Help to find a way forward

So you're currently with the loop Ileostomy and you're in pain when you eat? Definitely bring this up at your next appointment

@Andreita posted:

So you're currently with the loop Ileostomy and you're in pain when you eat? Definitely bring this up at your next appointment

Yes, that is correct. I had an ileostomy since January and then got my second surgery to create the loop ileostomy last month.

While I cannot say it is normal to feel terrible post j-pouch, it is fairly typical to struggle for months with chronic fatigue. Some of us cope better than others. Clinical depression and PTSD are pretty common. Be sure to tell your doctors how you are feeling so you can get a proper diagnosis and treatment.

Being young can make it more difficult too, as you are at an age when you should be looking forward to a bright future, not worrying about the next health crisis that may hit you. Lean on your family and close friends to help you with all of this.

Besides the mental health aspect, perhaps asking for a second opinion on your treatment plan is in order. I am unclear why you were on immune suppressants and prednisone unless you have documented pouchitis. Is it possible you have undiagnosed adrenal insufficiency?

Jan

I had chronic fatigue for 4 months after one step.  I agree with others; pain after loop Ileostomy does not seem normal, see your doctor.  All those drugs also have side effects, but not sure about the pain you described.  Others in this forum may have better advice...

I don't know your story or your history but I feel your desperation...you are sick and tired of being sick and tired...you are fed up with the pain and exhaution.

I've been there, I've lived in...often...frequently and more so than many.

But I can honestly say that it gets better. I can say that there are times when it is worse but the absolute worse thing that you can do is to give up hope and stop fighting.

There will be a time when you will look back on this and wonder how you managed to survive...but you did and will...

I am an optimist...and I do not come by it easily or simply...I am a fighter and belive that we need to fight for our bodies, our health, our quality or life and our futures...

So, if financailly possible, get a 2nd or 3rd opinion. Take supplements if you can to help your body to heal. Give it the building blocks that it requries to fight.

Talk to someone if you feel that you are suffering from PTSD or depression or both (many of us are and have...and no, it never really 'goes away' it just gets managed)...maybe you need to attack this thing from more than one front.

Your brain expects pain and may be used to it so it keeps stressing, expecting it...your body has been severly compromised and is trying to figure out its new plumbing and how to manage it. This is a lot to handle for one little body. It takes time for it all to get back into balance.

So, please do not give up. You are just getting started. It will get better and you will be happy that you hung in and fought the good fight.

Good luck.

Sharon