if you end up having to control pouchitis and or cuffitis with meds for life would you have been better off just keeping colon or is there still a benefit to having a j-pouch?
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oh thats a tough one. I guess it would really depend on the person and how bad they are. I really didnt have a choice. It was j-pouch or bag. And I wasnt to keen on the idea of bag forever.
thats disappointing. i was trying to justify getting this done should i end up on maintenance drugs for example its easier to treat with a pouch and or less drugs needed etc...
I didn't have a choice either. I had pre cancer cells through my whole colon. So it had to be removed. Also, I do know how you are feeling. I am going through the same thing right now. Just know you are not alone. I had my colon removed Jan. 27,2012 & pouch made and had my take down March 16, 2012. I am just a little ahead of you in time. I was doing great for almost two months but for the past 3-4 weeks have been hell. I am thinking it is the holidays. I give. I just want to quit eating. I can't afford to lose anymore weight. I take lomoitil, loperamide and bentyl and levisin and (codeine - when I can't stop at all), cipro and vitamin D and iron. I think that is all. I am just as disappointed as you are. But I just keep praying every night. Do you take any pills to help you at all control the diarrhea?
i take half an immodium 4 times a day. i dont really have diarrhea a lot or frequency. i go about 6 times a day unless i try to intro new foods 
. i take imodium cause it seems to keep the spasms at a minimum which now im thinking was the pouchitis all along so im going to try to ween off it. most of my complaining is from just feeling plain aweful with anal rectal pain and the straining. oh and of course not being able to eat anything but im hoping that getting the cuffitis and pouchitis under control i can get on with things. i can honestly say the hc suppositories are starting to help my pain but not until my second dose of cipro did my hot bubbly spasms noticeably cool off. so you were doing good on cipro and all the things you take but now took a turn for the worse?
. i take imodium cause it seems to keep the spasms at a minimum which now im thinking was the pouchitis all along so im going to try to ween off it. most of my complaining is from just feeling plain aweful with anal rectal pain and the straining. oh and of course not being able to eat anything but im hoping that getting the cuffitis and pouchitis under control i can get on with things. i can honestly say the hc suppositories are starting to help my pain but not until my second dose of cipro did my hot bubbly spasms noticeably cool off. so you were doing good on cipro and all the things you take but now took a turn for the worse?
To the original query - The benefit of a pouch is that the medications for the itis's are often not as systemic or as bad for you as the medications for colitis. In the case of cuffitis, it is normally treated with suppositories and enemas (essentially topical treatments) rather than the oral steroid Prednisone which is plain terrible in high doses and/or for long periods of time or the biologics like Infliximab which have awful side effects in some people. Pouchitis is normally controlled by antibiotics which might not be great for you but I would prefer to be on Cipro or Flagyl than constant Prednisone and Remicade. So - in most cases I don't think you would be better off keeping a colon in a steroid dependent case of UC.
Keep your chin up mate. It does sound like things are very slowly on the improve for you (having your issues diagnosed is half the battle).
Cheers,
Phil
Keep your chin up mate. It does sound like things are very slowly on the improve for you (having your issues diagnosed is half the battle).
Cheers,
Phil
quote:if you end up having to control pouchitis and or cuffitis with meds for life would you have been better off just keeping colon or is there still a benefit to having a j-pouch?
I think you asked this question once before in another thread and my answer is still the same: for some of us the benefit of being alive outweighs that of being dead and that is why we had surgery. Many of us had colectomy and J pouch surgery due to dysplasia, the threat of cancer, and the colon was all done, so the choice was J Pouch or permanent ileostomy and not keeping the colon. I don't know what the stats are but I believe that most people end up eventually losing their colons due to UC so in the end keeping it MAY NOT BE A CHOICE.
Since my only choice was a J Pouch or a permanent ileostomy:
I have had a J Pouch for 20 years and have been taking antibiotics chronically for 17 years and so far I am none the worse for wear. I was DEFINITELY THE WORSE FOR WEAR TAKING PREDNISONE TO TREAT UC FOR ALMOST 20 YEARS. I have the osteopenia in my bones to prove it.
If I had a permanent ileostomy I would presumably be off those meds, which do not seem to be hurting me, but paying for bags, supplies and (I suspect) medications to control skin problems. I know someone who has a permanent ileo and she is taking antibiotics constantly to control skin infections at her ileo site. I had numerous similar type issues with the temporary ileostomy.
I am a bit puzzled about why you keep asking the same question? Are you expecting different answers the second time, around or the answers you want to hear? The only truth is your own situation so I am not even sure our answers matter in the end. And nobody knows what your situation is eventually going to be.
That was why I went to an end ileo...after my j-pouch surgery I was on as many meds as I was for my colitis...now...none!
Cataja, from what I can recall of your posts back in those days, you had more issues when you had the J Pouch than just being on a lot of meds. I seem to recall you having physical problems and the meds were not working to fix those problems and/or you had side effects from them. If your meds had worked with no side effects, would you have kept the J Pouch?
quote:CTBarrister wrote: I am a bit puzzled about why you keep asking the same question? Are you expecting different answers the second time, around or the answers you want to hear?
i was unaware ive asked this before and im sorry. the reason im asking today is i wasnt diagnosed or on the meds in question til just now so i thought it was a valid concern. besides the answers im getting from you and everyone else are very intelligent helpful and uplifting.
OK, it may have been "BadPlumbing" that brought up this topic, but now that I do a search I can't find the thread. No big deal anyway. The bottom line is what the available options are in your case. A lot of people here really did not have the option of keeping their colon or if they did they were going to be very, very sick and needing surgery when it's too late, exposing themselves to complications a healthier person might not have to deal with.
There are usually no Utopian alternatives if you are in a situation of choosing to have J Pouch surgery or not. There are risks with each choice and you hope that they do not come home to roost. In most cases people that have J Pouch surgery do not end up on meds chronically. You are on a support board so you happen to see a slice of those that do. Those that do not take chronic meds are the majority and they are not here for the most part.
There are usually no Utopian alternatives if you are in a situation of choosing to have J Pouch surgery or not. There are risks with each choice and you hope that they do not come home to roost. In most cases people that have J Pouch surgery do not end up on meds chronically. You are on a support board so you happen to see a slice of those that do. Those that do not take chronic meds are the majority and they are not here for the most part.
ill probably get past this and be med free. i also probably couldnt have saved my colon either but i toil with the "what if i tried this or that one more time" i know ive got to look ahead now and do whats best for the new and improved me. no point in looking "behind" 
Tom, your question brings to mind precisely the reason I never recommend anyone have a colectomy simply to avoid taking medications. Nobody knows what lies in their future and you are only inviting disappointment if the success of your surgery depends on whether or not you can be drug free.
Only about a third of UC patients need a colectomy sometime in their lifetimes, so it is not a given. Regardless of whether or not a j-pouch or ileostomy provides a carefree life (it usually doesn't, but most people downplay the negative because they are healthier), that same group would still require the colectomy. Colectomy does not cure IBS, anxiety, or even IBD. It only cures colitis in the portion that has been removed (or polyposis, or cancer, or inertia, or whatever).
It is regrettable that you and other patients were told that somehow j-pouch surgery was some sort of panacea, but in truth there is NO OPTION that is perfect, including keeping the diseased colon.
As for myself, yes, I did keep my colon as long as I could, but when medical management failed, including high dose steroids, my choice was colectomy or bleed to death. People who have the surgery under less urgent conditions seem to have more trouble accepting an outcome that is troublesome, probably because they are second guessing their decision.
My feeling is that second guessing an irreversible choice serves only to cause more grief, so why even go there? It is like playing "what-if" if you got into a car accident that caused you to loose an arm or a leg. Fretting about "what-if" you never got in the car that day does not bring back the lost limb.
If it were me (and I have had many, many complications) I would focus on what my current choices are and how do I improve my current situation. Hopefully, Cipro will take care of your pouchitis and you can be turning that corner you have been waiting for.
Jan
Only about a third of UC patients need a colectomy sometime in their lifetimes, so it is not a given. Regardless of whether or not a j-pouch or ileostomy provides a carefree life (it usually doesn't, but most people downplay the negative because they are healthier), that same group would still require the colectomy. Colectomy does not cure IBS, anxiety, or even IBD. It only cures colitis in the portion that has been removed (or polyposis, or cancer, or inertia, or whatever).
It is regrettable that you and other patients were told that somehow j-pouch surgery was some sort of panacea, but in truth there is NO OPTION that is perfect, including keeping the diseased colon.
As for myself, yes, I did keep my colon as long as I could, but when medical management failed, including high dose steroids, my choice was colectomy or bleed to death. People who have the surgery under less urgent conditions seem to have more trouble accepting an outcome that is troublesome, probably because they are second guessing their decision.
My feeling is that second guessing an irreversible choice serves only to cause more grief, so why even go there? It is like playing "what-if" if you got into a car accident that caused you to loose an arm or a leg. Fretting about "what-if" you never got in the car that day does not bring back the lost limb.
If it were me (and I have had many, many complications) I would focus on what my current choices are and how do I improve my current situation. Hopefully, Cipro will take care of your pouchitis and you can be turning that corner you have been waiting for.
Jan
i agree with you jan. i just have to get my over analytical mind to join me. i avoided drugs the whole time i had colitis and controlled it by eating only spinach and rice for years. we moved to florida to try and further my comfort but i believe the stress of the move and leaving our loved ones was the final nail in my colons coffin. the problem is that i didnt have aweful symptoms. they werent pretty but not a lot of blood or frequency but always liquid and terrible unrelenting weight loss and to be honest discomfort that im probably minimizing trying to come to tearms with what i let them do to my body even though it was necessary. my ocd riddled mind wasnt built to deal well with this but im tough and i will get to a good place eventually.
My suspicion is that you were not controlling your cokitis with spinach and rice, but just the symptoms. In reality, your colitis was controlling you. I am unsure why you thought moving to Florida would have an effect. Of course, I've never been medication adverse, as I felt there is a time and place for everything. We each have to decide what we are willing to put up with. For me, I would rather take 50 pills a day than not be able to eat what my family is eating! But, that is my choice.
Since I have been dealing with UC for over 40 years (since I was 15), and both my son and husband now also have UC, I learned long ago to try to just take things in stride as best I could. It is not the same as admitting defeat, but more like choosing which battle to fight.
Jan
Since I have been dealing with UC for over 40 years (since I was 15), and both my son and husband now also have UC, I learned long ago to try to just take things in stride as best I could. It is not the same as admitting defeat, but more like choosing which battle to fight.
Jan
two of my doctors brought to my attention how my visits to them always increased dramatically in the winter months so florida was a good idea but just too late. yes i do have to let go now and focus on making the very best of my situation. thank you for all the support. it is very much appreciated...
My colectomy wasn't urgent, and my J-pouch hasn't been trouble free, but I'm still very glad of the trade 10 years in. I'm on chronic Cipro, but that's worlds better than prednisone. Even when the pouchitis flares the urgency and pain are less than before my surgery.
It's worth remembering that we probably have a non-random set of J-pouchers on this site. Folks who are doing just fine are, I suspect, less likely to participate in a support group.
It's worth remembering that we probably have a non-random set of J-pouchers on this site. Folks who are doing just fine are, I suspect, less likely to participate in a support group.
this is my first cipro run. any advice to keep pouchitis at bay? do i need to start a probiotic? is it best to stay off imodium to keep things moving out of the pouch quicker. and and all advice welcome...
My UC was controlled for close to 20 years by meds. Prednisone, Asacol, Sodium
Balsalazide (colozal) and 6MP.
What pushed me to Jpouch surgery was being diagnosed with low grade dysplasia.
Even with the medicines keeping symptoms under control, the ongoing inflamation
increases your cancer risk and it gets greater with each passing year. I'm 52
years old. You're close to that from reading your posts. So you keep your colon
another 10 years and then something like LGD or worse forces you to have surgery.
Maybe 10 years farther down the road you're not even eligible for jpouch
surgery because of other health issues and your only option is a permanent
colectomy. You have your jpouch now and you've got to stay positive and
make it work.
Balsalazide (colozal) and 6MP.
What pushed me to Jpouch surgery was being diagnosed with low grade dysplasia.
Even with the medicines keeping symptoms under control, the ongoing inflamation
increases your cancer risk and it gets greater with each passing year. I'm 52
years old. You're close to that from reading your posts. So you keep your colon
another 10 years and then something like LGD or worse forces you to have surgery.
Maybe 10 years farther down the road you're not even eligible for jpouch
surgery because of other health issues and your only option is a permanent
colectomy. You have your jpouch now and you've got to stay positive and
make it work.
quote:is it best to stay off imodium to keep things moving out of the pouch quicker
I don't know if it is best to "stay off" imodium entirely, but it is best to not take too much, because if you do, it will definitely worsen any existing pouchitis. I happen to be very sensitive to imodium and anything more than 1 2 mg loperamide pill in 12 hours is too much. Only take it if you need it and in very small dosages.
Lay off sweets and take probiotics between antibiotic dosages.
I have been on antibiotics for 17 years and have kept pouchitis under control for that period of time by rotating antibiotics.
There is not much more you can do. If it comes back despite these efforts, and it may not, you may require chronic treatment.
I think VSL #3 DS kept pouchitis at bay for me for a couple of years. I still take it, but now seem to need Cipro as well. For those who may not know, the DS strength is prescription only, and seems to generally be included in prescription drug coverage, though at the highest copay. I've had mixed results getting it covered by mail order, though.