My son had step 1 of j-pouch surgery on April 18. We are in the hospital for the second time, this time b/c when he stands up after lying down his blood pressure drops substantially (116/65 when lying down - as low as 68/33 when he gets up). They have run more tests than I can comprehend with no conclusions. Because of various setbacks, he has been extremely inactive since the surgery and hasn't really been able to eat well for any length of time. He has also had two bouts of gas that won't seem to pass through his stoma. We usually hear output pretty regularly. They both happened after he ate a larger or greasier meal. He can't pass the gas and it gets to bad, he throws up. Is there anyone out there who can give me any hope? We are so tired of hospitals and doctors and NO ANSWERS.

Has he tried gas-x or beano??

ucsonmom,

I can't give you a solution, but comfort to know he is not alone. I had both issues you are dealing with.
After my 1st surgery (along with other, more serious complications)my blood pressure dropped to 70 over 50ish, and I got extremely dizzy when I stood up. Was he on Prednisone? The cause of mine was adrenal failure after dropping to quickly off of the steroid. I want to believe they meant no harm, but, like you, I'm skeptical. It was just carelessness. I had to see an Endocronologist until after the 2nd surgery. He put me on a steroid that keeps your adrenals in check, and SLOWLY weaned me off. He always monitored my pulse and pressure. The medication did wonders, although I was upset about having to be on more steroids after having my colon taken out! I too did not eat much as was about 92lbs (usually close to 120).

As for the later issues-I have 2 thoughts. One is that if he is throwing up-it is a blockage, and not gas. Stop eating, drink a lot of grape juice, see if it passes. If not, call the doctor. Just so you know, I had a terrible time with gas after step 1. I had so much pressure building up at the stoma site, I thought I would explode. At about 3am, I would, with a loud expulsion of gas (waking my hubby up-very sexy). I was sure there was some kind of blockage, but they assured me that gas could get through anything, and there seemed also to be no anatomical reason. No doctors had a clue, except to tell me to use Gas-x and Beano. That only helped moderately. This kept on for quite some time, but eventually got better with time. That is the key-time! Now I pass it like a champ (although from somewhere else entirely).

He will have a long road ahead, but BELIEVE, it will get better. I had a really hard time doing that. Now, I'm as normal as someone without a colon can be (14 months after my 1st surgery.

Hope this helped.

You sound like you have doctors taking care of you and doing all the stuff they should do. if your son was not in their hands I would remind you that BP drops can be a sign of internal bleeding and anemia. If it is not that ...

Youngsters recover faster than us old folks do but they are much less disciplined. Most J-Pouch and related issues have to do with bad diet. I learned my lesson the hard way; I did not feel well until I realized I would have to eat small meals, give up spicy food, beans, milk not treated ith lactase, etc. I now feel 100% better but I eat a very managed diet. Is your son eating junk food like all teens do? Could that be part of the peoblem?

I had that blood pressure thing while I had a loop ileostomy. No one could figure out what was wrong. After I had takedown (and could barely walk into to the hospital I was so weak) I had an epiphany. I asked my doctor about it at the next checkup. The doctor who couldn't figure out what was wrong so he sent me to a psychiatrist because it must have been in my head. So the question I asked was: "could all of this have been caused by dehydration?" The idiot doctor looked at me and his eyes sort of got wider (because he was having an 'aha' moment) and he said, "well, yes, I suppose it could have." (Guess I'm stil a tad miffed about that aren't I?)

Anyway, dehydration might not be taken care of by additional water. Your son might need electrolyte replacement. A great product (and I know I sound like a broken record) is Vitalyte. You might want to order some and see if it helps him.

If this is dehydration that he's experiencing it should resolve once he has takedown surgery.

Good luck. And it WILL get better.

kathy

I also had a lot of problems with blood pressure/fainting. I could not stand up without nearly fainting. In the mornings when I woke up I always had to sit up, wait, stand up, hold on to something, wait, and then start walking. I tried to stay hydrated but I think the body just sometimes does not cope very well. After takedown this problem was immediately better.
It's only been a month since his surgery so maybe he needs to take it a bit easier with what he's eating? I had pain/nausea after eating for 4-5 weeks. I always felt very sick afterwards. Maybe switch him to smaller and easier to digest meals and more fluid and see if that helps stoma output.
It's only been a month, try not to get frustrated. It really takes time.

I had problems with my bp too! After the 1st step of my surgery my blood pressure standing was non-existent (the machine couldn't read it, totally freaky). I was extremely light headed when I stood up and fainted twice. But when they finally let me go home I tried to push myself a little harder everyday to just rebuild my strength and within a month of being home my bp problem fixed itself. I was also tappered off my Prednisone too fast in the hospital which may have also been the culprit.

Good luck and I hope they are able to help your son!!!