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Crohn's Disease Forum » General IBD Discussion » Worried about unknown reasons for condition


03-08-2013, 05:11 AM   #1
SolisSpirit
 
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Worried about unknown reasons for condition

Hey guys. I have couple of things I'm worried about. I don't know if you can shed any light on it at all. I have my procedures (tests) in about a month, and I'll find out for sure then. Basically, I don't know what I have. I have no pain, I do have diarrhea, and over the last year and a half I've suffered from slight weight loss that I've been able to sustain with Ensure's and adding calories. These things, except the weight loss, I've dealt with for about 8 years - and nothing except the diarrhea has been a problem up until this point.

Well, when I went to my gastroenterologist he tested my poop and it came back showing that I'm only absorbing about 70 percent of my daily fats, something called steatorrhea. He said, "you know, normally people that come in here only absorbing that much of their fats have either been drinking or smoking for 20 years"...which floored me because I've done neither and I'm only 33, this stuff all started when I was 24. Well, when I asked him what he thought it was, he said it could be different things, but he seemed to be more leaning towards something called pancreatic inefficiency, which is where my pancreas doesn't create enough enzymes for me to break down foods, and fats. However, I have no pain, and I don't drink at all - which is almost always the reason someone's pancreas is damaged or not functioning properly.

Anyway, I happen to think I have either Crohn's, Celiac, UC, or something else. Again, the only thing is I have no pain, and I know a lot of people with Crohn's severely suffer from it. Is it possible that the reason I'm not absorbing my fats is because the lining of my small intestine's are inflamed so bad that they aren't able to absorb those fats anymore, instead of it just being an issue with my pancreas not producing enzymes? Also, my doctor put me on something called Creon, a pancreatic enzyme, and he says most people that take it usually take about 3 per meal, which comes out to 9 pills a day. Well, that's like over 300 a month and I don't know any insurance company willing to pay 1,000 a month for me to take that many a day. Any advice there would be great too.

Lastly, the only real thing that's effecting my health right now is my fat loss. When this all started I was 140, I went down to 132, then with Ensure's managed to put back on 5 pounds and now I weight 137. However, even though I'm gaining and holding my weight, I still lose fat in my face, or weight in my face, and its really starting to effect my appearance and I'm getting those looks like "he looks kinda sick". Well, My doctor, when I asked him, told me he thinks I'm a healthy individual I just have digestive issues that need to be figured out. Yes, all my blood came back normal - quite a few times. I'm very lost, but I'd just like to know there are some out there that have had crohn's and been put on Creon, and that also lost weight but somehow managed to gain it back. I really feel lost, and when I look in the mirror I just question whether I'll ever look normal again or if I'll just keep losing fat until I look like someone I'm not. Thanks.
03-08-2013, 06:58 AM   #2
annawato
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Hi SolisSpirit, I can't really answer any of your questions other than to say that with my crohn's I didn't usually feel any pain unless I had an intestinal abscess or narrowing of the bowel. Its possible you have inflammation that is stopping you absorbing nutrients but I would expect that to show up in a blood test with a high CRP or SEd rate (inflammation markers) A colonoscopy is the only thing that will let you know for sure although they often are unable to see the small intestine so maybe a pill cam would be better. MRI's show damage and thickening to the intestine too.
Sorry I can't help you more. Good luck with the tests. I hope they can sort this problem out for you.
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03-08-2013, 10:06 AM   #3
SarahBear
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Hi, SolisSpirit!

To answer your question, I'd say it is possible you do have IBD. The nutrient absorption issue could be due to inflammation. However, it's very unusual to have IBD affecting you in that way and not feel pain. It's certainly not impossible, though. Like Anna said, inflammation would likely show up on blood tests (but in some cases, it doesn't). Do you know if those tests were done?

It sounds like a colonoscopy would be a good idea, just to check on things. Did your GI mention this? If not, I would request it.

Is there a reason you think IBD is more likely than pancreatic inefficiency?

Do you currently have insurance? Have you picked up the medication / do you know they won't cover it? Many medications do cost about that much, and we just don't realize it or think about it because insurance pays most of it. If they do not cover it, there are a few things you can do. Call your doctor's office and let them know. See if there's a similar medication (preferably one with a generic alternative) that they can call in for you. They can also call the insurance company and try to talk them into approving it. You can also call the insurance company and see if there are any requirements for you to meet before they will cover the medication (i.e., some medications are only covered after you have tried another, cheaper one). I've noticed the doctor's offices don't always convey this information to you.

I hope things get sorted out soon!
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03-08-2013, 09:10 PM   #4
Jim (POPS)
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Hi Solis,
You sound like your telling my story, but it all started when I was around 45. I started having "D" everyday but no pain and as the years went by I went from 185lbs to under 140lbs 15 years later, still no pain at all. They did colonoscopys a few times and said it was IBS so I just lived with it., Well, as soon as I retired and was 60 years old I started to go way under 140lbs so they did a colonoscopy and found a lump on my apendix so the wanted to remove it. When they removed my apendix they also found crohns and did a resection on the spot as my ileum was so damaged by the crohns they had to do this. AGAIN, I had no pain before they did this, had alot of heartburn but nothing eles. So, I would say have it all checked out because it still could be crohns if you don't have pain. You don't want it to get out of hand like mine did. I have now had 3 operations in the last 1 1/2 years since they found it.
Good luck Solis, come to the chatroom sometime and join us, there are some real cool people there and we support each other.
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03-08-2013, 11:04 PM   #5
SolisSpirit
 
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Thanks guys. And Jim, that relieves me to know because that's about exactly how my situation is. Personally, I've been dealing with ibs symptoms for about 9 years, and only started losing weight over the last year and a half. I've had blood test after blood test and everything comes back "good", until I had to do a fecal fat test and then found I was only absorbing about 70 percent of my daily calories. That's about all we know at this point. I have a ultra sound, MRI, colonoscopy and an endoscopy due in the next month, so I guess I'll find out then. I just have a hard time believing this is related to pancreatic inefficiency, considering I don't drink or smoke, and never have except socially. Oh, and the fact that I'm 33 and started having these issues with I was only 24 "d". I do, however, believe I have crohns though. I've had one thing that is very specific to it. Eye inflammation for years, and usually I just close that eye during times I have those pains because they cause me headaches eventually if I don't. But, I know when and why I have it because I always feel like I have poop that gets stuck in my intestines when I have these headaches, and when I do poop the headache subsides. Again, I think its inflammation. Anyway, anymore feedback would be great, and I will be getting on chat much more now thanks.
03-08-2013, 11:35 PM   #6
Jim (POPS)
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Solis, glad to see ya in the chatroom. I hope you find out whats going on with your test next month. This site has been so good for me. And the people in the chatroom can ans. most of your questions as well. we meet there almost every night, there is about 8-10 regs there and we have a good time, not only talking about IBD but everything that we go through. they all really understand what we are going through. Hope to see ya soon.
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