Crohn's Disease Forum » Your Story » Help please


12-21-2017, 01:28 AM   #1
carlysigne
 
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Help please

Hello everyone!
I am currently a freshman in college. I have been symptomatic since about sixth grade. After years and years and a plethora of doctors I was finally diagnosed with Crohn's the summer before my senior year in high school by pill cam at Mayo Clinic. I took azathioprine for over a year and my doctor was convinced my Crohn's was in remission -- my inflammation appeared to be gone and my constant battle with anemia was over. The doctors figured that because I was so sick for like eight years that the pain was just in my head because I was so used to being sick (I don't remember a single day without symptoms or pain). They were also convinced that I had IBS and that was still causing my diarrhea. (Keep in mind I still kept getting mouth ulcers, spots on my skin, and having diarrhea and many bowel movements). I took the ultimate IBS antibiotic and it made me more sick than I've ever been. I took pentasa. It also did nothing. Anyway, my doctor did another pill cam and said that a year and a half after my first one, everything looked EXACTLY the same. Ulcers in the same exact spots! Mucus and other nasty spots everywhere in my terminal ileum. They gave up on me and are telling me to go back to Mayo or somewhere else that advanced because they have no clue why my inflammation is completely gone and how I'm in "remission" while nothing actually in my gut has improved in the slightest. The issue is that Mayo is always busy and I'm a college student. I can't miss classes a week! I know my health is a top priority, but I'm also dealing with POTS (with a possible diagnosis of MCAD(S)) and also I have a recently diagnosed irregular heartbeat and have to get that looked at asap. My doctor thinks I might have some other gut disease on top of my crohn's but didn't really suggest much and basically said just to go to Mayo. Anyway, has anyone had this sort of thing happen? I've looked it up, but all the internet knows is Crohn's and UC and nothing lesser known. I basically feel like it's up to me to diagnose myself because that's what I had to do with my Crohn's and heart and that's how my doctors finally figured that all out! Please help! I'm loosing my mind!!!
12-21-2017, 08:43 AM   #2
ronroush7
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Welcome. I am sorry for all you are dealing with. I would keep at the doctrine until you get an an newer
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12-21-2017, 10:57 AM   #3
Scipio
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I'm so sorry for your difficulties. It sounds like your local doctors are basically giving up. Are they gastroenterologists or primary care doctors? If the latter perhaps you could look into finding a local gastro with an interest in IBD who can do a better job for you. Some doctors, even some gastros, do not like to treat IBD because it is such a difficult and frustrating disease to manage (as we all know).

Also, which Mayo location are you talking about? How far do you live from Mayo? Is it far enough that it is difficult to get there? I do know that the main Mayo in Minnesota has an excellent IBD program. Dr. Loftus there is among the top IBD docs. If that's where you have been going, then I don't disagree with the advice to go there. But if it's just not feasible for some reason then your next best bet is to find a local GI who specializes in IBD.
12-21-2017, 01:01 PM   #4
carlysigne
 
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The Mayo in Minnesota is 6 hours away from me because I live in central Illinois. I currently see a GI doctor where I live who is directed under Mayo.
12-21-2017, 01:03 PM   #5
carlysigne
 
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Itís just very hard to go back to Mayo because of timing. I go to college 2 hours away and Mayo is 6 hours away. Mayo can only get me in while Iím in school and I canít skip class.
Does anyone know if this is still my Crohnís or if it could be something else along with my Crohnís (which is what my GI doctor thinks)????
12-21-2017, 02:05 PM   #6
Lisa
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Ok - first welcome..second, I'm a little confused by your post so I have broken it out below with questions -

Hello everyone!
I am currently a freshman in college. I have been symptomatic since about sixth grade.

After years and years and a plethora of doctors I was finally diagnosed with Crohn's the summer before my senior year in high school by pill cam at Mayo Clinic.

I took azathioprine for over a year and my doctor was convinced my Crohn's was in remission -- my inflammation appeared to be gone and my constant battle with anemia was over.
How did they determine your inflammation was gone? Also, did you stay on medication or stop medication (AZA) at this time?


The doctors figured that because I was so sick for like eight years that the pain was just in my head because I was so used to being sick (I don't remember a single day without symptoms or pain). They were also convinced that I had IBS and that was still causing my diarrhea. (Keep in mind I still kept getting mouth ulcers, spots on my skin, and having diarrhea and many bowel movements).
Did you have any testing at this time and/or were you still on medications?

I took the ultimate IBS antibiotic and it made me more sick than I've ever been.
- what antibiotic was this?

I took pentasa. It also did nothing.
- Pentasa is very mild, much more so than AZA - did your doctor put you on this weaker medication for a particular reason?

Anyway, my doctor did another pill cam and said that a year and a half after my first one, everything looked EXACTLY the same. Ulcers in the same exact spots! Mucus and other nasty spots everywhere in my terminal ileum.
- again, were you on medications at this time? What else besides AZA and Pentasa have you tried? There are a LOT of other medications out there that could/should be looked at.....

They gave up on me and are telling me to go back to Mayo or somewhere else that advanced because they have no clue why my inflammation is completely gone and how I'm in "remission" while nothing actually in my gut has improved in the slightest.
You are obviously NOT in remission if you still have ulcers etc....how/why are they saying your inflammation is gone? How is this being measured? Blood/stool testing? There are people on this site who routinely have low inflammation markers and who still have very active disease.

The issue is that Mayo is always busy and I'm a college student. I can't miss classes a week! I know my health is a top priority, but I'm also dealing with POTS (with a possible diagnosis of MCAD(S)) and also I have a recently diagnosed irregular heartbeat and have to get that looked at asap. My doctor thinks I might have some other gut disease on top of my crohn's but didn't really suggest much and basically said just to go to Mayo. Anyway, has anyone had this sort of thing happen? I've looked it up, but all the internet knows is Crohn's and UC and nothing lesser known. I basically feel like it's up to me to diagnose myself because that's what I had to do with my Crohn's and heart and that's how my doctors finally figured that all out! Please help! I'm loosing my mind!!!
You said it yourself - your health is a priority. There has to be some way to make up a class/classes if you miss them for medical reasons. See if Mayo can give you a referral to someone closer to you.....or schedule for the end of the week when you might have fewer classes etc.....

Please do let us know how you get on....
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While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
12-21-2017, 02:37 PM   #7
carlysigne
 
Join Date: Dec 2017
I had stool and blood tests to determine my inflammation markers are gone.
I am still on Azathioprine.
I just had the newer pill cam a few weeks ago and thus I was on aza.
They gave me xifaxan to see if it would help but it didnít do anything so they know I donít have IBS.
I tried Pentasa first and it did nothing so then I was put on aza.
They donít want to try other Crohnís meds because they are convinced it is something on top of my crohns since aza helped my inflammation but didnít do anything at all for the ulcers and mucus are still exactly the same.
12-21-2017, 02:43 PM   #8
carlysigne
 
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I am pretty positive itís just my crohnís but ever since the beginning they have all been telling me my crohns isnít ďthat badĒ so I think they just donít want to admit it is a little worse than they thought! Haha
12-21-2017, 05:59 PM   #9
Scipio
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The Mayo in Minnesota is 6 hours away from me because I live in central Illinois. I currently see a GI doctor where I live who is directed under Mayo.
Chicago is probably much closer for you and both Univ. of Chicago and Northwestern have some excellent IBD programs for you to consider if your local GI is not working out for you:

http://www.uchospitals.edu/specialties/gi/ibd/team.html
https://www.nm.org/conditions-and-ca...isease-program
12-21-2017, 06:03 PM   #10
ronroush7
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I had stool and blood tests to determine my inflammation markers are gone.
I am still on Azathioprine.
I just had the newer pill cam a few weeks ago and thus I was on aza.
They gave me xifaxan to see if it would help but it didnít do anything so they know I donít have IBS.
I tried Pentasa first and it did nothing so then I was put on aza.
They donít want to try other Crohnís meds because they are convinced it is something on top of my crohns since aza helped my inflammation but didnít do anything at all for the ulcers and mucus are still exactly the same.
I hope they get you on something soon that can put you in remission.

12-21-2017, 06:06 PM   #11
ronroush7
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I hope they get you on something soon that can put you in remission.
I believe Pentasa only hits the surface of the disease.

12-21-2017, 06:26 PM   #12
carlysigne
 
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Chicago is 2 hours away and my mayo doctor suggested just going there!
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