Not Sure I Belong, But Here I Am

[lorraine]

I've been having pretty life-interruptive bowel problems since I was 17. Got diagnosed with IBS at age 18 but have recently been questioning that diagnosis. In November (Age 21), I was diagnosed with Psoriatic Arthritis/Undifferentiated Spondyloarthropothy. A number of forms of IBD are often associated with these Spondy conditions. My rheumatologist suggested it might be microscopic colitis given my symptoms and lack of Crohn's/UC symptoms on my Colonoscopy in '08.

My GI doc thinks Crohn's in the portion of my intestines that the Colonoscopy/Upper Endoscopy couldn't reach is another possibility. Oof. I thought we had gotten Crohn's off the table for good after my Colonoscopy. One of my good friends had his colon removed due to his a year or two ago, and that crap terrifies me.

I'd say the fact that I've never noticed blood in my stool is the main way my symptoms may not line up with these big bad conditions. I do have pretty dark stool sometimes though, so who knows...

Here are the symptoms I can think of currently:
10+ sizeable bowel movements daily, usually loosely formed
Mucus in stool
Spasming/urge to have bowel movement at least once an hour while awake
Intense pain that comes and goes in low left and low right abdomen, alternating
Reflux (I have a hiatal hernia)
Seemingly excess gas production
Nausea
Food Avoidance got me down to 103 lbs last year.. I was back up to 120 for about 6 months but lost 10 lbs last week after a steroid injection. It's been suggested I just had water weight from my arthritic inflammation.
Hyoscyamine usually helps with the "urge to go" feeling, but not at all with the low abdominal pain
I'm on 10mg desipramine to help with the IBS but so far have noticed zero improvement
Fiber and probiotics do not help at all

There have been plenty of days I've missed work or school because I'm stuck in the bathroom in terrible pain. I'm ready to get this crud figured out. I don't know what diagnosis I want. I don't want anything worse than IBS but none of my IBS treatments cut it, so I'm hopeful that maybe with a more accurate diagnosis I can get more effective treatment.

I have a flexible sigmoidoscopy next week, joy of joys, I guess to biopsy for microscopic colitis. Had a small bowel follow thru on Tuesday. Doing a pill cam sometime soon to check for Crohn's again. I'm so sick of being sick.

 

[Guest]

hi Lorraine, and welcome to the forum - of course you belong

i know it's awful going through the tests, but if Crohn's is to be ruled out, and a proper diagnosis made, this is the only way to go really.. sometimes it's very difficult to diagnose Crohn's for sure, and the colonoscopy with/without biopsies is often the one test that will show the telltale signs for sure..

a lot of your symptoms sound very familiar to Crohn's, but then i'm sure they could relate to other IBD conditions too... our Technical Administrator, David, has recently has a diagnosis of microscopic colitis, so i'll alert him to this thread and maybe he can chat to you about that side of things.

good luck - i hope you get some answers and effective treatment very soon!

 

[Astra]

Hi Lorraine
and welcome

There are a lot of differences between IBS and IBD, and for you to be in so much pain with so much urgency doesn't sound like IBS to me! And you don't lose weight with IBS neither.
Another point is, just because you're not a bleeder doesn't discount an IBD, I don't bleed neither! Neither do a lot of Crohnies on here.
Really hope you get some answers, I know I was fobbed off with IBS for 15 years!
Insist on another colonoscopy!
Good luck with your tests next week
lotsa luv
Joan xxx

 

[David]

Hi lorraine,

As Dingbat mentioned above, I've been diagnosed with Microscopic Colitis, specifically Chronic Lymphocytic Colitis. The only way to get such a diagnosis is via biopsy during colonoscopy. Did you receive biopsies during yours?

Out of curiosity, have you been given a food allergy test? Cutting out the foods that I am reactive to and performing self massage has reduced my symptoms considerably.

We feel you and we're here for you any time lorraine

 

[Cat-a-Tonic]

Hi Lorraine, welcome. I'm in a similar boat, I'm also undiagnosed (even after many tests - everything came back normal). My GI has said this could be Crohn's or microscopic colitis - both can apparently be sort of patchy in the intestines, so biopsies can miss the affected spots and still come back normal. Your symptoms are similar to mine - I don't bleed either, but I have lost about 20 lbs over the past year and am now on steroids (Entocort) which is helping me gain weight again.

I've also been told in the past that I probably have IBS, and I was given some IBS meds which did nothing for me. I wasn't satisfied with that answer and I asked to try prednisone, and I was told that I could try it but it probably would do nothing because I probably don't have IBD. Well, I tried it and it worked! So I know I don't have IBS, but I still don't know for sure what I do have.

I hope you are able to get some answers and some relief quickly. Let us know how your flex sig goes. Good luck and welcome!

 

[SonWithCrohns]

Hi Lorraine, welcome. I'm a new user to this site as well.
With my son, Devin, he had incredible pain, and not a lot of bleeding at first. Believe it or not, in the early days, before we even seen a GI the only thing that would help was a warm bath and a dose of GasX. This went on for months, until we were finally passed on to a good GI. His first colonoscopy they labeled him with indeterminate colitis, and that was with biopsies.
His second colonoscopy, during a rather big flare brought us to his last dx of crohns. Mind you there were thirty to forty biopsies done. Not that much really considering it's just a snip of skin. I'm glad that we had that second scope! Went from indeterminate to a definite .dx, and then we got a good game plan going for meds and treatment.
Have a second scope, or third if necessary. I know it's not pleasant, but if it gets you on the right road, that is half the battle.
Best of luck, and I hope you find something to help with the pain.

 

[carrollco]

Welcome Lorraine! For twenty years I was diagnosed with irritable bowel exacerbated by stress. They put me on every medication under the sun. Then when I hit my 50s they did a colonoscopy and found ulcers throughout both sides of my colon and into the small bowel. How I wish I'd gone through more testing so this could have been ruled out years ago. So while it stinks, take heart. I'll keep you in my prayers.