I just found out two days ago after my daughter was in the hospital for 7 days having so many tests run and she was so sick and still is doctors did a colonoscopy and the upper GI scope done that she has ulcerative colitis, I just got her home this weekend from the hospital but she is still not feeling well and keeps having a fever is this normal? She is on meds and vitamins  due to anemia and such I am scared for her I do not understand, we go back to her doctor tomorrow for a follow up, what will happen to her life, everything I see on the web is scary, upon my research is how I found this site and sadly there is no support group or chapter in UT .  Help stressed and scared mom 

I was 13 when diagnosed... now 21. It gets easier. Just teach her that she has to be her own advocate for her health. She will have ups and downs and there will be days when she can't think about anything besides the disease. Try to find ways to keep her positive about everything, and over time, it will be something that she doesn't think twice about. 

 Reply posted for danderson.

I read your post and know exactly how you feel and what you are going through. My daughter was dx the end of April. It has been a roller coaster and I cry a lot. I want to be able to give her an antibiotic and have it go away like the flu. But it just doesn't go away. It's so hard to swallow! I too check on my daughter through out the night. I can't help myself. I've been so stressed out that I have to go to a cardiologist to have tests done because my heart won't stop racing... Well, I hope your daughter has turned the corner and is better. Praying for both of you!

 Reply posted for sj885.

Thanks for your suggestions and also for the title of the books I am learning more and not feeling so overwhelmed now that I am learning more like they say knowledge is power. My daughter just got home from the hospital after 38 days of being in isolation cdiff finally was negative and she started feeling so much better almost instantly and then it has been getting better each day. She is home now we did not have to have surgery meds kicked in and she is stable and also has gained weight she went down to 87 lbs and now is up to 103 and she has been outside and walking around she had to come home with the feeding tube but it was removed last Thurs at her GI follow up and she has been eating very well and doing 100 percent better she looks more like my beautiful 14 year old - the meds are a bit overwhelming she is still on 10 different meds but gradually tapering some down and some taper off completely in a few weeks Dr. said she has been laughing and joking and tells me see mom I told you I would beat this and be the boss of my body - she is such a trooper handling it better than myself.  I find myself constantly checking on her in the night and feeling for fever but trying not to so much just reaction at this point - SHe has been able to sleep all night and not have to get up once so different from a few weeks ago when she literally was in the bathroom 20 plus times a day and night and no more blood or diarreaha and pain is gone and cramping she said is very minimal. I so hope she continues along this path I just want her to be a happy healthy girl I know this has changed her but she is handling it well with help so far and tells me mom dont worry I got this, I tell her ya tell yourself that when you have kids and they are sick - and I just hug her and kiss her and thank god everyday for having her in my life. 

 Reply posted for danderson.

I am a caregiver to my husband.  He has been diagnosed with Crohn's disease for 12 years now.  I am sorry for your child.  I am not a patient, so I can't tell you how it is to have UC or Crohn's.  But as a caregiver, please maintain a positive mind.  I have been reading 2 books that I found quite helpful in understanding more the situation.  I personally found that, more I know, less I get panic and insecure.  This also help building up my tolerant as well.  Your love ones can be extremely depress and angry sometime mostly because of the pain and the meds.  So please stay calm as much as you can for your love one.

Here are the books I am reading, you may want to explore more UC friendly recipe as well.  My husband always has Ensure protein drinks at home for in case as well.

- The First Year: Crohn's Disease and Ulcerative Colitis: An Essential Guide for the Newly Diagnosed;

- Living with Crohn's & Colitis: A Comprehensive Naturopathic Guide for Complete Digestive Wellness

 Reply posted for danderson.

Wow, I am so sorry to hear about everything that you and your daughter are going through.  I recently dealt with c-diff that lasted about a month and a half, I had to take lots of antibiotics and I even had to have a stool transplant to get rid of it—not fun.  My doctor is recommending surgery for me as well, it has not been easy to think about having such a life changing operation done but I am coming around to the idea.  I hope that things will turn around for your daughter soon.  When I was first diagnosed I was in the hospital for several weeks and was so sick, my doctor was recommending surgery, I don’t remember everything that happened since I was young but your daughter’s situation reminds me of what I went through.  It was looking pretty bad for a while but eventually things turned around and I didn’t have to have the surgery at that time and I was able to get into remission with meds.  Everyone’s story is different but I think it helps to at least know that there are lots of people out there that know what you are going through and understand your frustration, worries, and all the other emotions that come with going through something like this.  Hang in there.

 Reply posted for sj885.

thanks sorry to hear you were diagnosed at a young age since my post we have been in the hospital again and still are we went to her follow up appt and she was admitted back right away so we have been in for a month now and no time for release and dr's are saying she may have to have her colon removed because not responding to meds she also got cdiff extremely bad to where she had to have a blood transfusion it has been *** . finally got rid of the cdiff and the last week she has been feeling better she also has been on a feeding tube for a week and will be for another week or two lost weight and is down to 85 lbs - i have been a basket case it is so hard seeing my daughter go through this.

 Reply posted for danderson.

Hi, I was diagnosed with UC when I was 13 (I am now 28), so I can relate to what you and your daughter are going through.  My heart goes out to you because I know this must be a very scary and stressful time for you and your daughter.  I understand how hard it is to be so sick while you are growing up but I know that it has made me a stronger person.  I have had to learn to be positive in order to get through the difficult times.  I also believe that my experiences have made me a more understanding, compassionate and empathetic person.  I know that there is nothing easy about living with a chronic illness but I also believe that despite the challenges we face we can experience joy and find things that make us happy and have very fulfilling lives.  You and your daughter are in my thoughts…II hope that she will start feeling better soon.