surgeon, does not guide you on your decision?

Probably a good idea for the original poster to interview his surgeon's prior patients too, since they have a local relevance.

Jan

Thanks all for replying with views and suggestions, specially Kathy, Liz and Jan dollar. Jan - I have seen you replying in other threads too - you possess a brilliant combination of knowledge, judgement and language skill.

I am still inside flare-up but at the same time I am on steroid taper course also. In the last one week I met both GI and GI surgeon, GI now intend to go slow about my surgery, talking about august 1st or 2nd week now. She wants to bring down steriods to as low as possible. It is at 20 mg now, reducing by 5mg/week. She also has brought down azoran from 100mg to 50mg. Can anybody tell how important it is to bring down steriods before surgery? I am still very weak and getting weaker/fatigued by the day. I am facing problems of severe gas formation possibly due to steriod/azoran taper. Should I stress on getting the surgery done at an earlier date - they seem ok with that also.

My surgeon wanted me to slowly taper to 10mg or less of prednisone before step 1. I couldn't get below 20mg without feeling very miserable. He told me it was better I felt good than to force my body into lowering to 10mg. So, I had the first step while on 20mg of prednisone. Strange thing was, he gave me a steroid boost during the surgery and I woke up with a Humpty Dumpty face and very swollen ankles/feet. He then had me taper very slowly and it all worked out!

I just got back from hospital for pouch removal 2nd trip due to a sleepy bowel partial obstruction (worst pain in the world). I was diagnosed always with UC. Had lots of issues early on mostly chronic pouchitis and structures. Knew last scope it had to go, stretched out and stricures. Shocked when surgeon said the pouch was chrons and a small amount above the pouch. There is theory chronic pouch issues can change the UC into chrons. When I had the pouch I did not even think I would end up with the issues that I ended up with for 7 years. Sadly some of us draw the short end of the stick with the pouch. My only worry for you is that the diagnosis is not one or the other with regard to getting the pouch. Whatever you choose please kkow that all of us will support you. We all know what a difficult decision you have to make.

Stay away from the J Pouch, even if you have UC, the pouch is nothing but a bad compromise, it's caused nothing but misery for me and I'm sorry I chose the surgery. Whereas things could be even worse for you if you choose the surgery and later discover it was all a waste of time because you have Crohns. Don't believe that 80% of J Pouch surgeries turn out great either, if that really was the case why are so many problems posted on this board? I only wish I could have my diseased colon back now.

Now come on, let's be fair! Of course a support group will attract a higher percentage of people with problems. People who do not need support tend to not post in places like this. They are living their lives, not focusing on compromises they have made adjusting to the j-pouch. Certainly those who suffered serious complications will have a lower quality of life than those who did not.

It is important to remember that there is NO surgical option for UC or Crohn's requiring a colectomy that is perfect and will restore you to where you were before your diagnosis. So, you must be realistic. For virtually all of us, colectomy was not a first option, but a reasonable choice to avoid an ostomy.

And the 80% satisfaction rate noted, is accurate for some centers, but others, such as Cleveland Clinic, is 95%, so it depends on where you have your surgery. Pouch failure rate is only about 10%.

Put things in perspective, do your homework, And you should be able to make an informed choice. Certainly, indeterminate UC and possible Crohn's make the decision more difficult, but not impossible.

Hope for the best, but prepare for the worst and you will be fine.

As to the steroid taper, yes, best to be lower than 20mg at least, if you can. I was on 80mg, not a good thing, but there was no choice in the matter. I was up against the wall. It caused serious complications, but I am OK now.

Jan

special thanks to CeeeeCeeee and Gmarie for sharing your experiences. Seems it is desirable if I can reduce prednisolone but might not be essential.

I am facing problem of extreme tiredness and fatigue, muscle and joint pain also, I am taking 10 min to walk a distance people can cover in 1 min, pushing open a door or going up a staircase is becoming almost impossible by the day. I know that I have to hang in there and pass 1 day at a time for the next 15 days/ 1 month till my surgery. But any suggestions/tricks to cope with weakness/tiredness during a flare-up? Electrolyte drinks? glucose drinks ?(I have problems with sugar) or nothing works?

Also BCIR and Kpouch options

Dog Day/Fredbird - once again you make an anti-jpouch statement without any backup evidence. Everyone knows that you don't like your jpouch but that's a personal belief. It certainly isn't true for the vast majority of pouchers.

kathy