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Very tiny hole..

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Posted 12/11/2008 9:43 PM (GMT 0)
Howdy all! I had a colonoscopy tuesday and the findings of it have thrown me off.. so here it goes!

I've been in "medical remission" since the autumn of 06. I was having D once to twice a day regularly. It became my normal so I thought that was how my body did it's thing. October of this year I started having pretty severe joint pain throughout both my legs, broke down and saw my primary doc. He did leg xrays and knowing of my crohn's disease and having joint pain associated with it during my last real flareup, he checked my sed rate. My xrays were fine but my sed rate was high.. so off to my gastro I go.

During the month of november while I was waiting to see my gastro my bms became more solid and didn't happen as often, but I thought it was from the pain meds my primary put me on for my joints. I saw my gastro december 2nd, he started me on a small pred taper for my joints and scheduled a colonoscopy for last tuesday.. which I went to. After I woke up from the procedure, he took me over to a poster of the intestinal tract and produced photos from my scope. He begins with a picture of the beginning of my large intestines where the small intestines meet the large, circled the area twice.. and started telling me about a "very tiny hole". When he got to that point in my scope, instead of an opening large to get the scope in at all.. he came to what looks like a wall. Literally. I don't even see a tiny hole. It's so tiny, it's not really visible at all. And this is supposed to be the opening to my large intestines... I'm kinda freaking out. I have a small bowel series scheduled next week to see what exactly is going on in there.

I know he won't know what's going on until after he finishes all his scopes and gets all his lab work back but what does it sound like to you guys? He did say something about maybe having to do an operation to fix the problem. So yeah, I know this is a giant wall of text, but any insight as to what to prepare myself for would be helpful.

Thanks for reading ya'll :)

Jamie

PS. "Very tiny hole" is actually pretty funny seeing as I'm a southern gal and my doctor is originally from afghanistan. I absolutely adore his accent.

Posted 12/11/2008 9:55 PM (GMT 0)
Sounds to me like you have some serious narrowing going on. I would wait and see what the SBFT says and go from there. Hugs and good luck!!
Posted 12/11/2008 10:19 PM (GMT 0)
me too... some type of stricture.. either scar tissue or inflamation i would guess..
Posted 12/11/2008 11:04 PM (GMT 0)
I concur with Nanners and Randy. Wishing you the best...
Posted 12/11/2008 11:07 PM (GMT 0)
Thanks for the responses ya'll. That's kinda what I was thinking too, and fearing. Guess I'll have to wait on the verdict next week.
Posted 12/12/2008 4:07 AM (GMT 0)
Odd that your bms got healthier and firmer while you were dealing with this though. You would think since the hole is small they would be thin.
Posted 12/12/2008 4:19 AM (GMT 0)
I had exactly the same thing 16 years ago. They were amazed anything got through at all. My strictures are usually related to scar tissue and not inflammation so I didn't have any choice but a local resection. If yours is due to inflammation, perhaps there will be other choices. Either way, the best of luck.
Posted 12/12/2008 4:23 AM (GMT 0)
Go figure Fitzy...I can lay the golden egg one time, have string beans the next and 1/2 hour later the D...sigh.

Jamie- I'm with Nanners, Randy & Ides...stricture of some sort. If your sed rate is high maybe you can hope it's just the nasty inflammation and not scar tissue. Prayers are going your way. Try not to worry.
Posted 12/12/2008 4:48 AM (GMT 0)
Fitzy- that's what I was thinking too! Last real flare I was running to the restroom 20+ a day with a shell shocked digestive system. Now it's.. weird.

CrohnsCrone and broomhilda- Yeah, I'm hoping it's inflammation (sad that you'd hope for that hah) too and not scar tissue. Thanks for the prayers and luck ya'll :). I'll let ya know the verdict.
Posted 12/17/2008 3:51 AM (GMT 0)
Well, thought I'd update. I had my sbft Monday and of course there is narrowing of my TI. My GI already called my mom (because the phone company accidently killed all the phones in the neighborhood... it has been fixed haha) and told me to watch out for any sudden changes or pains and that if I needed to come in any earilier then the 9th for any reason to let them know. Continue the pred and I guess I'm just sitting here.. still waiting for the holidays to be over to find out a verdict... *taps foot waiting

I hope everyone is well :)

Jamie
Posted 12/17/2008 11:12 AM (GMT 0)
Hi Sounds great they are encouraging you to come in if needed, hope you enjoy the holidays and that the pred. keeps things happy in there. lol gail
Posted 12/17/2008 2:33 PM (GMT 0)
Jamie try to keep your diet easy to chew, easy to digest until you can get more answers. I would hate for you to have an obstruction now. Good luck and do keep us posted.
Posted 12/19/2008 5:47 PM (GMT 0)
Another update! I saw him today instead of the ninth of Jan. because he wanted me to come in. He wants me to do a clinical research study on a new infusion drug for crohn's disease. It's a two year study. I have this twenty page information/consent form to read. I have no idea what to do... Thought I'd update, I'll write more about it when I'm more awake.

Jamie

Posted 12/20/2008 2:52 AM (GMT 0)
Okay I woke up... haha. The medication is called ABT-874. It's a two year study with the drug administered every four weeks. There is a chance of placebo but I was informed if a patient during the study had a steady decline or worsening of symptoms they would be put on the open label part of the study early on. My GI thinks I am a wonderful canidate for this study and I don't know yet. Still having to do research about what vaccinations I need for school this fall (going for my associates in applied sciences for funeral services...). If anyone has had any experiences with this kind of study or this study drug in particular... I would appreciate any input :).

He also put me on a low to no fat diet.. I was told I am no longer absorbing fat and that is probably what is causing my BMs to slow down to a crawl. First thing out of his mouth was no pizza, burgers or cheese. I almost cried a little bit.. but I kinda figured something of that sort was coming along D:. Any good recommendations for low to no fat foods? I have to stay on my prednisone, 15mgs, he doesn't want to change it just in case I do the study because it does involve them changing the dosage of it and so on... Yeah. I guess I just have to make a decision on what I wanna do.

Hope all is well :)
Jamie
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