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31 replies

Any Options Left Crohn's???

Chris MChris MMember
I had my J-pouch created in 2009 for a then diagnoses of UC. I tried all the normal UC medications and took Remicade for 3 years before it finally stopped working. About 2 years ago I started having issues cuffitis, pouchitis, and then was diagnosed with Crohn's. I had a pouchogram completed today and the GI is very concerned as I have severe ulceration on my cuff, pouch, and small intestine above the pouch. I've taken all medications that I know of and am really worried that I am about to lose my pouch and still have the same issues due to the inflammation/ ulceration in my pouch. Here are the meds I've been on

Asacol- didn't really every help
Remicade- Failed with UC
Humira- never worked
Cimzia- never worked
Protofoam- never worked
Canasa suppository- never worked
steroid suppository cannot remember name but never worked
Tindamax- never worked
Endocort- current med
Pentasa- current med
Predisone 20mg current med
Flaygl- current med
Cipro- usually rotate to for pouchitis but didn't work last time I tried

I think that is all of them…. My GI has tried to get me to take Tysybri, but after reading the side effects I really don't want to think about trying it, and in addition I tested positive for JC virus antibodies so I really shouldn't be taking it, but my GI has still been pushing me to give it a go even with the risk of JC virus. I have no idea what to do and am at my wits end. I cannot remember how long it has been since I've been this sick and I just don't know how much longer my body is going to keep the fight without ending up in the hospital. In addition to the normal issues that go along with pouchitis, cuffitis, and Crohns, I've had a temperature every day (100-101), chills, and shivers for the past two weeks. My PCP says it's not viral and I need to call my GI, and my GI says its viral and I need to call my PCP…..

When will it ever get better? To beat it all I just finished my bachelor's degree,and graduate next week. Between school, working full time, and having a year and a half old son the past two years have been so busy, and now I finally get time to sit down relax, and spend time with my family, but all I can do is lay around in my chair sick to no end!!!!! I just want to be normal and enjoy my family… is that to dang much to ask for!?!?!?! (sorry had to vent)
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Jan DollarJan DollarModerator, RN, retired
You probably don't want to hear this, but it might be time to start looking at ileostomy. It will not cure Crohn's, but eliminate the reservoir that tends to be the issue with folks with Crohn's. You can try a diverting ileostomy and see if that at least puts you in partial remission. Then you sort of will know where your path is.

The fact that practically nothing has been effective is what leads my thoughts in that direction.

Jan Smiler
Chris MChris MMember
yes a second opinion is probably in order. And unfortunately my surgeon has moved half way across the country and isn't an option.

Jan- I was afraid you were going to say that. I'm just not ready yet for a permanent ileostomy. I know and end is different than the loop, but my loop was a pain in the butt and leaked almost everyday… I'm just not ready to have to deal with it again. There is a new medication that is a biologic that has been designed for UC/Crohn's that is up for final FDA approval in February that my GI was talking about a few weeks ago. not sure if it will work or not, but being this close I really hope I can make it and see if it will work…….
P PluotMember
Chris - the drug is vedolizumab and the FDA's advisory committee on GI drugs is discussing it on Monday. They'll be posting a whole bunch of documents about it here: http://www.fda.gov/AdvisoryCom...mittee/ucm371061.htm

Not sure if you like reading about all this stuff or prefer to leave it to the pros, but I thought I'd post... From what I've heard, vedolizumab is supposed to be a good option for people who have lost response to Remicade. Not sure if you have ~2 months to wait but if you can I definitely would. I agree with you that Tysabri is not worth the risk if you're positive for JCV.
Chris MChris MMember
One thing that is going well is my number of BM's per day since I've started the prednisone. I went from 18-25 a day down to around 6-7. To me that is progress, but my scope today doesn't appear that progress is being made, or it could mean that I was in a lot worse shape a few weeks ago, and things are starting to heal up. As bad as I hate to maybe a bigger dose of prednisone is needed. My GI wanted to do 50 mg a day, but we compromised on 20mg because I really didn't want to get back on it…..
P PkittyMember
Is it confirmed that a decision for Vedolizumab will come in February? If so, can someone send me a link where I can read this? I am on the trial for Veodulizumab and it is partially working for me but there are so many restrictions on the trial that I CANNOT WAIT for it to get approved. My doctor, a global leader in research, said it will get approved early 2014 but I have no details on when....would appreciate if someone could send me a link with something concrete from the fda or from millenium pharmaceuticals.

Thanks!
L ljkMember
Hi Chris ,
I am curious to what kind of syptoms you are having? I recently recieved my jpouch my take down was August of 2013. I have a diagnosis of chrohns / colitis. Berfore even doing the surgery biopsys were done and mine all showed up negative for chrohns or colitis. And on the 19th of november I had pouchoscopy and she did several biopsys on the cuff area, and that shoed up negative as well (praise GOD!). I was told I had a little swelling on the cuff of the rectum and I told her I had like burning stabbing sensation inside and also still having butt burn!What the heck is up with this I have tried everything. Also my surgeon put me on Flagyl and Cipro. I didnt do well with the Cipro so I am now on Xifaxan, in which I just started yesterday. Well I was reading up on it and it said that after 24 hours of taking it and if you dont see a difference then to stop it! I am now thinking what in the heck is it then? Anyone reading this please respond Im at my withs end of things any response is appreciated. Thanks LJK
Chris MChris MMember
PKitty.. The info I posted came from my GI a few weeks ago. All he said was it was up for final approval in February, but I have zero confidence in him so he could just be blowing sunshine up my butt for all I know. All he cares to talk to me about is Tysybri and if I'm not willing to try it then there is nothing else he can do.. I guess tysybri pays the most…..
Chris MChris MMember
ljk- my symptoms are 18-25 bowel movements a day (I've been on 20mg of predisone for 3 weeks now and it is down to about 6-8 though), I've got sharp pains that come in go all throughout my abdomen area, last Wednesday I had severe bleeding almost all day. I had a scope done on Friday, and my cuff, pouch, and illiim (area right above the pouch I think that is the name) are severely ulcerated. I didn't get to see the pics as another Dr. completed the scope for my normal GI, but she was very concerned about how deep they were, and said she could definitely see why I was bleeding. I also have gassiness, and bloating. My stomach has swelled pretty severely a couple of times. My normal GI, and Dr. Shen has both tested for Crohn's and both tests came back negative or inconclusive, but they both feel it is Crohn's and are treating as aggressively as they can for it.
Chris MChris MMember
one more thing. When I had my colectomy my large intestine/ colon was sent off for full tesing and came back 100% ulcerative colitis.. guess 100% isn't really 100% though… When I saw Shen last year he did have a theory that Crohn's develops at our suture sight after surgery, or it is a new autoimmune disease that they really don't know about. This info is over a year old so he may have proven or disproven this theory so I wouldn't hold to much to it without seeing what his current thoughts are on the matter.
TE MarieTE MarieMember
Did the prednisone help? I'm wondering if they gave you a higher dose of prednisone if that would help get you through to February. I hate the stuff but it did work for me. I had UC bad from by my appendix in patches over to my rectum when I was finally diagnosed. (I had had it for years undiagnosed and untreated.) 6 months of a high dose, tapering down included, and it lasted a long time. I hated the side effects but am wondering if this might shock your system into some kind of remission for the time being.
Chris MChris MMember
TE- before my surgeries when I was diagnosed with UC as long as I was on 50mg of Prednisone I was as close to a normal person as I could be. As soon as I started tapering and got below 40mg almost overnight I was in a full flare. This is the first time since my surgery that I have been back on it. I am taking 20mg a day and I believe it is helping, maybe a larger dose would help faster, and bridge the time gap that I need until the new medication comes out.

LJK- I've seen Dr. Shen once, but my normal GI care comes from Vanderbilt in TN

Pkitty- The only tests that I am aware of came from biopsies that were taken when I had a scope.
Chris MChris MMember
grr… so frustrated. I sent my GI information on the Simponi, and his response was you have failed two already (even though it is actually 3), and I don't think it will work would you be interested in Stellar? It took all I had not to lose my temper with the poor nurse. I said yes I would be willing, but since it is not approved for UC/ Crohn's my insurance will not pay for it, and Dr. Schwartz is aware as we just discussed it, and he has already appealed to my insurance 3 times already all denied. What part of they will not pay for it does he not understand. I really think it is time to find a new Dr. who is willing to roll up their sleeve and be an advocate for me, and not just a patient number on a chart. I still don't have the full results of my scope on Friday as his office was supposed to call me today, and after I finally got ahold of them this afternoon they were like well we've not looked at the results yet so it will be sometime this week. I know the office is busy, but when his Dr who performed the scope said your are in bad shape and need to hear from Schwartz on Monday or you better call then I think this is important enough to make time to see what needs to be done to help your patients!!!!

sorry for the vent!!!
TE MarieTE MarieMember
Call back Chris and ask to talk to the doctor. You are ill, the doctor told you last week that you would be talking to your doctor Monday. It is understandable that your doctor did not get back to you yesterday as Monday's are very busy days for everyone. But, he has now had time to receive the test results and you need his attention. You are bleeding from who knows how much of your GI tract - at least as far as the other GI looked for heavens sakes! I'd be wondering if my blood needed testing to see if I was getting anemic or worse etc. Also, are you needing pain medication? Do you need further testing, like a pill cam? Should you be in the hospital etc? I'm just making up questions. I'm sure you have many legitimate ones. BE the squeaky wheel! You do not have time to change doctor's at this moment. You can be looking now for a new doctor but you need help in the meantime. I don't know where you live or who you are going to but please find a GI specialist someplace like at Mayo or the Cleveland Clinic. I got to Mayo at Rochester and there's another guy on here that goes to Florida. There are people that go to the Cleveland Clinic in Ohio as well as other fine doctors in CA and in the East. If you need ideas, ask. AS my local GI told me, he treats people for the entire GI system from the mouth all the way down. When he couldn't get my chronic cuffitis to go away he sent me to an IBD specialist that knew all about j-pouches at the Mayo clinic, which is 3-4 hours away from here.
Chris MChris MMember
Jan I totally agree might as well try something rather than nothing at all, but he is hellbent on not trying it as I personally talked to him today.

TE- I agree, and no I don't need to be changing GI's but I will be looking for a new one.

I do have an update though. My GI personally called me today which is very surprising. My first words out of my mouth when he said hello this is Dr… was oh crap this isn't good if your calling me (in hindsight I guess it may have sounded rude, but he never calls its always a nurse).. His response though was no I actually have good news as your biopsy tests came back today. I have a viral infection (CMV), and he thinks that once I start taking the meds he is prescribing I will be feeling better quickly. After looking it up I'm not to sure I am better of but at least I know what is going on, and all of the symptoms that I have read about I have (ulcers, fever, chills, headaches, bleeding). Not sure where this will take me, but we shall see. Now my question is for the past two years I've been battling most of the symptoms I have now, and my Crohn's tests always came back negative or inconclusive so could this be what I've had all along or is it in addition to the other issues…

Jan I saw a few posts from you on the subject when I did a search, but do you have any new info on it??
Chris MChris MMember
Hmm.. thanks for the link, and yes cytomegalovirus is what it is. I guess I know why nothing would help my pouchitis now.. as talked about earlier I was pretty ulcerated which is a side effect of CMV, so now I am wondering how long I've had it simmering, and if this has been the root cause of the problems I've been having for quite some time now, or if I still have underlying issues, and this is on top of them masking them at the moment...
Chris MChris MMember
TE- he is using he pill form of the IV meds. From what I've read their is only two medications for it, and they come in pill and Iv form. I go back for blood work next Thursday and if it isn't gone we are moving to the IV medication to help get rid of it. My normal GI has never tested for it, but the one who did my scope did for whatever reason. not sure if this is a common diagnoses or not. From lack of search results on here it doesn't appear to be, but IDK. I did get some good news today though. My insurance finally approved Stellar so as soon as this is cleared up I will be able to start it. Hopefully it will work, but if it doesn't the new drug is right around the corner. I am trying to be as optimistic as possible,and keep my head up. As long as I start seeing some relief soon it will make it all the more easier to keep chugging along and pushing through these problems….
TE MarieTE MarieMember
Wow, sounds like you were lucky to have a different GI scope you! It is good to have a different doctor evaluate you when things get bad, even if he is in your doctor's office. The people in this example Jan looked up had been tested for it before and it hadn't been found until after surgery so I hope the medication starts working for you. Fingers crossed Smiler

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