Crohn's started in grade school

[Yogawrench]

My Crohn's story starts in 1970, when I was 10 years old. I had all of the classic symptoms (urgent BMs, pain, low-grade fever) but unfortunately I was misdiagnosed with an "ulcer". My official diagnosis came during my 2nd year in law school. Since then, I've had 4 resections (terminal ilieum) and many many hospitalizations. Today I can't imagine what life must be like without Crohn's. I've tried (without success) Humira, Remicade, methotrexate, 5 ASA, Pentasa, Immuran and countless "diets".

The biggest problem I have is low energy levels and the constantly changing condition of my gut. Dating is not really an issue, since whoever I choose to see must have compassion/understanding. Crohn's has helped me in dating, in that I now consider looks/appearance as secondary to things such as patience, understanding and support.

I've not taken any meds since my last surgery 3 years ago, but I have severe narrowing in the terminal ilieum due to inflammation from flares. I know my GI is upset that I refuse to take the limited treatments available to Crohn's patients, but every drug I've tried seems to cause as many problems as the disease itself. I practice yoga, which seems to help the gut. But until newer treatment regies come along, I will opt for remaining off of the limited drug therapies currently available.

 

[mikeyarmo]

Welcome to the forum Yogawrench!

Thanks for sharing your story with us. It sounds like you have had a lot to deal with over your life with Crohn's Disease .

I am glad you found some relief with Yoga. It certainly seems like you have tried a l variety of things to help manage your Crohn's, but hopefully the forum will still be of some help to meet some new friends who also suffer from IBD. Maybe you will find some of the information on here is new for you also.

Take care and hope to see you online again soon!

 

[Hexie]

Hi there Yogawrench

You've really been through it haven't you. I see you are like me - my motto is 'my body, my Crohns, my decision'. I refuse to do or take anything that will make me feel worse than I already do.
I've had Crohns since I was 16 - it was virtually unheard of over here in the UK back then. I still managed to have boyfriends who were great when I was ill.
My fiance is fantastic - he's so good to me when I'm not feeling well - he takes real good care of me.

Hang in there and take good care of yourself.

Shelli x

 

[David]

Hi Yogawrench and welcome A couple things:

1. As you had a resection of your terminal ileum and narrowing of what's left, you need to have your vitamin B12 levels checked as the TI is where that is absorbed. Low B12 can lead to the fatigue you're feeling.

2. Based upon failing all those treatments, you may want to look into stem cell therapy.

I wish you all the best and hope you become a regular part of our community

 

[Yogawrench]

Thanks for all of the replies. I just had my iron and B12 levels checked, and both were way below normal. The anemia is coming from the bowel re-sections as the removal of small intestine at the terminal ilieum has reduced the area of absorption for these vitamins. Funny how the symptoms of anemia slowly manifest themselves without one knowing it is happening.