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Years with not knowing what ails me.

Ok, so Ill try to start from the beginning.....Currently I am 32 years old...

Ive grown up a kid who dealt with anxiety. Still do here and there. I was diagnosed with general anxiety and panic disorder.

Forward to about 7 years ago 2009 I was on a beach trip with family. I started getting an abdominal pain start coming on.. It hurt. I thought it was maybe gas or something, so I went and bought some gas-x and ate them like crazy. They did not help. I laid in bed all night with the pain getting worse through the night, and eventually calming down the next day. I shrugged it off.

Well ever since, these pains have come and gone, and still do today. I have never been diagnosed yet. The pain i can usually tell when I am going to have one. I will get a dull just general small ache / cramping / twisting feeling in my lower right abdominal area, its standable, but by the night time I am usually hurting very bad. Hard to stand up straight, I feel like I am bloated, and if my stomach is pressed on it is super sore. I used to get a low grade 99-101 fever as well with them. The next day I would still be sore all through the day and eventually it would be gone for the majority by the end of day 3. My back will ache and between shoulder blades will also ache. Lately I dont seem to chill or get fever as much with them, but the pain and soreness / bloated etc still hurts.

Oh, and I also notice that i dont seem to poop much when I get these, and when I do, my stools are short strips, so almost flat like. During the pain or close to the end I will get pretty dark urine as well.

This has been going on now for 7 years. I have been in the hospital before where they xrayed me, gave me IV fluids, but no diagnosis.

I have been to GI doctor who has done stool sample, endoscopy, colonoscopy (have had 2 colon scopes so far..the first one he found 2 polyps, so i go every 5 years now..2nd scope was clean). I have had exploratory surgery through my belly button where they took out my appendix while in there. He said it looked like i had some fecal stones in it. I thought that would maybe be the cause. Nope, still get the pains.

I was told by the GI doc nothing turns up for what he tests for, im not loosing any weight, i dont look sickly (jaundice). I dont have any blood, and my scopes look clean except for the early polyps i had and he had removed at my age of 25. After nothing ever being found, and my numerous trips, I just kind of started giving up and have learned to live with it. Its obviously something very wrong / going to eventually wear down my body, or its just some weird thing.

Now, i started talking to my mom who has Ankylosing Spondylitis. She is HLA-B27, so she recommended I get tested for this gene. She has bad swelling of her joints / ankles etc. My general doc was reluctant to test me for it, as he didnt feel it really has anything to do with my issues.

Well my test came back that I am HLA-B27 positive. So thats where I am left. He never mentioned testing any further or investigating any further, and well I just started dealing with it, so we just kind of dropped the ball.

I recently changed jobs, and moved to a new area, and it seemed like it went away for a few a long time. I thought maybe since I had stopped dipping tobacco that maybe that had been the cause of the flares....well fast forward to two months ago, and I had the flare up / attacks again. I have had a couple now over the past couple of months, so its still will me and I am still undiagnosed with any cause for my pains.

My mom thinks i should start back and trying to find out my issue, and thinks i should speak to a rheumatologist.

Anyone have any kind of similar issues? Suggestions??
 
Your "pains" sound all too familiar to me. And considering when the flares happen you have flat ribbon like stools it seems that you might be fighting a battle with a partial obstruction. Have you had an abdominal CT performed? That was how they finally diagnosed me with Crohns. It was after years of on again, off again, symptoms.

What could be happening is that you are getting partial obstructions in the small intestine. These could cause ribbon like stools, and a lot of pain. When I had my surgery, the surgeon found that the terminal ileum (end of the small intestine) was so abstructed that the passageway was about the diameter of a pea. Partial obstructions can be very painful, and like yours, mine were better in the mornings and worse in the evenings.
 
I dont always have the thin stools. I only have them during flare attacks. Like today and yesterday (no attack right now, thank goodness) my stool looks and seems to be normal sized. Its only during the pain episodes that my stool changes like that.
 
So if your problem was Crohn's and you were having partial obstructions, what would be happening is your small bowel would be inflamed and therefore reduce in diametre. This would then make food struggle to pass through and may cause things to back up. When this happens that would be when you would get "attacks" and the stool issues. Then with partial obstructions after a couple of hours or days (for me it could even take two weeks) they will resolve themselves and then food will be able to pass through again and normality resumes. However, as the problem is still there (the inflammation) it will just keep happening until it's treated. For me it kept happening for 5 years until I ended up in hospital.

I'm not saying you have Crohn's and this is what is happening to you, but just explaining the nature of partial obstructions.

A colonoscopy can only see the very end of your small bowel and an upper endoscopy can only see the very beginning. Therefore there is several meters of small bowel that you haven't had checked over. Only a pill cam can do this, or potentially an MRI scan or CT scan but please note imaging won't always show up results - they were normal for me. But for other people they have been very useful.
 
Eleanor Rigby is correct. Partial obstructions come and go. And with them come the pain, the ribbon like stools, and the other symptoms you described. Most of the small bowel is not reached by the colonoscopy and the upper endoscopy. I hope things start going better for you.
 
Also since your mother has AS and you both are hla b27 positive couple with the back pain and joint pain I would see a rheumatologist.

CD has joint extra intestinal manifestations but also some forms of SpA or AS have GI inflammation that isn't IBD.

I'm going to tag maya142 as she can direct you to more information about this.
 

Maya142

Moderator
Staff member
I agree with Clash - you really need to see a rheumatologist and get evaluated for AS. Sometimes AS can cause gut symptoms - sometimes there is subclinical inflammation in the gut.

The back pain and low grade fever can be symptoms of AS. Other red flags would be morning stiffness and pain that gets better with movement and worse with inactivity. If you have the HLA B27 gene and a family history, your chances of getting AS or SpA are about 20%

It is also possible that you have AS and something else going on with your gut, which is causing the abdominal pain. But first, I'd get checked out by a rheumatologist and then go from there.

The Spondylitis.org website has a lot of good info.
 
If it was me, I would pursue both possibilities. I know my partial obstruction caused pain that radiated all through my back. The arithritis is also a possibility, as well as IBD.
 
Welp...i forgot all about posting on here. I am now 2 years later, and had abdominal pain all night last night.

Its not really seeming to be lower right quadrant now like it was...last night started more mid, and has moved around. I hurt all night, and chilled. I am very sore today.

I went and urinated a moment ago, and I dont know if my pee was really orange, or had a pinkish / red tint to it.

I had started seeing a new doctor here who seemed to be open to helping me, and knew what HLAB27 was. He wanted to treat me as having an autoimmune IBD with meds, but wanted me to see a GI first and get their opinion and if they feel its ok to treat me that way. I scheduled the appointment with the GI, explained all of this to him. He scheduled me for a colonoscopy. Colonoscopy looked great he said, and was the best looking one he had seen all day. Only a small pocket he noticed, but didnt seem concerned with it.

I went back for my follow up with my doctor and he saw the results. I was hoping he would now maybe give me some med to try to see if it helped my pains and problems. Well , he turned completely around with what he said in the beginning and basically just wanted to shove me back to a GI doctor and said he cant prescribe that stuff. I was confused, as thats not really what he said his plan of action would be at first.

After that, I gave up again, and here I am now. 9 years in pains that come and go, and a huge worry that I have something bad that hasnt been figured out.
 
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