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05-17-2012, 11:55 PM   #1
anyone
 
Join Date: Apr 2012
Location: Oregon
Undiagnosed again?

I went to see my doc today and he said that my colonoscopy biopsy was negative. He said that he does not have enough information to give me the complete diagnosis. I was just in the hospital when they told me I had Chron's. My discharge paperwork says diagnosis Chron's. Anyway, I was told this after I had an MRI, which he said was definately abnormal. I was told that it really could not be anything other then Chron's, which was before the biopsy results were back from the colonoscopy. I was also told that they did a Prometheus Blood Panel but the person at the hospital forgot to check the IBD disease box and they just did inflammatory markers, which were very high.

I'm not very impressed because I doubt my insurance company is going to want to pay for those again. Anyway, while I was in the hospital, I only seemed to respond to the Prednisone in IV form. I would do good, they would give me the pills, then I was back the same. I have been out of the hospital for about 4 days and I'm about were I was before. The doctor wants to up my dose of prednisone to 60mg. I thought this stuff was suppose to work in hours. I have been on it for over a week now.

My abdomen hurts like crazy and I have no appetite again. When I first got out of the hospital my appetite was working great. I also had some energy. I still kept to the soft foods but buy the next day, the pain started back up, which reduced my appetite. I told the doctor, I had not had a bowel movement since leaving the hospital and he gave me some stuff for that. I used to have D all the time, now I can't seem to go. I still feel like I have D, but I can't go. It hurts having a bowel movement when I do go. Its like trying to pass a golf ball through a straw. Its not large but it hurts. My colonoscopy was normal, so I don't know what gives. The CT scan prior to that showed slight narrrowing of the sigmoid and cobblestonning. The MRI was abnormal also and he sees nothing.

I'm pretty frustrated at this point. I'm schedualed for a pill cam next Tuesday. I'm wondering if I'm taking 60 mg of Prednisone is there going to be any inflammation for them to see? I really would rather suffer and get a diagnosis then get some short term relief and suffer indefinately.

He does not have a scope long enough to biopsy my infammation. If that is the gold standard, I'm going to be in a world of hurt. I'm 9ft 9inch male at 136. I used to weight train at 190+ , which was about six months ago.
05-18-2012, 02:07 AM   #2
bozzylozzy
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Join Date: Oct 2011
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Im sorry you've been messed about. thats not fun.. when all u want is some answers!
I too got told i had crohns and got given prednisolone. then my colonoscopy was clear.
the only thing is ive been fine since then so ive not been chasing further tests.

your doc should know that crohns has skip pattern? Which makes it difficult when taking biopsies if they cant physically see inflammation (which will have been masked by the pred)

Its a tough one really. if youre in a lot of pain.. dont stop taking the pred! But like i said.. it can ask symptoms too
good luck with the pill cam and hopefully can get some answers x
__________________
Grumbling Appendix removed OCT'11
Chiari Malformation diagnosed JUNE'12 (surgery 5th July)

Alternating diagnosis of:
Seronegative Inflammatory Arthritis / SAPHO syndrome

Meds:
Vitamin B12 injections
Sulfasalazine
(Previously Prednisolone.. worked a treat!)

Watch out.. there's a blonde about!

Last edited by bozzylozzy; 05-18-2012 at 02:15 AM. Reason: spelling mistake
05-18-2012, 02:30 PM   #3
Txarmywife
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Join Date: Apr 2012
Location: Central Texas, Texas

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I'm sorry you're going through this. If your inflammatory markers were high did he give you a reasoning for why they would be...if it's "not crohns"? Did the biopsies show inflammation but was negative for crohns or were they completely "normal"? I ask this because thats how my disease is...i show inflammation on biopsies in the colon (and else where) but they aren't typical crohns or uc cells i guess thus my dx is Inflammatory Bowel Disease Undeterminate type and has remained the same for 12 years. I never show markers for either crohns or uc. Thats the trouble with IBD, some will have textbook cases and others wont. I know its frustrating but if the meds are working and he's willing to perscribe them despite a 100% without a doubt diagnosis...i would try to stay hopeful. The pill test could very well give them the answers they're looking for to give you the crohns dx. There's also microscopic crohns or crohns colitis. So many variations to IBD.

Also I know what you're referring to with the pain you describe. I've been on a lot of narcotics which are known to constipate...so I still have the same urgency pain but the inability to go sometimes. This is particularily terrible because at least when I'm going D 10+ times a day i know when i get that awful pain it'll be relieved with a bm...when you're unable to go the pain remains. Are you on pain meds that would be causing this or is it possible you may have an obstruction? I hope you find answers soon.
05-18-2012, 08:58 PM   #4
anyone
 
Join Date: Apr 2012
Location: Oregon
The colonoscopy was completely normal. He did not see any inflammation. So, he did not have a chance to biopsy an inflammed area. He just did some random biopsy's. My stomach was inflammed but I think my other GI just looked for Celiacs and H pylori. I clearly have inflammation, he just does not have the scopes big enough to get there. I live in a small town. He really does not know what else it could be at this point. Everything that he sees so far points to Chron's. He just said that without the biopsy, he has to build a case for it before he can clearly diagnose me. I'm having the pill cam on Tuesday. He is also going to request my insurance do the prometheus blood panel again, because someone forgot to check the IBD box the last time. Other then that, I'm feeling better today on 60mg of Prednisone. It took about 7 hours before I noticed a difference, which is good. I'm actually eating which is nice. I think that my lack of nutrition is a big problem. I can't expect to feel good on Prednisone by itself if I don't eat. But I can't eat if I hurt so bad. So, I'm feeling better today and I'm eating soft foods.

I will update with the pill cam info. I wonder if I can get diagnosed, undiagnosed, and rediagnosed all in a period of a few weeks. Hmm that would be interesting. I will take that as progress.
05-18-2012, 09:09 PM   #5
Catherine
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Location: Melbourne, Victoria, Australia

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Sarah was dx wth crohn on the wednesday and had urgent mri on the monday. Her gi wouldnot start any treatment before the mri, as he did not want any healing before the mri.
__________________
Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
05-18-2012, 09:24 PM   #6
anyone
 
Join Date: Apr 2012
Location: Oregon
Catherine, I'm so sorry that she had to wait for so long before they would start treatment. I can only imagine how hard that must have been for you. I also had my MRI before the treatment but I only had to wait 2 or 3 days after I went to the ER. I hope Sarah is getting better now.

I will have been taking Prednisone for two weeks when I get my pill cam, which will be from an initial dose of 40 to my current dose of 60 mg. I'm wondering if there is going to be any inflammation to see when they do the test. Do you guys think that it is a waist of time?
05-19-2012, 02:22 AM   #7
Catherine
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Sarah is much better, it hard to believe how sick she was. Reading people stories I believe she is at this stage one of luck ones as she has mild to moderate chronic crohn.

She has managed to taper down to 10mg pred.
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