The Dilemmas...

[joejohn]

Okay so I've been having trouble lately with my ileostomy/crohns. Let's start by saying I've had one for over 3 years now. It is technically temporary, as I still have the majority of my colon, but I don't think I'm getting a reversal anytime soon (keep on reading for details ).

For approx. 6-8 months I've been dealing with the first flare up I've had since I had the ileostomy procedure. I had went to see my GI doc after I had a barium test that showed the last 20 cm of my ileum was inflamed. He started me on entocort and told me to arrange another appt in 3 months if the symptoms persist. While I was on entocort I had discovered that I was now only experiencing pain when there was, for brutal honesty's sake, shit coming out of my stoma. I was double over in pain when this happened, however, it would only last for maybe 30 seconds and go away. Anyways I went back to my GI doc and he "dilated", aka stretched my stoma open on the spot.....and let me tell you....I have not, and will not, experience pain like I did when he did that! Anyways, pain has persisted, however, not as bad as before because now he is instructing me on how to perform dilations on myself! Whooopwhoooop haha! He also scheduled me for a colonoscopy to finally see what's really going on.

However, I have a new symptom. I get these strong urges to go to the bathroom. They aren't just urges and I end up going diarrhea. Quite a bit for someone who hasn't had anything passing through his colon for several years now. Since this symptom started I've also lost weight, maybe 5lbs. That's a lot though for someone who struggles to stay around the 100 lbs region and is slightly short of 5'6. My energy hasn't been at it's best either, and I know that these episodes of diarrhea results in pure loss of nutrients because nothing is passing through my colon.

The last time I saw my GI doc he also gave me a rx of pred and said to use it if I feel the need to. So I started it a week ago when this new symptom started but it hasn't gone away....I've gained a couple pounds already (I for one don't mind the side effect of weight gain because I'm so damn skinny) and feel much better EXCEPT for that daily bought of diarrhea.

So I'm turning to anyone who is willing to answer the question...does anyone have any idea what this could be or experienced this?!? I'll leave it open to your interpretations. I like brainstorming.

Sorry for such a long post...

Cheers,
Joey

 

[Jennifer]

I don't know much about stomas and have never had one (connection, I think yes) so my question my sound retarded but I am confused. You say your new symptom is having strong urges to go to the bathroom, is it coming out of your ass rather than the stoma? As far as I'm aware, it should only come out of the stoma, hence the gut rest of having a temp one. I only ask because I'm not aware if people with stomas get urges to the bathroom, I thought it just came out on its own accord. The loss of weight is likely water weight you're loosing due to the diarrhea which oddly enough the Prednisone will help bring that back as you've noticed already. What dose of Prednisone are you taking? It's possible that you may need to be on it longer or may need a higher dose to reduce the inflammation (which would explain why you have pain when passing fecal matter) although the scope should be able to tell you what's going on and will help you get proper treatment. When is the scope scheduled?

And 5'6" and 100lbs is by far underweight. I hope you'll be able to bring your weight up soon and that your issue gets resolved as soon as possible so you can get your life back and not be in so much pain anymore.

Welcome to the forum! Sorry if I'm not much help at the moment. We also have a stoma subforum which may be useful to you. Found here: http://www.crohnsforum.com/forumdisplay.php?f=46

 

[joejohn]

Oh I forgot to add, there is hope that one day I can have a reversal surgery to connect my small intestine to my colon so I could be back to the way things were prior to surgery. It just hasn't happened yet.....

 

[ameslouise]

Joe John - If you haven't already made an appt to see your gastro, please do so right away! And if you can't be seen for a while, perhaps you should go to ER?

Your colon should be resting and if stuff is coming out of there other than the weekly or so mucus buildup, that does NOT sound good. Sounds like there could be active disease in there. I really think you need to have that part scoped out to see what's goin on.

PLEASE - I am no doctor, but this sound very serious to me. You don't want to end up with the remaining part of your colon rupturing. There shouldn't be any stool in there so - When you say diahrea is coming out -does it look like stool? Do you have a loop ileo? Is it possible that the stoma stretching f-ed something up and stool is now passing thru? If yes, you could be risking a rupture of the remaining part of your colon -which could lead to sepsis, as well as risking ever getting your ostomy reversed!!

Please, please get this checked out right away!!! - Amy

 

[Terriernut]

I'm very much with Amy and Crabby on this .....get yourself seen POSTHASTE.

:goodluck:
Misty

 

[joejohn]

UPDATE - The diarrhea stopped! You are all right - I was beginning to get worried that it was a possible fistula because I have had those in the past (a main reason I have an ileostomy in the first place). But it has been a little over 24 hours and I havn't gone to the bathroom (at least that way). I had thought about going to the emergency room but I have done that in the past and as soon as they hear the word crohn's they don't do anything for me besides give me something for pain and tell me to call my GI doc. So I wasn't about to go there. I am pretty much confident the disease is active but I think the pred is doing its job for now. I'm not sure if I should still call my GI doc as I'm not sure if he would see it as an emergency any longer.

ameslouise - I do not have a loop ileo and it did not look like usual stool that's why I wasn't sure if it was just my crohn's making my colon hyperactive or something. It is watery and almost like a light beige colour. No blood, if there was I would be definately going to the ER. When I had fistulas there was a small amount a blood upon bowel movements so I've been kind of comparing symptoms from that time before. Anyways my scope is for June 3rd and they're scoping both my colon and my ileum because my GI doc already believes the disease could be active, however, I think the pred is calming things down.

I should also clarify - I am stretching my stoma once a week, digitally, and using clean but not sterile technique. My GI doc believes I have a stricture which is why it hurts when there is output. I agree with him on this (I can feel it when stretching - hurts like hell!) I know it isn't the safest thing to do, however, it is that or allow the stricture to become worse. When I get my scope he is going to dilate it to open it up much better as I'll be under meds.

Thanks guys for the support. I'll keep an update in case something changes.

 

[ameslouise]

Hey JoeJohn - Glad things have quieted down for ya "down there" - Hope things stay good until June 3 when you get the scopes to see what's going on!

Thanks for the update - keep us posted!

- Amy

 

[xJillx]

I hope the pred gets things under control for you.

Good luck with your upcoming scope and let us know how it goes!

 

[Terriernut]

Good luck with the scope!!! Be well!

Misty