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My daughter was diagnosed in March 2010 with UC, she was put on Colazal (750mg x 3 x 3 times a day) she was doing awsome with that so awsome that in July we decided to change her to a lower medication....... all went down hill and she was put back on Colazal but it did not work. She has been so sick since July and has been trying a few different medications but some had bad side effects for her. She has lost 15 lbs in 2 months. She is now taking Colazal (as above) Ciprofloxacin (500mg x2 times a day) 6MP (1 x daily) and Prednisone (40mg daily) that just breaks my heart to see her have to take so much medicine as well as she is getting such bad acne and her face has gotten quite a bit larger I guess from the Prednisone not the easiest thing to deal with as a teenage girl. Although the bloody stools have stopped nothing else has, she goes to the bathroom about 4 times a day with urgency, headaches, stomach pain. There has not been one day since July that she feels good. Whats to come???

 Reply posted for Momcat.

My daughter is also 14 and has UC.  She was diagnosed 2.5 years ago.  This summer was very rough on her as well.  She just did 7 days inpatient and is finally doing a little better - but still has a long road ahead of her.  I hear your frustration - I have felt it too.  If your daughter would like to chat with someone walking the same road as her, she can email my daughter, using my email address.  Sometimes just having someone who understands helps.           

 Reply posted for Momcat.

I think you are taking a step in the right direction by preparing foods and home and educating yourself w/SCD.  

Flares are different for everyone.   I hear some people lasts months whereas some just seem to disappear in 2-3 days.  It seems to be very varied.  

As for Remicade, I agree with the previous post, save that for your last option.   I know some people don't want to question their docs opinion, but I have learned to quite efficiently.  Exhaust each and every possibility/combination of other meds, treatments, supplements, diets, etc., BEFORE starting an immune suppressing med.   This is only my opinion..... (I also want to extend my apologies in advance to all those parents that have had no other choice, I can only imagine how hard it was for you.)   I do know people that feel they have "regained" their life by it.   Sometimes it is the best/only choice.  In your daughter's situation, it has only been 2 months.  It took a lot longer than that to get to the point of diagnosis.  It takes time to adjust and heal too. 

There is lots and lots to learn, take in as much as you can and know there are lots of people just like you and your family.   Let me know how things are going.

Lizzies Mom

 Reply posted for Momcat.

My daughter's 2nd flare didn't last as long as her first.  I'd say it was about 3-4 months until she was finally feeling better but everyone is different.  When she had her 2nd flare, the doc was saying if she didn't get better she was going to have to go on Humira or Remicade.  That's when I went to Whole Foods after reading about different probiotics and diets, etc. on this website.  She started taking Ultimate Flora Critical Care 50 Billion and was sooo careful with her diet and she was feeling better within a few days!!!!!  I'd try all the alternative ways before I put her on Remicade or Humira.  The diet takes time because you have to kill all that bad bacteria in the gut but it will eventually help.  The probiotic will put the good bacteria she needs back into her gut.  It's not cheap.  I just found it on sale for $51 at Sprouts but at Whole Foods it's $64 (that is for a 60 day supply and needs to stay in the refrigerator).  I know it's so hard for teenagers to eat a certain way when they go out with their friends places but my daughter really watched it and it paid off.  Please let us know how she is feeling.  Please know that you and your daughter are not alone in this.

 Reply posted for Lizzies Mom.

Thank You so much for your reply, its nice to know other parents feel the same way you do, I have had my share of tears. There is just so much to know and what works for one might not work for the other. I have down loaded the SCD Plan and I am just starting to read it. I also have started cooking all of her food myself, nothing processed or prepared so we will see how that goes. I do have a couple of new questions, how long does a Flare usually last? and what do you know about Remicade? as I was told that might be our next step as it has been 2 months and she is no better.

 Reply posted for EZ.

Thanks for the info, our daughters sound like they had almost the exact treatment. I have started making all of her food from scratch, she is not very impressed but it is better for her in the long run, I can't wait till she feels good again.

 Reply posted for Momcat.

My daughter has UC diagnosed at 16 (4 years ago).  She has been in the same situation with all the meds. Your doc is trying to prevent a flare.  The Cipro will just be for a short time (my daughter was on Flagyl).  She couldn't take Colozal but she's been on Asacol and now Lialda.  She couldn't take 6MP but was on Imuran (now the generic form called Azathioprine).  She was on Pred (40mg tapering off 5 mg per week).  She split the dosage up 20mg in the morning 20 mg in the evening tapering down the following week 20mg morning 15 in the evening then the following week 15 morning 15 evening, etc.  The doctor wrote the dosage and how to take it on a piece of paper and we left it on the refrigerator so we wouldn't forget.  He also said no more than 2,000mg of sodium per day (that is why her face and body is swelling).  My daughter kept a food diary and only gained 3 pounds.  She did get acne also (she had it before she was on pred but it got MUCH worse).  You can go to a dermatolgist and see if she can take Differin 3% or some other topical type Rx for acne.  I know it's tough but the symtoms of Pred will get better as her mg decrease.  My daughter also got VERY moody and had a lot of energy.  My daughter is on a probiotic called Ultimate Flora Critcal Care 50 billion and also watches her diet (no junk, processed, no added sugary foods). 

 Reply posted for Momcat.

Better days are to come!  I know it doesn't seem so now in the thick of things, but they are ahead.   It is  just a matter of figuring out what works for your daughter.  Many times it is a combination of diet, vitamins, supplements and yes, sometimes prescription meds. 

My heart breaks for all of our children.....14 is a tough age, who the heck should have to deal with a moon face (but that is temporary).  Try starting a food diary. At first I thought the doc was crazy suggesting it, but it really did help in pinpointing what was a definite no-no.  Many people have had lots of success w/SCD...maybe check into it.  We follow a  low fiber/ low residue diet and eat organic.   It was odd in the beginning because we used to consume waaay tooo much fiber.   We had to cut out a number of staples in our "old" lifestyle and it took a lot of time and process of elimination, but it helped.  

I know it is hard seeing your daughter trying to cope....I used to  be strong all day for the family and once they were in bed, I'd ball my eyes out in the shower.....nobody could hear me and it was a great release.  

Be strong, stay the course and the pieces of the puzzle will start to fall into place.  Let me know if I can help in anyway.....I've been @ it for a number of years and I'd be happy to help.

Lizzies Mom