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My UC battle has been a roller coaster. I got diagnosed when i was 13 and got a colonoscopy and the doctor said it was definatley UC. I was relieved because that was curable. So I opted for medicine before getting the surgery to have a temporary ileostomy. I tried the steriods , the TAC , and even the remicade and nothing worked. Throughout that time I was coming in and out of the hospital , going to the bathroom about 7/10 times a day and slowly getting weaker. I finally got the 3 step surgery , and felt great. I had the first surgery in feb. the second in july and the third in Nov. Finally free of UC ... But soon after, about the beginning of the new year I started to form fistulas , tracks inside of your pouch that leaked almost constantly. I got C-tons in April and they somewhat helped but i gradually started losing weight & blood. I was exahausted all the time and could barely walk. I got a blood test on day and they called saying my blood count was at 13 , a healthy number would be around 30. The doctors even thought it was a mistake but I knew it wasnt. I got admitted into the hospital for 3 months treating my horrendous rash , due to the fistulas , and the fistulas themselves. The rash and fistulas somewhat healed but the doctors wanted me to revert back to the ileostomy AGAIN. I was devastated but knew it would be the right desicion. I got the ilestomy yet again but the fistulas were still there. I tried different surgerys and went to different doctors to get some opinions but nothing helped. I just got the news about a month ago that I have to have the ilestomy bag forever. I am getting the surgery in early january. 

 Reply posted for juliiiaann.

Hi, I remember reading about your story and had written back just to offer support.  I could tell you were going through allot, and at the time, you were about to got and get the ostomy.  I have my colostomy for just over 2 years, and I have serverCrohn's.  Its under control now, it was from 2002 to 2010 that I had what seemed like almost all the testing you could do.  Tons of hospital time , home health care, wound vacs, that was not pleasant at all, and noisy, lol  My story is really long so I will spare you with that.  I can certainly relate to the emotional aspects of what you are going through!  I had found that the more things you do activity wise, the easier it is to move forward with the ostomy.  I myself don't get mad that I have one  and I will never say why me.  I think its the people you run in to that just don't get it,,or they don't want do know.  I ran into a real problem with that, because I am very  talkative about my CD, and use allot of humor.    Anyways, aside from leaning how to maintain the ostomy, that's a whole other subject, I am still learning to.  Let me know anytime if you want to chat or need a fellow ostomate to talk to anytime ok!

Andrew

 Reply posted for juliiiaann.

How are you doing? I hope your ok. I have had a rough time but never had fistulas so im not familiar. I do know that herbal remedies have saved me from getting my entire colon taken out. I use some called Glutagenics powder and it protect the lining of your intestines and had healing components as well. Maybe it would help you too. Helps me with pain controls my bleeding pretty well and my appetite gets better and it promotes energy as well. Its a bit pricey but very worth it. Also L-Lysine is a vitamin. Echinacea to keep your immune system up and Vitamin D is hard to absorb for us so try that too. God bless you gorgeous.

Brittany

 Reply posted for juliiiaann.

Hello Juliiiaann,

How did your surgery go last month?  I just wanted to let you know that I went through many surgeries involving fistulas.  I am not sure if you still are dealing with them, but if you are and need to talk about how to deal with them PLEASE let me know.  I hope your surgery went as good as it could.  Good luck with everything!

Eric 

 Reply posted for juliiiaann.

Your story sounds extremely frustrating.  I am sorry that you have had to go through all of this.  What you are feeling, I cannot even begin to comprehend.  However, it is people like you that inspire me everyday! 

 Reply posted for juliiiaann.

Im sorry to hear that you have to get an Ileostomy :(    I've been lucky enough to not need any surgeries, although Ive cycled through a million different medications (being on Prednisone is absolutely dreadful).

Anywho, I hope the surgery works out okay. I can't  imagine what emotions you're going through, but try to stay strong and resilient.