First of all, it's nice to meet everyone. I stumbled across this site on accident and thought this would be a good place to get advice since it's filled with people going through this nightmare like myself. I had my reversal surgery last March ( 2013 ). Obviously after the surgery it was rough. I was weak, tired, felt like hell, and was thinking what the hell did I even do this for. Well it slowly got better, I recovered quite fast due to being in Shape from running, lifting and having a clean diet. About 3 months after the surgery I felt better to the point were I could run, get in the gym which is great. Unfortunately, things soon after took a spiral downward. Literally I seem to have gotten worse and worse as each month passed by. I'm at the point now over a year later where I can't even stand up from sitting without almost blacking out, I literally have 24/7 constant stomach pain in the forms of severe bloating, loud and I mean across the room loud stomach noises which are stupidly painful and I guess the best way to describe it is saying it's feels like a bad chemistry experiment is going on in my stomach. Other than that, I have no energy anymore, I can't focus, I can't function in school, I had to quit work since I can't stand for hours without blacking out. All in all I'm literally so miserable and I'm at my wits end. I've been to the doctor and he literally just tells me this is normal after the reversal surgery, throws antibiotics at me for C-Diff which I never have and tells me good luck! There's just no way I should feel like this after a year +. I really need help / advice. The depression is coming back and I'm so tired of dealing with this.
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You should seek out a qualified GI who preferably has experience with jpouch patients. You may need some further testing to get to the bottom of your issues. I don't think it is normal that you are unable to stand up without blacking out after this surgery. You could have very low iron levels, low blood pressure etc. Also, if you are experiencing any pouch related issues, a scope/stool testing can diagnose this and appropriate medical treatment can be prescribed such as antibiotics etc. Also, no doctor should prescribe antibiotics without first testing the stool for c-diff.
This is NOT normal. If I were in your shoes I would get to a teaching hospital in Chicago.
Sue
Sue
Agree. You need a complete physical work up. I'd find a reputable GI doctor wit J pouch experience.
That's what I've done recently for similar but much milder symptoms than yours. Found a good GI who works with my surgeon in the abutting department. He's drawn 12 tubes of blood with innumerable tests... I'm awaiting scopes in June, and also ruling out Celiac now. I'm also on B12 shots, which are helping loads with my fatigue.
That's what I've done recently for similar but much milder symptoms than yours. Found a good GI who works with my surgeon in the abutting department. He's drawn 12 tubes of blood with innumerable tests... I'm awaiting scopes in June, and also ruling out Celiac now. I'm also on B12 shots, which are helping loads with my fatigue.
I agree with what others have suggested (i.e. this isn't normal and you need a good GI doctor). I'd add that for J-pouchers the most common cause of nearly blacking out is probably dehydration. Are you drinking enough fluids? Is your urine dark-colored or light-colored (light-colored suggests good hydration)?
I actually had the surgeries in Chicago at the U of C. I literally drink a ton of water / Gatorade everyday and I eat a decent amount of calories ( nowhere near the 4k I'm used to however). I finally called a GI specialist today, still waiting to hear back. Here's to hoping though, I'd rather not spend the summer withering away.
Gatorade is very high in sugar. You need to watch your sugar intake with a jpouch as it can breed harmful bacteria. I have had less symptoms by eliminating almost all sugar from my diet.
I honestly didn't know that but, it makes sense. I was only drinking water when I was lifting / running but since I can't do that at this point I've just been trying to get whatever I can down to stay hydrated.
Besides encouraging bacterial overgrowth, consuming drinks/foods high in sugar also promotes diarrhea, due to an osmotic effect. Sports drinks are for those with normal GI systems. You are better off with G2 or other low sugar types, or dilute Gatorade or juices by half to avoid the diarrhea. Otherwise, you are defeating the purpose.
Plain water is OK, but you need to sip, not slam it down, to hydrate properly.
Jan
Plain water is OK, but you need to sip, not slam it down, to hydrate properly.
Jan