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03-12-2013, 12:37 PM   #1
caytee
 
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Procedure After Procedure (my story)

Hi. I am curious if anyone has had a symptom route similar to mine.

Nearly a year ago I had become increasingly fatigued and with that increased pain in my feet, achilles and calves. So much pain that it became to difficult to climb stairs, hills, flex my feet and eventually walk. A few weeks after these muscular pains began I got what a appeared to be a nodular rash all over the joints of my hands and elbows. I was diagnosed by 'sight' to have Dermatomyositis as a result of also having an elevated CK level and nodular rash. I was placed on a high dosage of prednisone which got rid of the rash and the muscular pain, however only briefly. After being on prednisone for a month, I was told it's a funny disease we'll see what happens and to be in touch. Well, it's a funny disease that is in fact quite serious. And wasn't informed of the serious side effects of prednisone and lost my mind for over a month. Ah, venting sorry.

After this initial diagnosis, i was terrified of what I had and started seeing a rheumatologist, neurologist and a dermatologist. All of whom told me that a month of Pred wouldn't have gotten ride of dermatomyositis in a month. I was battered with blood work for months and tests of many sorts all of which have come back normal. I don't have neuropathy, or a myopathy, or am not testing positive for RA, Lupus, or lymes. Throughout the past year I continue to feel poorly. Fatigued, malaise, sore, deep muscle pains and joint pain, especially in the hands and elbows. It doesnt help that my job requires me to stand all day and work with my hands (manual labor - picture frame making)

In addition,during the past year or so, I had become increasingly gassy and bloated. After 2 months of increasing abdominal pain and inconsistent bowel movements (diarrhea, mucos, blood, constipation ect) I dropped gluten from my diet and found relief from the gas and boating. Yet the pain and bm persists. It hurts to eat. My pain is in the L quadrant near my rib cage, yet moves up and down my L side. I also have moments when my chest cavity on the L side becomes so TIGHT and PAINFUL that i think that I am dying.

I recently saw a new Rheumatologist who suggested that I see a GI person. He believed that my symptoms could perhaps be related to all of my gut issues. I immediately contacted a GI doc and so luckily got a colonoscopy and endiscope very quickly! It wasn't so bad. The pathology report read

"lleum: Small intestinal mucosa showing focal nodular lymphoid
hyperplasia with focal superficial erosion and mild non-specific
resolving-type inflammation. Negative for significant active ileitis,
granulomata, chronicity, or dysplasia."

Now my GI wants me to get a pill cam that I am all for as long as my insurance is on boat too!

Ultimately, I am fatigued all the time. I feel as if I have run marathons in my sleep, if I sleep much at all since I am in pain or have to go to the bathroom! I have weight loss, little appetite abdominal pain and discomfort along with joint issues. It has caused to me miss a bit of work this past year unfortunately.


Any insight, or this sounds familiar, or advice would be nice to hear.

I apologize if this is haphazard. it's been a long year

Last edited by caytee; 03-12-2013 at 12:58 PM.
03-12-2013, 12:45 PM   #2
Ya noy
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My husband was recently on high intravenous dosages of prednisone, which pretty much made him irrational as well. Now that he's tapered off, he's been extremely fatigued and having difficulty functioning. The last time it took almost 6 months before he was able to fully function normally again.

I don't know if that helps, but I wish you all the best
03-12-2013, 12:46 PM   #3
bozzylozzy
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Im sorry to hear that you are having to deal with all your symptoms. Being undiagnosed is really hard to deal with.. and your GI seems to be on the ball by getting a pill cam done.. as some dont offer this.

I havent had the same skin condition but have had to deal with a strange itchy rash (over most of my body) and its so annoying.
I think majority of people on here can empathise with the fatigue situation.. this is what I find the hardest to deal with.

The colonoscopy report.. is that the biopsy results? Or are you still waiting for those?
Do you have any family history of anything like this?

Feel free to vent any time. We are here for support as well as to advise.
**big hugs**


EDIT : I just re-read your post and realised you said "pathology report" so my question about biopsies is redundant haha
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03-12-2013, 01:11 PM   #4
caytee
 
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Yes, it's the biopsy results. Everything else was ok. My GI is really into the pill cam. He has been working with it for a number of years now.

No one is my family has this specifically, but it seems that everyone has something. My father has some digestive issues but I believe it's the results of his lack of taking care of himself and paying attention to what he eats. We both share similar food intolerances but he eats as he pleases

On a side note the rash has not come full blown since it's first appearance. While on prednisone a few 'bumps' would appear but disappear and occasionally i know get PIN sized bumps but nothing like the whacky rash I had during the summer. I am attributing it to heat and stress.

Also, I forgot to mention I am 28 years old with no prior medical issues what so ever. So doctors, test results, blood work, mri, emg blah blah blah and being ill are all new to me. It's been a struggle to slow down.
03-13-2013, 02:36 PM   #5
araceli
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Hello caytee. Just wondering. Did you have endoscopy? that will look into terminal ileum, some crohn's is located in there. Did the rheumatologist gave you a diagnostic? You may want to read about enterophatic arthritis. Just and idea.
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dx 2011 crohn's in terminal ileum, peri-anal
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Current meds.
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Prior. Prednisone, sulfasadine,
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03-13-2013, 03:03 PM   #6
caytee
 
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Yes I did have an endoscope. The pathology report read:

"lleum: Small intestinal mucosa showing focal nodular lymphoid
hyperplasia with focal superficial erosion and mild non-specific
resolving-type inflammation. Negative for significant active ileitis,
granulomata, chronicity, or dysplasia."

I sort of understand what that means!

My rheumatologist has not given me a diagnosis. He really wants me to see through the GI work and then work together from there. He is the person who suggested the I try to explore the GI route. When I think of the past year and my symptoms it seems to fit. And thanks for the idea, it's what I'm looking for.
03-14-2013, 06:05 PM   #7
dannysmom
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I hope you can get a the pillcam approved. You may also benefit from an MRE. Good luck!
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(Danny's story)
04-05-2013, 08:21 PM   #8
caytee
 
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So I had the pill cam yesterday. Any idea how long it will take to pass this little camera?
04-06-2013, 08:30 PM   #9
dannysmom
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My son passed his first pillcam in about 40 hours.
The second one .. he never noticed when he passed it (I guess he was not really looking for it.) but it is not there

I am glad you had the pillcam and hope you get some answers.
05-23-2013, 05:37 PM   #10
caytee
 
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pillcam results were normal.

As I say this the abdominal pain continues. It's most often the L side and mid-to-lower colon area. I have days I can eat, and days I can't. I distend like i'm pregnant, and have more than 5 bm a day. I'm just as confused as ever!


Hope everyone is doing well!
05-24-2013, 05:52 AM   #11
dannysmom
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Sorry you are still struggling. Have you been given any medication to try? (ie did Pred help your abdominal pain?)
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