Teen daughter diagnosed just this week...

[reba]

My 17 yr old daughter was diagnosed with Crohn's this week.

Her story: Looking back, I now wonder about early symptoms. Appendectomy with really rough post op course 4 yrs ago. 2 hospital admissions for "gastroenteritis" in the preteen years...mainly vomiting that wouldn't stop. Wonder if all that might have been related? Who knows. Guess you can drive yourself crazy with that...
Anyway, she has had what she would call a "sensitive stomach" for years. Complete emptying about monthly without known trigger. Then about 9 months ago started with lots of gas and almost constant stomach pain. Other symptoms of joint pain and fatigue. Was directed to Enterolab for stool testing which was strongly positive for gluten intolerance. This led to last 6 months of gluten free eating which initially gave relief but quick return of symptoms. Gastro doc: negative celiac panel. Told to try eliminating dairy and take lactaid. This went on for months until finally went to new gastro doc who immediately said symptoms sounded like Crohn's. Endo/colonoscopy this week with result of "extremely mild" Crohn's in distal ileum. Treatment recommendation is Budesonide for 2 yrs and then repeat endoscopy.

Not sure why jumping to steriods...I think doc thinks best med due to location of disease.

I am a nurse but as a mom I NEED to research this to find the best treatment option. My initial phone conversation with gastro when he gave diagnosis was a hurried phone conversation and I was overwhelmed with the news. I hope to talk to him next week to get better understanding.

I have read SO MUCH in the past few days that my head is spinning.
Why is there such poor and confusing information about such a common disease? :thumbdown: Or it is just me?

My biggest question is: Is this disease always chronic and progressive? Doc said "extremely mild" but how did he really stage it and how do we know what the likely course will be? The reading I have done seems like there is such little control and most people take their drugs and ride the rollercoaster largely in the dark hoping for the best.
It also sounds like the medical community says diagnosis=drugs and diet is not a factor but, sure, avoid something that doesn't agree with you. It is hard to accept that an inflammatory disease of the GI system isn't really influenced by what you put in it. I WANT to find some ways to control this besides just resignation to long term steroids and progressive disease. Is that unrealistic? The friends I know who have Crohn's have such challenges and advanced disease. Is it always that way and is that my daughter's future?

I have ordered some books to read but am frustrated with anything printed over 3 yrs ago. Surely this horrible disease has ongoing research that info that old might be obsolete? I want that to be true!

Ok, jump in and tell me whatever you think I should know. This is new and I am trying to gather info, act as my daughter's advocate, and I have a strong sense of wanting to protect her from how scary the facts can be...but I know this is really her issue and not mine. :frown:

How much time should I spend researching alternative treatments? I have read posts here and there on this (huge!) forum...didn't find any testimonials of cures from SCD or fish oil or raw foods or...cure of the day. Are they out there???

We are grateful this has been diagnosed now and not when she is off to college next year...hoping to find a treatment plan so it is stable and manageable.

I am sad and frustrated and...overwhelmed.

thanks

 

[Rebecca85]

No one who knows what they are talking about will claim to be cured of this disease. Some people have tried the scd, of those people some gain complete remission, some see an improvement, some don't. Some people have tried other alternative treatments with similar results. Even the pharmaceutical treatments are hit and miss sometimes! That's why this disease is so tricky, everyone has different symptoms and responds to treatments differently.

Steroids are often a first line of treatment, because they are the most effective way of getting someone into remission. Budenoside has less side effects than the other main steroid (pred). But I would still be concerned about planning to keep your daughter on them for two years. Normal protocol is to take the max dose until symptoms subside, then slowly taper off. Usually a milder med (such as Pentasa) is added to help stop the symptoms returning as you taper. The problem with steroids is, although they work, the body can become dependant on them, and they can have nasty side effects such as thinning the bones (is your daughter taking calcium and vit D supplements?).

The disease is categorised according to the amount of intestinal tract that is affected, and how it is affected. So plain inflammation is the mildest, then ulcers, then fistulas. If your daughter's disease is mild, you may find that she can maintain remission without meds. But you do need to be careful because you don't want inflammation going untreated as it can scar.

Anyway, I hope that answers some of your questions. Have you checked out our wiki yet? It's at www.crohnsforum.com/wiki/crohns-disease Any more questions, just ask!

 

[Dexky]

Welcome Reba! There are those whose symptoms remain mild. There's certainly no way to know for sure if your daughter's former symptoms were crohns related, but my son was much the same. I have even used the same description, sensitive stomach, on many occasions. If she has had it all that time and managed, she will more than likely be better off now. I hate that my son takes medicine daily and will likely have to for the rest of his life, but he is so much better off now, with treatment, than before when we had no name for his "sensitive stomach". I wish her well. Good luck to you both!!

 

[reba]

Thanks to you both!

I hope to meet with the gastro this week before starting meds to better understand how he diagnosed and staged the disease and why he is recommending a long course of steriods. I will likely get a 2nd opinion before starting meds but I don't want to wait too long...

Rebecca, looks like you are fairly new to Crohn's but sounds like you have learned a lot in a short time! Thanks for directing me to the Wiki. Really good info there.

 

[karrieg]

Hi and welcome Reba,
So sorry to hear about your daughter. We are also in the process of trying to diagnose my 15 year old daughter. Wed. we go for colonoscopy, etc. She has some of the same symptoms as your daughter- joint pain, abdominal pain whenever she eats, diarrhea and I also have CD.

Diet may help and may not is my conclusion from personal experience and hearing others stories. I tried a natural supplement called UltraInflamX by metagenics and it put me into remission with no meds. My case is also mild which is why I think it may have worked for me. I first tried SCD and it only helped a tiny, tiny bit if at all. I have found that for me stress is the number one trigger. I was eating VERY healthily (but under tremendous stress) when I first had a major flare and at other times, while in remission have eaten terribly (like over the holidays when all I eat is sweets!) with no ill effects. What I gather is that if someone has allergies and intolerances, sometimes they do better if they stay off those things but it is so different from person to person. My daughter is allergic to wheat but even staying 100% gluten free for weeks once she began with the pain didn't help.

Since you are a nurse, you may appreciate the thing wikipedia has on Crohn's. I found it very interesting. Blessings to you and your daughter.
Karrie

 

[karrieg]

Oops, I just saw someone else also directed you to wiki! But i am just talking about the wikipedia entry that comes up when you do a search on Crohn's- I don't think it is the same as the forum.

 

[reba]

Thanks Karrie

I am still on this darn computer reading about Crohn's!

I hope you get answers when your daughter has her scope. I guess she has the benefit of a mom who has been through all this.

Thanks for your input re diet. We may try the SCD. It's hard not to try....

Makes sense about the stress!

I will check out Wikipedia!

Thank you!

 

[MADiMarc]

Reba,
Welcome. I know what you mean about wanting answers now, right this minute! I was diagnosed at 19 which was over 25 years ago. I rushed to the local medical library.

I am not telling you not to try alternative treatments or to try this med or that med. I can only tell you what they did (or didn't) do for me.

I think you are correct in being afraid of steriods. They saved my life but they can and do have serious side effects. I have the bones of a 90 year old. However, I am a breathing 90 year old on the inside and a 44 year old "tough, old bat" in real life!

Alternative treatments (and I have tried many over the years) have not worked for me. I ate nothing but broiled chicken and white rice for over a year. Low res, right?? No effect for me except that now I hate chicken and rice. Multiple suppliments and the like for a while with no effect either.

I too was diagnosed with "mild" Crohn's. What ever, it hurts and you feel like crap. I did make it through undergrad and grad school with the support of my husband though. I have a wonderful daughter and two beautiful grand daughters.

I have gone through all this because I was close in age to where your daughter is when I was diagnosed and I wanted you to know that she can do okay. She can have a wonderful, full life and deal with this garbage.

I hope you find your answers but I don't think you will find the one you are looking for. If I find the "magic bullet/pill/answer" I will surely let you know.

Wishing your daughter the best of luck,
Michele

 

[reba]

Thank you

Sounds like you have made the best of your situation...good life philosophy!

I hear you on the no magic or quick fix.

It is my personality to do "due diligence" in educating and researching...for myself and as my daughter's advocate. If it all ends in take the drugs and accept that there is not a heck of a lot of do in controlling the disease progression then I'll go there...but definitely not ready to accept that yet!

I am grateful for finding this forum...lots of folks who have walked the road before us. Thanks!

 

[Cat-a-Tonic]

Hi Reba, welcome to the forum. I can't add much to what was already said, except to say that you should definitely write down all your questions to ask the doctor, and have your daughter do the same. I find that my mind goes blank when I'm in the doctor's office and it's a waste of an appointment if I don't have my questions written down in front of me. And as far as diet goes, has she kept any sort of a food or symptom journal? There's an entry in the wiki section about how to keep a food diary and what to include, so you may want to check that out. Then she can track her symptoms over time or see if there's any pattern of what specific foods seem to bother her.

I agree with Rebecca and others who have said that 2 years seems like quite a long time to be on Entocort (budesonide). I'm currently on Entocort myself and I believe the recommended time to be on that medication is about 3 months. So I would definitely ask the doctor why he thinks 2 years is appropriate! If you don't feel the doctor is taking you seriously or if you don't think he knows what he's doing, definitely get a second opinion. Good luck and welcome!