Really need some advice

The usual go-to causes for fatigue among J-pouchers would probably be dehydration and anemia. B12 deficiency is a risk, but that shows up as anemia, too, though a bit different than iron deficiency anemia. Depression can certainly cause fatigue, sometimes as its most prominent symptom. If your urine is light-colored *every* time you pee and your depression is under good control then it’s likely something else, but those are the biggies (for folks with normal blood counts). I hope you feel better soon!

Regarding the gut microbiome, I think it’s quite important and complex in the colon, but I don’t think there’s any evidence that it’s anywhere near as significant in a J-pouch. It has a role in pouchitis, of course, but anything beyond that is guesswork.

What is your weight like? I have very low energy, I am on a high calorie diet and gain little to no weight. I have adhesions as well which have caused blockages and pouchitis.

Doctors think I'm "fine" but know that I have low energy, joint and body pain. I sleep terribly and part of it all is that I don't get enough exercise because I don't have the energy. If I physically do to much I loose weight. I am stuck in a circle.

Probiotics may help and with little risk except to your wallet. I was also told that dealing with my current adhesions would likely lead to more problems.

Good luck

I just thought of another commonly overlooked possibility. Sleep apnea can do this, and sleep studies are much easier to do (at home!) than they used to be. It would be more common to cause daytime sleepiness than fatigue, but these can be hard to tell apart.

I am so sorry, Ali, I know exactly how hard it is to have something wrong and no one know what it is or how to fix it!

Have you thought of another auto-immune disease like fibromyalgia? Exhaustion, joint pain, depression...they all go together into a nice little bundle.

There might be something at a micronutrient level...what do you eat? A soft diet is fine, even a semi-liquid diet but you still need to supplement to a certain degree...and using standard vitamins in rarely enough...you need liquid vitamins or chewables.

Do you get enough protein in your body to support healthy muscle development?

Micronutrients? We seem to forget about them these days but when you eat mostly artificially prepared foods, your body misses the natural stuff...can you get a juicer (try on a site that sells used ones cheaply), it can really help you!

Have you considered gluten sensitivity? Not necessarily a disease but enough sensitivity to affect your body...it is known to cause all of your symptoms. I can now tell when I have eaten something wrong, within minutes I am itchy, get rough red patches, pain in my joints, lose all of my energy, get sleepy, bloaty, and an irritated pouch. If I do not stop the Gluten immediately, I go into the next phase (where I am right now) where I crave it, eat it and get progressively more tired, achy, cranky and bloated (sounds like the 4 dwarfs)

Exhaustion breeds exhaustion, tired breeds tiredness...meaning the less that you do the less that your body wants to do...

You may have a multiple bag of things wrong, like anemia, autoimmune, vit B deficiency, fibro or something else that is playing to make you depressed.

When my K pouch was 'broken' and no one could fix it here where I live, I was told that I was depressed. I answered that if you fixed the problem, the depression would go away...it is situational depression. Caused by whatever else is going wrong...there is a difference. In my case, it took years to fix the problem and the post-op complications but once we got my body fixed, my mind was fine! It was raring to go!

Do not give up or give in...you are fighting the good fight..and you are too young to stop!

Good luck and keep us posted on your progress.

Sharon

I have noticed a correlation between low energy and watery stools.   One of the things I have found helpful with energy levels when I have watery stools is electrolytes.  I load up on them.  I have capsules with no sugar or anything that I take daily (regardless) and chewable tablets that I take as needed from a company called "Saltstick."  These are meant to be taken throughout a sweaty workout, like every 30 minutes, so they're not that strong.  Same thing happens when you have watery stools as when you sweat a lot: the body gets depleted of electrolytes.  I feel an immediate effect when I take them, and when I have watery stools, I take them throughout the day. 

I have noticed that powdered psyllium husk helps my stools be less watery.  I take a pretty small amount, like a teaspoon with water before each meal.  I have noticed greater gut integrity and have had no obstruction activity since I started taking it, whereas before I started, I was getting painful kinks every few months at the spot where I have an adhesion.  I don't know how small the area is through which your stool has to pass, so this could be inadvisable, especially if you were to take a large amount of the powder and not enough water: there is a warning on the bottle not to take this for bowel obstruction. In general, I find the powder (mixed with plenty of water) to be extremely gentle, but I wouldn't take it or anything solid while in the midst of an obstruction. 

So many possibilities, @Ali_*…

I agree with Sara Marie that electrolyte imbalance is a serious contributor to fatigue. Even ‘normal gut’ people I know feel that way—ask them after a routine colonoscopy… they tell me the bowel prep is murder. (Or just what some of us live with every day, right? (

An easy thing to try would be an electrolyte supplement. I love Electro-Mix electrolyte packets for myself, but it’s sometimes hard to find them since Amazon stopped selling. An even better mix (more potassium) is actually Body Armor, which they sell in every grocery and convenience store, just about. It’s fantastically better in terms of ingredients than any other ‘sports drink’ on the mass market. I made my mom drink it after colonoscopy to restore her to normal; it definitely perked her up. Gatorade and Powerade are junk; don’t waste your time there, and don’t waste your money on Pedialyte—this stuff is better in content. Read ingredient labels, if you don’t already; it so matters.

Anemia is another. And you don’t usually see B12 deficiency as anemia until it’s awful; the fatigue comes much sooner. I’m more concerned that you probably are low in folate, too, with a low residue diet. The juicing suggestion is excellent, if you can tolerate that, to put back a lot of what you can’t eat.

I lived in similar straits as you describe, for a year and a half, while I had an undiagnosed pouch leak and chronic peritonitis. You’d think you’d just drop or something, get really ill, but if it happens slowly enough, you just have all this vague, constant abdominal discomfort, watery diarrhea, difficulty passing ‘hard’ food (because of the scarring and inflammation from the infection narrowing parts of the intestine from the outside), fatigue like anything (because I was fighting a serious infection and didn’t know it), weight loss, and no reserve for any further challenges… I would come home from work and fall asleep in a chair, couldn’t remember if I had fed the dog or not, couldn’t be bothered to feed myself. Every day was a struggle. It was a terrible time, I remember, and I feel for you, going through this kind of thing.

Seeing a GI seems like a really good idea, just because. If you are, and bloodwork isn’t revealing, imaging can help. No one diagnosed my issue, with all the bloodwork just hovering around normal-ish or slightly low, until I had a abdominal and pelvic MRI. I was put on abx to treat what he was calling pouchitis—it wasn’t that, though. Whenever I had pouchitis, a few days of probiotic gummies would straighten it out. This was a massive, suppressed pelvic infection, and the delay in diagnosis cost me a large part of my jejunum and a lot of function. Don’t let anyone make you wait on something like an MRI of the abdomen and pelvis, if you are in pain.

But in the meantime, nutritionally speaking, protein deficiency is also going to be an issue in your diet. Eggs are the easiest complete protein to digest, so if you can handle some more of those, that would be good. At the time, when I had my issues, I survived on protein powder shakes—frozen strawberries, milk, and a protein powder with fiber (EAS lean 15; they don’t sell it anymore, unfortunately). The soluble fiber in the protein powder and the frozen strawberries both made the drink into a delicious, easy to take down milkshake consistency (and you probably ought to throw some ice cream in, while you’re at it—I did on occasion), and the calories were needed, the fat helping to absorb Vitamins A and D (fat soluble vits, A/D/E/K, don’t absorb well from supplements unless taken with some fat in a meal or beverage).

Anyway, hoping yours is nothing so challenging, but these tricks did get me through that time. If I had more energy, I’d have juiced, too; you can buy the bottles and drink those instead of juicing on your own, if it’s too labor intensive, but they may have too much fiber, so be careful. You may have to put them through a strainer to tolerate them, depending on how bad your strictures are. Mine couldn’t handle it without straining, so my mom started making me her beet soup, and straining out the vegetables, making me drink the rich broth, to help perk me back up. It was a good thing, but not enough of one. Watery things used to just go right through. Oh, and I only ever tried new things on Friday nights, to give me time to recover in time for work on Monday…

The loperamide issue you’re having is not uncommon, from what I understand. Sometimes you need to switch to diphenoxylate/atropine (requires a script) for a bit. I used to take both loperamide and diphenoxylate, but then the loperamide really stopped working. It could be an absorption issue, if the liquid works better. Sometimes it’s that you’ve taken so much the body gets too used to it. Then you either need more, which is tricky to navigate, or need to take a break from that and use something else. To this day, now that I’m just on one at a time, I swap out the Lomotil for Imodium periodically, just so that the Lomotil will still work when I need it to…

But NO amount of those meds (I took four of each at a time, q6h), or even when I had to add 1 ml tincture of opium, stopped the watery diarrhea when I had the chronic peritoneal leakage from my four-plus year old pouch, for those 18 months. My body was trying to tell me something. At 20 years out, hopefully less likely in your case, but other things can happen, too… please get checked, especially if nothing else is helping!

It is depressing, no doubt, but it’s situational, I agree; it should improve when your health does, if that’s the driver. I’ve felt that way, as I’m sure many of us have on these forums. It sucks to hurt and to be depleted every day, and not know how to fix it. Fibromyalgia is usually a physiologic manifestation of chronic depression, not situational, and not truly autoimmune in the vein of IBD.

Please don’t let someone tell you you have fibromyalgia, or anything else that is a diagnosis of exclusion more than anything, until you’ve been thoroughly evaluated for other, reversible causes of your issues. It’s too easy, if you’re a female especially, to be dismissed by the medical system for your fatigue and pain, to be given that label and shrugged off, when there’s probably a very good reason for your problems, and they’re just not looking hard enough. (It’s why it took 18 months for me to get real help; it wasn’t for lack of trying.) Even being part of the system didn’t get me great care when I needed it. But I knew to keep fighting by then, knew it couldn’t be something to just ‘live with’.

Best of luck,

Athena

Sorry to hear of your situation.

Any other symptoms with the fatigue?

I’m asking because I have severe fatigue that turned out to be from autonomic dysfunction. Autonomic disorders are reasonably common but are not really covered in medical school and doctors often don’t even consider it as something to rule out.

What is autonomic dysfunction?

Hi all,

Thank you SO much for your replies, I've been reading every one and apologise for taking time to respond. Honestly, last few days I've been too tired to write and have been focusing my energy on following up on some of the advice here.

At the beginning of the week I spoke to the colorectal nursing team at the hospital who agreed a gastro appointment was needed and were please I had a dietician apt. I emailed my surgeon to request a referral and am waiting to hear back.

Have just had my dietician apt and wanted to reply to you all while feeling alert and the plan is fresh in my head. She thinks my diet is well balanced, especially given the low fibre diet I'm on, and wants to focus on hydration to start with. I'm to have 5 sachets of rehydration salts a day - not even going to pretend not to grumble about this - I thought 1 a day would be bad enough, revolting stuff but I suppose a small price to pay!

I'm going to look up the other electrolyte supplements you've recommended so I can ask about trying them if I'm not getting on with the ones they want me to take.

I've also bought a load of supplements which I ran through with the dietician and she's happy I continue to try -these include a chewable probiotic.

I have spoken to the gp about the possibility of another autoimmune disorder but testing is coming back ok. Among the tests I've had this year theyve tested for coeliac disease and I specifically asked for a b12 check, which was OK. They've agreed to check for Lyme disease as well so I should get that done next week, although I've never had any reason to suspect this the Dr was really understanding about wanting to rule it out given its a simple test. I've not heard of autonomic dysfunction but shall look it up.

I had a pouchoscopy at the beginning of the year which should my j pouch was healthy, but I'm expecting that if I get the gastro referral the first thing they'll do is arrange an upper endo.

I am so grateful for you all taking the time to respond and offer advice and tips - I really can't tell you how much. I've felt so lost and frustrated this year, wish it had occurred to me to post here earlier. I'd also forgotten how good it is to speak with people who know and understand what living with bowel surgery is like!

Also - I did request they check my electrolytes earlier this summer because I once got really unwell with an imbalance when I had a stoma. That blood test came back OK, so I thought this train of thought was a dead end. It was only a random comment a couple of weeks ago which reignited it and speaking with you and the colorectal nurses I feel more sure than ever there's a strong bowel link at play.

...which is wonderful because for the first time in months I feel hopeful and positive that the fatigue can be treated, rather than clutching at straws.

I shall pop back later and make sure I've not missed replying to other points you've raised but thank you so, so much for your help so far.

- rogue autocorrect at play in that post! Hopefully still makes sense (and I meant "showed" not "should")

I read somewhere years ago when I was diagnosed with B-12 defficiency that taking vitamin supplements can trick the blood tests for b-12 defficiency to show up normal.

Ali: I hate the bitterness of potassium and magnesium supplements also. But they are hidden nicely by a sachet of preportioned drink mix, the kind that comes in a little tube you empty into a bottle of water. I use one of those in a liter with a packet of electrolyte mix and it makes it much more palatable… hope that helps. The bottle kind where you add drops of flavoring also works. Here we have flavors like strawberry or raspberry lemonade as options. Low sugar versions are readily available as well.

Deb, I don’t know about that being true anymore, with regard to B12. Usually the issue is that B12 deficiency leads to anemia first, and if you get enough folic acid, the anemia doesn’t show up so readily, and the other bad effects of low B12, including delirium, can be a problem because it wasn’t caught at the anemia stage.

These days, our B12 levels are tested pretty regularly by the GI or the primary doctor. Nobody is waiting for us to become anemic to look anymore… which is a good thing. So don’t be afraid of a multivitamin… they don’t have enough folate to hide anything anyway, because of really outdated FDA policy. Should have more than the 400 mcg they recommend; pregnant women need 1200 mcg/day to reduce the risk of neural tube defects, and those of us w inflammatory conditions could easily use more like 1000 mcg/ day. More folate is good for us—comes in leafy greens and fresh fruit and veg—and any excess is excreted in the urine, so it is not harmful.

Good luck!

Athena

Just read an NYT article about a study linking gut microbiome with chronic fatigue syndrome and wondered how these factors may impact those of us with pouches and our own unique stool bacteria issues.