Hi Rlooker10,
Hmmmm... well... that explains your dilemma. Welcome to the Short-Gut Club. It pains me to say that, as I wouldn't wish this on anyone. Well... I can think of maybe one or two... but let's not go there. I'm guessing the ramifications of having only a small part of your original small bowel left weren't fully explained to you. For those who don't know... the small bowel is approximately 22 feet (7 meters) long. Rlooker's 130 cm equates to a little over 4 feet, or about 20% left. I've got 140 cm left and I remember my surgeon coming to see me post-op and telling me I'd be just fine with that. I'd like to run into him in a dark alley some night. But it IS pretty amazing that we can survive with 80% of something as important as our bowels missing! I guess the rest of you folks are all carrying around that extra weight for nothing! Ok... let's get back to you. If what you're about to read is new to you... you need to find the best Docs for your condition, which won't be as easy as it sounds. Due to the relative rarity of what we have you'll find there are very few Gastros who even have a clue about what it's all about. That's because until recently most with our condition didn't survive for very long, and in terms of numbers we're still rather few... so we're sort of the new guys on the block in terms of medical conditions worth treating. So when interviewing Docs tread carefully... especially with Gastros. I'm a big fan of teaching universities for getting the latest and greatest treatments... but that is very dependent on location. You might have to travel a bit to actually see a good Doc in person, but with the video conference appointments going mainstream that works in your favor. I have also found that those with the most knowledge of Short Gut Syndrome worked in the bowel transplant groups, not Gastroenterology. But only the largest universities and hospitals attract those folks, so that's another reason for seeking them out. The reason the transplant folks know the most about short-gut is because patients with short-gut often are put on TPN, and TPN destroys your liver. So many end up needing a liver transplant as well as a bowel transplant at the same time... and I'll elaborate on the TPN thing in just a second. So find good Docs to help you out now, don't wait until things get worse. The good news is the transplant folks really do keep up-to-speed on advances in short-gut because the majority of short gut patients are infants, and for a variety of reasons folks seem to work just a bit harder to help infants survive than older folks... so when advances do emerge that help with our condition they're implemented quickly and clinical trials are expedited in Transplant. Gotta love them babies!!
Ok, so you're up a creek without a paddle just like the rest of us. Here's where you need to focus:
First... get your active disease under control. No shit... you can't afford to lose any more bowel, and you need everything you've got left to be in working order! Don't settle for the status quo in terms of treatment if you're still doing the same thing that got you to this point. You NEED to get it under control ASAP.
Second... you need to get as smart as you can on your condition. You are your only advocate on your behalf. Don't expect or trust anyone else to be in charge of your care. If you weren't handed a copy of Carol Rees Parish's book when you left the hospital you need to get it. It's entitled "A Patient's Guide to Managing Short Bowel Syndrome" and they'll send you a free copy when you sign up (it's also free) over at https://www.shortbowelsyndrome.com/sign-up. It's considered "The Bible" for us empty chesters and there aren't many other books on the subject. When you read it if you have any questions I can get you straight.
Third... TPN. If they told you you're only on it for a short time to provide some added nutrients... I don't want to ruin a perfectly good Sunday... but that's probably a bit optimistic. 130 cm of small bowel, with some of it with active disease, would probably work for someone who weighs 100 lbs... but I'm assuming you weigh a bit more than that? I wouldn't be surprised if you're going to be on it for a bit longer. Many short gutters are on it permanently, which really sucks. But it's the recent advancements in TPN that have allowed us short-gutters to survive for more than a few years. Thank the liver transplant folks for that. But TPN isn't a cure-all and many still don't survive being on TPN for long periods. The TPN slowly clogs up your liver (which acts as a filter)... which then fails and you go bye-bye. So keep a watchful eye on your liver function test results (ALT, AST, Alk Phosphate, Bilirubin) and get tested often (like once a month minimum). Plot out your results to see trends. You'll notice all will elevate the longer you stay on TPN, but they can adjust your TPN formula a bit to help slow that down... and then hopefully you'll get off it. Yeah, they'll tell you there are folks that have been on TPN for 20, 30 or more years... but they can count those folks on one hand. Seriously, keep an eye on this stuff and make sure your Doc and your infusion company are talking... a lot. Your infusion company should also set up a plan for how you will be weaning off TPN... or at least try... and have you in contact with a Dietician from their company who'll be checking micro and macro nutrient levels pretty often. NOT a Nutritionist... a Dietician. Big difference between the two. The idea is to let the TPN keep you alive as what's left of your bowel adapts to try to absorb different things that were previously absorbed by the parts that were removed. The good news here (yeah, there actually IS some good news!) is that your bowel is incredibly good at adapting!! They'll tell you it will fully adapt in 3 years and from that point on it's as good as it will get... but that's pure bullshit. My bowels have adapted more in the last two years than they did in the first 3 years... so don't give up hope. You'll also be receiving hydration through your PICC line, but it's really a separate thing from TPN... although it's all lumped together when it's discussed. There's a good chance you'll get off TPN if you can keep your active disease under control, but you may have to still be hydrated for some time via your IV. I think I stayed on hydration for a couple months after I weaned off TPN, but was told many simply get a port installed instead of the PICC line and require IV hydration forever. That doesn't sound great, but is really the lesser of two evils and pretty easily managed.
Fourth... hydration. Yeah, again. You're complaining of high output... that's something you'll need to get used to. You'll never have your old bathroom habits back, except you'll use a lot less toilet paper! When I came home from the hospital after getting short-gutted I could eat something like a sandwich and have it coming out into my bag before I took my last bite. Liquids took literally seconds to go from my mouth to my bag, which was very depressing. But that improves with time. What doesn't improve with time is that trying to hydrate by drinking more water (or any hypotonic fluid), as that just makes your hydration worse... and you never get fully hydrated. And hypertonic fluids are even worse and really accelerate your dehydration, because they actively pull water OUT of your bowels, so avoid all sugary drinks immediately. When you read Carol's book it explains all this in detail. But hydration can end up being the toughest nut to crack... and it's a very frustrating thing to deal with when you have that ravenous thirst all the time driving you nuts. But as your bowel adapts so does how you deal with hydration. It'll never be normal, where you can just chug a bottle of ice water or such, but it's manageable over time. And that crazy thirst will subside.
Ok... I could go on really ruining your day, but I think I've bummed you out enough. Get Carol's book! Once you've gone through it I and others on here can help you more. Spoiler alert... it can be a bit of a tough read, so don't fret the excruciating details the first time through, just focus on the big messages. And don't despair... Carol doesn't suffer from short gut... and that's evident in how she writes about it. She trivializes some things that, if she had the problem, she really wouldn't (like thirst!). But we'll get you through all that. It's the basic info she's providing that's key.
Oh... those motility meds... Loperamide is pretty harmless, but doesn't really help. None of the motility drugs really have been much help for me. They certainly slow down motility, but motility isn't the real problem... length is the problem. I think of it as a velvet-lined garden hose. If you dump a quart of water into a 22-foot long velvet-lined garden hose it'll take some time before any water comes out the other end. But dump the same quart of water into a 4-foot velvet-lined hose and it'll come out the other end in short order. And neither hose has any motility (i.e., peristalsis) going on... so motility meds are of limited value. Stay away from the Diphen-Atropine if you can... it's not your friend.
Later,
Bob
