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Crohn's Disease
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Posted 1/23/2011 11:24 PM (GMT 0)
Hello everyone! My name is Heidi, and I am 31 years old. I have been diagnosed by blood work for having this disease. I have a few questions for you all.

First off, I have CONSTANT bloating. Do any of you have this? I look like I am pregnant a lot. I also have constant pain, it seems to never go away. I had a hystorectomy done, and I feel like I am still having period pains! I do have one ovary left.

I don't get constant bowel problems, I change off, and on. I find myself to be in a lot of pain. I am taking meds that my gastro doctor gave me, but they don't seem to do much.

Thanks for reading, and any input would be great!!!!!

 

Posted 1/24/2011 12:20 AM (GMT 0)
Have you had a colonoscopy yet? If not, then thats where you need to start. I haven't heard of many being diagnosed by blood test, as I have heard they aren't always accurate.

What meds are you on? Maybe if you give us a little more info we might be better able to respond. Hugs and welcome to Healingwell. Hugs!
Posted 1/24/2011 12:23 AM (GMT 0)
not a doctor but have had Crohns been dx for 10 yrs,,had a g.i. bleed once and my symptoms mimiced yours..went to hospital and they foung blood in stool..granted he had finger up my butt and had blood (but I have colostomy)..so get checked out and do not wait because you can bleed internally.... call g.i. if anyting!
Posted 1/24/2011 2:35 AM (GMT 0)
It's unusual to be diagnosed by a blood test. Most doctors diagnose by the biopsy. My blood test by the prometheus IBD panel was positive but the colonoscopy biopsies were negative for crohn's. My doctors don't put a ton of faith in just the blood test. The tests just aren't that accurate. I am a little worried that some day I will come down with crohn's because I did have inflammation in my colon but so far, so good.
Posted 1/24/2011 2:36 AM (GMT 0)
Hello! Thanks for reading! I did have a colonoscopy, and a endoscopy. They both came out clean. The blood work, and the symptoms lead the gi doctor to the diagnosis. I am currently taking 1000 mg of Pentasa a day. I feel like my insides are twisting together, and it is like there is acid in there! Right now, I am soooooo bloated. A lot of pain too. I am going to be calling the doctors tomorrow.
I also suffer from other things, I am a walking medical diagnosis!!!!
Posted 1/24/2011 2:38 AM (GMT 0)
I forgot to add that I am sick to my stomach A LOT. I feel like throwing up all the time. Have had it for awhile now.
Posted 1/24/2011 2:10 PM (GMT 0)
Hmmm...sounds like you might have a stricture in there. Nausea is my biggest complaint when I have a stricture or narrowing going on. Zofran is a wonderful med to help with the nausea without making you drowsy. You might want to ask the doc about that. Hugs!
Posted 1/24/2011 5:01 PM (GMT 0)
I have no idea what that means. LOL. I am going to be calling the doc sometime today to see when I am going back in. I have to say that I have never seen blood in my stool. One thing that is for sure that no matter how much I wipe( I know TMI), I have to keep wiping! Drives me nuts!!! The stomach pain is so bad too.
I actually had a hysto done because of adhesions, I just recently had another ovary removed, but it has done nothing. The bloating is so bad. I look like I am pregnant. It is very embaressing.
Posted 1/24/2011 5:07 PM (GMT 0)
You also might want to talk to your doctor about a possible bacterial overgrowth. That will cause the bloating, gassiness and general discomfort in your belly. I took a 10 day course of Cipro and it knocked it right out of me. GI didn't do any tests on me, just went by my description. But there is a breath test they can do for it too.

A stricture or narrowing is an area in your intestines that has had repeated inflammation and healing until scar tissue builds up and causes the intestines to narrow. I have had two resections because of strictures, but do want you to know they can also be caused by inflammation. Hope that helps some.
Posted 1/24/2011 5:09 PM (GMT 0)
1000 mg of Pentasa isn't much. I started on 4000 mg/day, but now I take 3000 mg of Pentasa and 1500 mg of sulfasalazine.

You might start thinking about a food diary also. One of my first symptoms was sudden onset of lactose intolerance. I was pregnant at the time, so I didn't think much of it, but it never went away and I remain unable to drink milk with lactose or to eat ice cream without a lot of gas and bloating.

The back pain may in fact be arthritic changes in your SI joint or lower vertebrae, also consistent with inflammatory bowel disease.  An MRI of your pelvis and lower spine can identify that.  I've got it in both SI joints and had to put my running career (haha) away.

My guess is that your probable IBD is the source of most of your issues, and that once you have treated the bowel effectively you will feel better in many ways.  {{{{HUGS}}}}

Posted 1/24/2011 6:15 PM (GMT 0)
Hi there! As for my back, I have had surgery already, I may need a fusion now. I no longer have a disk left. I have done so many things to fix my back!
I have a appt. in the beginning of march at the gastro doctor. He did tell me that the meds he put me on may be too low, and he would have to up them. I feel like I have to go to the bathroom all the time! I am sure that you guys understand. I am not much for lactose, but sometimes it bothers me.
I will mention what you guys have told me to my doctor! I hope that we can get to the bottom of this! I am so tired of being in pain, it is getting so old.
Posted 1/24/2011 6:24 PM (GMT 0)
why wait for March? Is your GI so busy that he can't squeeze you in during the next 5 weeks? Insist that you are feeling worse and need to be seen sooner.
Posted 1/24/2011 7:27 PM (GMT 0)
Welcome, Im new also. Just a thought, i had diaharea all the time and was told it was IBS for years, colonoscopy and endoscopy all came back normal. wasn't until they did the camera pill that they found inflamation in the illeitus. the part where my small meets my large intestine. the scopes could never see that far. just a thought you might ask your doc.
Posted 1/25/2011 1:22 AM (GMT 0)
Just a thought, have you had an x-ray of your bowels?? You drink barium and they follow it with x-ray to see it you have any stricturing, that is what I have I feel full a lot, but I also have pain and cramping. They found to narrowed areas in my small bowel, that will definitly cause bloating... Good luck
Posted 1/25/2011 1:35 AM (GMT 0)
I am going to call tomorrow, and tell them that I need to get in sooner. I almost felt like I was in labor earlier! I guess he told me when he did the colonoscopy, he couldnt see all of the intestine. He thinks that it is in the small intestine. I am actually on 2,000 mg of pentasa a day. I messed up :).

I am afraid that I am going to go see him, and he will blow off my pain. He is the one that kept urging me to go in, and that is when I discussed the findings of the blood work.
I have never had a secial xray of my intestines. Good idea. I am getting lots of ideas!
I feel like my bottom is on fire today, no fun at all.
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