Those with Postcholecystectomy Syndrome - Coping, Eating, Vitamins, Etc?
May 7, 2014 11:06 AM   Subscribe

I'm likely to have my gallbladder removed in upcoming months, and I have a few questions for those who ended up with a temporary or longer-lasting intolerance to fatty foods. (And I wonder if any of you ever had it improve your digestion -- excluding the no-doubt wonderful absence of attacks?)

I had a mild attack in late March; an ultrasound showed stones and a contracted gallbladder. I meet with a surgeon later this month. I'd be surprised if a removal doesn't follow.

First, reality check: I'm wondering if anyone ever had a removal improve their digestion. The contracted gallbladder, combined with an occasionally rough stomach, makes me wonder if it's been functioning at all. (I know the answer lies in a HIDA scan, but my primary says the surgeon can order one if he wants it.) If the gallbladder's been nonfunctional, I wonder if once it's out of the piping, if I'll start digesting better if my liver and common bile duct starts taking over the job.

But. I understand some people never regain a tolerance for fat, and that others have found their body's ability to tolerate fat suddenly disappears months or years after the procedure.

Obviously, that idea freaks me the hell out. I know it only happens to about 10-15% of those who have the surgery, as far as I can tell. I'd like to ask a few questions of those who had that happen to them:

First, can you just kind of convince me that there's life after such a development? I'm blowing it up to nightmare proportions in my head, mostly from horror stories on the Internet (cf. availability heuristic, misleading vividness), while simultaneously being embarrassed that I'm doing so when others have it far worse. But nonetheless, I'm kind of hoping that some of you can tell me you figured out ways to adapt and make your lives fairly normal even if that happened to you.

Second, did cholestryamine (Questran) or colesevelam (Welchol) let you eat normal food and have normal movements? (And as a side note, does anyone know if either of those are affordable if you were to become uninsured? My job's fine right now, but be prepared, as they say.)

Third, if you modified your diet (instead of taking Questran or Welchol?), what did you do? How did you handle the health issue of the body needing fat, and needing fat-soluble vitamins? Were you able to keep your energy up? (I worry about being perpetually drained.) Did you find good substitutes for foodstuffs left behind?

Fourth, how did you handle situations where there simply weren't appropriate food options for you, such as dinners out with friends or highway rest stops?

Finally, did your ability to tolerate fat return? How could you tell, and how did you segue back into eating normal food?

Sorry for the anxiety-fest ...
posted by WCityMike to Health & Fitness (19 answers total) 4 users marked this as a favorite
Data point: my irritable bowel issues got much better when I had my gall bladder out 15 years ago, and it's remained that way, yay!
posted by Melismata at 11:08 AM on May 7, 2014

I can tell you that having my gallbladder out was possibly the best thing that ever happened to me. I still can't fried food, and I have to be careful to not eat a ton of fatty food, but I can certainly eat fat, and the range of things I can eat is so much larger than what it used to be. When I'm out to dinner and there's no food I can eat, I just get myself something later. I think about it as the same as any dietary restriction.
posted by Nimmie Amee at 11:22 AM on May 7, 2014

I think, 7 years post-chole, I'm at a place where I can eat a reasonable amount of full fat food today, too much makes things ... glidey and loose.

I'm not sure how to measure "improved" digestion. I'm still fat, but I still eat too much. I don't notice any thing different short of fewer (read - zero) pain attacks.
posted by tilde at 11:23 AM on May 7, 2014

Response by poster: tilde: did it take seven years to get there? what did you do in the interim?
posted by WCityMike at 11:36 AM on May 7, 2014

I had my gallbladder out in 2011 when I was 30. I have had zero complications and zero necessary diet changes. I still eat a cheeseburger and fries at least once a week and all I have to show for it are the little scars from the laparoscopic surgery.
posted by chiababe at 11:40 AM on May 7, 2014 [1 favorite]

Sorry didn't mean to leave that out. I noticed that at first I had to avoid fatty foods a lot, and within about six months I was at a point where I could eat a reasonable amount of fatty foods from a typical restaurant meal; portion sizes seemed larger but that's usually been the result of foods restriction for myself, stomach capacity seems to "shrink".
posted by tilde at 11:51 AM on May 7, 2014

After removal, I took a daily dose of a prescription medicine called cholestyramine, which helps inactivate the bile salts that the gall bladder otherwise stores. Bile salts help digest food. When there is no food to digest, and no gall bladder to keep the salts from entering the GI tract, they continually irritate the intestines and eventually cause problems.

In my case, I had two hospitalizations the first year of post-removal to deal with dehydration and severe pain. My experience is probably on the extreme end, but from that experience, I recommend that you have a game plan worked out with your GI specialist before removal, so that you can get help before it gets to the point you need to enter the hospital.

If your GI specialist tells you that you won't have any problems, that GI specialist is dishonest — and potentially putting your well-being at risk. Find another one who is competent and willing to discuss honestly what issues you may face.

Cholestyramine powder was tough to take. It also turned my poop into glue with the consistency of pudding and caused severe irritation. It helped, but wasn't perfect. Not meaning to be gross, but it might be worthwhile knowledge.

I switched from powder to the "horse-pill" form and was much happier. It was easier to take, worked better and didn't cause as many digestion problems.

Cholestyramine is also used to help treat high blood cholesterol. It does help fat-soluble vitamins pass through unabsorbed. These factors may require dietary adjustments. This is something you can discuss with your GP or primary care physician and keep an eye on.

A 90-day container of generic powder was ~$90-120 before insurance, and about $20-25 afterwards. I'm not sure what the pill costs before insurance — it's been a year since I've filled a prescription. I do remember that after insurance, it was about $10 for a similar course. The generic pill form was easier to take, worked better IME and cost less, so I'd recommend asking about that option, if you need to. Consider trying generics — Questran is a brand-name formulation and you'll likely pay a lot more for that. A lot of the cost issues may be down to local availability of the drug.

To deal with travel, find food options like salads and Subway-style sandwiches. Minimize processed meats and cheeses, burgers, fries, etc. Bring fresh fruit with you to snack on throughout the day — bananas are good because they last a while and are also packed with fiber, which helps the overall digestive situation. Give your body a bit of time to adjust to the new situation.

It took me about four years to recover. I won't be eating fatty foods ever again, but I rarely did, to begin with. I'm happier off the cholestyramine. So long as I eat smaller portions through the day, my gut doesn't seem to be as angry, these days.
posted by Blazecock Pileon at 12:05 PM on May 7, 2014 [1 favorite]

(My partner had their gallbladder out a couple of years ago, no real digestive complications. I'm just popping in to the thread to let you know that we had a bad but totally preventable complication post-surgery that the doctor should have caught - gastroparesis. Sometimes after abdominal surgery, the stomach just decides not to digest anything for a while - not even water. If you try to eat or drink, you'll throw up. You can't digest your pills and you get really dehydrated. Happily, it's easy to detect - listening with a stethoscope reveals that normal gastro noises are absent. And if you have it, they just pop you on an IV until it resolves - which it usually does within a day or two. For reasons totally unclear to me, the surgeon sent us home without checking for this extremely common post-surgical condition. My partner was readmitted, extremely dehydrated and almost delirious, via the ER after an extremely scary 24 hours at home and had to be in the hospital for another two days. It was no fun! But any surgeon who is paying attention can diagnose it easily, it's not dangerous and it's not even uncomfortable as long as it's being treated. My point being - check in with your doctor before you're sent home.)
posted by Frowner at 12:14 PM on May 7, 2014

I believe that Frowner is actually referring to postoperative ileus, and yes, you should definitely be checked for that prior to discharge. For a relatively straightforward procedure like a cholecystectomy I think the standard is often just to ask the patient if they've passed wind (although a bowel movement is a more definitive sign, it can take a lot longer to come around). If, upon release, you have significant cramping and bloating, nausea or vomiting, and constipation, it's always worth checking in with your surgeon.
posted by telegraph at 1:48 PM on May 7, 2014 [2 favorites]

(Oh, you're right, it was ileus...I forgot the term, googled "surgery stomach stops working".
posted by Frowner at 3:22 PM on May 7, 2014

Response by poster: Blazecock Pileon: if you don't mind me asking, and if it is not a private issue, what brought your situation to the point where it resulted in severe pain and dehydration that needed hospitalization twice?

Also, since you have stopped eating fatty foods altogether, I'd be interested in, dietarily, how you handle the issue with getting some fat into your diet (simply because the body supposedly needs it), as well as the fat-soluble vitamin issue.
posted by WCityMike at 3:25 PM on May 7, 2014

Geeze Fowler, I can't even picture thst. Since I'd had abdominal surgery before I knew I had to show my system was functioning - can't picture them skipping that. This time around they wanted to bed pan me but I had wet the gurney while I was coming to so they just helped me clean up & go home after anothe hour of lucid observation (outpatient center).
posted by tilde at 4:58 PM on May 7, 2014

My gut became very irritated by bile salts after the surgery, and I had a few sessions of three to four weeks of cramping and runs, along with losing 15-20 lb from being unable to eat food without it passing through my body only partially digested. Each bout left me pretty weakened and dehydrated, and missing a lot of work. A couple of these bouts sent me to the hospital. It took a long time for my insides to adjust.

I also think the powder form of cholestyramine didn't work as well as the pill form; once I started on the pill formulation, my body did a lot better.

I haven't given up fat altogether. I have the occasional bit of cheese and coffee and cereal with 2% milk, etc. I just avoid fried and other greasy foods.

My post-surgery situation was probably on the extreme side of things. I would just recommend having a plan to deal with any complications that you might run into, and have a GI specialist or surgeon who is honest about potential complications.
posted by Blazecock Pileon at 5:23 PM on May 7, 2014

Response by poster: Blazecock Pileon: I'm sorry you had to deal with that. I have to admit, what you had to deal with, that's the scenario that I've had in the back of my head already that's been freaking me out. I'm glad you got through it.
posted by WCityMike at 7:20 PM on May 7, 2014

I had mine out several years ago. For the first couple months post-op, I didn't deal well with fats... but after a while my body adjusted just fine. No drugs or supplements. All the butter & bacon I can stand. I trim the fat off Himself's grilled pork chop and eat it myself. I take 18% cream in my coffee. I just ate a bowl of ice cream.

Probably can't be good for me. But if I croak from fat consumption, at least I'll have lived deliciously.
posted by Mary Ellen Carter at 8:42 PM on May 7, 2014 [1 favorite]

I'm glad you got through it.

Hey, thanks — I'm not trying to freak you out about it, just relaying my experience. It's one of the most common surgeries and for most people it sounds like it goes fine. If you have any problems, I think you'll definitely be better equipped to deal with them than I was.
posted by Blazecock Pileon at 9:22 PM on May 7, 2014

I had pain in my back that wouldn't go away for a couple of years, though it would vary in intensity just enough to keep me from seeing a doctor. Finally one night it got out of hand and we went to the ER where I was really surprised to find out I had rocks in my gallbladder (my pain was on the left side, gallbladder is on the right). After some blood work, I found out the pain I was having was from pancreatitis (enzymes 4x normal, the doctor kept emphasizing), which was probably due to my ignoring the gallbladder problems so the bile backed up into my pancreas (on the left side) and hurt. I had to wait a couple of days on IV antibiotics before they'd take the gallbladder out, but they did the cholecystectomy the easy way, through three tiny incisions in my abdomen, and I went home. I took a bland and easy diet for maybe three days and then went back to regular food. I was nervous about fatty food, but not enough to keep me away from it.

I've had no problem whatsoever from fatty foods since, and that was eight years ago. I can eat anything. I am occasionallly constipated, occasionally have a loose-stool reaction to something I ate, and once in awhile I get the pancreatitis pain back again, but easing back to gentle, small meals for a day or two - and an occasional acidophilus capsule - keeps everything running so much smoother than it did when I had a gallbladder, it's just unbelievable.

If you've had any surgery before, you'll be surprised how easy this one is; if you haven't, you'll moan and groan for a day or two or three, but that's all. Serious surgical complications from this surgery are rare and there's no reason to fret about them - your doc will let you know if you have any special circumstances that warrant a worry-fest.

You're gonna feel better soon and be ready to celebrate! Yay!
posted by aryma at 11:06 PM on May 7, 2014

Back in 2011, there were a couple of us posting to this topic - No gall bladder

After years of dealing with post-cholecystectomy syndrome and poor medical management, user raisingsand recommended a bile salts absorber (such as Questran). For my personal experience, I had mild IBS symptoms before gall bladder removal, which could just as easily been attributed to gb dysfunction. After removal, I had severe IBS symptoms but no more gb pain attacks. Since the symptoms were so similar to IBS and doctors were generally unhelpful, I tried to treat them like IBS. My response was very similar to Blazecock Pileon. This went on for years. :(

So my point to the original poster... IF, (big if), you have issues 3 months after removal, I would strongly suggest to not waste time trying supplements, diet changes, etc. The bile salts diarrhea is very easy to distinguish and the medication is quick and reliable. There are several forms of the medication available and they are cheap with insurance at least. With these large pills, I have no reason to consider other diet tweaks. I've been taking these pills for 3 years now intermittent. I don't need as many as I did back then, but if I skip a week the symptoms will return. Take a pill and within 24 hours they're gone again. :) I wish everything in life could be solved that easily.
posted by ick at 7:04 PM on May 15, 2014

Response by poster: If anyone wants updates, to avoid a need to triplicate-post, please see here for updates.
posted by WCityMike at 11:28 AM on August 6, 2014

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