Present Problems with Short Bowel Syndrome

[To Dream a Dream]

Sorry to have been unable to post much lately, but I have checked in as much as possible to keep in touch with you all. As many know, I am an 'old-timer' since 1977 (original ostomy surgery) with two prior extensive bowel resections for Crohn's disease leaving me with a much shortened GI tract. My transit time for a barium swallow is under ten minutes & it is 'in the bag' literally. With heartfelt thanks to the Lord & many many people who have helped & encouraged me over these years, I consider myself to have been especially blessed.
However, I have felt myself slowly losing ground as have many aging folks with chronic conditions during this Covid-19 interval, & had to seek out medical attention last week when I could no longer function effectively.
My GI provider put me on Imodium twice a day. A diet severely limiting the types of liquids consumed (no sports drinks, juices or even water that has not been diluted/adjusted). I am currently recording all ostomy output & urine. And even for someone with a lifetime of experience with dealing with dehydration issues, it has been a challenge. I not only had an increase in ostomy output, but also in urine often to the point of incontinency.
Hopefully, I will learn of my lab results soon. I have discomfort up under my ribs on my right side that continues inside along my spine almost to my shoulder blade. I did notice that the Imodium AD soft gels I had been taking contain an inactive ingredient: hydrogenated castor oil. Is anyone familiar with possible problems with that?
Thanks for bearing with this. I'd much rather be relating my moonlight garden's progress this year. (By the way, the iris & peonies have been lovely.) Chatting about the hummers & orioles. Butterflies, etc. But do appreciate being able to reach out to you.

[Diane C]

So sorry to hear of the recent physical issues, To Dream. I don't have Short Bowel Syndrome but hope someone with it will post soon. You know that my output is rather fast and furious, too. I submitted a sample of stool for testing. So far 4 tests are normal but 2 are pending related to "fat." My very good GI doctor has recommended frequent small meals which requires much behavior change. I get immersed in something and don't mean to "fast" but... I've been much better with hydration, esp tea without caffeine. But it seems you are more than hydrated. Before my March surgery to get rid of the urogyn infection (which was never found -- scar tissue obscured the view and surgeons gave me a hysterectomy, seemed to have removed the source of the infection, chipped away at scar tissue and repaired my small intestine where adhesions were causing problems) I was constantly peeing. It's finally seemed to resolve but I sympathize. Maybe check with a urogyn physician?

And... odd that we both have pain in the rib issue. I had xrays and tomorrow night get a CT-scan. Fluid was found around my left lung but when I went to get it aspirated, my body had absorbed it. Nine days later, it was back on the right side and it hurts quite a bit to bend. Another x-ray confirmed a small amount of fluid. This can be caused by MANY things (Dr. Google can be frightening so wait for experts) and I'm hoping I only have an infection that can be cured by a(nother) antibiotic. I'd like to have 2 years of no health issues to learn to deal better with my 2018 ileostomy (leakage is better). I will check Imodium and the generics. Had no idea re the castor oil but hate the taste of the gel caps so try to avoid those and no, that oil would not seem beneficial if one has much output. I'm taking tablets now as the fluid goes through me -- and the gel caps burned. MY GI doctor warned me against coconut oil and others. Hmmm. Thanks for the tip! When I find out about the fluid around my lungs -- and it can cause stabbing pain up to my shoulder -- I will report back. Maybe your internist can arrange a chest xray? Or check with a pulmonologist which I did last week. I've had very moderate, exercise-induced asthma for years but did catch pneumonia despite the vaccine and bronchitis in two recent summers. Just a suggestion but start with your internist.

Hoping you improve!

[To Dream a Dream]

Thanks, Diane. I put in a call to GI on Friday & hope they will be getting back to me today. I have been experiencing what appears to be fluid retention in my lower legs & possibly my abdomen for quite awhile, but have chalked it up to aging. With my husband's surgeries last year & now this pandemic, my own health has had to be put on the back burner. And many of our appointments were cancelled & finally rescheduled due to the virus. I'm hoping it can be resolved without much fuss. I'm afraid I have not kept up much with the newer medical protocols unfortunately & am uncertain about whom I should call. Whom they will consult with automatically (do doctors still engage in active consultation or is that a thing of the past?) I hesitate to push especially during these stressful times lest I irritate someone.
Thanks again for answering me. It helps to know you are out there.

[Living0718]

To Dream a Dream. Hello, this is my first time on this forum or even reaching out to others with an ostomy. Thank you so much for sharing your story, troubles and the pain you have gone through. I am very sorry to hear of your recent troubles. It ,made me cry to read your story. I am a 35 year old woman, and I have had my ostomy for almost 10 years now. While reading your story on your troubles with short bowel syndrome I realized that I am not alone! I have had more surgeries than I can remember. I have had the full large bowel removed and basically all of the small. I too have struggled non stop it seems with dehydration. I have been going through all of the stomach tests that are out there because I am having issues again. I was originally diagnosed with colonic inertia. Basically my bowel just did not work. Last year I underwent a revision and a repair to a stoma prolapse. Now any solid food is taking a whole day and sometimes more to move through. Liquid goes so fast before I even think about it. The drs. Were at first thinking my actual stomach itself is slowing down like the bowels did. They really are not sure. Or it could be what's left of the small slowing down. All I know is I have horrendous pain and feel bloated. I have a scope this morning into stomach to look around. I wil end for now. I am sorry that I gave part of my story and troubles on your post. I have NEVER in 10 years talked to anyone or reached out about the things I have been through. Seeing your post, gave me the courage to reach out. Thank you for your strength and courage to make this forum and share! I'm glad I found it.

Thank you again, and take care!

[To Dream a Dream]

Welcome to our Discussion Board & many thanks for your kind words. You'll find much info here from people who readily share their challenges & success stories, too. Are you familiar with the UOAA website? It is first rate & easy to access. Here is a link: https://www.ostomy.org/
If you click on it, you'll be at their home page & the stack of little horizontal lines in the upper righthand corner will open up a world of possibilities including topics such as their Latest News section, Diet & Nutrition, Advocacy . . . the list goes on & on. Lots & lots of useful tips & personal stories to let you know: You Are Not Alone. Hope to see you posting often.