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I have been on meds for a year after my initial diagnosis and treatment. Was sick for about 5 months. Until a month ago I have been doing well on Lliada. Now, my symptoms have returned and I am facing the fatique, etc. I see my doctor on Monday. How do I keep this setback in proportion. I feel so defeated.

 Reply posted for mokie.

Tina C., up late again........must be the meds....I was reading another posting ( hooked on connecting with you all :) )  and I keep reading things about how stress can trigger UC symptoms..is this true?  My whole life has been STRESS and trauma since I can remember......so, why now does it affect me physically?  I'm almost symptom free now for a week, and still have all the same issues of life.......so if stress induces symptoms, why have mine gotten better?  Hmmmmmmm....I'm thinking it's the Lialda and prednisone, but I just read from one of you that you'd been taking Lialda and it was working for you too, until recently....I'm confused.

 Reply posted for mokie.

I was diagnosed with UC about 5 years ago.  Of course, now I'm having a difficult time remembering the sequence of events.  The most difficult was when the diarrhea was round-the-clock for five months until I begged for the Prednisone.  As a teacher, I was so thankful the restroom was across from my classroom.  I would yell "emergency" and my students (adults) would clear out of the way as I ran out of the room.   I decided early on this disease/condition was not going to get me.  I was going to find SOMETHING in my life to make me feel better.  To make this short:  sitting in the sun for 20 minutes per day (never between 10a-2p), restorative yoga (where you do nothing but lie on the floor and relax), lots of things to make me laugh (jokes, stories, positive people), making a commitment to do something I really enjoyed but rarely found the time to do and doing it at least once a week.  finding quiet time to just relax and breathe! I had to find my inner strength, not to depend too much on those who just couldn't understand, and joining the ccfa support group -- they DO understand -- and where else can you talk about bodily functions for two hours?    Good luck

 Reply posted for mokie.

reply for ulrablue

It must be hard not getting any support. I am lucky as my husband and daughters are all there for me, I can`t think how I would cope on my own.I think this site is just great for us to get all the support we want. good luck

 Reply posted for ulrablue.

oh blue can I identify with you !!! I have had crohns for 25 years now and the last 8 have been the roughest, especially the last 2  1/2 when I had to be put on a feeding tube.

It was rough  when I was knocked out of the work force in 2000, ut I could at least still babysit, but then in 2002 I really began having more trouble when I started having trouble holding down  or passing food. They realized I was having strictures and problems so they went in and removed 1/3 of my small intestine and the illeosequal valve. It was a rough recovery and I never thought I was going to get past it and then when it seemed it finally did my body turned on me again and started losing so much weight the tube had to be put in. They thought it would only be 3 months but when they rechecked my intestine they found the disease has spread so far that I will peobably require the feeding tube indefinately unless I have a miracle. I have days when I feel like I will be ok and then there are days when I feel like I just can't go on. Before the surgery I could at least babysit..now I have limited strength and lucky if I can last a day with my niece or granddaughter.

I really don't have much of a support system as my family is tired of dealing with it and me. I pay to see a therapsit so I can get a supportive hug at leasy once a month. Sounds pretty pitiful, huh

I'm a people person and this has pretty much cut me off from the outside world. I have tried to start a knitting group at my home so I can at least make some new friends. I knit hats for a friend who is a missionary in Nepal and needs warm items for over 300 kids so I at least feel useful.

There is a new therapy they are experimenting with so I have contacted the hospital doing it to see if it may be coming my way or not, I'm about desperate enough to try anything,  I do know massage therapy helps a little as well,

Hope this helps and would love to hear from anyone else as well as to how they are coping

 Reply posted for ulrablue.

Hi, 

 Reply posted for mokie.

One thing I tell fellow patients is talk about it. Ive had Crohn's Colitis (or "indeterminate colitis" as Ive heard it called) since I was 2. I'll be 26 in a month.