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HI everyone!

I am moving to the Grand Blanc, Michigan area.  Does anyone know of a good IBD specialist or internest who has experience with jpouch and cuffitis?  I really need a good doctor.  THe GI doctor I have now, knows nothing about jpouch, especially with no colon and no rectum, perianal crohns and chronic cuffitis.  I am losing weight like crazy because I am afraid to eat, everything goes straight through me, I have fissures constantly, and the pain of cuffitis is beyond explainable. All my doctor does is stare at me (seriously, like I am an alien) and says, "well, we know you have IBD, but there is just nothing we can do about it--- You've have several abdominal surgeries with mesh put in which has adhered to most of your organs so surgery to see what is wrong is out of the question....so DO YOU NEED ANY PRESCRIPTION REFILLS" and that is all I get out of him.  He hasn't a clue.  I desperately need a doctor who knows about this type of sickness, not to mention the chronic fatigue and iron deficience anemia which to me all doctors think is just a JOKE.  I am at my wits end, and believe me, I quite often look at all my pills and think "why not" "who would really miss me" and it scares me....  But I am in so much pain all the time and it just seems like NO one cares.  Even friends and family don't seem like they care. We don't have an arm missing or a leg missing...they can't see anything wrong with us, SO there must not be anything wrong with us! It's all in our heads!

My doctor who took such good care of me passed from cancer.  I've been lost ever since.  I've searched for a doctor who cares and knows. ...But I can't find one.  Can someone please tell me someone in my area to see.  I don't care if I have to drive 50 miles to see them, I will.  Please. can someone recommend someone?

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Originally Posted by cbjonice:

If you are able, might want to try the University of Michigan. I heard they have some quality IBD specialists.

 

Sorry and hope you get relief

Thank you. Appreciate you taking the time to answer. Do you know if a person just calls the University of Michigan or must you be referred?  Once again, thank you for taking the time to read and respond.

 

Hi Chrissy,

I was searching for a doctor in my area and this post came up. My 18 year old daughter has a jpouch (UC - takedown March 2015). We live in Fenton. She had her surgery at U of M. I love her surgeon Dr. George Mychaliska but he's a pediatric surgeon as she was 17 at the time. We have seen a few GI's there but so far haven't been too impressed. I'm sure there are very good ones there, it's one of the best. The one she has now is very young and inexperienced so thinking about switching. The one I really wanted her to see was Dr. Adler, he actually has Crohns. He does mainly research now so doesn't take on new patients.

Did you ever find a good doctor?  I have been searching for a good primary since my daughter was diagnosed 2 years ago and have had no luck. I'm really interested in finding someone that takes a more natural approach and knows a lot about autoimmune. I've also tried a few Naturopaths and haven't found one I feel confident in. Idealy I'd like to find a MD or DO that is open minded and knowelgeable about natural therapies/nutrition. It's also difficult because not many doctors or naturopaths know anything about jpouch.

Anyways, I hope you are doing better now and settling in your new home. I would love to talk to you sometime and compare notes, we're not far from each other. If you found a good doctor, please let me know.

Take care,

Mary Beth

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