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I'm baaack....And still undiagnosed. :(

Hey folks.....I was on this forum a couple years ago when all my problems started......September '09 it started with excruciating abdominal pain, chronic diarrhea, vomiting, the works. I was off work for 6 months trying to get in with specialists, and then waiting for some sort of diagnosis...I saw a specialist in January '10, he was initially convinced by all my symptoms and family history (Mother had Crohns, grandmother has UC) that it was crohns. He did a colonoscopy and found ulcers, biopsies showed chronic inflammation, inconclusive for CD or UC. He said that whatever it was it wasn't bad enough to treat...I disagreed, and asked for a second opinion.

In the meantime, my GP put me on prednisone, which worked wonders...then I got pregnant (It's amazing when you feel better after being sick for so long...) Things were generally good throughout my pregnancy, and I got so occupied with buying a house, moving, and getting set up for my daughter, then life with her once she was here, and I almost forgot things had ever been so bad. Once my daughter was about 6m old though, she stopped breastfeeding as much, and the diarrhea returned. So, I headed to my new GI to see what she could do for me. She did a colonoscopy and didn't see anything, however again, the biopsies showed chronic inflammation. She wasn't ready to make a diagnosis, and ran a few other tests....A breath test of some sort, i'm waiting for an MRI, and an Endoscopy...Showed redness in my esophagus, so she upped my Pariet. That was about....3 months ago?

Fast forward to about 3 weeks ago, I had a really bad night...vomiting, diarrhea, cramping, white knuckling it in the bathroom, I thought it was back. Spent the day on the couch, and things settled, and I forgot about it. Then Monday it hit. :( Horrible pain, vomited just once, and diarrhea for about 24 hours. I immediately went on a clear fluid diet, and the d. stopped, however the pain is still there. I can't explain it, just an awful feeling in my lower abd. I went to my GP who is convinced it is crohns and she started Flagyl, and tomorrow (Monday) I see my GI. I'm really so very frustrated this has taken so long, and that they are unwilling to even just treat the inflammation they know is there....Hopefully with this current flare they will run another colonoscopy, maybe get me in for an emergency MRI, and see what the heck is going on. :( Anyways....Thanks for listening...
 

Crohn's 35

Inactive Account
Hey you!!!!! :welcome: back! I lost touch with you and wondered how your pregnancy went. You have a girl so cool :banana:.

Now, back to business.. I find that most people who have IBD is in remission whilst preggers, and it comes back after. I have always thought hormones play a role in Crohns , and I think that is the avenue towards a cure or something to help us. I hope that your Gi gets you back in better mode. Now the new thing is to hit it hard and then back of with maintainence drugs. Hope you can either try the Remicade or Humira. Good luck and congrats on your daughter! Hugs!!!
 

Astra

Moderator
Welcome back!
Congrats on your little un xxxx

Hope you get something sorted soon, being on Pred and it working speaks volumes, so there's must be something going on!
Good luck tomorrow, persist with the GI and keep insisting
xxx
 

allieinwonder

Moderator
Thats awful that your doctors don't want to treat something they found like that. :( I really hope you are able to find a doctor who doesn't treat you so badly!
 
Thanks for all the positive words everyone. Anxiously awaiting my appointment tomorrow, hoping that I will finally get some answers.
 
Appt. today was with the second GI, she's pretty good....She's doing a colonoscopy Thursday, and trying to get me in for a rush CT while i'm flaring, to hopefully see something....If nothing shows up though, she's not willing to treat what she doesn't know, and says she's run all the tests she can. :( She says that the inflammation that has shown up in the past is mild, and not specific to Crohns, so it may not be it, and she doesn't want to mis-treat the inflammation? I don't particularly understand that....Just hoping the scope shows something. :(
 

allieinwonder

Moderator
That's great that you have found a GI that is willing to help as much as she can (within her limits). The thing is, inflammation isn't something you want to let go with your intestines. Have you ever been tested for lupus, as in a test of your ANA in your blood? If your ANA is positive, this can indicate an autoimmune disease other than crohns. Lupus can cause bowel inflammation as well, so I would look into that as well. I just don't want you to let this go when this is obviously not IBS and you sound like you are really suffering!
 
That's not so bad; at least she's willing to do tests to find out, and not send you away with an IBS dx or something. I hope your scope and CT go well and that something shows up concrete.
 
Thanks ladies. I'm not really sure how I feel about things....She was very persistent that we can't just assume it's crohns, that it might not be. And then when I asked "Ok, what else could cause bowel inflammation", and she never REALLY answered, just "Lots of things" I'm having awful pain in the LRQ tonight after my first real meal in days, (FIgure clear fluids is probably good for bowel rest, but bad for trying to find out what's wrong), and so I can't wait for those lovely doses of Fentanyl/Versed during the scope! Not looking forward to prep Wed. though. Thankfully it's Pico.
 
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