Questions need answers ASAP plz

Just to clarify...what was your surgery? It sounds like you had the proctocolectomy and j pouch creation done. You also sound like you have the loop ileo and it will be very active. That's the nature of it. Mine ran like a faucet 24/7.

I felt awful for about two months after that surgery. I had a lot of pain, had an abscess develop and had major trouble with my stoma because it shrunk so much it was recessed and I had major skin problems...pain and itching.

It took a good long while before I felt good again. Really now that I think about it, I didn't feel good until after takedown.

I know how you feel because I remember thinking when the heck was I going to feel good again. But, it's been only a month for you and you had major, major surgery. It takes time. You will get there. Hope you feel better soon. When is your reversal planned?

Yes I did have the illeostomy but the surgery I had on the 14th was the one you mentioned. Not a good speller. As of right now surgeon said he just wants to get me feeling better but I see him on the 23rd of this month and gonna push to get the rest of the takedown done and over with. I can't deal with the hot flashes from this any suggestions what I can do. I get them all the time and it's just disgusting.

Did you stop taking steroids with surgery? I did, resulted in adrenal insufficiency. I was soo soo nauseas and soo soo dehydrated i developed some strange symptoms. i couldn't even stand up straight, the back pain was so bad. Took them months to figure out (it was such a low does of cortifoam enema, it never seemed like a big deal) good luck!

Liz makes a good point....steroid withdrawal?

I've been off steroids since June of last year. That's one of the questions surgeon asked me when I told him about the hot flashes. My in home nurse just stopped in to check on me and she thinks I need to have my hormone levels checked but I don't know to trust her or not she's kind of out there if you know what I mean.

Mmmm, I'm sorry... wish I had some ideas for you. I deal with chronic anemia and when my hemoglobin gets low, I get wicked night sweats. But nothing during the day. It could just be that your body is healing from the surgery and is a bit "out of whack" right now. Hope you can get it figured out soon.

If you're emptying every 45 minutes you are probably dehydrated... that might not be the only source of your problems but it will definitely make everything else worse! I would work on that, you should aim to have less than 1000 ml of output per day.

All I can say is I can sympathize, I felt wonderful with the end ileostomy but I felt like crap most of the time with the loop ileostomy. I had TERRIBLE lower back pain, too. It went away 100% after takedown.

I can't tell if you've talked to your doctor's office lately or not. I suggest you call and ask to get in ASAP for the pain you are experiencing and lack of sleep plus the abnormal sweating.

Please measure your stoma to see if it has shrunk. If so you might need a bag with a smaller hole. Mine shrunk quickly and without that smaller hole it is going to burn like hell.

I agree you need to have your blood checked. If your surgeon isn't close can your regular GP do it?

Also my GP prescribes my pain medication. There is no need for you to suffer like this without pain medication so get some! I don't know the laws in Nebraska but in IA we have to have a paper prescription for prescriptions like Norco/Vicodin like pain medication.

As for your stupid bag that runs like a faucet. I had the same problem. There are bigger bags, good luck finding one quickly. Has anyone told you to eat marshmallows or foods that slow your system down? Pasta, bread and food like that make the BM thicker? Also quit eating and drinking a long time before you go to sleep. Those are the only suggestions I have. Sorry I can't help you more.

When I was in the hospital I had a big problem with dehydration. Is it possible that you are having problems with dehydration because your bag is emptying so fast? ASK YOUR SURGEON.

I think you are in such pain with this surgery because they removed your rectum and made your j-pouch which sits in your pelvis. This causes lower back and tailbone pain as some of us call it. They moved body parts and nerves all around in that area so it doesn't surprise me too much that your hips or any area around there is hurting you. Hopefully this will all get better as you heal.

The squeeky wheel gets oiled, call your doctor until she/he listens. You have many problems here. Maybe if you call your visiting nurse back and go over all of this with her, she will call the doctor for you and then you will get the attention you need faster - it wouldn't hurt to try that route either. I was sick one night and my VN got past the on call doctor and got straight to my GP, not the surgeon as I had an infection.

Please let us know how you are doing.

Thank you everyone for your input and advice. This surgery has definetly wiped me out. I have told my surgeon everything that is going on and he did have me have a ct scan done to check out everything and also had a rectum scope thing done and he looked up into the j pouch and said everything is healing perfect. I'm just gonna have to countnue fighting this everyday until I can have the final surgery done. Hopefully won't be very long.

Here's a quick test to see if your dehydrated:
Pinch the skin on the back of your hand so it tents up, hold the skin together for a few seconds and release. If it snaps back rapidly to its normal position, you're good. If it goes back slowly it may be indicative of dehydration.

A very reliable way to detect dehydration is urine color. If it's dark, you're dehydrated. Skin tenting is less sensitive.

Before my take down my surgeon warned me that I would feel very much worse and totally wiped out for about 6 weeks afterwards. I did, it was awful, but he was more or less spot on as about 6 weeks later I did start to feel better. A little bit better every day, not a lot. It will take a long time for your body to adapt. Make sure you drink enough electrolytes as you no longer have a colon to absorb fluids. If you are dehydrated do not drink lots of water or non electrolyte drinks as this can just dilute the electrolytes in your cells and make the problem very much worse. Even today if I don't drink 3 litres of electrolytes a day I start feeling awful.

Water is fine for most of us for hydration. Under some circumstances extra electrolytes might be needed, but we're not running marathons every day.

Hi Scott

Not all of us are that lucky. You don't have to run a marathon to get seriously dehydrated. Chronic dehydration can be a serious problem with a J-pouch so it is good for a new j-poucher to be aware of the possibility of it.
No matter how much I drink I can still end up in hospital when all I have done is rest. It is worst during the summer when it is hot my small bowel just does not absorb enough to keep my levels high enough.

Fair enough, Kiwi. That's why I wrote "most of us" and "some circumstances." You have to get to know your body, including what it takes to stay hydrated. Most J-pouchers do fine just drinking plenty of water. Some (like you) discover that they need something more, but I think that works better as a discovery than an assumption.