Desperate but Still Hopeful

Introduction:

I am a working wife and mother with two little girls, 5 & 11. I work in the mortgage industry which requires a lot of patience and concentration. The rules are always changing and I have to adjust accordingly or risk non compliance. I feel like I have 2 full time jobs between my regular job and managing my daughter’s disease. My hands are full and I’m at my wits end!

Desperate but Still Hopeful

My 11 year old daughter Tianna started presenting symptoms when she was 2. She was seen by a specialist at Mass General Hospital who couldn’t give us a diagnosis after performing a liver biopsy, colonoscopy and endoscopy. During that time I worked with a natural path doctor. We were able to determine that Tianna had food allergies, by doing some allergy tests that were not available in “mainstream” medicine.

After changing her diet we were able to get her back on her feet. When she was 5 she got an intestinal infection which her pediatrician wouldn’t treat. We went back to Mass General and had another liver biopsy, colonoscopy and endoscopy. Each time that she has had a prolonged flare her liver enzymes have been elevated. We left with a diagnosis of Primary Sclerosing Chloangitis and Crohn’s disease.

Again we worked with the natural path doctor changed her diet and she recovered with her liver numbers returning to normal. (We were told that this is unheard of with PSC). This past summer she started experiencing symptoms again, we started going back and forth to Boston again and had another colonoscopy and endoscopy in September. In October she got c-diff, which really knocked her on her ass.

Since then she has been on prednisone, vancomycin, balsalazide, ursodiol, Imuran, probiotics and vitamin D. She just had another colonoscopy last week (Jan. 9th, 14) her specialist determined that she now has ulcerative colitis, not Crohn’s and not PSC. She informed me that we need to look at medication management and if things get worse we can take out her colon. I’m at a complete loss at this point and no longer want to sit and watch my child suffer, Tianna is also done being treated like a lab rat. We started the SCD today and committed to giving it 2 months. So far today she has had 3 bloody very loose movements. We are also following up with the natural path doctor in early Februar y. Any advice that other sufferers could offer I’d be more than grateful to receive.

written by Wendy

4 Responses to Desperate but Still Hopeful

  1. Todd huffstetler January 21, 2014 at 7:34 pm #

    Sounds like you were on the right track with changing her diet and each time you she got better ( none flare ) you took her off the diet . Some UC suffering people are able to comtrol it by diet some are not able to . What is for sure if you are one of the ones that can then you stay on the diet at all times . I controled mine by diet for years then had some hard times , started eatting whatever i wanted and it came back full force and some . I screwed myself because now diet does not seem to help , being 11 and not being able to have candy or soda or go out for fast food sucks i know at that age it was something i really looked forward to . Having you collon out at that age or all the drugs that can shorten or even take your life is much worse .

  2. Corey January 21, 2014 at 9:35 pm #

    Todd is right on, and I’ll add that I know how frustrating it is. You’ll get opinions from every direction about what works and what doesn’t, and they’ll often conflict.

    It really is an individual process finding out what works and what doesn’t, and it will change. If you can get her in the habit of keeping a good food journal and have her update it with how she feels after words you can help narrow down a good diet (or if a good diet is even possible) and go from there.

    All of these struggles are not the end however, it will build strength and discipline in your daughter that others don’t have, so she’ll have an asset in that.

  3. Dan January 21, 2014 at 10:27 pm #

    The last time I had a bad flare I was given vancomycin and the GI doctor had me go to the health store and buy some S. Boulardii . I had a C diff infection (my 2nd one) and with both of these it took care of the situation.

  4. Juliet
    Juliet January 24, 2014 at 4:16 pm #

    I was just going to suggest some probiotics and sticking to a sugar, yeast and carb free diet. Very hard to do especially when you’re young. My last bad flare lasted most of 2013 and nothing controlled it, not even prednisone. My GI specialist gave me five day course of metronidazole and vancomycin and that did the trick. I tapered off steroids and had already stopped taking Asacol as feel it was part of problem. I have high fiber diet, lots of fish, some chicken and make my own yoghurt. And drinking plenty of water. Stick with naturopath doctor and give things a chance to heal. Having surgery is something you can’t take back. Hope your daughter improves.

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No matter what, colitis flares don't last forever, don't forget it:)