A question for people with ileostomy's

[KiwiJo]

Hi there

this is a bit of a gross question, but it's been bugging me for a while so I'll go ahead and jump right in now that Ive finally found some people I can ask.....

I have an ileostomy bag (for about 7 years now), and three years ago I had the surgery to make it permenant. ever since that operation my bags are only lasting for approx 24 hours before they start to leak (ouch!). we get our bags for free here in NZ, but Im constantly being reminded that they cost $10, so that's $300 a month the government is spending on me. Before the operation they would easily last for 3 days! Something has changed with my poop. can it become more acidic/caustic or something like that? My diet didnt change. the only thing that changed is that Ive been in constant pain since that operation (possibly have a narrowing somewhere).

Does anyone know if there is anything i can do to make my poo less caustic/acidic? Im on SCD, so Im limited to what I can eat. And I can not tolerate probiotics yet. they make me soooo nauseous.

thanks for your help

Jo

 

[imisspopcorn]

Jo you might want to ask your doc about taking an bile acid sequestrant like Questran. It really cuts down on my acid burn and firms up the stool somewhat. I don't have a ileostomy so I'm not sure if it would be helpful for you.

 

[Guest]

hi there - i'd recommend your first port of call should be to go visit your stoma nurse - most hospitals have one, it may be an appointment system though as sometimes they cover more than one hospital. stoma nurses are the experts in stoma skin care, they've helped me on more than one occasion.

there's also a couple of self help things you could try... usually when you have consistent leakage and soreness it's due to the output being more liquidy than normal (or full of air - both can lift the appliance off) - if yours is liquidy, try eating more bulky things like mashed potato, bread, soft rice, soft pasta - they will also help to absorb some of the acid. also keep off juices, strong flavours and onions.

it may be that the actual appliance you're using isn't the right one for you - the adhesive may not react properly with your skin - this is something else you can discuss with the stoma nurse, plus additional products like stomahesive paste and rings which protect the peristomal skin.

let us know how it goes

 

[kello82]

hey kiwi! you must tell your doc that youve been in pain since the op, if you havent already. where is the pain? around your stoma or deeper in your gut??

i agree with ding as well, go see a stoma nurse and tell her about your leakage problems. is your poo very liquidy-acidy? mine gets like that sometime. sometimes it feels as if its pure acid running out. is your poo ALWAYS very watery? maybe there is a place where the poo does not flow through easily and only thin liquid gets by. i suppose that could explain your pain too....

definitly ask your doctor aboput it ASAP, i hope it gets better!

 

[KiwiJo]

It's really hard because Ive been dealing with this for three years now and because Im not dying from it, it doesnt seem to be an issue! although, i did get a quick response when blood started gushing from my stoma. i will never understand why things have to get that bad before a doctor will help you get better, sigh.
I have talked to my ostomy nurse several times and despite not being able to help me find a better product, she still reminds me how much I am costing the health system, lol. Go figure!
I dont actually get d. Ive pretty much always suffered from the big C. In fact I can eat something and not see it in my bag for up to 20 hours (paaaaaaiiiinful!). My doctor even said to me once that I shouldnt worry about the C because D is the real problem (what the heck! I have an ileostomy because my ileum was removed due to a blockage!). let me descrine my poo for you compacted/ you can always tell what it was I last ate, not much liquid in it at all, not much volume to it, hardley any gass comes out any more, I have to burp it out, smells different, hmm what else...I can feel when food passes through the pain site (kind of like ive eaten glass).

One good thing is I see a new specialist in April, but that's such a long time to wait when youre waiting to get better. Still, i guess there is always hope. I wonder if he will let me see another stomal therapy nurse/?

thanks guys

Jo


I told my doctor about the pain as soon as it started, which was the day after my colectomy three years ago. since then I have had two MRI's and a contrast xray, and two normal xrays to see if I have a blockage/narrowing which I think i do. Im due for another contrast xray, even though I asked for a barium xray. Ive also had a scope and a laproscopic investigation to look for adhesions. I feel like a dork every time i go there to talk about this pain! Some times it is cripling, and I have a huge bulge out the left side of my abdomen just along from my belly button. It's very specific when the pain is, not an all over feeling. Im so convinced it's some kind of blockage, but no one can find it.

 

[merrywidow]

this may sound daft but have you washed the stoma area when the pouch is off? i find that there can be a build up of "glue" which dosent come of with wet wipes. and i have to use soap and water on the skin. but be gentle as the stoma will bleed if your too rough.

 

[Guest]

ok i understand better now... thanks for the description lol

i've heard of this happening once before... i think it's known as 'pancaking', where the stoma output is so thick/solid that it kindof backs up just inside the stoma and pushes the appliance off.

i still think a chat with the stoma nurse may be helpful, as she's probably seen this before (and ignore any scathing comments about what you're costing etc etc - she's there to help you!), but i would also talk to your GI about the consistency of your output and see if there's any meds you can take to loosen it. ignore my comments from my last post here about eating bulking foods - i didn't realise you had this particular problem with your output.

 

[KiwiJo]

Oh yeah! Pancaking describes it very well, lol. I actually told a doctor once that it kind of looks like a cow patty!

 

[kello82]

ahh pancaking!! i dont get that but i know what you mean. hmmm....

well.... i hope you can see some different specialist, it seems like the everyone youre dealing with now isnt very helpful. or understanding....

i wonder if you could have some adhesions in there? if you have not heard of them, the are basically stringy bits of scar tissue that builds up in the abdomen from surgeries. since youve had two surgeries for your ostomy....you have all the more chance of developing them. since scar tissue doesnt stretch very well, if an adhesion is on the intestine the intestine wont be able to stretch as well as usual to accomodate the poo squishing through. make sense?

im not sure how they would show on imaging though. it seems to me that scar tissue shows uip very well on images....

 

[KiwiJo]

Yep, I had surgery last year to check for and free up any adhesions, but my surgeon said he couldnt see anything going on in the area where I have pain, and the ones he freed up made no difference to whatever is slowing things down.

I really want a barium xray. My fear is that the last time I had a contrast xray it has a laxative in it that rushed through me, I had to empty my bag four times before they managed to get me into the xray room. with a barium xray it is much slower and I know it will back up (showing a bulge and narrowing) and be evident on an xray.

Im going to phone the hospital today and put my name down to be considered for an appointment if there are any cancellations as my appointment is not until april.