Hi, my name is Tami. im 44 yrs old, married and have 1 son who is 15. I was diagnosed 16 yrs ago with Ulcerative Colitis. Seems as the disease, although is not as bad as it has been in the past, but still controls my life and caused me much anxiety. I hope to just make some new friends who actually know what I live with everyday.
My colitis is currently contained to 15 centimeters up my rectum. I am on Remicade for the past 1 1/2 yrs. I think its to strong for me as I have had severe constipation issues which is worse then going to the bathroom all the time. I have alot of gas and bloating still, mostly at night, which keeps me home. I do take miralax on a daily basis to help my constipation issues. I also when it gets close to my next treatment get mucus/blood and again its mostly at night.
Just wondering if anyone else has dealt with the constipation due to remicade possibly being to strong for them. I am 5’3 and weigh 92 lbs. My normal weight is normally around 105. I have talked surgery with my gastro, but just am not ready to go there yet. I was also wondering if there are any UC’ers that live out in the McHenry, ILL area. There are no support groups close and would really like to meet others that suffer from this disease as well, for support.
I have listened to Adams story and wondering if the cooking for UC has been of any help to people as well. As my eating habits have drastically changed I dont feel my disease is under complete control and I barely eat these days. I feel the less I eat the less symptoms I have, but that is not necessarily the case. I would love to be off Remicade and I would love to be able to make plans again and know I can follow through with them. That is the most hardest thing besides learning to not over eat all my favorite foods. im a planner and having to live life day to day is very hard for me and I feel so guilty with my husband. He is pretty much living with UC just not the physical symptoms. We lay around alot because I just have no energy to do anything. I also no longer work, so I have lost that sort of interaction with people. Does anyone else feel the guilt with there significant other and friends? I started seeing a psychologist but think it would be more beneficial to meet others living with this disease that live in my area. I think it would help alot with getting my life back.
Where I’d like to be in 1 year:
I would love it if I could just be able to make plans again. I live my life on a day to day basis depending on my symptoms.
Im currently on Remicade, have taken Asacol, Prednisone, Imuran, all which ended up failing. Prednisone is by far the worst med I have been on. The moon face weight gain, loss of hair. Horrible
written by Tami
submitted in the colitis venting area