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Brief History,

My 14 yr old daugher was diagnosed last March with UC, she was taking meds and doing great so in July we (me and GI) decided to  change and reduce medication......all bad, or just bad timing. She has been sick since August, she is taking 6mp, Colazol, Ferrous Sulfate (Iron) and Flagyl. She has been on and off of Prednison dealing with awful side effects each time. She was on Cort Enemas but got a severe hive reaction so it was stopped. Last November she was in the hospital with Kidney Stones and about two weeks ago she was so sick with major pain and extreme diarrhea and generally bad all around, well her labs came back and she now has C-Difficile. It is so hard seeing her feeling so sick, I have tried the SCD Diet but it was not for us, she was even more sick on it. She is taking vitamins and I am considering better probiotics (VSL#3) also yesterday she and I both noticed she is loosing alot of hair. I just dont know what to do and if this amount of medication is normal for someone with UC to take, or if anyone else is dealing with this same situation, any advice or general info is welcomed.

 Reply posted for Momcat.

Hi,

I am so sorry for your daughter, you, and your family.  Our daughter Nicole was dx'd at 2 with UC and underwent a three-stage colectomy/ileoanal pullthrough between the ages of 4 and 6. 

Surgery is definitely not for everyone but it was an overwhelmingly positive experience for her in the long term (she is now 12).

Culturelle and VSL#3 have helped a lot of IBD sufferers.  They have kept pouchitis at bay for Nicole.  Those who still have a colon may have to take up to 8 packets of VSL#3 daily for a few weeks before noticing improvement. 

Nina

 Reply posted for sraymom.

We'll things are still not good, we had our GI appointment last Thursday and had a MRI on Friday which did not go to well as she had a bit of a reaction to the Barium Sulfate but we did manage to get the MRI done. I have not heard back as of yet but we do know she has inflamation from blood tests. We have tried many things and now we are going to start Remicade on Thursday, I know there are so many different opinions about Remicade but seeing my child so sick and having to try so many different medications I feel this is a good option at this point. I am open to positive stories about Remicade as I have been dealing with alot of emotions lately, so good news and positive thoughts are always welcome.

 Reply posted for Momcat.

Hi there, I'm sorry your daughter is so sick.  My daughter was in the hospital over the summer for 10 days because she had such a severe flare.  After she got out she started Imuran (6MP) and was on all the other meds your daughter is on.  We then started the SCD diet which didn't work for us either.  She is feeling ok now (rollercoasters all the time) but her biopsies, colonoscopy and MRI all reveal inflammation.  Her doctor wants to start her on Remicade (in the future).  Has your daughter's GI recommended Remicade?  I know the potential side effects are horrifying, but sometimes it is the only route left.  I heard that hair loss does subside after a while too (on your daughter's current regimen).  Perhaps she can try a new hairstyle to hide it and I heard DermMatch (hair/scalp colored powder you apply) works wonderfully to hide any hair loss.  Have you looked into biologic therapy (such as Remicade) yet?   

 Reply posted for alanschachter.

College card sounds like the perfect card to play.   It may make a difference in getting the acceptance from one of her top picks.  Someone we know from a support group we used to belong had a sibling that wrote her college essay about having a brother w/CD and the family commitment...not only did it bring tears to your eyes, it was followed by an acceptance letter.   Who knows, did it tip the scale in her favor??  We'll never know, but it didn't hurt.

The girl who was Liz's "leader" really made a great impression.  She braided all the girls' hair, did their nails, told silly stories, encouraged them to try something new, and even let them stay up past lights-out!   Maybe just knowing that she can make a difference in a younger person's life may give her nudge to attend. 

Good Luck 

Lizzies Mom

 Reply posted for alanschachter.

I understand your daughter's need for being private about her personal situation. None of the children that Liz goes to school w/know about her "special belly".  The only kids that know are those that go to Camp Oasis. She feels she belongs and is just like everyone else.

It is hard to convince a stubborn teen (I was one) to do something you - the parent- wants them to do. I'm wondering if making contact w/some of the kids who would be in her cabin (if she were to go) could help. After all, with technology, all of them are texting/emailing, etc.  It would be a good chance to connect and get to know each other a little BEFORE committing to camp. With the privacy acts I'm sure the local CCFA office couldn't release the contacts to you, but they may be willing to place a few calls for the campers to email/call your daugher. If you strike out there, your gastro's office may be able to give your daughter's contact info to a patient or two who would be kind enough to chat.   

I asked Liz today what I should write to your daughter, here goes "There is no reason not go to camp.  There are doctors/nurses who know just the right stuff to give to you and for you. Camp is fun, they have great games, some activities are: arts/crafts, tie-dying, zip-line, pool and water slide, and even aqua. Aqua is when you get pulled on a tube with a friend by a jet ski in the lake.  One of my favorite things was pulling tricks off the trampoline in the middle of lake.....it was awesome!

Let your daughter know they don't sit around all day feeling sorry for themselves, sharing sob stories, and being bored. They are kept busy and have full itineraries each and every day (of course a bit of a break in-between, but never a dull moment. 

If your daughter wants to know more let me know. I'd be happy to talk w/her. It is honestly a great opporunity to make strong bonds w/other just like her.

Lizzies Mom

 Reply posted for Momcat.

Yes, we have been @ this for 7 yrs now.   It has been a long haul and a lot of learning, but the good days outweigh the not-so-good ones by far.

It is good that she is willing to join the teen site.  Just knowing there is a place for her to "vent" and be along with other kids just like her may be extremely helpful.   She may even meet a few teens that go to Camp Oasis.  There are a number of teens that go year after year and have formed life-long friendships.   Once they reach a certain age, they are put up in the ranks and can become leaders.  It's a terrific opportunity.

Let us know how she does @ her appt.

Lizzies Mom

 Reply posted for Lizzies Mom.

It sounds like you have been dealing with this illness for a while, I always like to hear from people who have tried many things.

I have been keeping a food diary and trying many different things but I guess until she is infection free nothing will be easy.

She will not go to the camp but she did say she will join the teens site and my hope is she will find someone her age to talk to and she will see that many kids are just the same as her.

We go back to the GI next week so we will see what he has to say.

Thanks for your thoughts and I will keep you updated.

 Reply posted for Becky G.

I am glad to hear you son is doing well it gives me hope.

As for the rest I know it is really trial and error and somethings do not work for everyone, it is going to be an up hill battle. I have kept a diary and she does not eat any dairy and a few other things but so far I can not find a pattern with food but I will keep trying.

I did speak with her GI about her hair loss and we are going to keep an eye on it but if it gets worse we will have to find an alternative medication.

I did talk to my daughter about Camp Oasis and at first she was excited and thought it would be fun but after a couple of days she said she did not want to go, I think it would do her wonders but she is scared and really has not been away from me before I wish she would give it a chance but she did say she will join the teens website and maybe find someone to chat with.

Thanks again for your reply and your hope.

 Reply posted for mygirlrj.

Thanks for your reply.

She was taking Colazol 3 pills 3x daily, she was on the pills for 5 months but she was having trouble taking so many pills and since she was doing well we thought we would try and switch to Asacol (less pills). Not sure if it was bad timing or if it was the Asacol but thats when everything changed. She had what we call a major flare a few days after starting Asacol so we went back to GI did labs and stool and then she was put back on Colazol, and Prednisone, Cipro, & 6mp were added. After one month Cipro was done. She continued with all three till about the end of November when Prednisone weened. She is still taking Colazol, 6mp and Iron and she just finished Flagyl this morning and she seems to feel a bit better. I guess I will just have to wait and see if stool tests are good and give her a few days to see what her body does. I am considering VSL #3 but wanted to wait till stool test done to get accurate results. I will also give the site a look as you can never have to much in. We see her GI every month and I am very confident in him and he really listens to what we have to say and discusses all options.

 Reply posted for Momcat.

I am curious what meds your daughter was taking when she was doing well?

If it had only been 1 year why did you and the GI decide to stop?

My daughters GI said that he thinks you should be in a solid remission on meds for at least 5 years before thinking of weaning/stopping?

How long has she been on the 6-MP for now? Did you also use prednisone while ramping up on the 6-MP?

You should try the VSL - it does work for many people.

I am so sorry she is sick and sad- I know what it is like.

Keep in touch with your GI, research your options

Have you checked out the website

www.healingwell.com?

Look under UC- tons of helpful advice

 Reply posted for Momcat.

My son was dx as a teenager. He is now in his mid-20's and has had quite a ride.  We have all learned a lot during that time. He is now doing well and in graduate school.

IBD tends to be very individualized. What works for one doesn't necessarily work for others.  However, for most, they do find the right combination and move on with their lives.

Diet may play a part - although it didn't seem to make much of a difference for my son.  Also, it is difficult for a teen to adhere - but it is worth trying some modifications.

6-MP can cause some hair loss. It will grow back. Or the hair loss may be related to the stress of being a teen with IBD.

Teens tend to a lot of emotional turmoil and it does help to have some sort of support group. Camp Oasis is excellent. There are a few good websites geared toward teens, but they are frequently populated by kids with the more extreme cases and may upset your daughter. There is a good chance she had found them already, so you may to talk to her about it. (I remember my son sitting at the computer with tears running down his face.)

Best wishes for a healthy future.

 Reply posted for Momcat.

I understand completely how both you and your daughter feel. Though Lizzie isn't a teen yet, I have one and just being a teen is stressful in this day and age.   Add IBD and days can feel unbearable/overwhelming to say the least.   Though all of our kids are different w/the way they react to meds/diets, etc., the first step in feeling better is finding out which foods are "triggers".  Unfortunately when my daughter was diagnosed, she was 4, I literally had to be retrained.   We had been living a "healthy" lifestyle, so I thought.   Turned out, WAY to much fiber for a little belly w/CD to handle.   So, we had to say bye,bye to many of her favorites......raw veggies, salads, lots of fruits, whole grain everything.  It took a lot of trial and error, but it did get better.  Have you started a food diary?   It was helpful for us to pinpoint which foods were no-nos. 

I also recommend trying to meet other teens.  It really could help her emotionally to know she isn't alone, there are others just like her.   Is there a support group nearby?   Camp Oasis is  a wonderful summer camp that CCFA offers and I can't say enough about.  Liz has gone since she was old enough (9).  Meeting other kids I think is sometimes more healing than anything....they feel they belong and can be themselves.  There is a "Kids/Teen" tab on this site.....that may help her connect w/others too. 

As for the amount of meds, it seems it varies by each case.   We tried no-meds and ended up flaring big time.   I have heard of hair loss as a side effect of some meds....the good news there is it grows back.

I hope your daughter and you find some relief soon.....we all have had our ups and down....Let us know how things are going.

Lizzies Mom