Daughter has Crohn's - lots of ???

Hi everyone from New Zealand! This is my first post - we are new to the Crohn's world...

My 12 year old daughter was diagnosed with Crohn's disease in March. Her symptoms began in December when she started suffering from stomach cramps, lack of appetite, chronic fatigue and eventually vomiting and diarrhoea - all of which lead to her weight dropping from 49kg to 38kg over these 3 months. She had an endoscopy, colonoscopy and MRI to confirm the diagnosis and was immediately put on 3g Pentasa, 40mg Prednisone & Losec per day.

We were completely blown away by the change in her after only 48 hours of treatment - the child we knew was back! She started eating, had solid bm's and loads of energy.

OK - present day.... Our first visit to her gastro specialist was this week and I am completely blown away by what he recommended and his overall attitude. Basically, he wants her to stay on the Pentasa and Losec indefinately and continue to wean off the Prednisone gradually so that she can go on Azathioprine long term instead. Her current dose of Prednisone is now 15mg per day and she is still symptom free and healthy in every way. She eats anything and everything, is full of energy and has solid once daily bm's.

My concern is the possible side effects of Azathioprine on someone so young. Also - am I naive in thinking that as she is free of pain and has no other crohn's symptoms, why we need to go on such a powerful immune suppressant at this time?  Isn't it overkill??

When I asked these questions, the specialist's response was that without these drugs she would most likely suffer a flareup and it is better to prevent this happening by taking this drug. I understand that Pentasa & Losec have few significant side effects.

Has anyone had much success taking just Pentasa and natural remedies (fish oil, slippery elm and pro-biotics)??? Or should I just take the advice of the specialist without considering the alternatives because he is the one who should know best.

BTW - here in NZ we have a rather dire Health System (albeit free) and changing specialists isn't really a practical option.

Thanks for listening.


nzers

Hi and Welcome. I'm sorry to hear about your daughter. I'm so glad that your daughter is feeling better for the time being. Pentasa did not work for me, but it does for others.

You could take a wait and see approach, meaning wean her off of the pred., and see if you can keep her symptom free with just the pentasa and losec. If not, then you are going to have to consider the imuran. I guess I wouldn't be too concerned about having her take it. Most of the side effects that you read about come from a much much higher dose that they give transplant patients, and not the dose for crohns especially someone her age. Just remember that the imuran does a great job at keeping someone in remission but usually needs help getting there. Meaning, if she flares up on just the pentasa, then she more than likely might need to go back on the pred. until the imuran kicks in...just something to be aware of.

If you do go the route of the imuran, make sure that they monitor her blood. Good luck....keep us posted.

I've often read and heard that GI's tend to underperscribe meds which do the patient no good, so I think that if she's in remission then it's imparative you follow this GI's suggestions, he seems to know what he's doing, he got your daughter in remission and that says alot compared to most GI's around the world.

Personally, as far as her eating habits, I'd have her avoid processed foods and fast-foods, caffeine, animal fats, refined sugar, these things are know to exacerbate IBD symptoms and it would be ashame if she had a relaps because of ingesting "junky foods"...just my opinion...I've stopped eating all junk and although I have complications with my CD I'm much better off than what I was when I was eating/drinking junk and unhealthy foods...especially at her age, it would be a good habit for her to get into now as it would be easier for her to maintain throughout her life since CD can rear it's ugly head at anytime, the more she does to avoid future flare ups the better chance she can live a healthier life and at least in future flare ups they may be able to treat them easier.

:)

I'm going on 20 years old... I've had this disease for over a year... and I would do anything, ANYTHING to feel better. I would follow the doctor's advice...


Crohn's disease is a chronic disease. It's something your daughter will have for the rest of her life. If she can stay like she is now simply by taking Imuran and Pentasa, then you really need to keep her on it. It may have bad side effects (I haven't suffered from any bad side effects from Imuran yet), but if it stops the suffering, it's worth it.


I was in remission for a few months at one time. Man, I miss that. Right now, I've been in pain... and I've had so many bathroom problems. Dunno what's going on... :(... Do I need stronger medicine? Am I partially obstructed maybe? Is it the ovarian cysts? What?


The only natural therapy you listed that would probably do some good is the probiotics. But you need to do research... (I can tell you with certainty that the Garden of Life "Primal Defense" probiotic is junk. Might want to look into something called VSL #3... I've heard good things about it... and it appears to be backed by research... but... really research it carefully. You want to make sure if you're going to give your daughter something, that it can actually help.)


I hope your daughter stays in remission for a long time, regardless of how you decide her treatment plan should go. 12 years old is pretty young... :(... It always makes me sad to think of kids that young going through some of the things (or worse) that I have to.

nzers...welcome to the board, though I'm sorry you have to be here. It sure sounds like you've been through the mill trying to get a diagnosis for you daughter. We had a somewhat similar experience with my son as he had been anemic for a year and a half and no one knew why. He wanted to continue his sport (swimming) but was unable at that time because he felt sooooo lousy. We went from doctor to doctor and they told us "standard iron deficiency anemia", and then they would run down the list once again of what we should be feeding him. I explained over and over that nutrition has always been top on the list and that he eats very well, so I felt he was getting a *very* high-quality diet. Not to mention we'd had him on iron supplements for *months* and had seen little improvement. Ultimately (within about a 6 week time frame), he began to drop weight rather quickly and then began a full-fledged flare. It was pretty clear then what the problem was.

I am much like you in that I am so skeptical of drugs. Our pediatric GI initially wanted to put my son on Imuran (after the 8 weeks of prednisone), but we pushed for a "wait and see" approach because he was doing so well. Our GI was open to this and stated that some folks get along fine throughout life with the mildest of medications (Pentasa or sister drug, Asacol). I realize that my son may not always be that fortunate, but for now knock on wood, this approach is working. He *seems* to be in remission, has grown a couple of inches, and in the early fall went back to competing in his sport. Oh, and needless to say, he is no longer anemic.

We all (family of 4) now follow The Maker's Diet (book by the same name) and incorporate aspects of the Specific Carbohydrate Diet (SCD, from the book "Breaking the Vicious Cycle"). These two seem to be the most popular among those who choose to address diet. (I have this forum to thank for educating me on this! And lots more!) That said, we didn't start the diet until sometime after my son had come off prednisone--he was eating everything that wasn't nailed down at that time! He also takes lots of supplements. I personally believe they can't hurt and they just might help. Especially probiotics and digestive enzymes. And no, GOL and Primal Defense are not junk, they're simply one of many choices on the market. Thankfully, there are many brands to choose from. I read somewhere to choose a multi-strain probiotic with at least 20 billion cfu.

Oh, and one more thing. I don't know if this is typical, but when my son came off prednisone he had several days (4?-5?) of what seemed like a mini-flare. I called our GI's office and they told me to wait and see; that this sometimes happens as the body adjusts. I'm glad they kept me from the panic I was working myself into, because his symptoms did resolve! It was probably about that time we started the probiotics, so maybe that helped.

Feel free to email me personally if you'd like. It's nice to have a mom network! I hope she continues to do exceedingly well!!!

Absolutely. Uncontrolled Crohn's can lead to scarring and malnutrition, and, as cdmom said, can lead to surgery and other severe problems in the future.

From what I know, the NZ health system is very similar to ours in Aus. gacrohn's mentioned Remicade or Humira - these are powerful drugs that can be very effective in getting the Crohn's under control. However, here in Aus (and I think NZ as well) your daughter is very unlikely to be given these wonder drugs until she has tried (and failed) Imuran. Imuran takes several months to work and there's a chance she'll start to flare while weaning off the pred, so the longer you spend trying to decide whether to try the Imuran, the longer she may need to suffer if she does start to flare.

If your daughter does go on the Imuran, make sure she always wears a hat outside. Those of us who live under the hole in the ozone layer need to be very careful about sun exposure when we're on these powerful drugs.

Best wishes to you both

Ivy (in Aus)

For the past two years I was in remission with just taking Asacol (it's similar to Pentasa). It was a nice two years. Only know I'm in a sever flare up, and starting steroids. Not sure what will be next. But I don't think in my case I'll ever just be able to take Asacol alone and expect it to keep me in remission. These drugs scare the day lights out of me too. Some have that small risk of Lymphoma, and that runs in my family. So it's even double scary for me.

But now I've got symptoms that are going outside of my intestines. Swelling up of my skin and joints. This has been almost more scary and awful then the diarrhea. So I'm going to do whatever my doctor suggests. We have to do what we have to do to control this awful beast. Best of luck to your daughter, my heart goes out to her, havng this so young.