1. < Digestive Health

Living with IBS-D

Posted by rr1967 @rr1967, Jun 27 2:22pm

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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jenniebrady | @jenniebrady | Jun 28 10:37am

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?

REPLY
1 reply
rr1967 | @rr1967 | Jul 2 10:46am
In reply to @jenniebrady "Hi. I've been through multiple bouts and long-term C. diff, too, and have even had two..." + (show)
@jenniebrady

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?

Jump to this post

Hi Jennie,
Thank you for replying. I have not yet tried Fidaxomicin, but I will ask my gastro about it...thanks! My gastro doc strongly feels that my bouts of diarrhea is a result of my IBS-D.

I do probiotics every day. I have noticed that my digestive system has become very sensitive to most foods. If I go on a very bland diet, I am fine, but if start to have a bit of fun with food,, then the colon gets angry.

Thank you!
RR1967

REPLY
1 reply
jenniebrady | @jenniebrady | Jul 2 12:04pm
In reply to @rr1967 "Hi Jennie, Thank you for replying. I have not yet tried Fidaxomicin, but I will ask..." + (show)
@rr1967

Hi Jennie,
Thank you for replying. I have not yet tried Fidaxomicin, but I will ask my gastro about it...thanks! My gastro doc strongly feels that my bouts of diarrhea is a result of my IBS-D.

I do probiotics every day. I have noticed that my digestive system has become very sensitive to most foods. If I go on a very bland diet, I am fine, but if start to have a bit of fun with food,, then the colon gets angry.

Thank you!
RR1967

Jump to this post

I know how un-fun it is not to be able to enjoy food like you want. Dificid is more expensive than the other antibiotics for C. diff, but it was my answer. If the others work for you, that's great.

I wish you all the best in your quest for more flexibility with your food choices - I went from being a gluten-free vegan to not being able to eat any fresh fruits and veggies (only canned) and only white, processed, soft food that was fattening - all the things counterintuitive to my eating preferences, and I did that for six years - so not fun! Things are better today following surgery in 2020 - all good now, thankfully.

Jennie

REPLY
1 reply
gussie | @gussie | Jul 3 8:13pm

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.

REPLY
1 reply
rr1967 | @rr1967 | Jul 8 10:13am
In reply to @jenniebrady "I know how un-fun it is not to be able to enjoy food like you want...." + (show)
@jenniebrady

I know how un-fun it is not to be able to enjoy food like you want. Dificid is more expensive than the other antibiotics for C. diff, but it was my answer. If the others work for you, that's great.

I wish you all the best in your quest for more flexibility with your food choices - I went from being a gluten-free vegan to not being able to eat any fresh fruits and veggies (only canned) and only white, processed, soft food that was fattening - all the things counterintuitive to my eating preferences, and I did that for six years - so not fun! Things are better today following surgery in 2020 - all good now, thankfully.

Jennie

Jump to this post

Hi Jennie,
Thank you for following up and sorry for the delay.
I am meeting with my primary soon and will ask to get a second opinion about my IBS-D. My main gastro doc, who has a great personality and is very patient with me, will not offer me the FMT option. He states that my blood work and my recent colonoscopy were all normal.

To get a referral for the FMT, I have to have a recurring bout of CDIFF infection which I have not had. He said that the only person in our state doing the procedure will not take a new patient unless the CDIFF infection was causing severe symptoms; which I do not have. I simply have many bowel movements during the day and/or evening and they are mostly normal. It is a very frustrating existence.

My bowel movements are mostly in the morning and by the afternoon they really calm down and I may have one movement after 1pm or in the evening.

The LevBid medication does slow my colon down, but if I am not careful with my food (I wasn't over the the July 4 holiday) I still suffer. Going back to a bland diet is my only option now with the exception of one "fun" meal a week.

I have read in previous posts about IBS D that some people will have 5-7 bowel movements or more per day and still test healthy and their on medication for it!

I have had a tough time with my weight. While I am in the normal range for a guy my age and height, I do look thin and my doctors are like " You are at your target weight and that is good for your body." Even if I eat more, I will have more bowel movements!
So frustrating and maddening.
Thank you!
RR1967

Thank you!

REPLY
rr1967 | @rr1967 | Jul 8 10:15am
In reply to @gussie "I have had IBS-D for over 40 years. I have lived with it as I've had..." + (show)
@gussie

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.

Jump to this post

Hello Gussie,
I wish you a full recovery with your latest round of IBS issues.
By the way, Vibrezi has some scary side effects from what my Gastro has told me.
If I may ask, as you suffered with IBS-D, how many bowel movements did you have each day? Did it cause you to lose weight?
Thank you!
RR1967

REPLY
gussie | @gussie | Jul 8 10:34am

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.

REPLY
rr1967 | @rr1967 | Jul 14 12:15pm

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

REPLY
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