ileostomy fatigue

[Peabody5422]

I had a tumor removal from in front of my tailbone. Was supposed to be robotic with no problem. Well I woke up with a large ab wound site and an ileostomy. My problem is that that was done April 17th and I still can hardly walk across the floor to the bathroom. I cannot seem to get over being so fatigued even now. I have had to fight an ab acess in April but I have had bigger surgeries and not been in this shape. Any help out there. The surgeon and onoc keep saying seeing you in a couple of weeks. I was playing basketball and leading a fairly active life before this.

Note: I am having a pet scan next week to see about hooking me back up. My concern is that I so weak for another surgery.

[peanut_8]

Peabody, is the wound still open? How are you caring for it? I know from personal experience they can take a long time to heal, and really zap your strength., especially with an infection. Are you eating lots of lean protein? I remember hearing that quite a few times during my healing phase.
Best of luck, peanut

[Peabody5422]

Thanks Peanut. The surgeon put the thing right in the crease of my stomack where my pants band go so even the wound care people said it was awful. A 4" circle of skin (ileostomy) is red and blistered but I just deal with it. My surgical site is completely healed. I can just barely walk around the house. I have 3 doctors who cannot agree on meds. It's like there is a fight over the pecking order of whose's top dog. I just can't get any of them to deal with this awful fatigue. Onoc, GP or surgeon.

[peanut_8]

Are you getting blood test done? Maybe you are low on iron or something else that could be corrected with medication?

[KWT]

I wouldn't go into the reversal until you're completely recovered. The reversals easy but the recovery isn't a picnic.

[Cherie]

I have a very short bowel and now I do vitamin C with a crap load of other vitamins intravenously. My husband swears I have more energy afterwards. I know on the day of the infusion I feel like crap but the next four-six days later I function like a person with normal energy levels.

Worth a try.

[JaninOz]

Hi I recently had my ileo reversed. I never realised how much it drained me until that was done. The energy difference was almost immediate. I think I was probably slightly dehyrdated the whole time I had it.

You need to drink lots of fluids and also keep up the electrolytes. I found that if I had a Hydrolite (not sure what the US equivalent would be) I felt sooooo much better. More salt that usual too.

[Peabody5422]

I have had blood test from all of the drs. Some low iron but most ok. I saw a nurse yesterday after another round of blood work and she put me back on all my meds and then mega B12 that the drs had told me not to take. She also gave me a list of over the counter to help me sleep and told me hormones were probably off also. Yeah for nurses, they listen1

[peanut_8]

Glad to hear the nurse took the time to listen and help. Hope you feel better soon Peabody.
Best Wishes, peanut

[exaussie]

Are you still on avastin? That will inhibit wound healing and causes tiredness.
And Yay for the nurses!

[chrisca]

If you have red, blistered skin under the pouch then you need to see an ostomy nurse and get some ideas for how to resolve it. There could be leakage irritating the skin. There are barrier rings and different brands of barrier film that can help a lot. I had to use a barrier ring and cut small pieces from a second ring and attach them in strategic spots to the main ring. This plugs up skin creases and it made the seal much better. I also changed from 3M Cavilon to Coloplast barrier film. It was much better than the 3M. Before applying the barrier film, you can also sprinkle the skin with Desenex powder and brush off all excess. That can reduce any fungal infection that may be aggravating the skin. If the pouch is in your waistband, the waistband could also be breaking the seal. Try not using a belt, using elastic sweatpants, or even a sarong you can tie above or below the pouch while at home.

As for fatigue, get a full blood workup and also look at electrolytes and dehydration. The colon is where most liquid and salts get absorbed and it's not participating now. You may need to go overboard on salts and fluids to make up for it. I ate Fritos and drank a lot of Gatorade. Not the best diet, but it is temporary and it did help.