"Controlled" Crohn's, Still Have Severe Sypmtoms

Posted by rwlong21 @rwlong21, Nov 6, 2020

Hi. This is my first time posting, so please bare with me as I learn the process. I have severe Crohn's Disease that has been treated with biologics, prescriptions drugs, and surgery. I have had some moments of feel good, but generally I don't feel well most of the time. I have a LOT of abdominal pain including severe bloating particularly after eating. I am just wondering if anyone has dealt with being considered controlled but still have symptoms and how it was helped. Was there another diagnosis lurking nearby that took a while to identify? Were there particular therapies that helped more so than others? I'm open to any and all ideas as I want to live and not just survive. Thank you, Ruth of Oakland, CA

@rwlong21 – First- Welcome to Mayo Clinic Connect! We have several members with Crohn’s and I hope you will hear from them.
I definitely understand what you mean by almost never feeling good. I had another autoimmune GI disease with constant bloating, pain or discomfort.
Many years I remember having ONE normal day was a miracle.
Have your doctors discussed this problem? It doesn’t sound directly typical Crohn's.
Crohn’s is an autoimmune disease- many have more than one. In your case I think of Celiac disease- have you been tested for this? There could also be other food intolerances causing your symptoms.
Your goal is definitely to live a good life!
Can you recall other testing you have had?

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Thank you for your reply. Yes, I have been tested for EVERYTHING and I almost always come back with results in the "normal" range even though I have severe symptoms – abdominal pain and distension as well as fatigue and malaise. I do not have Celiac Disease but I do have Endometriosis that has been treated with prescriptions and surgery with some success, and I have done very restrictive diets with limited success. I am just wondering if anyone else has this issue and what they have done about it. Is there another type of specialist I should talk to? Any really out of the ordinary diseases or conditions someone else has that might be something I should look in to? Something like that. Thank you, Ruth

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@rwlong21 – Have you thought of getting a second opinion? Also, maybe getting that at a place like Mayo Clinic or major University Hospital. It sounds as if you are stuck now without a diagnosis. Let’s hear what you think about getting another opinion!

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Yes, I am on my second opinion now. I have been thinking that a University Hospital and/or the Mayo Clinic were my next step, so you bringing it up kind of solidifies my thinking on it. I am very interested in people's opinions on which university hospital or the Mayo Clinic itself would be a good first step into this domain. Thank you very much.

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@rwlong21 – Do you live close to any major medical centers? When I have searched myself I read up on a particular institution and what they offer in the appropriate departments- if they have a large and diverse GI department for example. Mayo Clinic is almost always reliable to find an answer. Also depends which center you are closest to.

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That makes sense. I'm in the San Francisco Bay Area and have both University of California San Francisco and Stanford University nearby. I have always thought of the Mayo Clinic as a beacon to strive for, but it may not be feasible. I think my next step is to see if I can get my current provider to give me a referral out of my network. This will be a challenge as I'm in an HMO and they really like to think they can handle everything. Any choice words you would recommend my using in asking for a referral?

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@rwlong21 I certainly should know what they need to hear- I worked for an HMO for years! As far as I know it is your right to get second opinions. Briefly summarize your history like you did here- diagnosis, treatment, extensive testing and that you still live with constant unbearable pain and bloating. It makes it easier for your doctor to quickly get a picture of why you need a referral. They probably have arrangements with at least one of the hospitals to see patients from your group.
Your HMO most likely has described your rights in information package you got when joining.

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Thank you so much! I truly appreciate your guidance and support. I'll let you know how it goes…wish me luck 🙂

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Yes- good luck!!!🍀 Don’t give up!

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