vstRN- Yes, that's the way I'm thinking. I just wish there was a guarantee that there would be little to no complications.
ke353- Right.. it's not my entire colon. It's my lower left side of the colon and GI told me it's diseased for about a 6" span. Surgeon will hopefully see that in what my GI sent to him.
DJBHusky- I will pray that it is not Crohns!! I've read where there were misdiagnosis' in many cases where the patients were diagnosed and treated for Colitis but it was really Crohns. Not good. You have been through it! 17 plus years of pouchitis- Have you thought about getting a new GI who will determine whether you have now developed Crohns? If you current doc can't confirm or deny, I'd see someone else. Just my opinion.
ActiveUC'er- This is my understanding as well. From everything that I've read over the past few years, that UC will likely come back if the entire colon isn't removed.
Sue- Thank you! It affects my lower left side about 6" moving upward in the colon. My entire problem (hence my original post here in this forum) is that my doctor confused me when she said she has patients worse off than me. So I started to think that maybe she meant that if only a portion of colon is affected that I'm not as bad off as others who's entire colons are infected. I was thinking to myself, well if I'm in this much pain and having flares of this magnitude on a regular basis, people who have entire colon infection must be near death. The fact (so I'm finding) is that Ulcerative Colitis is Ulcerative Colitis and regardless of how extensive injury to the bowel is, if medications are no longer working and I've depleted all medication options, then I can either continue to live with it (and possibly prednisone) or have surgery.
chiromancer- One thing my GI did say was that if biologics don't work for me, there are no other medications to try but prednisone (which doesn't put into remission in my case) mixed with some of the drugs that stopped working in my past. I DO have another appt with her for the week after I meet with the surgeon. I will ask her again if there are any other options (besides any experimental surgeries) that might put me into remission. I would love to hear if you know something more...Please let me know if you know of any and I'll definitely speak to my GI about them. I haven't even read of any other options.
Thanks to everyone for all of your ideas and information!!
quote:Have you thought about getting a new GI who will determine whether you have now developed Crohns? If you current doc can't confirm or deny, I'd see someone else. Just my opinion.
It is not so easy to confirm or deny as you seem to think. I changed pouch experts in 2010 strictly for insurance reasons and both new and old pouch experts have come to the same conclusion: Crohn's can be suspected but not confirmed. I have had 3 diagnostic tests as well as my routine scopes and they have all been inconclusive. The pattern of inflammation that exists in my ileum is inconclusive and may be due to a narrowing/segmental thickening of the ileum above my J Pouch that has caused "fecal stasis" or pooling of the feces above the J Pouch with resulting inflammation. Therefore, structural rather than systemic issues may be causing the inflammation being seen in my ileum, although they are puzzled by it because the structural theory does not fully explain what they are seeing.
It should also be noted that there was no inflammation seen in my ileum until 2008, meaning I had absolutely no symptoms or signs of Crohn's Disease for a full 16 years after getting my J Pouch.
I am of the opinion that my diagnosis is irrelevant, because we have been using some medications that are indicated for treatment of Crohn's, and in any event I have responded to the traditional treatment of pouchitis: antibiotics. Way too many people are caught up in the significance of a correct diagnosis as opposed to finding a proper treatment. If the treatment works the diagnosis is not important.
I would say yes, you are ready. It seems like you have tried a variety of treatments and given everything a fair go. Despite everything that has been done, you still haven't achieved remission and you are continuing to have flares. It's unlikely your UC will improve with the current course, and I would say you will probably only get worse, considering your system is no longer responding to treatments that worked in the past. In my own situation, I deteriorated in matter of weeks, to the point that my surgery ended up being on an emergency basis. Believe me, you do not want to go that route if you don't have to. You have a far better chance at a quicker and more successful recovery if you go into your surgery relatively healthy. So, I would say if you are at the point that you are considering it, then you already know the other options have failed or are likely to fail. You're also saying to yourself that you've had enough. So why not go for it? You could have a whole new quality of life waiting for you.
"Please let me know if you know of any and I'll definitely speak to my GI about them. I haven't even read of any other options."
Years ago when I was in the midst of a very long flair I was put into remission with hydrocort enemas and sulfasalazine. This was before may of the newer treatments. For years I was in remission or low level disease with VSL#3 and sulfasalazine. I lost my colon to cancer not because of direct effects of UC, but the indirect. Someone suggested the fecal transplant this has become much more main stream
and is being used to treat C diff infections.
My main point was it is likely but not certain that you will use less medications with a J pouch and you cant go back.
Years ago when I was in the midst of a very long flair I was put into remission with hydrocort enemas and sulfasalazine. This was before may of the newer treatments. For years I was in remission or low level disease with VSL#3 and sulfasalazine. I lost my colon to cancer not because of direct effects of UC, but the indirect. Someone suggested the fecal transplant this has become much more main stream
and is being used to treat C diff infections.
My main point was it is likely but not certain that you will use less medications with a J pouch and you cant go back.
Oh yes.... the GI's still use those enemas. Hydrocort worked really well in conjunction with the Prednisone I was taking last October... at least for awhile. By November, I started with a flare so bad that it wouldn't allow me to hold it long enough to have an effect on me ;o( I was very upset about not being able to hold it. I even thought this time around that I would try to use it again when/if I go back on Prednisone after I meet with the surgeon. I am alergic to sulfa drugs, but I also took the non-steroidal enemas (Rowasa??) a few years ago. They didn't do anything for me but it was worth a try. NO to the fecal/bacterial enemas or capsules. I do currently use VSL#3 (one in a.m. and one packet in p.m.). But VSL#3 (introduction of the bacterias does not put anything into remission). I can't see where it's done anything positive or negative. I mix it with applesauce or yogurt!! Good stuff.
Thanks for the information though. Keep me in mind if you hear of anything else please. That fecal transplant just doesn't even sound right. I read somewhere where a guy went to another country and ate a certain type of worms for a week!! This type of treatment wouldn't sit well with me either!! LOL However, he swears it puts him into remission and he flies out on a regular basis. I will try to find that article again it was quite odd... but if we could fly those worms in and put them in a pill form, I would consider it!
Thanks for the information though. Keep me in mind if you hear of anything else please. That fecal transplant just doesn't even sound right. I read somewhere where a guy went to another country and ate a certain type of worms for a week!! This type of treatment wouldn't sit well with me either!! LOL However, he swears it puts him into remission and he flies out on a regular basis. I will try to find that article again it was quite odd... but if we could fly those worms in and put them in a pill form, I would consider it!
Casie, I only wish I was in your boots now, so I could give all these alternatives, no matter how odd they sound, a try, fecal transplants included too. There's just no turning back after surgery 
I really wish I could now to try these alternatives. You see the internet wasn't even around when I pulled the trigger and got my pouch. It's been an annoying experience for me, including this morning when gas woke me up and would not let me get a full night's sleep
I really wish I could now to try these alternatives. You see the internet wasn't even around when I pulled the trigger and got my pouch. It's been an annoying experience for me, including this morning when gas woke me up and would not let me get a full night's sleep 
I don't know...maybe its just me but the thought of putting worms and someone else's fecal matter in my body just totally grosses me out! 
And there is no guarantee that it would work or stay working in the long run.
I can only tell you, Casie130, that I do not miss my rotten colon one bit. I never have to worry about flaring again, colon cancer, restricting my diet, or taking drugs ever again. Now that's a wonderful feeling.
And there is no guarantee that it would work or stay working in the long run.I can only tell you, Casie130, that I do not miss my rotten colon one bit. I never have to worry about flaring again, colon cancer, restricting my diet, or taking drugs ever again. Now that's a wonderful feeling.
quote:My entire colon was not affected; only a patch in the rectum about the size of a quarter. That small area put me in a severe flare for over 2 years. Don't underestimate the misery one can have from limited patches of UC.
Oh no, that's not what I meant! I just miss having a colon and didn't want to get rid of it, but I had no choice. I know others don't feel that way at all though.
Casie, glad you found yourself over here. I felt the same way as you do about being embarrassed when I first was going to the CC. The surgeon told me what Sue did. Just because it doesn't affect your entire colon doesn't mean it doesn't make you very sick. The drugs aren't working anymore, you don't want to try biologics and you want your life back. Sounds like you are ready for surgery. You will feel so much better once you go for your consult.
I have to tell you that my new job is going well and the irony is that for many years I have wanted a private bathroom and have been so embarrassed because I have had to share a bathroom and have often times thought I wasn't going to make it. Well, now that I rarely have to go during the day (literally I have gone once during my workday since starting 2 weeks ago) I have a bathroom about 8 feet from my desk. It is a private women's bathroom and the only office around is mine and a hallway. So, so funny!
I'm so happy for you, I just wish you were going in earlier. The waiting and worrying is the worst part.
I have to tell you that my new job is going well and the irony is that for many years I have wanted a private bathroom and have been so embarrassed because I have had to share a bathroom and have often times thought I wasn't going to make it. Well, now that I rarely have to go during the day (literally I have gone once during my workday since starting 2 weeks ago) I have a bathroom about 8 feet from my desk. It is a private women's bathroom and the only office around is mine and a hallway. So, so funny!
I'm so happy for you, I just wish you were going in earlier. The waiting and worrying is the worst part.
Disneynut- NOW THAT IS TOOOOOO FUNNY! Unbelievable ;o) The bathroom on my floor only has 3 stalls (sp?) and it serves the entire floor PLUS if conferences are going on the in the conference room they use it too! If I have to run upstairs a floor.... I won't make it. Thank God I've always lucked out over all these years.
ke353 & Dogday - I'm so sorry you guys didn't have a choice. I do feel better knowing that I've tried all medications and supplements that my GI instructed me to try. I am truly sorry that they stopped working and some didn't work at all. Remicade is out of the question for me as well as the fecal enemas and worms. That's where I draw the line. But yes, I have a choice.
Dogday- I'm sorry that your pouch surgery is so bad. I wish you well. I have no clue about these things, but is it something you can maybe have re-done now by a surgeon who may know the surgery better than yours did way back then?
mgmt10- LOL LOL yes, I have to agree with you... fecal transplant just isn't going to happen. I just don't think I could eat worms either!! Both of those are as bad as having chemicals injected/infused into my system.
DJBHusky-
"Crohn's can be suspected but not confirmed."
Are you referring to only your case/issue or are you saying that doctors can't diagnose Crohns period?? I had a friend back in college whom I could've sworn told me he was diagnosed with Crohns. I thought that if it could be properly diagnosed, the doctors could do a proper treatment and/or surgery for it.
I did read on one of these forums that someone was misdiagnosed as having UC when it was actually Crohns and it caused problems with her pouch after surgery was done. But, like I said, I don't know much about Crohns. I'm so glad that you are fine with the antibiotics for the pouchitis.
ke353 & Dogday - I'm so sorry you guys didn't have a choice. I do feel better knowing that I've tried all medications and supplements that my GI instructed me to try. I am truly sorry that they stopped working and some didn't work at all. Remicade is out of the question for me as well as the fecal enemas and worms. That's where I draw the line. But yes, I have a choice.
Dogday- I'm sorry that your pouch surgery is so bad. I wish you well. I have no clue about these things, but is it something you can maybe have re-done now by a surgeon who may know the surgery better than yours did way back then?
mgmt10- LOL LOL yes, I have to agree with you... fecal transplant just isn't going to happen. I just don't think I could eat worms either!! Both of those are as bad as having chemicals injected/infused into my system.
DJBHusky-
"Crohn's can be suspected but not confirmed."
Are you referring to only your case/issue or are you saying that doctors can't diagnose Crohns period?? I had a friend back in college whom I could've sworn told me he was diagnosed with Crohns. I thought that if it could be properly diagnosed, the doctors could do a proper treatment and/or surgery for it.
I did read on one of these forums that someone was misdiagnosed as having UC when it was actually Crohns and it caused problems with her pouch after surgery was done. But, like I said, I don't know much about Crohns. I'm so glad that you are fine with the antibiotics for the pouchitis.
My UC started with just the sigmoid colon and rectum being involved before spreading to the entire colon. I tried the biologics, but to no avail (it was determined my colitis was refractive). The thing with biologics is that they are purpose-grown antibodies and, as any other foreign protein, your body will eventually reject them. I had started to produce anti-Remacaid antibodies by the time I elected to have the surgery.
Sometimes I wonder if I could have tried something else, but then I go and look at the success rates for some of the more interesting treatments and they just aren't very encouraging. It sounds like you're in the same place I was in about a year ago: The treatments aren't working and you're fed up with feeling awful. If you decide to have the surgery, I wish you all the best.
Sometimes I wonder if I could have tried something else, but then I go and look at the success rates for some of the more interesting treatments and they just aren't very encouraging. It sounds like you're in the same place I was in about a year ago: The treatments aren't working and you're fed up with feeling awful. If you decide to have the surgery, I wish you all the best.
quote:ke353 & Dogday - I'm so sorry you guys didn't have a choice. I do feel better knowing that I've tried all medications and supplements that my GI instructed me to try. I am truly sorry that they stopped working and some didn't work at all. Remicade is out of the question for me as well as the fecal enemas and worms. That's where I draw the line. But yes, I have a choice.
It is what it is! Remicade wasn't really a question for me, the doctor told me I needed it so I agreed to it blindly. I didn't know enough of the side effects at the time and thought it would definitely work and felt it was my only hope. If I had had the disease for longer and researched all possibilities I may have refused it as well. This is a very tricky situation. You never know what will work or how much the disease will spread/worsen. I'm under the impression that our fate is decided right when we get the disease. If it's going to be moderate-severe and not respond, it will progress no matter how early you catch it and now matter what you do.
quote:mgmt10- LOL LOL yes, I have to agree with you... fecal transplant just isn't going to happen. I just don't think I could eat worms either!! Both of those are as bad as having chemicals injected/infused into my system.
Casie the truth is those are just minor inconveniences compared to living with no colon for the rest of your life. My lord if I could only take my decision back and get my diseased colon back I'd be more than happy to try those alternatives and begin to feel normal and whole again and even more importantly put a end to the hell I'm living now.
I would try the fecal transplant and worms in a second (and I'm a vegetarian too)! I'm pretty fresh out of surgeries but I really really wish I had waited on this and exhausted more options. It does sound like you are emotionally ready for this and I think it is wonderful that you are confident you want this done. I made the decision because I was scared, felt guilty and was just so emotionally beaten down from a 2 week stay on a med/surg floor with horrendous room mates. When my kids would come to visit, they would push my IV pole down the halls and I just never wanted to be in that situation again. I don't want to be terribly pessimistic here because this is obviously a forum for support, but things are different after surgery. And they haven't been good different (mind you it hasn't been that long for me). I would also take my diseased colon back any day. I certainly hope I won't be saying this in a few months from now. But again, I really do wish you the best with this. So many people are thrilled with their results. I'm actually doing pretty well but I'm definitely mourning the old way.
I'm sorry Dog Day and vstRN, I didn't read your whole stories, but were yours emergency surgeries? Where were your surgeries done? I know the success rate is much higher when it isn't emergency surgery and when done by an experienced surgeon. She needs to make her decision based on comparing apples to apples. I hope I didn't offend, because I feel very bad for your situations.
It is good to be skeptical when making this huge decision. I had conscious sedation over 14 years and saw my colon sick and then bounce back. I knew what it looked like inside. During my last test I saw that part of my colon was BLACK and dead inside. The rest of it didn't look well either and my GI took around 30 biopsies. I didn't have any polyps, just one ugly mess of a colon. I'd been in the flare from hell for 6 months.
My GI set up for a CTscan 2 days later. When I had my follow up appointment, to evaluate all, he suggested prednisone or biologics. I said no. If I was 24 instead of 54 I might have tried them in hopes of a cure coming, but at 54 I was tire of waiting.
I wish I'd had the surgery years ago. I'm having problems with my J-Pouch 19 months later but would still make the same decision. The big majority of people having the operation are doing great and they usually do not use support groups like this one. Someone has to be in the 10 in 100 that have problems, percentages vary, I'm using this %age for illustrative purposes only. I just happened to be one of the 10.
My GI took a deep breath and said when he brings surgery up patients don't accept it very well. He was glad I'd done my research.
We are all different and are here to give you any support we can. I'd read a book on prednisone and researched Remicaide. If you have any doubts I suggest you do the same.
Take care and please keep us posted.
My GI set up for a CTscan 2 days later. When I had my follow up appointment, to evaluate all, he suggested prednisone or biologics. I said no. If I was 24 instead of 54 I might have tried them in hopes of a cure coming, but at 54 I was tire of waiting.
I wish I'd had the surgery years ago. I'm having problems with my J-Pouch 19 months later but would still make the same decision. The big majority of people having the operation are doing great and they usually do not use support groups like this one. Someone has to be in the 10 in 100 that have problems, percentages vary, I'm using this %age for illustrative purposes only. I just happened to be one of the 10.
My GI took a deep breath and said when he brings surgery up patients don't accept it very well. He was glad I'd done my research.
We are all different and are here to give you any support we can. I'd read a book on prednisone and researched Remicaide. If you have any doubts I suggest you do the same.
Take care and please keep us posted.