Ugh Do I or do I not have Crohns?

[social me]

I was diagnosed in March with crohns based on blood work, colonoscopy and upper GI. Based on all that the Dr. said yes you have crohns for sure because of the upper GI showed damage and moderate/severe inflamation. That Dr. never gave me time a day. So onto my second and new Dr. he is in his late 60's and has been practicing forever. However he gave me an small bowel follow through, colonoscopy and special blood test that I guess would help determine if I had Crohns. Blood test came back inconclusive. Colon showed one precancerous polyp they removed and based on little to moderate inflamation they know think I have Colitis. I have been EXHAUSTED, I run every test in the book and blood work and all docs come back scrathn their head. I am loosing hope lately that I will ever feel good again. i have also started seeing a nutrionist to help with digestive supplements and things to add in my SEVERE constipation which I have always had. One of the reasons they don't think I have Crohns. Dont get me wrong Colitis is better but I am still baffled? I am just as lost again as I was before all of this. What do I do find a new Doc again for third opinion. :ybatty: And on top of it no presc. meds are helping and this new doc wants me off all suplements? I feel they help me though, Ugh confused. What should I do. Loosing hope every day and tired of need to take 3 to 5 hours naps a day. TSH, iron, D everything comes back normal, yet I am far from normal.:eek2: :eek2:

 

[happy]

social me,
It is really hard to function when we feel exhausted like that. I have no suggestions other than keeping a symptom and activity diary (with fatigue ratings) to show the doctor at your next appointment so that they know how awful you are feeling. Perhaps it is the other illness that is contributing to the exhaustion--have you spoken to the doctor that helps you with that problem? Perhaps the people on the Remicade sub-forum under treatment on this forum could help. I hope that you are soon feeling better.

 

[Cat-a-Tonic]

Why does your doctor want you off of all supplements? That sounds a bit iffy to me. I can certainly relate to all test results coming back normal - I've been ill for over 2 years now and my doctors think I have IBD but they're not sure which type. They suspect either Crohn's or microscopic colitis based on my symptoms and what meds I respond to, but they haven't actually seen evidence of any illness on any test result yet. It's frustrating to say the least! Is your doctor going to do any more tests? Have you had pill cam yet? If not, that might be a good one to try. A second opinion might be a good idea too if your current doctor is hitting a brick wall and isn't willing to try further tests. Good luck, hang in there!

 

[fosterschick]

i agree with cat a tonic sound a bit iffy , first diag sounds right , have a look round the forum there are a lot of crohns sufferers that had constipation for a long while before diagnosis , im no doc but this forum is a mind of info and one thing i have picked up is having constipation doesnt rule crohns out ??? xx good luck

 

[mike316atl]

I go to the VA hospital for my crohns. I never see the same GI doc because they work as a "team". I have had the same problem as you about a conclusive diagnosis. They certainly didn't want to diagnosis me because the govt would pay for my Pentasa. But, after diligence and a talk with the hospital patient advocate, I was diagnosed.

 

[social me]

Thanks all,
I think I will UGH, have to try now a 3rd doc GI because I am more mixed up then ever and he seems to have jumped quite quickly to me not having crohns because the first docs notes were CRAP and this one said constipation is not with Crohns, but it is. I don't want Crohns but If I have it I want to be treated for it and not misdiagnosed. I am on Christmas break and have slept most of the time. Skiing.. NO. Baking and Cooking..NO clean and organize NO...create crafts and picture frames for family members..NO. I am starting to get really down, confused and hopless that I am goinmg to feel good soon. I have been this way for 2.5 years now. Pain, naps, lethargic no energy, poor memeory, head fog and anxiety. I just want to know whats a matter cuz until then I am untreated and why r docs so against natural supplements. I hate that, so quick to push drugs but God forbid we try somthing natural and not harmfull. Sorry just grumpy and loosing hope. Thanks all!

 

[AndiGirl]

Please don't apologize, you have every right to vent your anger and frustration. Don't lose hope sweetie! I know that it's easier said than done. I'm still in limbo with my son, he's still having frequent loose and very smelly stools. My sister is in limbo with her health also. I've been there and it sucks! I'm here for you.

 

[social me]

SO TIRED of taking it "easy" days.

Having a rough day :frown: we were hoping to go skiing but my husband sat me down and said realisticly do you think your body can handle that? I had to honestly say no. So again today I sit in bed :boring: trying to do what I can from home, hoping that after a long nap I would have energy to be with family tonight. It hurts me to see so many are struggling much like I do and I just want to grab everyone in my arms and say "it's not always going to be this way." :hug: