Need help!! Seems redundant, new to all of this, but don't know where to turn.

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christinakm
Regular Member


Date Joined Aug 2009
Total Posts : 23
   Posted 10/11/2009 1:48 PM (GMT -7)   
Years ago, when my oldest son was dx w/ type 1 diabetes, I had to push for tests- seems they just thought it was normal for a 2 yera old to keep getting infections and lose weight... finally 6 months into it, got a dx of type 1 diabetes, after his blood sugars were over 600.
 
Here now.. is my husband. we've gone through all the tests, endoscopes, colonoscopies, etc... ct scan of abdomen and pelvis, blood work, stool samples.
Dr says by husband has IBD- ibs/d and c- pathology says the he has prominent peyer's patches in his iliul mucosa, and the differential diagnosis is crohn's and chronic colitis- of some nature, but no granulamatosis.
 
Okay, here's the thing. Dr says he might not have crohn's- but said that his stool samples revealed too much fat, so he has a malabsorbtion issue- he put him on creon 10-
and he has moderate diverticulosis, high fiber diet, low fat- okay, all this is well and fine.
However, the primary doctor did a pancreatic enzyme test, and said his pancreatic enzymes were fine.. however the gi doctor, because of the fat content of his stools- put him on creon 10 2 at each meal, one at each snack.
However, after reading the information, the papers say, be careful in taking creon 10 if you have crohn's.. which apparantly the gi doctor doesn't think he does, though the pathology report says it is avery real possilbilty because of the patches, and something or other.
 
My husband does NOT have diarrheah every day, he doesn't even go tot eh bathroom everyday. He might go every few days, but when he does, it is not always diarrheah, but now he has cramps when he goes each time. He has flare ups where he has severe diarrhea about 20 times a day, 6 or more times a  year.. then he's fine.
However, he is tired constantly, he has enough weight. 2 years ago, he weighted 210, he now weighs 160- 2 weeks ago, he weighed 167, now he weighs 160.
Yet, he has not had many bowel movements, and the ones he has had, have not been diarrheah.. he does not bleed, but he has pain. He is tired alwalys.
 
I know that crohn's is an autoimmune disease. I have two sons with type 1 diabetes, one with vitilgo, he has an aunt with hashimoto thryoiditis, his dad and sister both have psoriasis and asthma, his grandfather had ra and lupus.. all of w hich are autoimmune disorders.. we have a strong chain of autoimmune issues in the family.
 
What i am wondering about is do they put crohn's patients on creon 10? I have not heard of it, as of yet. He also has terrible gerd- for 14 years now- can't get off the omeprazole because the acid tears him apart.
 
He has an appt with this doc in 2 weeks to go over the endoscope biopsies- and to see how he has doing ont he creon.
 
I don't know what is normal, what is not. How long it will take him to feel better. why he is still feeling so tired, though he is not having any flare  issues. Except he doesn't go to the bathroom everyday despite our upping his fiber to 30g daily. He drinks about 80 oz of liquid- water a day.  Still very little urge to go.  Fair amount of gas- I just assumed it was because he was a man. sorry tongue
 
He is depressed, and teh doctor did ntoice t hat.. and said, well, I think you have IBS/ and depression. Yes, he is depressed, because he feels like CRAP!!! We went out for dinner today with the family- he took his two creon 10 like he was supposed to. Ate a good meal, because he has much of his appetitie back, and then came home with stomach cramps, and had to go to the bathroom twice. These aren't just stomach cramps, they make him break out in a sweat, and in the past, before he didn't know and would hold his breath... he would pass out...
Friday night, we had pizza- and had his two creon with it, didn't have any problems- no pain, nothing.
 
What do we expect, what is this?
 
All I know is that he is not anemic, he has fatty stools, he has lost tons of weight, his pathologist report came back with prominent peyer's patches....in the illial mucosa,
in the right colon, he had histologic feature of active chronic inflammation/active chronic colitis
 
The pathologist comments are this exactly:
This is a 51 year old male who presents with abdominal pain, diarrhea and weight loss. The illeal mucosa is not diagnostic for crhon's ileatis or gluten senstivie enteropathy like changes.
However, the biopsies from the right colon//ascending colon include four fragments of colonic mucous showing multifocal, active chronic colitis. The differential diagnosis includes, crohn's colitis, medication/drug related colitis and self-limited colitis.
 
My notes:
If this is self limited colitis, why has this been going on for more then 2 years.
He also had a ct scan of the -abdomen and pelvis with contrast dye and iv- because there appeared to be a slit on his cecum, and his appendix appeared enlarged. The ct scan was negetive for whatever they were looking for.
 
I don't know what all this means, my husband is so tired, and is so weary, and i'm sort of fearful.
 
He is currently on
vitamin b
vitamn c
vitamin k
vitamin d3
probiotics
omega 3 fatty acid
antioxident blend
 
creon 10 (7 a day)
omeprazole 40mg in the morning
20 mg of lisinopril one time a day

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 10/11/2009 2:50 PM (GMT -7)   
I'm not sure where you are located, but it seems to me that you might want to get a second GI opinion, maybe from a teaching hospital. Fatty stool and fatigue can both be because your husband is not absorbing nutrients because of disease activity. Diverticulitis is quite common after a 'certain' age, so that finding in and of itself isn't all that unusual,you just want to make sure that you are being careful of what you eat to avoid issues. While most CDers do have D, there is a portion of patients who have Constipation so that would not rule out Crohn's disease. I have not heard of Creon 10, so I really don't have information about that.

What I do know is that you and your husband know that something isn't right. There is a strong history of auto immune disorders. Keep searching until you find out what is going on and find a doctor who treats it appropriately.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 10/11/2009 7:12 PM (GMT -7)   
I agree with Zanne...go for another opinion.

Also, CTs are not 100%, even having known crohn's they don't always show what's going on. I've had numerous CTs and xrays that come back "normal" even though I'm symptomatic....which is why I've found a GI who treats based on symptoms, not tests. Before I found my GI I was treated only when I had tests showing abnormalities, and was hospitalized at least twice a year....now that I'm seeing her, I haven't been hospitalized for crohn's for over 2 years!

I also, am one of those crohn's patients who don't have typical symptoms...not that there is a "typical" patient because all of us have differing degrees of symptoms, and have different combinations of symptoms. While most patients have constant diarrhea, I go from diarrhea to constipation depending on what I eat.

Like Zanne said...keep searching till you find the answers you need. Your husband knows his body well enough to know that something isn't right, and if you keep searching, you'll find someone who can put together the clues you provide them, and help him get better.....I hope that comes soon!

Good luck!
Becky

31 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05
Currently on Humira, Prilosec, Effexor, Seroquel, Calcium, Vit D, sublingual B12; phenergan, ultram, clonazepam as needed

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