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I was diagnosed with Severe Ulcerative in August of 2011 when I was 18. It hospitalized for many months and was so severe I had my colon removed in December of 2011. I have had 9 kidney stones from the result of this disease and currently have one in my left kidney. I have had 7 blood transfusions. I have done remicade and Humira, prednisone and nothing really worked. I had my take down surgery February due to a kidney stone shutting down my system. I wasn't suppose to have the surgery until late march. Its been 8 months since my last surgery and I still don't feel up to par. Still having bloody stools and diarrhea and right now have a fever. I always have lower abdominal pain and my stomach always feels tender. The depression starts to kick in but Im not taking anything because I don't want to be dependent on anything anymore because I have had enough. Its frustrating because I have all these health issues and at times I want to take pain meds not just for the pain but because then I feel like a normal person I feel better about myself and only use the restroom about twice a day instead of 11 - 15. I don't think I have accepted any of this because this is not the reality that I know. I was never ever a smoker and I am still completely against it but I picked up the habit in rehab and right now my views are I don't care what else happens to me cause life hasn't seemed to show mercy on me any ways. Im going back on cypro(UGH) and have a couple of labs to do to see if there is an infection. I know there are many others out there that have the same condition as me but I feel no one can relate. I've contemplated going back to a bag so I know longer have to sit on that God forsaken toilet. I feel when I had the bag I actually felt better, but then again I was loaded on Percocet and Norco at the time. I dont know what to do I'd like some friends on here and some input.

Thanks - Matt

 Reply posted for matthewpool.

I am just coming out of a flare so all of the frustration and loneliness I hear in your story feels fresh to me too.  Here are some of my survival skills:

1.  I have good reading material in my bathroom.  I have chosen to put reading that makes me feel positive in this space.  That way when I'm having that hopeless, lonely feeling because I'm sitting in the bathroom for the 15th time in a day, I am reading something uplifting.  Maybe find something that speaks to you and make it available when you need it most.
2.  During a particularly bad flare (over a year), I had seemingly exhausted every medication option.  I had a friend who had been recommending some alternative medicine.  I was very resistant until this time.  In desperation I thought 'what do I have to lose?'.  It was amazing how much better I felt.   I am on a specific diet to address some food sensitivities, have regular acupuncture and chiropractic adjustments and practice some calming and medication exercises.  The best part is that I feel I have some control over my health (rather than just waiting on a doctor to just write the next prescription or do the next procedure). 
3.  My GI doctor's clinic has an annual patient education day.  I took my family to this event.  It really helped so much more than I thought it would. It helped my family to understand what I was dealing with.  I think sometimes the evidence of our illness isn't visible or tangible to those who aren't living it (other than our noticeable absence as we miss out on our life by sitting in the bathroom).  Find a way if you haven't already to educate your family or close friends on what you are living with.

Finally, just know that you've been heard here.  You are so young, it's so hard to imagine that this gets better.  I hope that you find healing soon.

 Reply posted for matthewpool.

You are brave by sharing your strory.  I was diagnosed with Crohn's Disease when I was 17, I am 30 now and these diseases can literally kick your butt sometimes, but we are stronger than we think.  I hope you find some improvement, God bless.

 Reply posted for matthewpool.

sometimes it does suck alot, some days more than others.  i just tell myself im not going to be dependent on pain meds.  i was diagnosed when i was 16 and was always the skinny kid and everything up until this past January.  I got in the mindset that i wasnt going to let the disease control me and be a factor in my body.  i changed my diet and have been a gym rat.  the diet and working out has changed my mentality alot.  i dont feel like i am in as much pain, it is definitely less frequent, and i have finally started to gain weight (40 lbs).  it is hard work but in the end of pays off.  CHIN UP!

 Reply posted for matthewpool.

Hey Matthew... I am so sorry to see that nobody answered your post or gave you encouragement here. I am brand spanking new to this forum. I have no idea what lead me here because I really don't have a lot of time to read forums, but shortly after signing up and looking around, I saw your Subject line and decided to read your story.

I can HEAR your pain and frustration. I have been there too! I was only 16 when I was diagnosed and I too thought life could not get ANY worse than it was for several years.

Well listen to me young man! I am now 50 years old. I have Crohn's Disease! Life can and will get better.... Hang in there and don't you ever, ever give up!

Caring in Kansas,
Angie