Was UC now Crohn's

Roberta,

I am sorry for your news.

I am experiencing the same issues you are and want to ask my GI to test me for crohns before I opt for pouch advancement surgery due to chronic cuffitis since takedown 16 months ago. I too have felt worse since my surgeries and would like to get to the bottom of whether I could possibly have Crohn's even though all my testing has showed UC also.

Did they do the same blood work in 2007 that did not show crohn's at that time?

Sorry to hear that Roberta. Several doctors I know don't put ANY weight in the Prometheus test and latest opinion is that prometheus test is flawed and inaccurate. Is this the test you had? I'm not sure what other way doctors confirm crohn's - I think by biopsy/scope and I think Cleveland has some test. What will be your treatment plan now? I think crohn's can still be controlled in a jpouch, they just have to tailor the treatment differently. Hope u start feeling better soon. I don't feel my best with a jpouch, but I don't know whether that indicates crohn's or just post op recovery (4months out). Do you remember if you felt great with the ostomy or not?

Supposedly after a jpouch the UC can flip to crohns at pretty much anytime. Even after jpouch removal. Despite having had CT enterographs several times, including just a month ago, previous ileoscopes, biopsies of the excised jpouch, and small bowel follow through series, .. all saying no Crohns...Dr. Shen just did a bunch of crohns tests yet again on me last week. Ileoscope with biopsies and all the blood tests.. that also went to CA. Waiting for the results.

I'm sorry for your news Roberta... but hopefully knowing this will help them get you on the right path for feeling better.

I have inflammation in my ileum above the J Pouch and the Prometheus test was negative on markers for Crohn's or UC. I had my J Pouch since 1992 and the ileitis was first observed on my scope in 2008. My diagnosis is still questionable due to the fact that the narrowed channel of my bowel above the JPouch inlet and/or at the inlet is believed to be causing "fecal stasis" and "backwash of stool" that may be causing the ileitis.

My attitude is that what is more important than certitude with regard to the diagnosis is response to treatment. I have responded to traditional pouchitis treatments but have also incorporated treatments used for Crohn's (Pentasa and Entocort).

It's trial and error and whatever works, so do not hang a hat on any diagnosis lest you rule out treatments that might work.

You all sound exactly what I have been going through! As far as all my tests conducted by the GI biopsies, etc. it always came back to UC. The prometheus test is what I had (sent to CA) and that came back Crohn's. She (GI) said that all the tests are not accurate. All my symptoms after the takedown were going towards Crohn's based on what I was having wbc abnormal still (after colon was removed), low grade fever, nausea and vomitting and going 20 - 30 times still. You just think that is what the postop is suppose to be. So...what do you believe!
I am on the steroidal suppositories and that is helping for now. Also, I am anemic (just got the call) she forgot to tell me.
DJB you are right it is trial and error from here on in!

Roberta
UC 2007
takedown 4/30/2012

Liz keep us posted! All the tests said UC for me as well except the CA test.

Roberta

My wonderful GI offered to get me in to see Dr. Shen and Dr Remzi on the same day at Cleveland. I need to talk to my husband about making the visit. I am very nervous about all of this. I have an appt to see Dr. Becker in Boston who has also done 900 pouch surgeries. I did not go with him initially as he did not do laparscopic surgery. I am going to see him to get another opinion as he has pretty much written the book on jpouch surgery as well.

jeane try and look at it this way... you will get help so that you can get better.. some how some way. I understand your reluctance and how its all scary.. but you don't get any day back. You have to make the most out of what you have.

I was frightened too, when I gave up on my local "expert" docs. But I knew I was very very sick and was only getting sicker. They were simply throwing darts at a dart board.. and it turns out the darn dart board wasn't even on the wall they were throwing the darts at! It was my husband who encouraged me to get help elsewhere. And my first trip was scary.. very scary. But I will tell you... my mind calmed and my body relaxed within 5 minutes of sitting in Dr. Shen's exam room. I just knew... he would help me.

Its stinks that we have to be so proactive and make so many decisions ourselves about healthcare. BUT, it is your life. Thats what I keep telling myself.
my thoughts are with you.
ps... good luck trying to get appts with those two on the same day. Wouldn't count on that. But I would plan on spending 2-3 days so that you are there for any tests that shen might want to order or any surgeon consults he might want you to have.

Thank you to everyone here who has been so helpful sharing their situations and for providing advice.

Sorry about the crohn's diagnosis Roberta. It explains what's happening.

It drives me nuts when I have something wrong and none of the doctors figures out what's wrong.

Hi Roberta,

I'm really sorry. It sucks. I have had my pouch for 5 years and was diagnosed with Crohn's in January. I felt like it was so unfair. But I also never had the good results of some of our fellow pouchers. I had always been going 20-30 days, and after a while, I figured that was just normal. I was always feeling sick, having "weird" complications, arthritis, and just felt like I didn't feel right.

I wish you luck in your treatment plan. And I am really sorry. It's like a kick in the guts, except we don't have many guts left.

Don't be scared about visiting Cleveland. I currently drive 3.5 hours for treatment. I just googled Pittsburgh to Cleveland and you only have to go 2.5 hours . It is a big campus but many of your appointments will be in 2 if not 1 single building. There's a patient parking garage right across the street with a tunnel over the street. Dr. Shen's office is in the same area as Dr. Remzi's. And the CC cafeteria food is really good!

They do their best to schedule your appointments in one day, but it might be difficult. I would also say plan to stay 2 or 3 days, especially if there's a chance they would need you to fast/prep for something. I scheduled one appointment then all of a sudden I had like ten appointments in two days (additional lab work, etc.)! They provide excellent location information for each of your appointments. Every staff person I've ever encountered has been very helpful.

And I realize that the fear is probably more than just going to Cleveland, but as someone else said you need answers.

jeane let me know how you make out w/Dr. Becker. I heard about him. Also, what do they do different in Cleveland that they don't do in Boston or here in Providence?

Roberta

Roberta,

I know at Cleveland they have a mutli team approcah with Dr. Shen on board at the same time as your surgeon, in my case Dr. Remzi. I am going ot Boston next week to get this surgeon's take on the pouch advancement surgery and if I am not happy with the consult, I will seek an opinion in Cleveland.

I trust my current surgeon very much, but I just need to do this for my own peace of mind.

roberta I think the biggest difference is the volume of people they see and care for who have problematic pouches. And the amount of research they do on jpouches.

So sorry Roberta. I know you have been dealing with problems from the beginning and this could explain all that. I have heard as well that many doctors do not put any faith in the Prometheus test because of it's notorious inaccuracy. There is just so much doctors don't know about IBD. I just can't fathom how someone can have UC then have surgery for it, then BAM... it's back as Crohns?? Or was it Crohns in the first place? These are the things they don't know. Just crazy. I hope now you can some relief with treatment for it. Good luck and let us know how you make out. I think this could happen to any of us at any time from what I have been reading.

Roberta,

Did you get the IBD seriology 7 tests I believe?
I am dealing with the exact same issues as you. As a matter of fact, my path at time of colectomy showed ileitis in the ileim and when I asked the surgeon he said he was not concerned about it (backwash colitis). When I looked at my colectomy report again the other day, I had no UC in the upper portion of my colon so I am not sure where this backwash colitis was coming from into my inflamed ileim.

Fast forward 16 months and I have pouchitis (chronic ileitis) in my pouch and chronic cuffitis and I am having the blood work done today to test for crohn's.

Don't they always do CTenterographes, scopes and biopsies to check for crohns also? I know everytime they restart thinking crohns with me... they do all of that stuff. Just had all three things done the last month. I don't think there is just a tell tale series of blood tests for crohns.

Sorry Roberta..did not mean to take over the thread....

As far as crohn's testing goes..

I am finally having these tests done with my new gastro. I am having bloodwork, a pelvic MRI and probably an upper GI series done before I do ANY more surgery. My surgeon never requested any of this as my biopsies in my colonoscopies always indicated ulcerative colitis.

I hope others who are going through this make sure they have every test possible to ensure they are the best candidate for jpouch surgery before signing up for it.

jeane and you need biopsies of your current jpouch. that is probably the most critical piece from what I understand. Old biopsies pre-pouch won't mean a whole lot at this point.

Jeane you didn't take over the thread. As much info as we all can exchange is good enough for me.
From what I understand from the prometheus test (according to GI) nothing is 100%. However, I also go based on how I am feeling. From the first initial surgery I had one week that I didn't have any pain in joints and feel poisoned once they removed the colon. After that one week everything came back to where I felt I still had the UC disease in the body and have never felt right since then. When I had the takedown 4/30 had one complication after the other and going 20 - 30 x a day until hospitalized again in June and had all the effects of Crohn's.
Feeling stronger now because of steroidal suppositories and iron pills but still battling some type of pain daily.
So, I am hoping I can get this under some type of control and go to yoga and possibly an acupuncturists, for now. I see my GI back in a month unless, of course, I have more problems.
We seem to be all in the same position with this disease. It is a never ending battle. All the tests we go through and nothing is 100% showing. You just hope and pray the doctor's can get to the bottom of this and we do the best we can doctoring ourselves.

Roberta

I was diagnosed with Neuropathy by a Neurologist this week. Among the many ways he tested me was to have me walk putting one foot in front of the other. I flunked and wasn't drunk. I have been trying to get relief for my numb cold painful feet for 7 years. It has just gradually gotten worse and worse.

I feel similar to you Roberta. I don't think I have crohn's but it's just been like everything quit working right for almost 3 years straight. I'm 22 months post take down and have chronic cuffitis and IPS added into fibromyalgia and everything else. I'm in pain everywhere, like one big labor pain.

I have not given up and have hope I can get the neuropathy under control so I can walk and do yoga again. I understand why I can't do yoga anymore, I can't even stand on one leg.

This thread was posted over two years ago, I wonder how you ladies are doing today?

I had my colon removed in 1997 after being diagnosed in 1990 with UC. My last colonoscopy revealed the colon to be totally inflamed and ulcerated. There was nothing going into the ileum. Remove colon, create J-pouch life is good for 14 years. Oh, there were a few bowel obstructions and dehydrations, but starting year 15, all heck broke loose.

Every other month I was being hospitalized for dehydration and low potassium. I take two types of prescription potassium and go for weekly hydration therapy and still have been hospitalized 4-5 times per year, over the last three years, for dehydration or bowel obstruction.

I've had numerous CT scans, small bowel series, scopes, etc.. Conclusion was pouchitis with ulceration and inflammation with backwash into the ileum. I told my GI this didn't feel like pouchitis I'd had 2-3 years after getting my J-pouch. No urgency, pain or significant increase in frequentcy. Biopsies were done and I was told repeatedly I did not have Crohn's, take this Fflagyl for 2 weeks. Which did nothing.

My husband, although we are separated, hasn't been satisfied with the treatment I was getting and had long ago offered to take me to the Mayo Clinic. Last week I took him up on it. They did some tests, but one I'd never had done was a CT scan with barium and the IV dye. I drank 3 lovely containers, maybe 12 oz. each, of blueberry barium, took some pics with the CT scan, then they injected the dye. The radiologist report showed at least three areas, far above my pouch, of chronic inflammation and thickening of the bowel wall. The Mayo Clinic Dr. told me there's no question I have Crohn's.

It isn't what I wanted to hear but it's an answer. I suspected it, but my docs here were so sure, I felt it must be something I was or wasn't doing to myself that this kept happening. At least now I know I'm not crazy! Next month I'll start treatment with Remicade infusions and maybe I'll feel normal again.