Newbie

[dayng1016]

Hello everyone! I'm new here, been reading everyone's story, advice, etc. I'm 33yrs old, live in Clarksville, TN. I was diagnosed with Crohn's in June 07, and not sure my problem is only Crohn's. It goes like this; back in October of 06 woke up to go to work and was having some RLQ pain. When it first started the pain wasn't too bad, kind of going through to my back. My first thought was that possible kidney stone. I was running a fever, little over 100, but as the morning went on the pain got worse. After a while and when my fever kept going up, I decided to go see one of the doctors I work for (work at an Urgent Care Walk in Clinic). I was only having the stomach pain and fever, no diarrhea or anything like that. My doc, was thinking possible appendicitis, so he sent me for a CT scan, and of course, they couldn't see the appendix. He ended up calling a surgeon and it was recommended I go to the hospital to be admitted. I was in the hospital for 5 days, but after the first day the stomach pain had went away but the fever had not. All the test and blood work they did, they decided to do a laporoscopy and look at the appendix and go ahead and remove. After surgery it was said that the appendix was fine, and all they found was alot of swollen lymph nodes in the abdominal area. On the 5th day, I asked to be released b/c they were getting nowhere, so they let me go, with a fever still. They recommended I follow up with my rheumatologist b/c of my RF and CCP were really high. Seen the rheumy and he still had no clue on the stomach pain and by that time it had disappeared.

Moving on, to about December had another bout of lower stomach pain, still no diarrhea and still to this day or ever bloody stool or rectal bleeding. I followed back up w/ the rheumy in December, he recommended I see a Gastro, and got me an appointment. Seen the Gastro, had a colonoscopy w/ biopsy which at that time was told it was crohn's w/ a stricture in the ileum. He went ahead and sent me for a small bowel series and another CT, recommended surgery, scheduled an appt. w/ a surgeon. All the test came back the same, a stricture, considered to be moderate to severe. He put me on pentasa 500mg 2po 4xday. Moving on, had done some reading and opted not to have surgery at that time until trying every option possible; he wouldn't, said "nothing will help until I have the surgery", so decided to get another opinion. Did the other doctor, and still not convinced that my problem is ONLY crohn's.

Here's why I don't think it's just that. My stomach pain is still there, and as said early, still no diarrhea, blood or anything like that. I do however, have constant upper abdominal pain now, not so much lower anymore, no matter what or how much I eat, everything sits REALLY heavy on my stomach, making me bloated, constipated and gassy. I've been keeping a log of everything I eat, drink, snack on, etc. The fatigue is crazy though. I'm always tired and don't remember the last time I slept through the night. Joint pain, very rare. Muscle weakness and some tingling and numbness in my right leg. All my blood work CBC's, CMP, ESR, and others have been normal. The one's that are abnormal are my ANA (>1:1280--normal being <1:80), and SSA and SSB were very high (per the rheumy), so with that last week diagnosed my with Sjogren's (based on labs and other symptoms-dry eyes and dry mouth).

I have been trying to get my "second" opinion gastro to listen to me with the thought that I don't think it's only crohn's that I have going on. My second Gastro tried me on Imuran, but we (me and the med) did not get along, at all. He recommended Remicade, did one treatment with that (only b/c of ins/cost/and him not being willing to help to cover through medical instead of RX coverage) So, with that and some of the reading I had been doing, I had my docs run a Celiac panel this past Monday (still awaiting the results). The doc at work, agreed though that something else is possibly going on and set me up with a Gastro at Vanderbilt, recommended an EGD. She said she was suprised none of the other Gastro's had even done one, so was I. So until the 16th of next month, I'm just going along for the ride. Still taking Pentasa, but it does not a thing for me and weaning down the prednisone (at 10mg/day going down by 5mg each week, started at 30mg/day).

All this is very frustrating. I've been reading everyone's story and sometimes I think, I have never had that problem, so is it really Crohn's? I don't think all the tests would be consistent with the same thing if it wasn't, but I wonder what else is going on. Well, I apologize for this being so long and drawn out, but would love to hear your thoughts and opinions. There is a lot of good information on this site.

Thanks! Pam

 

[teeny5]

Welcome to the forum! I think it is a good idea to get different opinions. The disease like Pen said is very hard to diagnose and is different for everyone. They "think" I have Crohn's but they are not sure still. I have had some tests that suggest it and others that say it isn't. I definitely have IBD though...just can't tell if it is Crohn's or Ulcerative Colitis.

Hope things get better for you. I took Asacol (a 5-asa like Pentasa) and it did nothing for me. Now I am on Entocort and Azulfidine (sp?) and that is working so far.

 

[mikeyarmo]

Welcome!

I am sorry to hear that you are having a frustrating time right now. Personally, I never had diarrhea either and was actually very constipated before and while diagnosed with Crohn's. I was also very tired, and I think it was likely due at least partially to the great blood loss I had in my stools as well, which can easily make you anemic.

 

[Kaitlyn]

Hello!
I think it's a really good idea to get more opinions if you aren't satisfied with the diagnosis.
I'm sorry you're having such a hard time. Hang in there, though.

 

[dayng1016]

Crohn's and ?

Thanks for the encouragement. Things have been so, so since my first post. In response to being on any antibiotics, no I have not been on any and it has not ever been recommended. I have been tried on Entocort with no relief. I have started taking Omega 3 fish oil, on recommendation from an aunt (in-law) with crohns. She had shown me an artical about it, so I figured I'd give it a shot. Besides, I know fish oil is supposed to be good for you anyway. When I seen my rheumy recently and explained to him the issue I was having with continuing with Remicade, he did tell me that Humira had been approved for the treatment of Crohns and had went that route through my insurance. I just started my first injection with that yesterday, so hopefully it will help, and the cost for me is much better.

I did get all but one blood test for the Celiac panel back and so far negative, which is good. I can except a diagnosis of crohn's, I guess it's hard for me b/c my symptoms don't seem to be the typical. Based on all my tests, the crohn's is in the ileum, the lower part of my small intestine. Do any of you get extremely tired right after eating and headaches with it? I have this past week really bad.

When I have a bad day with the stomach pain and feeling extremely full once I do eat, I cut back, big time, on eating because I'm miserable. I have dropped approximately 20lbs in the past 6mos and I hate it, wishing I could gain the weight back, but its so hard. It's a toss up, eat so I don't feel hungry all the time but hurt, or cut back considerably, lose the weight, but not hurt as much.

Thanks for the support from you all!