A Women's RV Forum run by Women RVer's!

I had my gall bladder removed in the mid-90s. As with many people after such surgery, I had major problems with diarrhea. It took ten years for me to be able to eat lettuce, for example. Basically, after you lose your gall bladder, your pancreas constantly drips bile into your small intestine, irritating it and causing diarrhea. My way of handling it was to eat very small meals all day and eat very slowly. In other words, if I wanted a small steak, baked potato, and vegetable for dinner, I would eat the piece of steak about 4 pm, then the potato around 6 pm and my vegetable late in the evening. Restaurants were a real problem, so I took a lot of food home with me! I never ate breakfast or even lunch on days when I had a job interview or an important business meeting with clients, etc. Ditto on flying on a plane or going other places.

However, for the past year I have been taking a prescription drug called Welchol. It is FDA approved as a non-statin treatment for high cholesterol. However, last year my new gastroenterologist prescribed it to me "off-label" for the problems I have been having for the past 25 years. The prescription says to take 6 pills a day, but my gastro said to start with one per day and adjust it as needed, and to be careful because it can cause constipation. I have ended up taking one pill every 2-3 days, and the result has been amazing! Instead of 2-3 bathroom trips after eating anything and going without meals when I am in places without bathrooms, I am now living like a normal person. I still eat smaller meals and eat slowly, but I do not have to worry every time I go somewhere out to eat.

Basically, the drug reduces the amount of bile in your small intestine. This helps reduce cholesterol, but in my case, it keeps my system from being constantly irritated. The bad news is that I now have to be more careful about gaining weight! And I also have to be careful not to take it too often.

Anyway, this is an amazing change for me, and I decided to share it with you. There has been recent research on this use, and FDA, is considering approving it for post-gall bladder surgery problems once they get enough evidence of it working and not causing harm. Check it out on medical sites on the internet or ask your doctor about it.

Glad you finally found a solution that works!

Thanks for this information. I have to make an appointment with a dr. about possibly removing my gall bladder.

Very interesting. My gallbladder was removed in my 20's and luckily no side effects. I'm glad you've found a solution.

Bile is produced in the liver, not the pancreas. Bile ducts are capable of dilating to compensate for the missing gall bladder. Bile is produced when fat is ingested and serves to help digest fat. Ox bile supplement has solved post Cholecystectomy patients, until their body adjusts. Judy did you ever try ox bile?
Velda

I was aware that some individuals have difficulties processing different foods following the removal of their Gallbladder. One of our Secretaries was not able to eat salads following her operations. But as Beth reported her personal experience, fortunately not everyone has such difficulties. Judy, I can't imagine having to plan your life around what and when you can eat.....for 25 years.... I had also wondered about your frequent comments about your travel and touring adventures when you would offhandedly mention that you hadn't eaten anything all day.... It is a wonderful thing for you to have found a solution to your very disruptive issues. And for all the painful weeks I went through back in November of 2020 and early 2021, which included about 5 weeks of "eating" nutriments through a nasal tube that bypassed my stomach, I will always be appreciative that once my stomach decided that it would start processing food again that is didn't discriminate what it was processing...though I think my body did decide that it only wants some carbs in moderation.

Anyway, so happy that your doctor found something that worked for you.

I think that's the medicine my sister use to take. She swore by it. I don't think she still has a diarrhea problem.

Martha

Tina, I never said much about it, but when I traveled to the UK, I stayed in B&Bs but seldom ate breakfast provided unless I knew there would be bathrooms handy. And I controlled what I did eat. Mostly, I delayed lunch until about 2 pm, and then it was something small like a sweet roll and small drink. I did eat dinner because I could go to my room. On my 2018 trip, I lost 20 pounds in 6 weeks. The last trip I lost 13 pounds, but part of that was probably my food poisoning. I also always lost weight visiting my aunt before she had dementia because she got so insulted if I did not eat all she had cooked.

One day in Stratford-on-Avon on my 2018 trip, I was out sightseeing and had eaten something. I got lost and knew i was in serious trouble and could not make it back to my hotel. Could not find a public toilet, so I raced into the nearest store, which was a resale shop and told the lady I needed a toilet FAST! Smart lady raced me upstairs to staff bathroom--I was eternally grateful but she was gone when i was done so no way to give her money or anything. I had other instances, so I carried a lot of Imodium. Once had to ask a doubledecker tour bus to stop and drop me off at a McDonalds immediately, so missed out on part of tour.

Do you know Katy Tur, the CNN reporter who followed Trump around for his 2016 campaign? She has written about her IBS and driving a van and carrying changes of clothing and a portapotty in her van. She also had to occasionally wear depends to events. I thought what I had was IBS until this recent gastroenterologist said it was really a post-gallbladder surgery issue, even if it had been 25 years. My son had his gallbladder removed 5 years ago and has had some problems, but nothing like mine.

People in the office when I worked at Ford started to notice that I was constantly running to the bathroom also, which was embarrassing. Retiring and buying a motorhome made life a lot easier. Fat is one of the foods that causes bile to dump into your intestines, so fatty foods do cause problems, but I found it was also the volume of food that caused problems. And of course certain things like salads were impossible for several years. Even now, if I go into a McDonalds, for instance, I can eat a sandwich, but fries or anything else on top of it are impossible.

I am still having to experiment and balance when to take a Welchol pill and when not to take one because it can cause constipation, but it is still a LOT better than 15-20 trips to the bathroom some days!! (I am not exaggerating!) And if you ever have lunch with me, you know I still eat very slowly and take extra food home to eat a few hours later.

Anyway, this drug has really changed my life.

after my surgery which was a lot a years ago I would occasionally have to make one trip to the bathroom after eating out about 15 mins later never could figure out the cause and haven't had it happen for a long time... so glad that you have found an answer to the problem... my sister in law had to really watch what she ate for a period of time not sure if it was an always or just a few years...
sheila

Judy - Thank you, thank you, for probably clearing up an almost lifetime problem! I had galI bladder surgery in the 80's and often had a diarrhea problem and often after eating. It would come with very little warning at times and I never knew when it would hit, so I understand exactly what your experience was like. Five years ago I wound up in the hospital for 11 days because my body actually shut down absorbing nourishment. Everything, even water, went straight through me and I got weaker and weaker. My son got me to the ER. I had virtually no potassium or other important nutrients and was severely dehydrated when they tested me. I spent 3 days and nights in ER and another 8 in a room with a pot beside my bed and hooked up to IV's etc. The nurses were ordered to collect all my stools and measure the volume plus whatever else they were checking for. I had 3 gastro doctors from my medical clinic and the hospital's head gastro doc on my case and none of them could find an explanation for the problem. Everyone just called it some sort of IBS.

It took a high school student, a candy striper girl, to discover that all my meds went straight through me and into the portable potty! Including the potassium, BP, everything came out totally whole. I didn't absorb anything! So much for the nurses checking the pot and weighing, etc. They just made the kid do the dirty parts of their job! The hospital gave me just about every test they had including a full body scan, head scan, etc.(for diarrhea???)! Seemed to me that while they had a case that couldn't be diagnosed, they could get Medicare and insurance to fund any and all tests! Because I had so many doctors, I couldn't even discover who had ordered each test and the nurses were mum about it.

After everything quieted down a bit, (and they ran out of tests to do) I was released and my clinic sent me for a consult at UCLA Medical Center. The very nice gastro doc assigned to me said he wanted to try an out of the box solution. He prescribed a powder that is used for cholesterol control. A side effect seemed to be constipation. He taught me how to mess around with the dosage and it worked! I never had to take a full dose (usually half each morning in orange juice). I was careful not to take enough to give me constipation. Guess you know I have kept a half dozen packets of this stuff on hand just in case! I realize no one else has probably had this happen, but for what it's worth the powder was called Prevalite.

Evie

Thank you Judy and Evie for posting about your problems, and the eventual solutions.

Lucky for me, I have never had any gall bladder problems (knock wood!), but I most sincerely appreciate both of you posting.

One never knows who you might help, now or in future.

These "help"/this is what happened to me postings are one of the things (among many!) that I love about this forum.

Anne

Evie, I wonder if that is the same as Questran they gave my Mom for same issues post gall bladder, back around 1989. Helped her, but, at the time I didn't know as much as I do today. I don't think Drs, specifically surgeons, understand the damage they did. They took out the gall bladders of every woman fair, fat, amd 40 who had right upper quadrant pain, even if there were no large stones blocking a duct. It's a very lucrative procedure for hospitals and surgeons. I had that typical pain for a while after my father died and I had to care for my Mom. But I figured out it wasn't fat causing the issues, I was having as Drs tried to insist. My Dr tried to send me to a surgeon, even though my ultrasound showed no stones, just sludge. I fired him and got a better Dr. She said she would never send me to a surgeon without actually determining the problem and sent me to a gastroenterologist friend , who said same thing. Then one day, literally, I came to terms via prayer, with being thrust into the position as caregiver for my Mom (am an only child and Dad died suddenly after giving only vague hints of Moms issues he had been covering for). The pain literally stopped that day, after I felt that answer, and never returned. My liver enzymes had been so high, the gastro Dr thought I had some exotic liver parasite or disease caught during my Navy days. A few days after my sudden feeling of quiet in my spirit, and the ceasing of pain, Dr has liver enzymes drawn again and they were back to essentially zero or baseline from numbers in the thousands! It baffled the gastro Dr and he had me keep a lab slip in my purse and told me to go straight to ER immediately if pain recurred and have them get blood work and ultrasound. In the 30+ years since, I've never had even a hint of the pain.
That said, I'm in groups with people starting the Keto/low carb/carnivore high fat diet, who have had previous gall bladder surgery and are fearful of issues. With suggestions of a few supplememts including ox bile, they go on to do well eating.
Velda

I looked up Prevalite and the generic is Cholestyramine. The generic for Welchol is colesevelam. Interestingly, both are primarily used to lower cholesterol, so I suspect that they are very similar drugs. My gastroenterologist originally ordered the Welchol powder for me, but I hated taking it with water or juice because it tasted awful, so he switched me to the pills. The funny thing is that he had to give me a 90 day prescription, which consisted of 540 pills, so since I take only one every 2-3 days, I figure I have a two-year supply!!

My first real gall bladder attack came when I was on a business trip. I was teaching a two-day technical writing class for one of our offices in North Carolina. I was fine the day I arrived. My hotel was right next to a Red Lobster, so I went over and had their special for the day, langostinos in a garlic butter sauce with a lobster tail thrown in. I had had some minor abdominal pain a few times previously, but just ignored it, so I did not know that this buttery combination was the worst thing I could have. I started to get serious pain in the middle of the night and never slept at all. Luckily, because of my kidney stones, I had several pain pills with me containing codeine, so i dosed myself about 4 am. I was bent over with agony, but I had to be at the office at 7 am to get setup for the all-day class I was teaching alone. (I had 20 students, some of whom had flown in for the class, so no skipping it or calling in sick.) Made it there and with another couple of pain meds during the day, I managed to teach the class. Next day was a lot easier because I had eaten a lighter dinner the night before, so less pain. No time to go to urgent care or an emergency room because I had to fly home at the end of the second day, but i did go to my doctor right away at home.

Had a couple of smaller attacks in the following days, but asked my doctor to schedule my surgery ASAP, which he did. I did not want to travel again for business until I got the problem solved, and i usually had something scheduled every month.

The funny thing is that I had figured the previous mild abdominal pain I had had in the weeks and months before this serious attack was indigestion or maybe an ulcer, so I drank milk then, which was also not the right thing to do, but I never expected my gall bladder.

One nice thing about these off-label drugs is that they address the cause of the problem instead of just the symptoms as happens most of the time. I had years of having doctors just suggesting I probably had IBS and should take Imodium, which does control the diarrhea, but doesn't address the cause of the bowel being irritated. My invented cure of small meals all day probably helped by absorbing the extra bile and pancreatic juices, which is why that worked somewhat.

New gastroenterologist did say I could continue to take Imodium if I needed it. I used to always carry Imodium in my pants or shorts pockets and several more in my purse. I still carry it in my purse, but I don't take it very often and I don't worry about always having a supply with me.

Judy - happy to hear your problem is under control. I'm doing pretty well, too. Fortunately, the Prevalite didn't taste bad (orange flavoed put in orange juice was fine). Too bad someone hadn't told us there would be problems down the road! I was actually told that there was no problem living without a gall bladder. They likened it to appendix, which I also had removed earlier because they thought the pain was that. Also went through the "you must have ulcers" and all the other things the first 4 or 5 doctors told me. Final doctor was appalled that not one of them ordered a gall bladder test.

Velda - My case wasn't one of medical community wanting to do procedures that weren't needed. My gall bladder was so full of stones that the dye couldn't even get in!

Evie