It was Crohn's, not Ulcerative Colitis!

[DJoe]

I was first diagnosed with U/C in May 1984 with all the pain and bloody stools about which everyone knows too well. I had a J Pouch done at the Mayo Clinic by October of that same year because the U/C had taken over the colon completely. I had sooooo many problems with the J pouch after that I decided to have the surgery for an ileostomy 16 years later. It has turned out to be the better choice. But I still had pains - apparently I had adhesions growing in there like weeds and so my surgeon tried to take them out laparascopically about 8 years after the ileostomy. It wasn't 6 months later and I was having many more pains again. I saw a surgeon at a nearby University Hospital and she recommended that she do a comprehensive to see the outer wall of the small intestine as well as the situation with the adhesions. They were extensive the adhesions and they were dense around the area where they built the J Pouch. But she put seprafilm between my small intestine and my internal organs to keep them safe from these adhesions to keep them safe. I was really pleased with her. She found quite a lot of adhesions, but at he same time she had ordered a blood test from California and it came back to confirm that I had Crohn's Disease! Apparently one cannot have both U/C and Crohn's - it is either one or the other... If that is true, then I had Crohn's for all that time and the reason I had so many problems with the J Pouch was probably the Crohn's now acting up in that J Pouch! The adhesions have become very bad - espcially around the rectal area because that's where most of the surgery was done (they will not perform any more surgeries unless absolutely necessary because of the risk of creating more adhesions). Now I am on Humira for the Crohn's which seems to have helped. I am accepting whole thing. But between the Crohn's and the Adhesions I have sometimes had terrible pain and I have cut back on work to half time. But one of the most difficult struggles is an unrelenting fatigue that I have had starting with the first "diagnosis" of U/C in 1984. For about the last three years by Noon I feel like I have already put in a full day's work and I am pretty worthless after that. Has anyone else had problems with fatigue? Can one have this kind of fatigue even when they are not flaring? I just feel so much like a wimp, but I cannot help but to think the fatigue is a result of the Crohn's. Has anyone else had this problem of constant fatigue or am I just a little crazy!?!

Thanks!

 

[valleysangel92]

Hello, welcome to the forum.

You definitely aren't crazy, fatigue often goes hand in hand with crohns. Its common for patients to be malnourished, have disrupted sleeping patterns, be on strong medications or simply be exhausted because their bodies are busy trying to heal.

When did you last have your bloods done for vitamin B+D , iron and potassium? A deficiency in any of these three things can cause extreme fatigue.

If you're having issues eating, you could find that juicing fruit and vegetables helps you. It makes them easier to digest because it breaks down the fiber and means that you're still getting all the nutrients plus lots of natural sugars for energy.

Keep listening to your body, if it tells you to rest, rest, you know yourself the best and your the best person to decide what your limits are. Your health is the most important thing.

 

[DJoe]

Thank you Nicola. I really appreciate your response and your support. I feel better just knowing that it was not all in my head!

Thanks again!

DJoe

 

[valleysangel92]

Thats what this place is here for, we understand each other, there's not much you could say that someone here can't relate to. Keep your head up and keep positive

 

[tillylala]

I can relate to the fatigue. I am just starting another course of Pred, which seems to help with the fatigue slightly.
I agree this forum is great to ask whatever you wish, and not feel stupid or embarrassed at all!!! Keep well.

 

[DJoe]

I never realized what a great Forum was available to us! I am so glad to have dropped in on it. I have been feeling like such a wimp for dropping back to half time... I really was at the end of my rope! I teach Theology at the University here in town and they let me do much of my work at home so that helps. But I have just always felt that either I was lazy or everyone was thinking I was lazy! Thanks for the kind words.

Dan

 

[valleysangel92]

You aren't a wimp, I've seen people drop out of work completely with far less to deal with than what you have, don't put yourself down. Its clear you need a break, your body needs time to recover and lowering your hours gives you chance for this to happen. If it helps at all, you probably would be feeling a lot worse now if you carried on trying to work full time and you may of ended up in a position where you wouldn't be able to work at all.

 

[tillylala]

I have been off work since 16th May, I am planning on going back 2nd September, I go back on a phased return, so do half my hours then build up. They are aware my energy levels are low, and I am still recovering. You have to give your body chance to heal and recover. Luckily my employer (NHS) is quite clued up with people on long term sick, and I liase with my occupational health dept. These illnesses wipe you out big style!!!!
Take care.
T x