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How do you manage daily life with IBS-D?

Digestive Health | Last Active: Sep 24 1:12pm | Replies (242)

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Hello everyone. I posted in this forum some time ago about my IBS D issues and I am needing some support again from you, amazing people. Below is my very long post and my apologies for it.

I have had mild IBS -D for many years, but in 2022, I came down with another case of diverticulitis. In the past, they gave me Flagyll and Cipro to deal with it and I was able to fully recover in a week. In 2022, the doctor gave me Augmentin which has lead to suffering since then. The Augmentin cured my diverticulitis quickly, but then I developed CDIFF from it and was I having diarrhea five to seven times a day. In the span of about a month, I lost over 15 pounds due to the diarrhea, but again, all my blood work and tests came back normal.
After two more trips to the ER and Urgent care they put me on two rounds of Vancomyacin that finally slowed the diarrhea. I had to go back to the ER a couple of more times for a few very rough days of diarrhea, but every blood test came back normal.
I saw a wonderful gastro specialist who did a bunch of new blood work and stool tests. I still test positive for CDIFF, but I do not have an active infection. Which basically means that I now a formal carrier of CDIFF.

I did have two fecal calprotectin tests done in the past two years and a couple of inflammation marker tests...all perfectly normal.

The CDIFF infection, according to my gastro doc (who by the way, I do trust and has been VERY helpful) has put me in permanent IBS D.
I had a colonoscopy a few months ago and all was normal.

A bit about me:
1. 56 year old male, blood pressure fine but I do take two meds for it and I am borderline type 2 diabetic.
2. Weight is on point, but the IBS D has made me lose more weight given the frequent toilet visits during my flare ups. According to my doc, I am at my ideal weight but I do look thin.
3. I am a lifelong vegetarian, but I have become vegan for the most part. The only dairy I have in my diet is lactose free, low fat yogurt.
4. My diet is as follows:
Breakfast: Oatmeal or Cheerios, Banana, Unsweetened Ripple Pea Milk.
Lunch: Fresh spinach, carrots, blueberries, with a peanut butter and unsweetened jelly, low fat lactose free yogurt.
Dinner: Usually air fryer potatoes with veggie meatballs or I stir fry some veggies with tofu.

I am not gluten sensitive, but it may be developing it...I am not sure. However, given my near vegan diet, I buy a high protien, low carb, no sugar, sprouted whole grain bread that my body seems to tolerate.

Alcohol: Maybe one glass of wine or a one or two beers a week. I know that alcohol is a IBS D trigger.

I am trying to reduce my sugar intake, but I love dark chocolate and I now that sugar/chocolate is an IBS trigger.

My wife and I do go out eat at least once a week to give me break from the boring bland diet. I know I cannot do fried food anymore and I have to watch what dairy is in my restaurant meal. I have also read that spicy food ( that I love) will make IBS D worse...really?

5. I do suffer from chronic anxiety, depression, and PTSD from a very abusive childhood. I take Remeron for my depression and it really has helped. When I get an anxiety flare, a small dose of Clonazepam does the trick.
6. My gastro doc finally put me on LevBid Extended Release twice a day to hopefully reduce my bowel movements. I also take one tablet of Citrucel (fiber) every day to help bulk up my stools.

I can have as little as three bowel movements a day to up to seven a day during a flare up Usually the first bowel movement in the morning is perfect, but then during the day, I can have a mix of normal and diarrhea. M bowel movement usually cease about 1pm and once in awhile, I can one or two late afternoon or in the evening.
I just started the two dose a day of Levbid. I do see some improvement, but I can have days where it does not work.
I have become very fearful of food and my wife thinks that I am simply not eating enough during the day.
I do not have much pain with my IBS..some twinges here and there. I might get a bit or nausea once in awhile, but it usually goes away fast.

Are you folks experiencing something similar or worse?
Thank you for reading and your support!
RR1967

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Replies to "Hello everyone. I posted in this forum some time ago about my IBS D issues and..."

Hi. I've been through multiple bouts and long-term C. diff, too, and have even had two fecal transplants, which combined with Fidaxomicin (Dificid) finally resolved my C-diff. Mine was caused by exposure to C-diff in the hospital while I was taking Humira for Lupus, which lowered my immune system to lessen lupus attacks on my body and resulted in my inability to overcome the C-diff toxin. Although I was put on vancomycin many times, it did not work for me, but Dificid did. Have you tried that? I also can no longer take immunosuppressive medications in the same class as Humira because this could trigger it again.

Also, I understand about 1 in 30 healthy adults may have C. diff in their digestive system. However, the bacteria can live harmlessly because other bacteria in the bowel keep it under control. Have you tried pro/prebiotics to add healthy strains of bacteria?

Does your GI feel your continued diarrhea is a result of c.diff or is it a form of inflammatory bowel disease?

I have had IBS-D for over 40 years. I have lived with it as I've had good and bad days and weeks. I gave up gluten 13 years ago and that helped. Not dramatically but enough. I am now still a very active 82 year old and in the last year it has gotten much worse. I've lost 6 lbs. in a month, I have been 133 for the last twenty years and everything I eat just goes right through me. I just got the results of my endoscopy, which showed a lot of inflammation. My gastro said except maybe for a lot of acid, everything looked normal. She wants me to try Viberzi but medicare doesn't cover it and it's very expensive. She is ordering an acid blocker.

When it was bad, I could go ten times or more a day. Cutting out gluten helped a lot until a few months ago. Then it got so bad that I would eat then have to run to the toilet. I finally had a colonoscopy and endoscopy last month. Colon was perfect but inflammation all over my upper GI. Gastro took biopsies and I just got the results. Everything was negative so she said it's my IBS-D. I started taking Bentyl and an acid reducer before my meals and it seems to be helping. I used to take them after I had pain instead of before meals.

Thank you Gussie for sharing this and I again, I wish you healing and happiness.
RR1967