UC, Crohn's and Cleveland Clinic for diagnosis

[Lindajoy]

Hi, everyone,

I'm new here and lost. My local GI has dismissed me as a patient. I've been accepted at Cleveland Clinic.

First question, if I may: Have any of you been to Cleveland Clinic for your IBD assessment? If so, did they diagnose you? Did you feel good about their care?

Second question: I've been reading a great deal about UC and Crohn's. I've yet to be diagnosed, by the way. My local GI, before he quit my care, said he couldn't make the diagnosis and wanted me to go to Cleveland Clinic eventually (guess that eventually came sooner than I thought it would), but thought it was either UC or Crohn's. In my reading, I find they sound so much alike, I can see why it's hard to diagnose. Can you all here tell me what the differences are between these two conditions that docs look for so as to get the diagnosis right? Do people with UC always have ulcers in their colon?

Third question: Can exercise trigger a flare, like using a Yoga ball to do sit ups?

Finally, has anyone ever felt better GI-wise with food but found water to trigger symptoms?

Thanks, everyone.

Lindajoy

 

[theend2]

I was not diagnosed at the Cleveland Clinic but I thought I would share this with you anyway. I was diagnosed after I was admitted to the hospital for passing out with blooding water coming from my backside. They did a colonoscopy and my whole colon was one big ulcer but not my small bowel. My blood was then send to PROMETHEUS lab in California. They did the folloing test. The test came back positive for ulcerative colitis. So maybe you could suggest to them to send your blood there for this test.

PROMETHEUS® IBD Serology 7 is a test to help your physician determine if you have Inflammatory Bowel Disease (IBD), and if so, which type: ulcerative colitis or Crohn’s disease. Test results may provide your physician with prognostic and other useful information, and help determine the best course of treatment.

 

[Lindajoy]

Thank you for the suggestion. Could I ask a possibly stupid question? Was the blood that was sent for this test that you had, the colon blood that you were having, or was it done via arm prick?

Thanks, again,

Linda

 

[Cookie]

Hi Linda,

Just wanted to offer you my personal experience with Cleveland Clinic. I have not been there for their gastro department, but my father was recently sent there for an experimental heart procedure which literally saved his life. It was his only option. I went with my family for the procedure and I was really floored by the whole place. It is simply amazing. Of course, I was only in the cardio facility, but I was so impressed by the way things operated, the organization...just everything. I can only surmise that the rest of the place isn't too shabby either. I would say that if you are close enough and it's not too much of an inconvenience...go. You have nothing to lose.

As far as exercise, I take a yoga class once a week and it always makes me feel better. I think the stretching and breathing to get oxygen to your internal organs really helps. Sometimes I have to modify the poses when I can feel that I am inflamed. But I would not encourage doing anything too strenuous when you are flaring. I run a lot, but when I am in a flare, I can always feel that it does more harm than good, so I just try and walk. For me, exercise in some capacity is crucial to maintaining my digestive health...but that's just my personal experience.

Just curious...what do you mean when you say that your doctor "dismissed you as a patient"? Upon your request, I hope?? Or are you just speaking figuratively?

Good luck with your diagnosis. Keep us posted on what happens.

 

[Lindajoy]

Hi, Shadycat,

Thank you for the response. I'm so glad your father and your whole family had such a good experience at the CC and that they saved your father's life. My husband is currently being seen up there in rheumatology and they've been very helpful. Unfortunately, my experiences there since 1995 have not been good, mainly seen in endocrinology, thus, I'm leery for myself. Not much experience with them gastro-wise, so thought I'd ask for experiences.

Yes, I walk for an hour each day and seem to feel better with that, but if I try to do sit ups, or crunches, I do myself more harm than good, I think.

When I say my doctor dismissed me, he told me he could not have me as a patient for a couple of reasons. One, I have Addison's (adrenal insufficiency, no adrenal gland function) and wanted to be stress dosed with more steroid before my colonoscopy procedure, per my Addison's doctor, and my GI felt that this other doctor was being pitted against him as he (the GI doctor, not an Addison's specialist) felt I didn't need to be stress-dosed. I said I was concerned with that decision as I nearly died just ten months ago from adrenal crisis due to my Addison's. He said that my response showed a lack of faith in his care. Well, he didn't "say" it, he yelled at me for 20 minutes on my cell phone about it. And, his second reason was that I also have a mast cell disease (Mastocytosis, makes me allergic to virtually everything), and he knows nothing about it and doesn't know how to treat my IBD, should I have it, because of it. Thus, I was dismissed, while in severe pain with bleeding. I guess he's not the doctor for me. I'm now looking for a new one.

Thank you, again,

Linda

 

[theend2]

Hello Lindajoy no it was not the colon blood it was from my arm. LOL

 

[JMitch]

Hello,

I am now seeing the Gastro docs at the CC. I can't say yet whether I'm happy or not. While I trust them and their decisions, because I know they are among the best, there are things that do question me.

When seeing other docs before ones at the CC I had the Prometheus IBD panel, twice. I've heard glory stories about this test. They both came back consistent with Crohn's. Doctors at the CC do not use that in their judgement, and said that test is useless to them.

They will not order a CT Enterography test. They want me to have a MRI Enterography, even though they rarely do it and the first appointment is two months away. They also are the only place in Ohio and Pennsylvania that do that test. I've had it done in California (at USC) which showed inflammation of my TI and they believe their test and Radiologists will see better.

I was being treated for Crohn's with Prednisone, Imuran and Pentasa, all of which are the only things that have worked for me thus far. They claim they are unsure if I have CD yet, and will not give me that strong of meds till they are sure. They did give me Cymbalta (depression meds) claiming one of the side effects will back me up. That has yet to happen.

One downfall is the appointment wait time. I recently had an appointment, and upon rescheduling about two weeks ago, the first available isn't till the end of May (really hard when your having many issues).

When you schedule an appointment, make sure you are seeing a doc that deals with IBD. My first appointment was with a Gastro doc, but he specialized in upper GI and I had to reschedule (a waste of a 3 hour drive).

*When I say they, I'm referring to my doc.

 

[Lindajoy]

Hey, TheEnd2, you never know! I once had to have blood drawn in the dark, for porpheria, I think. That was an experience!

Hey, Mitch, sorry you're not having a very satisfying experience at CC so far. Why are they wanting an MRI Enterography, may I ask? More to the point, I guess, what is it? What makes it so special for this? Could I also ask, if you have the Crohn's diagnosis already, why are they re-testing you? Unsure that your first diagnosis was correct?

That's what I fear. I'm reading more and more of that, I as read about these conditions. People are diagnosed and treated, then years later, tested again and found that the initial diagnosis was wrong. UGH!

I'm not real thrilled about going to CC, as the doctor I'm scheduled with is a fellow who I saw just last week for my high liver ALT, and he looked at my colonoscopy biopsies and said I don't have IBD, based on the biopsy results. Just blew right by it. I'm not too hopeful I'll get much more on repeat visit and don't know what to do. If I say anything to CC about my concerns, I'll just get, "All of our doctors are gastros and can work up IBD for you," just as I got, "All of our doctors are gastros and can work up your high liver enzymes for you," when I called, concerned that I was scheduled with a fellow gastro for my liver and not a liver specialist.

Thanks for sharing your experience. I hope you get the help you need soon.

Linda

 

[Lindajoy]

For TheEnd2

Hey, again,

I just found some reports from a hospitalization I had in fall of 2008. I was having severe GI issues then and had an ERCP. Anyway, my paperwork reads: "IBD-7: Pattern Consistent with IBD, Pattern Consistent with Crohn's Disease."

Is this possibly that Prometheus test you were talking about? If so, looks like I failed it?

LInda

 

[theend2]

Hey, again,

I just found some reports from a hospitalization I had in fall of 2008. I was having severe GI issues then and had an ERCP. Anyway, my paperwork reads: "IBD-7: Pattern Consistent with IBD, Pattern Consistent with Crohn's Disease."

Is this possibly that Prometheus test you were talking about? If so, looks like I failed it?

LInda

Yes that could be the test I was talking about. Sounds like you where positive for Crohns. Thats one marker. Then you had colonoscopy correct? where I assume they saw the inflamation and sores? Correct? That would be the double confirmation I would think.

 

[JMitch]

If you plan on going to the CC, they disregard this test. I had it done twice, and they don't believe in the test. It was very upsetting to me.

 

[Lindajoy]

I was at University of Michigan, and looks like they disregarded this test, too, and they're the ones who ran it.

Oddly enough, they never did a colonoscopy, just an ERCP. I do remember one of the GI docs saying that one of my xrays showed mild thickening somewhere in my bowel, but I can't find the report, nor do I remember where she said it was.

Out of the seven tests, my ASCA IgA Elisa was elevated, at 30.7 (it's higher now, this was back in 2008), and my anti-CBir1 ELISA was elevated slightly at 21.5 (normal up to 21.0).

All other tests normal. Is this still enough for Crohn's?

My GI here did just the IgA and IgG two weeks ago, and my IgA is high at 45.5, and the IgG borderline at 20.1. My smooth muscle antibodies are normal, as are all of my ANCA's.

My latest colonoscopy, done in January, shows inflammation along my entire colon, inflammation in my stomach, with an ulcer in my stomach. I've also showed inflammation in my esophagus a lot in the past, but it's better right now (I'm on hydrocortisone for Addison's, so my pcp here thinks this may helping).

Thanks, everyone.

Linda

 

[theend2]

You know for the past 2 1/2 years I have been wondering if that IBD-7 test was bull shit also and that I really have crohns instead of Ulcerative Colitis. My whole colon was completely ulcerated and my esophagus and stomach was inflamed also but they never did ever venture into my small intestines. I always have sores in my mouth also and my mid section in front always feels inflamed and hurts. I use the same drugs to treat things. I just wonder if I do have Crohns.

 

[Lindajoy]

This is all so frustrating. Not only is it hard to even diagnose these diseases, but then they have a hard time deciding which one you have if you do have one of them. UGH!

I'm not looking forward to any of this, but it's better than not knowing anything at all, I guess, or being told the pain is in my head.

I was actually sent, four years ago when this all started, to the Cleveland Clinic chronic pain program to "learn how to ignore my pain." In three weeks, I learned how to BE ignored by medical staff, then went home more sick than when I went in. One of the worst experiences of my life.

What tests do you think CC will do?

Thanks.

Linda

 

[theend2]

That's the good news at least I was diagnosed with something so its not all bad. I really feel for you all that cant seem to get a diagnosed.

 

[Lindajoy]

Thanks, I do too. I just don't get how doctors can see problems in the GI tract, for years, yet tell me the pain is anxiety, or in my head. I can understand "inconclusive,", but it's still frustrating.

What is it you have Theend2? Crohn's? I think my GI doc here was leaning towards Crohn's. I saw my gynecologist today, and while he's certainly no expert, I ran stuff by him, and he said he could understand why they're looking at Crohn's because it sounds to him like that's what I have. He was sympathetic and said that I sure don't need it with all the other stuff I have, but what are you gonna do? :ybatty:

Linda

 

[theend2]

Thanks, I do too. I just don't get how doctors can see problems in the GI tract, for years, yet tell me the pain is anxiety, or in my head. I can understand "inconclusive,", but it's still frustrating.

What is it you have Theend2? Crohn's? I think my GI doc here was leaning towards Crohn's. I saw my gynecologist today, and while he's certainly no expert, I ran stuff by him, and he said he could understand why they're looking at Crohn's because it sounds to him like that's what I have. He was sympathetic and said that I sure don't need it with all the other stuff I have, but what are you gonna do? :ybatty:

Linda

I have Ulcerative Colitis and just found out today I have Osteoporosis probably due to the prednisone. Sucks. Feeling down today.

 

[Lindajoy]

Oh, TheEnd2, I am sorry to hear that you now are dealing with another condition, and that you're feeling so down. :stinks:

I can understand. Trust me! I thought, after my Addison's diagnosis, that was it...I was on my way to a better life since that's what was wrong with me all along. Not! I also have a severe allergic disorder called Mastocytosis, which makes me virtually allergic to everything--all foods, chemicals, etc. I also have osteoarthritis (just found this out), and it's getting worse. I have too many "small" conditions to mention. Also, though, my thyroid has gone south since the Addison's and I cannot tolerate any of the meds.

I'm sorry you're having a bad time. I appreciate your talking with me and sharing. Please know I'll listen any time.

Take care.

Linda

 

[theend2]

Oh, TheEnd2, I am sorry to hear that you now are dealing with another condition, and that you're feeling so down. :stinks:

I can understand. Trust me! I thought, after my Addison's diagnosis, that was it...I was on my way to a better life since that's what was wrong with me all along. Not! I also have a severe allergic disorder called Mastocytosis, which makes me virtually allergic to everything--all foods, chemicals, etc. I also have osteoarthritis (just found this out), and it's getting worse. I have too many "small" conditions to mention. Also, though, my thyroid has gone south since the Addison's and I cannot tolerate any of the meds.

I'm sorry you're having a bad time. I appreciate your talking with me and sharing. Please know I'll listen any time.

Take care.

Linda

Thank you oh so much for listening Linda it does help. I know I am not alone feels good. The same goes for you I am so sorry you have so much wrong. God Bless you and may you find the relief you need.

 

[Lindajoy]

Thank you. Take care and we'll talk again, I'm sure.

Linda