Send us some positive vibes please!

I used to post on this site quite regularly but stopped quite a while ago because I just couldn't handle being so UC obsessed all of the time. For those who don't remember, I have a five year old who has been struggling with pancolitis for two years now. Though she's a lovely happy smart little girl her life has been turned upside down. She's been out of school, lost her favorite foods, been scoped, poked, prodded. We've tried countless meds (pentasa, pred (IV, oral), flagyl, azathioprine (allergic), antifungals, sulfasalazine, clipper, enemas of all sorts), alternatives (fecal transplant, homeopathy, ldn, chinese herbs (including several we flew to see in the US, tui nah in Italy, and meds from a top practitioner in China sent by a friend. This last one worked like magic but recently just stopped), diets (scd, low even no carb/gerald green diet, gluten free, sugar free and I really don't remember what else. Everything but that whacky David klein diet - though I did even consult him. He creeped me out). We have tried probiotics by the boat load, supplements worth many many thousands, ayurvedic meds from India, have consulted top pediatric GIs in Canada (her current GI), Italy (my husband took sabatical from his job and we sold our house to free up money so we could focus on her health last year), India, and NYC (Columbia U and Mount Sinai). We bought worms from Ovamed, consulted immunologists, a DAN dr, chiropractors, NAET practitioners, wizards, astrologers (not joking), pundits, my grandmother-in law (devout Catholic) prayed 24-7, see-ers, hypnotists, psychologists. I begged for advice on every board, read every blog, joined every list. I became incredibly depressed and had a nervous breakdown and became very ill. We spent our life savings and more.
In the past week, she went from doing very well on low dose pred (every other day, as dictated by her GI) and Chinese herbs from China to flaring badly. This monster disease! This time it could be punishing us for taking her swimming, for giving her a bagel from Tim Hortons or because she has a little summer cold.
Her GI has added vancomycin to the mix (no she does not have cdiff. Her GI is a big believer in trying antibiotics for UC though she says it's a gamble. some respond others dont. It's been two days and no improvement yet).
I'm not asking for any advice from you kind people this time as I do believe I know as much or more than most GIs out there (arrogant I know but I believe it to be true in the ways which matter). I have learned a lot from you all. This time I need good thoughts for my daughter as she faces remicade or surgery. This is by far the worst decision I have had to make and it is a nightmare. If there are any parents out there who've been through this and don't mind sharing your experience, I would love to hear from you. I really don't know how I'm going to make it through this.
If you've managed to read the above, I really do appreciate it. I needed to vomit it all out.

Post Edited (killcolitis) : 7/8/2011 3:04:36 PM (GMT-6)

killcolitis,

Wow, what can I say? Sounds like you've been on quite a roller-coaster ride... I'm so sorry.

Your daughter will definitely be in my prayers, you can count on me .

I'm not asking for any advice this time from you kind people this time as I do believe I know as much or more than most GIs out there (arrogant I know but I believe it to be true in the ways which matter)...

Nothing wrong with telling it the way it is. And I am a strong believer that you are your own best doctor.

Curious, when you mentioned trying LDN, was it transdermal?

I'm a strong proponent of LDN, but transdermal LDN becauses it bypasses the gut and gets directly absorbed into the bloodstream. So many UC and Crohn's patients have major absorption problems with meds, and vitamins, food, etc...

I wish you and your daughter quick results and better health, more qualify of life. UC certainly doesn't have any quality of life in it.

You'll be in my prayers.

     Killcolitis....I remember you.   UC sure is a horrible disease and my heart goes out to all the little ones who suffer so.  I was 52 yrs old when diagnosed and just cannot imagine the pain and anxiety a child must go through nor can I imagine the pain you parents are enduring.

     I'm not familiar with LDN.  Surgery, although it seems scary, may be the best option.  Your daughter is so young and God only knows what the long term effects of these high powered drugs have on the system.  I know it certainly is a tough decision and I wouldn't want to be in your shoes.  I will surely keep your daughter in my prayers.

     Shaz is one of the moderators in the ostomy forum and I believe she was a child when she had the operation.  Perhaps she could give you some insight in this matter.

     God bless. 

Hi -
I have been thinking of you! I am so sorry your daughter is flaring again.
You have tried everything you have been able to find out about - you have gone the "extra mile" in terms of educating yourselves and pursuing what is available out there.
I feel for you with the decisions ahead - it would be much easier to make such decisions for ourselves than for someone else, and someone so young. You are in my prayers.

killcolits,

Oh my, I feel so bad for you and your daughter. I am kinda new to all of this my daughter was diagnosed in November of 09 with uc. She went through all the meds. Missed most of freshman year from school but managed to do great in school. Sophmore year she started school and couldn't do it and did home schooling.

I didn't try all what you had tried. She did try the remicade it worked to some degree and then stopped working.

I was near a nervous break down. Trying the different meds. It would work for a couple weeks and then stop. I felt so hopeless. My daughter was 15 so she had a say and knew what was going to happen. This January she was in the hospital and they did a scope and it should the remicade not healing her colon anymore. We had a long talk about trying different meds. She said mom I am tired of being sick all the time. I want to have fun this summer. Two weeks later she had the first surgery of her 2-step surgery. Her second surgery was in April so she is just 3 months post-op. I can tell you she is doing great. No pain, no urgency, she eats what she wants.

I am not suggesting surgery for your daughter only you can make that decision for her. At least mine was old enough to understand her decision. It was hard with the bag. Soon she came deal with it ok it was time for her take-down. That was the last thing I wanted for my daughter . After seeing how happy she is and living a normal life as a teenager I see now this was the best thing for her.

I still hold my breath when I hear the bathroom door close. She is now starting to put her weight back on. When her surgeron sees her, he always tells her how great she looks cause he had seen her at her lowest.

I had asked her GI dr. if this was your daughter what would you do. She told me she would have the surgery. Her next choice of meds was humira but didn't give her a very good percentage that it would work. After we made the decision to have the surgery, she said that was the best. Her words were they don't know the long term effects of all these harsh meds would have on kids. I can only speak from what I know and have been through and it is nothing compared to you . Seeing my daughter now and knowing what she was like when she was sick. I know deep down this was the best choice for us.

I will pray for you, that you do make the right decision for you and your daughter. You will be in my thoughts

worriedmom,
I appreciate you taking the time to share your story. I wish my daughter was older because she'll have to deal with the ostomy from such an early age (we're not going to jpouch unless we have to because of ostomy issues, at least until she's older). I don't know how she's going to learn to manage it alone at school for example?
Having said that, if it comes to it we will have to figure it out. I'll probably lurk around the school and wait until she needs me or some odd strange thing like that.
I'm so happy your daughter's doing well and I can't wait to post the same.

killcolitis, my heart hurts for you and your daughter. Since you didn't ask for advice, I'm not going to give any. I'll be praying for health for her, strength for you, and for you to have peace as you make the terrible decision that you may be forced to make. If only life were fair children wouldn't get UC and parents would never have to make such difficult decisions; that said, your daughter is blessed in having you to be her strong base. I'll be thinking of you, please do let us know how she's doing.

I missed you when you stopped posting here on the ulcerative colitis forum. You were always one of the most informed members and performed the most research. I noticed that you had been posting on the Ostomy board and I hoped that your daughter was having an excellent recovery.

Sorry we were not able to help you. But I learned a lot from you. I learned that sometimes we can become arrogant thinking we have all the answers when we are fortunate to find some relief from this DD. But then I would think how you have tried every remedy known from pro-med to pro-diet, to pro-anything and everything. It taught me that we should be grateful for how lucky we are if any relief comes our way. Nobody has all the answers. Good luck.

Thanks again all. Since i wrote this earlier today (in a panic) I've received so many emails and offers of support. I really do feel better about the situation. Many parents have reached out to me to say their kids have been through it and come out the other side. It means a lot.

Judy, Thank you for your kind words. It may sound flaky but it's as if a weight has been lifted from my shoulders (at least for the moment). We will have to deal with whatever comes as we have been I guess.
Collicat, Yes, she's still with Dr Griffiths. From my experience she is the best and I do (grudgingly) trust her as much as I can trust anyone with my child's life I guess. I'm so thankful to be at SK for this since I know the class of surgeons to be found here are truly the best. I so happy to read that Dillon continues to thrive and I hope to say the same very soon.
Sibby, Thanks, it helps to get a child's perspective. We do not treat her as a "sick child" and most people would never know there was "an issue" with her from speaking to her. She's a bubbly, smart, well adjusted kid and we do try to do as much kid stuff as we can as to keep the other stuff away from her. it's a very fine balance and hard to keep as a parent in this situation, when your life and lifestyle has had to drastically change in response to this disease.
Babe, Yes, I did a lot of research and likely needed to to get to this point. Now I truly feel like I've done all I possibly reasonably (and likely unreasonably) could have done. I wanted nothing more than a "cure" but then who knows how long anything will work for (we have had some success with several things but nothing long standing). I hope you continue to do well with your diet.

Post Edited (killcolitis) : 7/8/2011 7:40:02 PM (GMT-6)

Wow I really feel for you. The LAST thing I would ever want is for my daughter to have this.

But hey things can change. The UC was so bad so suddenly last summer I took a stroke from high dose prednisone. I am now nearly 1 year free of UC and hammering out 22k per month working 70-80 hours per week to obliterate that ICU bill for the week long stay. I will pay it all off and wipe the slate clean. If my end of summer UC skips this summer I will have hit goals I thought were impossible post-hospital last year. Last year I thought I was finished. Now I have never felt better.

Keep trying. I strongly believe that certain food intake makes UC go wild. I gave up dairy and protein powders and corn syrup. I eat natural oat bread ( with wheat ), meats, yogurt, keefir and lots of organic pop tarts, spinach, almond butter and regular butter with long grain rice for Butyrate.

I take boswella, curcumin and sometimes I take 2 sulfasalazine, good results so far from adding NAG to empty stomach when things are a bit off - but I try to stick to normal food not processed food of any kind. Coconut water has helped with hydration because I only drink purified water which needs electroytes. It is hard to get rest when working this many hours and alarms going off in the middle of the night but I do not drink and that helps a lot. Coffee does not seem to be a good thing but I have a cup or two a day along with energy powders and L-glutamine. The coffee and tarts would be the first things to go, oat bread next.

Best of luck to you - do not give up hope!

Hope your little one feels better soon. Sendin positive vibes your way!

killcolitis,

Yes, you were right, you've tried everything to no avail... I'm so sorry for your little one.

I hope you finally find a solution to help her. Good luck, and I'll keep her in my prayers!

you are a wonderful mama who has went to the ends of the earth and back for your child. i hope that you can all start to heal to get on to your lives - a beautiful and happy one, so deserved.

please keep us posted. many many healing vibes to you.