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Stoma needs reversing urgently!

I had an emergency stoma in October after a resection split.

I am losing 3 litres a day and am now on weekly magnesium infusions.

Have tried everything to slow it down but nothing works, Imodium in every form possible in every dose possible, etc

My gastro has told me to lay off the Imodium and he has referred me to surgeon for urgent reversal as the stoma is actually making me ill!

My gastric emptying used to be about 20 minutes on a bad day but now it's instant - it's very bizarre watching your food leave as soon as you have swallowed it!

No idea what the nhs see as 'urgent' but hoping it will indeed be soon as 3 litres a day is a lot of emptying!
 
I lose about that each day, I had a high out put. My food is generally seen pretty instantly. I have no choice of reversal though as I've had a proctocolectomy. Im constantly having to rehydrate myself. I'm sorry you've had to go through all this.
 

Terriernut

Moderator
Oh dear. They need to figure out why the rapid dumping is going on while they are at it! (me too...on a bad day 7 1/2 minutes from mouth to bag..and I have a colostomy)

Urgent over the holidays is not going to be fast...they all go off to Bali or somewhere lovely dont they?

Hope they get you in right after xmas.
:rosette2:
 
Hi fruit loop if u look back through my posts you will see I had this problem and had to have my ileo reversed. Do you take any proton pump inhibitors ie lansoperazole?
 
Yes I have taken omeperazole twice a day for a few years and I'm now on 2 twice a day - I take 2 before bed and that gives me a few hours sleep but I wake up between 3 and 4 full, then have to empty again an hour later.

Currently sitting on sofa at 6.30am after waking up leaking at 4 am - my skin when I changed last night is so broken down there is actually no skin so I'm too scared to change the bag as the pain wheni do is so bad it actually makes me cry!

So I'm sat here with a towel wrapped round me waiting until my output slows down enough so I can change the bag and maybe get some more sleep.

I'm so depressed about it all right now if its not night leaks, it's sore skin. I'm using all the stuff I've read about on here and last night actually used antiseptic cream - that's probably why I'm now leaking as the skin may have been not totally dry when I put the bag on.

I spend my days full of "why" questions I never know the answer to! Why did it leak, whys the skin so bad, why is the output so high, why, why, why!
 
I didn't realise Omeprazole had any effect on output. It's not listed on the leaflet that comes with the tablets. I take it to avoid reflux. It's shame the Loperamide (Imodium) isn't working. When I had my stoma I was told I could take up to 12 x 2mg capsules a day
 
Oh Hun, I'm so sorry that you're going through this. I don't really have any advice, my stoma is only a month old so I don't know very much yet. But I just wanted to send you a hug.
I know that feeling of being too scared to change your bag because it hurts so much. I ended up going back to my old ward at the hospital because I didn't know what else to do.
Anyway, I hope you get your reversal ASAP! Big big hugs!
 
Oh I'm so sorry! Hang in there! This will too shall pass! It's so very hard and you have every right to feel the way you do!

I wonder if you started taking psyllium husks/Metamucil AND Lomotil if that would help you? I know someone who went through this exact situation, and she said it helped a lot.

Why did the gastro doc tell you to discontinue Imodium? Did he replace it with prescription strength Lomotil?
 

annawato

Moderator
Staff member
I'm in the same situation with output. I take 16 loperamide a day and still have a high output. It seems impossible to stop it leaking onto the skin cos its so liquid and just seeps under paste or rings. With my last ileostomy I had the same problem and found the dermacol collars a huge help although I had to cut them down a bit. I can't use them with this ileo cos its a very odd shape but they may help you with leakage. As for thickening the output, apple without the skins and any soluble fibre should help- google soluble fibre for some ideas. Hopefully they can do the reversal soon for you though. In the meantime I will be thinking of you and hoping that you can find something to help. I know what its like to spring a leak in bed - happened twice last week, and having to get up constantly wears you down so you can't cope with everything like the pain of changing bags. I read on here about people who only have to change every 3-5 days and am amazed. I have to change every day and it can take an hour at least trying to get clean dry skin while the stoma keeps dribbling or spurting more and more liquid every where. I think I go thru a roll of loo paper sometimes trying to soak it all up. Fingers crossed you get some relief soon - oh yes, my community nurse suggested mercurochrome for the burnt skin - I haven't tried it yet because I'm scared of it hurting but may be worth a try to heal the skin............
 
Do you guys ever eat a lot of crisps (or chips)? Ready salted are good at thickening things up. Also foods high in gelatine like marshmallows. I think I'd end up the size of a horse if I used food alone to thicken my output though lol.
 

Spooky1

Well-known member
Location
South Northants
Michelle, i'm amazed at you!!! Digest fats,omg, please. they are the fastest thing through me lol. I personally don't have a stoma, but mum has had one for forty years. poor thing has all these issues, she doesn't cop with it now cos she's suffering from dementia. I had to try and remind her about something she introduced me to, its called cavilon. It creates almost a false skin. But thats all i can advise. I know about the fluids flying through though. Im there with that despite still having half my colon. I am wanting to send you a hug though. My specialist said a stoma wouldn't help my case, perhaps this is why. I can always remember mum crying from her stoma soreness and not being able to stick her bag onto the skin cos it was bleeding/weeping and come off with the bile. So i do understand you. good luck with the reversal.
 
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I know exactly how you feel.I have taken up to 30 imodium a day trying to slow it down or thicken it up because leakage is so bad.I am still waiting for a decision on if they can reverse me or if not trying a 3rd revision.Good luck and I hope you feel better soon.
 
Michelle, i'm amazed at you!!! Digest fats,omg, please. they are the fastest thing through me lol. I personally don't have a stoma, but mum has had one for forty years.
I'm not talking about the speed of transition, I'm talking about the consistancy of output. It's what I was told was best to thicken output and personally it works for me. The extra salt helps with dehydration issues.
 
Although salt can hydrate you, too much can dehydrate you. It's quite tricky. You have to make sure you don't overdo it.

When too much salt ingested and ends up in the blood, the concentration of the blood increases, causing water from the surrounding tissue to move into the blood to dilute it and eventually move into the the kidneys and excreted in excess to remove all the extra salt injested. Therefore, when excess salt is purged by the kidneys, the requisite amount of water is "pulled" out along with it. This process leads to dehydration.

Make sure they ran a bun level on you and that it is within the normal range. The bun level will indicate the function of your kidneys.

Both Metamucil and Lomotil taken together would be helpful.
 
Hi Anna
Try the mercurochrome it doesn't sting and it drys out the skin. It does however stain the skin and anything that comes in contact with it. It has saved my hide a few times. I also keep a stash of beta dine wipes handy as they are also great when the skin is starting to look a little dodgy.

Good luck fruit loop, I hope you get sorted soon.
 

annawato

Moderator
Staff member
Re salt, I was told by the doctors that with a high output stoma you need to have lots of salt because you lose sodium with the high output and can then run into electolyte and kidney problems. I guess it depends on how much is too much, or not enough.
 
Be careful of too much salt with an ileostomy as it further dehydrates you.

Not necessarily. If you have your entire colon removed then you have nothing to worry about- your colon is where salt is mostly absorbed. Potassium too. I add salt to my drinks (ice tea, lemoade, juice) and I feel better.
 
Re salt, I was told by the doctors that with a high output stoma you need to have lots of salt because you lose sodium with the high output and can then run into electolyte and kidney problems. I guess it depends on how much is too much, or not enough.

Also depends on your colon- if yours is removed,then it's almost impossible to have too much salt. Salt and potassium are abosrbed mostly in the colon. I find that I feel better by making sure I stay hydrated and add back some salt to my drinks (like juice, ice tea, lemonade, etc).
 

annawato

Moderator
Staff member
Also depends on your colon- if yours is removed,then it's almost impossible to have too much salt. Salt and potassium are abosrbed mostly in the colon. I find that I feel better by making sure I stay hydrated and add back some salt to my drinks (like juice, ice tea, lemonade, etc).
That helps explain it too, if the colon is avoided like with an ileostomy then salt isn't being absorbed as well as losing it in the output.
 
The hydration issue is something I have to be conscious of now. Had my checkup recently with my primary care doctor and after she looked at my blood work the first question she asked me is how much water I'm drinking. I NEVER used to think about that until this year when the flare up happened. Now that I'm more consicous of it, I'm going #1 like a racehorse. I wish there was more of a middle ground!
 

annawato

Moderator
Staff member
Yeah its a nuisance isn't it. Do you have an ileostomy or colostomy? I think I read that you mainly have large bowel disease. Is it still flaring even with the stoma?
 
Yeah its a nuisance isn't it. Do you have an ileostomy or colostomy? I think I read that you mainly have large bowel disease. Is it still flaring even with the stoma?

Large bowel removed in 1987. UC dx in 1986.
Ileostomy around 1991 after multiple j-pouch failures (and one koch pouch).
Crohns dx in May 2012, just inside stoma. Not so bad now, but getting of the Pred has been difficult. Last day is scheduled for Feb 19, so keeping my fingers crossed.
 

annawato

Moderator
Staff member
Wow you have had a tough time over the years! I know how you feel with the pred. I'm down to 15 then have to get tested when I get down to 10 to see if adrenal glands are working. I usually start flaring when I drop below 10 and even if the crohn's doesn't flare the aches etc are horrible. Is this what happens with you or do you get a crohn's flare
 
Wow you have had a tough time over the years! I know how you feel with the pred. I'm down to 15 then have to get tested when I get down to 10 to see if adrenal glands are working. I usually start flaring when I drop below 10 and even if the crohn's doesn't flare the aches etc are horrible. Is this what happens with you or do you get a crohn's flare

I started at 60mg end of May and tapered off to zero in August. But within a week I got that unholy abdominal pain and wasn't having any output. I was taking AZA but it hadn't kicked in yet. Also was taking Entocort. So hospitalized for a few days in August, started Prednisone again and stopped the Entocort. I just started on 5mg a day for two weeks. Then go back up to 10mg but do that every other day for two weeks. Then 5mg, then 2.5, then off. Been on Pentasa since May, but not sure that's doing anything. All the inflammation levels on my blood tests are back to normal, but I'm not feeling all the way back to normal yet. My gut isn't in any pain, but I have gas and burp a lot, which gets old. I think the AZA is helping a lot now.

I don't have much to say about what my Crohns flare is like, since this is my first one in the last 26 years. Remember, I thought I was cured with surgery for UC. Over the years though, I have on occasion been hospitalized for a day due to small bowel obstructions but I could always point to a bad food choice that caused it. Last year and again this January I had another episode, but I couldn't recall anything I ate that would have caused it. Each time though, just got some fluids and went home. In May it happened again but the blood work was different, so had xray, ct scan, and eventually got scoped through the stoma. Crohns then confirmed. I find that having the ileostomy makes things a lot easier since I have no problems getting to the bathroom. It's probably easier to tell if things are getting worse since I'll notice changes in my output levels. So far though, no scarring, strictures or any of the other bad stuff others get. I hope it stays that way- I paid my dues years ago!
 
Wow you have had a tough time over the years! I know how you feel with the pred. I'm down to 15 then have to get tested when I get down to 10 to see if adrenal glands are working. I usually start flaring when I drop below 10 and even if the crohn's doesn't flare the aches etc are horrible. Is this what happens with you or do you get a crohn's flare

Actually, the really tough time was between the ages of 18-22. The next 22 years were pain free for the most part, the only exception being the occasional obstructions I got after eating something I shouldn't have.
 

annawato

Moderator
Staff member
It certainly does sound like you paid your dues - do you think the original uc diagnosis was wrong and it was really crohn's all along? Not that it matters they are both awful diseases. Good that the Aza seems to be helping and hopefully you can get off the pred soon, its such a terrible drug.
 
It certainly does sound like you paid your dues - do you think the original uc diagnosis was wrong and it was really crohn's all along? Not that it matters they are both awful diseases. Good that the Aza seems to be helping and hopefully you can get off the pred soon, its such a terrible drug.

Of course it was wrong. I had/have Crohns Colitis. The problem was that back in 1986 when I was originally diagnosed there were ZERO markers for Crohns disease. No granulomas, no fistulas, the ulceration did not go very deep, etc. Everything looked like UC and even the pathology report which looked at my colon and rectum after removal, said it was consistent with UC. From what I've learned this year, one cannot get both diseases (Crohns and UC) so since I have Crohns in my small intestine now, I must have had Crohns Colitis in my large bowel. One of the reasons my j-pouch failed was due to the recurrence of abscesses, and one of them I believe was caused after a fistula developed (but after all these years I don't remember all the problems now). That would also indicate I had Crohns. It actually WOULD have mattered back then. If I had showed some marker of Crohns disease origianlly my surgery course would have been different- I would gone straight to the ileostomy and not had the j-pouches. that would have saved me about 12 operations over 3.5 years. Also, nobody ever really told me that when one has UC that later on the dx could change to Crohns. I always thought they were different diseases and when you get one, it's highly unlikely to get the other later on. But with UC, there is always a chance it's really Crohns Colitis- there is still no way anyone can know 100% for certain that UC really is the cause. I was just a little po'd in May when I learned I was sick again with something I thought I was done with- that feeling could have been avoided. But I have not been nearly as sick as the last time so that's good. I agree Pred is an awful drug, but I when I was off in August and that pain came back I was sure glad to go back on it. Nice choice we have aint it?
 
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annawato

Moderator
Staff member
Thats terrible that the original diagnosis was wrong and so caused you so many operations. I hope you didn't take my comment the wrong way, I was just ignorant about how the diagnosis could have affected your treatment so much. And I agree with you about the pred - can't live with it can't live without it. It seems for some of us its the only thing that works although I'm still hopeful I can get off it this time..............fingers crossed.
 
Thats terrible that the original diagnosis was wrong and so caused you so many operations. I hope you didn't take my comment the wrong way, I was just ignorant about how the diagnosis could have affected your treatment so much. And I agree with you about the pred - can't live with it can't live without it. It seems for some of us its the only thing that works although I'm still hopeful I can get off it this time..............fingers crossed.
No worries doll- it's hard to convey the proper tone sometimes on the internet so I play it safe and always assume the best. :)

Back then the treatment was pretty much much the same: Prednisone and Azulfadine. AZA, Imuran, Methotrexate, Cimzia, other biologics etc, none of those were being used for IBD in 1986. It was pretty much grab your ankles and enjoy the ride. If I cannot get off the Pred this time without flaring up again, I will most likely go to Humira. Problem is my insurance sucks. Without insurance the drugstore would charge me about $2700 per shot, and WITH my insurance it's $2000. Gee, thanks. :stinks:

But I think this time I can get off it. I'm only on 5mg per day and I haven't experienced any pain. Then again, in August I got completely off it before experiencing pain. It does seem to feel better now for some reason so hoping it continues.
 

annawato

Moderator
Staff member
I am so thankful that the cost of most medications is covered by our government. We only have to pay $34 for each script and when you've spent (I think) $3000 the cost goes down to about $6 a script. $2000 with insurance is just awful. It basically means most people couldn't afford biologics. I'm hoping the Aza works for you so you don't have to fork out that sort of money.
 
I am so thankful that the cost of most medications is covered by our government. We only have to pay $34 for each script and when you've spent (I think) $3000 the cost goes down to about $6 a script. $2000 with insurance is just awful. It basically means most people couldn't afford biologics. I'm hoping the Aza works for you so you don't have to fork out that sort of money.

Well, that's what happens when you have awful insurance. If I change jobs I will have better insurance. There's pluses and minuses for different systems but regardless of who pays, the cost of medicine is way too high everywhere. I could go on, but it's the new year and I'd like to start if off by being in a good mood so I won't. :)
 
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annawato

Moderator
Staff member
Yes, I think we have higher taxes than you.........
But enough about that.
Happy New Year! :cheers:
 
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