Community Forum

Hey all,

I'm new to this forum, have recently been diagnosed with Crohn's disease as a result of a bladder fistula which puts me in near constant pain.  I also have Multiple Sclerosis, so I am no stranger to invisible disease.

Anyone else tired of telling your friends or family "updates" on how you are doing (because of course they ask with that pitiful look) and answering that "well, such and such is happening, but I will be ok."  I am tired of telling people I will be ok, to make THEM feel better.  I don't feel good.  I have been sick my whole damn life with one thing or another, have a generally positive attitude, am constantly being praised for being "a fighter" because of said attitude - today, I am just SICK OF IT.

If one more person tells me to "just cut out gluten, dairy, and fat," I think I will punch them square in the jaw.  They have NO CLUE the nightmare I have been through over the last month just to stop seeing food particles show up in my urine.

If one more person tells me that they have "also had a colonoscopy, it wasn't that bad," I will kick them in the shin.  Did you have to drink 2 gallons of that colon cleanse stuff because your system works so slow?  No?  SHUT UP.

I'm sorry to be Debbie Downer today - but I am normally the one who brings the sunshine.  I can't bring the sunshine today.  I shouldn't have to bring the sunshine when I feel like crap!!

Whew.  Rant over.
AmpAUD

Reply posted for AmpAUD.

Hi, I wanted to reach out to you about your bladder fistula. I had one too! Omg I fought bladder infections, took more Cipro than anyone should, tests, labs, you name it before they finally figured out what was shaking and referred me to Mayo. I would pass air when I urinated, horrible pinching pain, and my UAs showed up with waste in it. I was resectioned in May 2014 at Mayo Clinic in Rochester. Best thing that has happened in my treatment. They also repaired my bladder then too. I have continued my follow up care there because after all the negative experiences with my ND doctors I was done. Is surgical repair of your fistula an option? I have only wonderful things to say about Mayo and highly recommend getting a referral there.

Reply posted for AmpAUD.

AmpAUD,

Haha, story of my life! When I have good days, people ask how I am and I'm excited to tell them. I've had Crohn's since I was 12 and I'm 28 now. When I have bad days, they will know. I used to be like you and tell them a sob story and end it with, "but don't worry, I'll be ok." I've learned that it's ok not to be ok, we have an invisible disease and do not have to hide our pain. I am going through a flare up right now and if someone ask how I am, I will tell them but let them know, "eventually I will be back to the old me but for now, understand I am going to have up's and down's." 

Once you have had Crohn's for a little longer and go through the process of certain things like a colonoscopy, you won't hear that stuff as much. People think they know what we're going through and while they think it's helpful to hear things about how a colonoscopy isn't bad, it gets annoying. I wish you the best of luck through this journey and know you have a community to turn too! :)

Reply posted for nancyt.

I hear ya! I too have multiple health issues. IT SUCKS!  There are some days when you feel like no one, not even your doctors, totally understand.  I have even seen a therapist to help deal with the emotional side of it.  She helped to a point. I have had colitis for 8 years now. 3 years ago a vertebrae in my back slipped onto a nerve and now I have a pinched nerve that causes excruciating pain, sciatica, tingling so much in my leg that I can't sleep , and a cramp down to my foot. I have been going to a pain clinic . The Doc who I do like, gave me a steroid epidural in my back.  He said it would help from a few weeks, to a few months.  It helped for only 4 weeks, now I am back to pain. (Don't want surgery cuz hear it rarely helps). Thinking about seeing one of the mental health counselors at the pain clinic to help with the pain.  Maybe you could seek out a pain clinic? All the good hospitals have one.  I am also reading a book called ""Just One Thing" by Rick Hanson PhD.(Amazon)  It is very helpful in that it gives your daily examples of how to think of the GOOD THINGS in our lives, and how to be grateful for what DOES GO RIGHT. Sometimes we get in a rut and need to be reminded of the little things like the gentle sound of rain on the window, a train whistle off in the distance, a hug from a grandchild, compliments that come our way.  I am in the middle of 4 weeks of intestinal spasms which is no picnic but it has really helped reading this book daily and trying to see the world through my eyes prior to having health issues. Hope I helped.