Hi all!

My step 2 of 3 was May 30, and takedown is scheduled for August 1st. I had UC.

I am sooo happy to be almost done with this whole ordeal! But ever since step 2, I've had low blood pressure. So, everytime I stand up I get so light headed, my hands go numb and I literally am blinded for several seconds. I keep thinking this will go away but it hasn't yet.

I was thinking dehydration, but tests come back fine. (I guess they check electrolytes?)

Anyway, it's driving me crazy, and is making me feel like I'm never going to feel better. I didn't have this problem after step 1. ANy ideas or suggestions? I've been downing the electrolyte drinks and water, but it doesn't seem to help. It's been a month and a half!

Thanks for any thoughts and advice!

I had a temp ostomy for 6 weeks between surgeries and was light-headed and dizzy a lot. I could not stand up and start walking without almost fainting. I had to put a chair in the bathroom so I could sit down after showering otherwise I would faint. I did the salt/electrolyte/hydration thing and it didn't seem to help much. I don't think it is that uncommon to have these symptoms especially if you have a fairly high-output with your ileo.

Does it get better when you have the j pouch? (I hope!)

It gets better immediately with takedown. Even though your numbers are okay, it still sounds like dehydration. Have you tried Vitalyte? It's available at REI or online. It's a great electrolyte replacement product. What electrolyte drinks are you using? If they have a lot of sugar (like some Gatorades) you may be defeating the purpose. The fact is, that loop ileo is just a naughty player. So just hang in there until takedown.

I had those same symptoms. Unlike Pixie, I couldn't even take a shower because I was standing. I had to take baths. I could barely walk into the hospital for takedown. Two days later I was discharged and when I walked out of there it was almost like I was on a planet that had much less gravity. I couldn't believe the difference. In TWO days.

kathy

Thank Goodness! I was beginning to think I'd feel like this forever!

You haven't recently tapered off of prednisone have you? If so, low blood pressure can be a sign of adrenal insufficiency.

Jan

I was tachycardic (elevated heart rate), hypotensive (low blood pressure), low blood sodium when I had my ileostomy. My GI doctor at the time who handled enteral nutrition at the Medical College of Virginia in Richmond was a great help, explaining about avoiding high fat, high carbohydrate things which could worsen osmotic diarrhea. I tried to stick to a high protein diet, multiple small meals, liquid hydration, and minimizing carbohydrate loads (lots of carbohydrates in Gatorade!!). Alot of emphasis was placed on slowing down transit time through the gut.

It all went away when I was hooked back up (ileostomy takedown).

See your GI or primary MD, get labwork, consider talking to someone who specializes in enteral nutrition.

Good luck.

Henry Clemo

Jan - Nope, I tapered off of the dreaded pred last November. Thank Goodness!

hfc - I am exactly like that - elevated heartrate, low BP. I do think it is dehydration of a sort. Good tips though about diet. I was only thinking about drinking electrolytes and lots of water, no caffiene, I didn't think about trying to slow transit time.

I had an appointment with my surgeon today, actually. He moved my surgery to 8/8/08, for scheduling reasons. He said to try what you all have suggested here - vitalyte, and slowing transit, but he wasn't too concerned considering my surgery is in just a few weeks and blood tests seem good enough. Also my BP went up a little, and heartrate went down a bit, I'm now 99/58, and heart rate 102.

This is all just more reason I can't wait to get this done!

I have had my takedown and satill experience these symptoms. My blood pressure is 111/59 and my heart rate ranges from 90 to 120 (depending on activity level). Does anyone have any advice to help post ops??

I always felt like that when I was recovering from surgery (I have had 3 temp ileos) - it takes you body awhile to recover. Continue to push fluids and make sure you have enough salt too. Because you have lost your colon - you need salt in conjunction with fluids in order to absorb the fluid and avoid dehydration. I like to munch on Pringles or Ruffles - Saltine crackers work too. Making sure you have a level blood sugar is also important - so you should try to make eat small meals or snacks every few hours to keep your blood sugar from drastically going up and down. Low blood sugar can also make you feel faint and dizzy, sweaty and rapid pulse.

Blood work does not always mean they check electrolytes - sometimes it is just a CBC which checks blood cells - however, if you told your doctor your symptoms I would hope that he/she did order a chemistry to check electrolytes.

For now, make sure you take your time standing up - go to the edge of the chair and take it slow. The last thing you need is to fall down and hurt yourself, so make sure if you think you are going down - that there is a chair or something to fall back on.

Like the others said, it should get better after your takedown, but remember not to push yourself too hard. Our bodies need time to heal.

Good luck - Mikaela

Oh - I forgot - are you still on pain medicine? That can also lower your blood pressure.

-Mikaela