Seeking Advice: Dealing with Post-Obstruction Diarrhea

In this discussion
Replies
4
Views
1366
salidachristine

Hello mates.

I hope someone can help me by sharing their experience?

I've had my lifesaving ileostomy for 40 years and experienced my first and hopefully last bowel obstruction in December. Everything happened so fast before I called 911 to transport me to the hospital. At the ER, they inserted a NG tube to decompress my abdomen and I did not need surgery but was hospitalized for 3 days. Unfortunately, since the obstruction, I've had periods of fulminant diarrhea which has left me staying home more than I like.

I have gone to the doctors several times in the last 3 months. My primary has done all the tests for bacteria in my stool. All stool tests are negative and blood work has only slight elevations, so it's difficult to find the reason I have diarrhea. The doctors have started me on cholestyramine which bulks the stool but can also cause another obstruction, so I just take it twice a day. The medicine helps but does not deal with the issue of why I'm experiencing diarrhea, so it's a band-aid fix and not the cure.

I was on Flagyl for 2 weeks and the problem resolved, and then it came back. Very frustrating that antibiotic treatment got me to normal, but the providers do not order antibiotics or even probiotics? I ingest pill form of probiotic from Whole Foods and also a liquid drink that has probiotics.

The latest diagnosis that seemed possible was a condition called small intestine bacterial overgrowth (SIBO). Has anyone had this disease process?

I had an EGD done this week and have mild gastric reflux and a small hiatal hernia, so nothing that explains the diarrhea. I'm waiting for the biopsy results done in the esophagus, stomach, and areas of my duodenum. Maybe the biopsies will show what's going on?

The doctor said to me this week that I may have to live with this the rest of my life. This is unbelievable to me to have watery stool which causes dehydration and fatigue for the rest of my life! It's quite depressing, and I now have a better sense of chronic illness. My ileostomy has made me normal and gave me my life back, but this diarrhea is overwhelming.

Hopefully someone has experienced a bowel obstruction with post-diarrhea and can help me figure this out.

Thanks,

Christine

Gray Logo for MeetAnOstoMate

Why Join MeetAnOstoMate?

First off, this is a pretty cool site with 33,095 members. Get inside and you will see.

We're not all about ostomy. Everything is being discussed in the forums.

It's a very special community, embracing all ages and backgrounds. People are honest and truly care.

Privacy is very important - the website has many features that are only visible to members.

Create an account and you will be amazed.

Earth Angel

Hi Christine,

I am so sorry to hear of your struggles. This could be a shot in the dark, but have you considered a diet change such as a plant-based, gluten and dairy-free diet? I know it sounds severe; however, it's quite easy with some practice. We are prone to food intolerances and sensitivities at any time in our lives. I'm not saying that is the issue, but it's easy enough to try eliminating foods that can cause issues. Forks Over Knives is a great documentary to watch and educate yourself about a plant-based diet. It doesn't hurt and won't cost you tons of money, so worth a try. Many doctors are so fixed on prescribing medications without fixing the actual problem. I had fibromyalgia after my cancer diagnosis, and with a vegan diet followed (most of the time), I have no pain. Like I said, it is just a suggestion and won't hurt to try. You should know after three weeks if it helps. After that, try adding dairy, gluten, etc. back into the diet, and if it's an issue, you'll know quickly! I hope you can find some relief and get your life back to normal. Please let me know if I can help in any way. Take care!

Gray Logo for MeetAnOstoMate
w30bob

Hi Christine,

Maybe I'm missing something here, but why are they focusing on a bacterial cause and not inflammation? You didn't say why you had the ileostomy, but your description sounded eerily similar to my getting Crohn's disease back a million years ago. Everything was good on Monday and on Tuesday all hell broke loose. Did they scope your stoma and small bowel and take biopsies? I mean, what did they do for the 3 days you were in the hospital? Bloodwork never tells the story with Crohn's, and even the CRP marker for inflammation can be for any inflammation, not just specific to the gut. You need a bowel wall biopsy to know what's going on. If it were me, I'd want them to scope my small bowel, take biopsies, and find out exactly what the heck is going on.

Don't do this... but if I were home, far from a good Gastro... and had your symptoms... I'd pop a few of those cute little white prednisone pills... 15 or 20 mg should do it. If the diarrhea goes away... it's not bacterial, it's inflammation... because Prednisone is a steroid and won't kill bacteria. If nothing changes... think bacterial, among other things. Remember... I DID NOT tell you to do that, I'm being hypothetical... sort of. Wink, wink, nod, nod.

Regards,

Bob

salidachristine

Thanks, Bob.

Good points. I was focusing on bacterial infection because the Flagyl helped, and I was also having chills and nausea. But the chills are gone, and I just have the nausea and constant diarrhea if I don't take the medicine that turns my stool into cement...very gritty stuff. Yes, I had the inflammation markers done, which were negative. nbsp

I've had my ileostomy because of amebic infection following a trip to Mexico, and I was 27 years old, and now I'm 68. No Crohn's disease, but definitely inflammatory process. nbspThe doctors had said my case didn't differ much from the effects from Crohn's disease and the inflammatory process, but my large intestine was infected and not my small intestine. My ileum tested negative for inflammation at that time. nbsp

This week they did 2-3  biopsies of the small intestine, so I have to wait 2 weeks for the results. They are also saying because part of my terminal ileum was removed, which is the reason for diarrhea, which doesn't make sense because the terminal ileum was removed 40 years ago????

I don't understand how suddenly I cannot tolerate some foods if that is the case. I was tested for celiac disease and lactose intolerance. Changing my diet for 3 weeks may be a good plan. I'm hesitant to try prednisone because if it's bacterial, then it would make the infection worse. nbsp

Can they scope a stoma? I only had biopsies of the duodenum. SIBO can also just be in the jejunum.

Seems I'm having symptoms of small bowel malabsorption. You know what I mean when you eat something, and 20-30 minutes later it's through you and into your appliance! But it doesn't explain the huge amount of watery diarrhea I have at night? The nighttime diarrhea can wake me up 3 times, and I'm dehydrated when it's time to get out of bed in the morning! nbsp

For 3 days, they kept the NG tube in and just introduced clear liquids to full liquids. I think they kept me because I was on the brink of death with a low BP when coming into the hospital. The vomiting was horrid before the NG was inserted, and the stomach contents were black. YUK! nbsp

All these problems with diarrhea are new to me, so I hope I can find someone with a similar story? nbsp

salidachristine

Thanks Earth Angel.

I think you have a possible good solution and I needed to hear this viewpoint. I can't eat raw veggies and can't eat brown rice, but there are other options. I love gluten and milk, but can change if it means getting rid of this horrid watery diarrhea. And why does it occur at night? I've seen the ads for Forks over Knives and they even have cookbooks, I think. nbsp

I think I will start with a food diary and then take it from there. nbsp

 
Stories of Living Life to the Fullest from Ostomy Advocates I Hollister
All times are GMT - 5 Hours