HealingWell
Search Close Search
☰

Possible issues with loop ileo

Support Forums
>
Ostomies
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/4/2013 3:36 PM (GMT -5)
Hi all,

So, I've had my loop for 5 months, and I'm currently awaiting takedown. I know I shouldn't expect to feel particularly well, and I don't, though I'm functioning at about 75% right now. I am starting to have some weird things piling up though, so thought I'd put it out there and see if anyone has any thoughts.

Fatigue. Pretty chronic. Definitely worse when I lose track of my fluid intake and blow it. This is a known quantity and my own fault.

Cramping, indigestion, loss of appetite. These seem to be getting worse over the past few weeks. At first my appetite was pretty good, but nowadays I can barely get through an appetizer-sized meal without feeling full to the point of nausea and bloating. Almost everything I eat makes me feel nauseated for a while afterwards (not enough to barf, but just queasy). I also get some cramping in my lower abdomen, and this morning I actually woke up with a stomach ache, except it wasn't my stomach.

So, this is a collection of little annoying things. I have an appointment with my surgeon in a few weeks, and I plan to run this stuff by him. I'm just worried that there could be something brewing that might compromise my viability for takedown, and I wouldn't want that to happen. I don't even know if it's possible, actually. I'd just like to know if all this stuff is in the realm of "normal" or "expected" for this stage of things.

So please, group, if you have any wisdom on this, it would be greatly appreciated. Many thanks. kc.
Posted 11/4/2013 4:52 PM (GMT -5)
I felt pretty terrible when I had my loop, I don't blame you. I didn't have much appetite and I felt very fatigued all the time. I had really bad lower back and abdominal pain that didn't seem to be associated with anything, meaning eating or not eating, moving around or not, it would come and go and all I could do was go home and be alone.

Anyway... I think the loop is tough to live with. Five months is relatively long for waiting for takedown, have you had your pouchogram (contrast X-ray) yet?

In my experience, it had nothing to do with my pouch, the problem was that my transit was too fast (I wasn't absorbing nutrients, calories, and fluids the way I needed to) and the loop ileo was pulling my small intestine out of conformation (causing the pain all over my abd and lower back). Just to be sure my surgeon did scope my pouch before it was hooked up (I think to confirm I wasn't having pouchitis already, which I wasn't) and since all looked good we went forward with the takedown as planned. All of those symptoms have gone away since then. I'm not 100% on the fatigue issue yet but I think it will take much longer to get past the rough ~18 months I had with UC flare and surgeries.
Posted 11/4/2013 6:17 PM (GMT -5)
I would guess, as you already know, a big part of your problem is dehydration. Try drinking Smart water or other electrolyte enhanced products, they helped me when I had a loop ileo. Dehydration was the biggest problem. One doesn't have to be very dehydrated to make one feel like crap. Trader Joe's has about the cheapest electrolyte enhanced water.

It also sounds like you may be having mini blockages and dehydration can exacerbate that issue. Drink plenty and chew well and then chew some more.
Posted 11/4/2013 7:04 PM (GMT -5)
What types of electrolyte water does Trader Joe's sell? Like, what flavors?
Posted 11/5/2013 1:25 AM (GMT -5)
The only type I ever buy at Trader Joes is unflavored, its just water with electrolytes. Not sure they sell any other kind. I think it runs $1.29 for 1.5 liter.
Posted 11/5/2013 10:37 AM (GMT -5)
Thanks for your responses. Yes, I do believe a lot of this can be attributed to borderline constant dehydration. I'm not sure about blockages: judging by the amount of stuff that passes pretty steadily into the pouch, I'm pretty sure I've never been significantly blocked. And I am careful about what I eat.

darn, I wish I'd known about the Trader Joes stuff. I live in Canada (which is also why my takedown is taking so long... the pitfalls of socialized medicine) but I'm in the US frequently and I was just there a couple days ago. Anyway I plan to make my own today-- the internet is a veritable fruit basket of recipes, which seem simple and tasty.

As I said, I do plan to meet with my surgeon in the next few weeks, so hopefully he'll be able to tell me all is well. I had the pouchogram ages ago, and everything was fine at that point.
✚ New Topic ✚ Reply