Ileostomy Since Sept 2020 - Overactive Stoma and Diarrhea Concerns

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563
sunflowers
Jan 09, 2024 5:59 pm

Everything I eat, even protein drinks, comes out very quickly into my bag, like it's not being digested for the past 2 or 3 days. I take 4 mg loperamide three times a day. Maybe it's no longer working, and I need another medication like Lomotil or codeine or something else. I am currently sipping "Liquid I.V. - Hydration Multiplier" in an effort to ward off dehydration. Thank you so much for your response. Feeling scared, have an appointment with a new gastroenterologist on 1/16, next Tuesday. Don't want to do the ER thing if possible. Addendum: Every time I change my bag, there is some swelling around the abdominal area/stoma. I have to push around this area, and lots of 'mush' food comes pouring out.

Heppy8
Jan 09, 2024 6:04 pm

Could it be a partial blockage?

sunflowers
Jan 09, 2024 6:57 pm

Happy, thanks for responding! It could be a partial blockage. I had one about two and a half months ago. I was blessed when a surgical resident, knowing I'd been told in the past by another surgeon (a second opinion) not to have future surgeries since that experience was horrendous, came into the ER. The resident offered me surgery or his hand and a strong painkiller. He used his finger to enter my stoma and release the blockage and also put back into place the incarcerated parastomal hernia. I'll tell you about my horrendous ileostomy story back in 2020 another time. I will look up what to do with a partial blockage. I don't have cramps, pain, or nausea; I'm actually hungry. Thanks again for your support, and I'd be happy to have your friendship!

Posted by: iMacG5

About seven years ago, just about every aspect of my life was ostomy related. From the moment I was told an ostomy might be needed until some months down the road I existed as a person afflicted with a colostomy. I feared someone other than my immediate family might find out I had a bag. Ugh! What could be worse? Suppose it filled real fast when I was out with no place to hide and take care of myself. God forbid should it leak in church! Suppose I roll over on it in bed. I was a lesser creature, destined to a life of emotional anguish and physical routines different from most of the rest of the world. I felt like a freak. Then I found folks like you guys here, read your stuff, really “listened” to what you had to say and I began looking at things differently. We know perception is everything and I began to understand how good things were relative to what they could’ve been. So many folks had it so much worse than I did. That didn’t make my discomfort go away but it exposed how fortunate I was to be dealing with my stuff and not their’s. I felt a little guilt, maybe selfishness but quickly forgave myself by understanding I just wasn’t smart enough to fix my feelings. Then, I wonder what smarts have to do with feelings. My perception was warped so my perspective toward my existence was warped.
I learned over the last few years with the help of lots of folks right here at MAO that I could be better at living just by accepting some facts. It is what it is and so what? It’s not the worst thing to happen to a person.
I think everything is, in some way, related to everything else. I just put the ostomy thing in the back seat and drive forward.
Respectfully,
Mike

eefyjig
Jan 09, 2024 7:29 pm

Hi sunflowers, I agree it sounds like a partial blockage, especially if mush comes out when you press around your stoma. The liquid is the force behind the mush trying to get it out. If it's a blockage, try to move as much as you can. Sit in a chair and lean forward as far as you can while sucking your belly in as much as you can and then pushing it out the same; rotate side to side slowly; get on all fours and rock forward and back. These movements can really help. I'm glad you have no discomfort - that's a blessing!

w30bob
Jan 09, 2024 8:42 pm
Very helpful

Hi sunflowers,

If everything is transiting through you very quickly, I'm guessing you (obviously) don't have a blockage. Swelling of the stoma, or any part of your bowel, is inflammation. When the bowel wall is inflamed, it doesn't absorb very well, hence the fast transit time. There are a lot of reasons your bowels can be inflamed, and without going in and taking a peek or having recent bloodwork to look at, there's no sense speculating. As for motility meds losing effectiveness, I'm not aware that that's the case for Loperamide (Imodium) or Diphen-Atropine, which are the two I take. I haven't researched any others, but a quick Google search for "Does ________ lose effectiveness over time" will get you a quick answer for your specific motility meds. I'm sure your gastro can schedule an upper endoscopy or an ileoscopy (scoping through your stoma) very easily, as well as order bloodwork to see if you have any markers for internal inflammation. The squeaky wheel gets the grease, so when you see your doc, don't take no for an answer or let them schedule you weeks out. If you get nowhere fast, simply hit the ER and you'll move to the front of the line! Sorry I can't be of more help!

;O)

 

My Ostomy Journey: Kimberly | Hollister

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AlexT
Jan 09, 2024 10:33 pm
Very helpful

If you're going, you're not blocked. Straight protein drinks will go right through anyone usually. Pouring electrolyte drinks into your system if nothing else is there will make you go too as not much is being absorbed. If it were me, I'd try eating normal foods, drink various things, and see if things slow down before I did anything else.

C. Difficult
Jan 09, 2024 11:38 pm
Very helpful

Protein shakes won't make you full or gain weight. Because we lack a large intestine, our bodies cannot absorb a lot of the nutrients it needs. I've finally found a solution after 1.5 years. My gastroenterologist said I needed to supplement my diet with protein shakes containing complex carbohydrates.

And HOLY COW! I finally had normal output. Very rarely do I have to take loperamide. I have finally gained back the weight I lost 2 years ago when I had my surgery. In three months, I went from 102 lbs to 131 lbs. I feel healthy. I will post a photo of the mass gainer I use. It's called HULK Clean Mass Gainer by Perfect Sport. I have two a day in the blender with milk, yogurt, and some frozen fruit. The carbs will thicken your output and allow your body to absorb more nutrients.

Also, add extra salt to your food. The body needs salt to absorb liquids, and people with ileostomies usually lack sodium.

I hope this helps.

AlexT
Jan 10, 2024 1:16 am

Gotta have carbs to make things stick. 👍

kittybou
Jan 10, 2024 1:26 am

I found the weight you lost. Would you like it back? 😻😸😹