Crohn's Disease Support Group

Hello, my name is Kathy, I am joining the group to get some support for an important decision I need to make. I have had Crohn's disease for 25 years, I am 54 years old. I got laid off a year ago, right coincentally at the time when I started having accidents on the way to work..don't think they are related Anyways, I just took a trip to Aruba last week and it was beautiful! However. I spent 50% in my room or the restroom. The 5 hour flight was stressful. I got through it with a regitmant of Immodium, but not really, So my dilemma, my GI says its time for the ileosotomy. I only have 1/2 a colon as it is and that is no good. I just feel this is such a huge decision.

I would welcome anyones input on how they made such a life changing decision.

Hi Kathy and welcome! I've also had many vacations like you. By the time we arrive I am so exhausted from the trip that I have spent most of the time in the room recouperating. I was told in my 30s that I would need a colostomy due to several surgeries for strictures and then medications not controling the disease. I was also at 80 lbs and felt like I was at the end of my rope. Just hanging on until something could be done. All in all I have to say I have handled the colostomy rather well. I can still get flares but I don't have a life that confines me to every restroom. No one can tell you wear it and won't even know you have it unless you tell them. Most people are very surprised when I let them on to my situation. I've been married for 26 years so the husband has dealt with it fine. Please let me know if you have any other questions.

Hi Kathy I have had Crohn's for 46 yrs. Im 54 also. My last resection was @ age 18 they told me they were not sure if there was enough bowel to keep it together. So I was mapped out for the colostomy.. I was lucky they saved enough. But the fear was so bad for a young adult. I have known others who have had the colostomy & done very well. Good luck & may god be with you .

Hi Libit, I do have a question. How long did it take you to - recover from your surgery both physically and emotionally? I also have arthritis with my Crohn's disease, my joints will swell and I am on Humira. I understand this will not change as the disease is systemic. Is this what you mean by flare ups? I had been on Prednisone for 12 years and can no longer take that drug, I am vit D deficient too, I know it is time for the surgery but terrified.

kathy the recovery time from the surgery was a good 8 weeks. I did return to work afterwards. Emtionally I handled it very well. I started gaining weight and felt like I finally had energy. And no more staying on the tiolet all hours of the day and night. What I mean by still get flares is that this does not cure crohns. Its just a situation I was in that I had no other options because I kept getting strictures and D and meds were not controling or easing the flare. Plus I was losing so much weight. But if you are at the point where your Doctors are teling you that this is what you need please don't think it will change the person you are. I do have my moments with the colostomy and anyone would. But I know that without it I would be right back where I started. And I certainly don't want that. At least I can have the freedom to walk out my door and not rush back in hoping I can make it. For me it is just a situation in life that I have to deal. I do allow myself self pity at times but I always snap out of it just fine.

Kathy what medications does your GI have you on at the moment?