New Member and Mother of UC sufferer, any advice??

Hello to all of you and thanks in advance for any advice or helpful tips.

 

My daugher is 14 and was diagnose in Jan 2011 with possible UC or Infectious Colitis.  She had a colonoscopy which showed colitis ulcers in the whole left side of her colon.  He thought it was more likely to be infectious due to her not having any known family history of any such disorder.

 

She was immediately prescribed Asacol 800 mg/3 times a day, all seemed well for 3 weeks......then it returned with even worse symptoms to include cramping, diarreah with lots of blood, nausea, vomiting, chest pains etc....took her to emerg, they did nothing but test her for anemia which was fine.  Tried to change her diet, take probiotics, tylenol for pain, no improvement after 5 days.  Went to family doctor, they told her to increase her asacol dosage to 800mg/4 times a day and recommended taking metamucil mix with half the recommended water to bulk up stool.  Aside from her stools bulkening up a bit, the side effects worsened, chest pains so bad that she could barely breath, turned pale blue and back to emerg for more tests, ecg etc...Told to keep taking the asacol and was also given Entocort Enema. 

 

By choice we stopped the Asacol as the side effects were too much for her to handle, she missed so much school and had no social life for over 6 weeks.  The horrible side effects cleared up within a day or 2 of stopping the asacol.  The entacort enema seemed to really help almost right away, the bleeding tapered and stool began to regulate to up to 2 times a day.  Went to see the specialist who prescribed her Salofalk to replace the Asacol.  As soon as she began taking it the chest pains returned and we put an end to that as well.  Continued with the enema every 2nd night as she was getting better and stopped after 2 more weeks once bleeding was very minimal to the point of only a little mucousy blood every once in a while.

 

She continued to take probiotics and eat yogurt daily, trying to eat a healthier diet but not always succeeding.  She started to notice traces of blood returning in her bm's over the next few weeks, always worse in the morning with many normal bm's in between.  So we never really could tell if things were getting better as it was so on and off.

 

As it has been getting progressively worse the past week or so, we've put her on a low residue diet of easy to digest foods, no dairy or high fiber foods.  Increased her probiotics supplements to 2 a day of 50 billion a.c. and 2 days ago she started back on the entocort enema.  There has been no improvement so far, I know it's only been 2 days but seems like the enema helped alot quicker the last course of it she was on.  We don't have any GI Specialist here that will see anyone under the age of 16 and regular doctors literally seem to know nothing or not enough to really help. 

 

So, that's my daughters story.  I feel so sad and worried for her always.  Any advice, recommendations, or personal stories would be greatly appreciated and helpful. Sorry for the ramble but I've thought the whole story would help to better understand our situation.

Hi - Welcome to the forum.
My son was diagnosed with UC, pancolitis, at age 13, so.... I feel for you. Gosh, it does seem that they should figure out if this is US or not. Have they done stool cultures to rule out pathogens?

It does sound as though your daughter is allergic or sensitive to the mesalamines; that's too bad. They worked well for my son... he still takes them. (His remission dose is 4 of the 400 mg pills, twice a day.)

Healthy diet..... well, we all ought to eat that, right? But for some of us diet doesn't make a lot of difference with our UC. My son continued to eat "teen food" thoughout his horrible onset flare. He ended up on prednisone which kicked in and healed him. He got off it within 2 1/2 months.... but sometimes people have trouble tapering off it without the symptoms recurring (like your experience with the Entocort enemas) and long-term pred use can have serious long-term side effects.
I hope the steroid enemas do kick in and help her again this time. When I flare, they are what helps me. In general, I stay on them every night for a week after all bleeding has stopped, then go to every other night for at least a week (one a GI put me on a tape of 10 days between each decrease) then every third night for a week, then every 4th night..... until I'm doing one a week, then I stop. The tissue in the colon seems to take longer to heal than we're aware of, so.... better to go slowly.

Some people do have wonderful success with the Specific Carbohydrate Diet; some others with UC have found that they are now gluten or dairy sensitive even if they weren't, before.

"Healthy" diet..... in a flare, I can't eat any salads or raw fruits or veggies (well-cooked are ok), multi-grain breads, anything gassy or "scratchy" (no beans or popcorn.) So... for me in a flare, my "healthy" diet is exactly NOT what the world considers healthy. A food diary might be helpful.
And while food fiber gives me trouble, I do take Metamucil - but, goodness, with the full allotment of water! Some people with UC develop constipation, and that could be really dangerous if she's very inflamed. So... I might try that again but with a tiny dose at first, in plenty of water. (Or one of the other fiber products.) I find it helps make my stools bulkier and easier to pass; and no straining means less blood sometimes.

What country are you located in....?

I hope this helps some. Ask any questions here, nothing is too detailed for this group to handle - we've all been there.

There are other medications that can be taken. She should see a gastroenterologist and have a colonoscopy to confirm the disease. There also should be a maintenance medication other than the steriods (which should not be used long term).

I cannot take the mesalamine's either. I tried imuran but it did not keep me in remission, I am on remicade now.

Are there any pediatric hospitals by you? They most likely have GIs. Who did the colonoscopy--was it a GI? And just because there is no family history of UC doesn't mean that one can't get it (I'm the first in my family). Did she have an upper endoscopy to rule Crohn's, celiac, and acid reflux?

You're doing the right things so far. I really think she needs to see a peds GI.

Thanks to all of you for the great advice! It definately helps to know there are ppl out there who care enough to share their own experiences. It's day 3 back on the Entocort Enema and still no improvement. The bleeding is the scariest part in my eyes but my daughter gets really upset when it's bathroom time due to the pain that comes with it.

We are definately going to get a referal to a pediatric GI Specialist in Edmonton since that is our only option. I will definately inquire about the cortifoam and the Transdermal LDN. I hope and pray for her and all of you to go into remission and be pain and blood free for as long as possible.

You are all amazing and strong, thanks again :)