New Member.......Mom of 16yr Old and needing Answers......fightingcrohns.

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Anyone who can help, I am new to this (talking online with people).  My daughter was diagnosed with Crohn's in Feb. 07. She is 16.  She takes pentasa, prilosec and has a b12 shot weekly.  She just came off entocort and was put on mercaptorpurine( i think is a 6mp).  Now because we are still are having flareups regular her Doctor wants to stay on pentasa and start remicade. How long have you been on this?  I am wondering if it is too soon to start such a drug.  We have not tried any other meds or natural remedies.  Does anyone have any suggestions?  Also, how many crohn's patients are on disability?  My daughter has already missed 31 days of school the 1st semester.  Lucky she is a straight a student and at a small private school.  She had planned on being an orthopedic surgeon. I know she may have to change careers but at this point I don't see how any crohn's patients go to college. fightingcrohn's

 "fightingcrohns" posted this and I moved it as it was buried in another thread......Lyn. 

Hi moved your post to here so you have a thread of your own and ppl will give you the input you are lookin for ......

This is a great group of ppl and they will help if they can I am sure of it ...Lyn

We have not tried any other meds or natural remedies. Does anyone have any

 suggestions?.........fightingcrohns posted this was buried in a thread.... 

Hi ! Welcome to the forum, but I'm sorry you have to be here! I can't answer all your questions, but I can share our experience.

My son is the same age as your daughter and diagnosed shortly after her--in June, 07. He was on medication for about a year, but was weaned off this summer and told he is in remission. I understand this disease is very individual, but tens of thousands of people world-wide have had success using a carb restricted diet to manage this disease. The book "Breaking the Vicious Cycle" by Elaine Gottschall explains the diet she named the Specific Carbohydrate Diet (SCD). Our pediatric GIs gave us no information whatsoever about this--I learned about it here on this forum. It is conceivable that your daughter could be helped significantly by this diet. My son follows it and we're thankful it has worked for him. Feel free to email me personally by clicking on the envelope under my name to the left if you would like any more info!

Many here do take supplements like fish oil and probiotics. I feel like the probiotics have helped my son.

I hope your daughter feels better real soon! This is tough for everyone, but especially teens! You have found a great place for support, though!

Post Edited By Moderator (Howlyncat) : 11/25/2008 6:45:28 AM (GMT-7)

I do think it is possible to get higher education with this disease. It just might take longer then normal to get a degree. Make sure she registers with disablity services. She will work out what she can and cannot do.

The main thing I find is the problem with education and then work is that I have been in a flare for 3 years and have not been able to completely get out of it. I think that is the most important thing is to get the flare that she is currently in under control. I would do whatever it took to get that squared away. Including taking remicade. (It didn't work for me, but injected MTX did. Medication with crohns is a very personal thing. It is a highly individualized disease.) Unfortunately alternative therapies usually are a little slower and as with any med they can make you worse not better.
Alternative therapies do work great for some people and I do hope they work for your daughter, but I think they work better for people who do not have severe crohns (in other words they work the best for people who have mild to moderate crohns). I was going about 30-40 times in a day and vomiting a couple times a day, needless to say I could not work or go to school during that time (medically withdrew) and also I ended up in ICU because I about bleed to death, because I decided to try Specific Carbohydrate Diet. I do not want to scare you with that, just want to bring awareness that getting the flare under control is most important thing to do.   

It really all depends on what your daughter's disease responds too, and that is an experimental process so naturally it takes time.  Plus I think crohns is a highly individualized disease...so she could have this one flare and then be great for the next 20 years. There are many different degrees of severity with this disease.

fightingcrohn's,
i'm 21 and was just diagnosed with crohn's this august...my CD is moderate to severe..i ended up in the hospital a couple weeks after my diagnosis because of all the blood i lost and with dehydration..everyone is different though! and most people never get that bad so please dont let that or anything else you read on here scare you or your daughter! i know alot of people are really into natural remedies and certain diets, and i totally respect them and believe that they can help some people, but not looking into what modern medicine offers today is just plain stupid..yes there are risks with drugs like remicade (like the increased likelihood that you may develop some lymphoma cancers), but the benifits usually outweigh the costs..i'm a senior in college and a psychology major...i've taken many classes that i know by now that these studies that are done on these drugs have to mention every single side effect and make it known that there is a risk for developing cancer, even if it is extremely small, they have to let you know, even though you're odds are pretty low for getting it...i'm on remicade now and i guess it's working! i'm not really sure if it was the high amounts of prednisone i was on in the hospital, the bowel rest (aka not eating for weeks lol), or the 6mp that im on now...just try to be open to every option, even if it's a drug like remicade because it may end up changing your daughter's life for the better!..as for your comment about college and your daughter's career goals, i've been there lol...i had to drop out this semester because i was in the hospital for over a month and just so weak when i came home..i'm just starting to feel normal now!...you can take medical leaves in college and there are even programs that you can apply for that will pay for things like books and even some college costs if you have a certain medical condition...VESSID is one i can think of, not sure if it's national though, but those are things you can look into!...i also had to cancel taking my GRE's this fall because of my hospitalization...i want to go to grad school to become a clinical psychologist and there is no way in hell that i'm going to let crohn's stop me lol...i honestly think that you can do anything once you learn how to live with this disease and once you have it in control through meds and perhaps diet (i honestly plan on eating whatever i want to sooner or later, my dr. said he's working for perfection with me, so there's no reason why i cant eat the foods i love again!)...i had to learn this semester that i need to take this time to take care of myself and get healthier so i can go back to school and prepare for grad school...but once again everyone is different, some drugs or diets provide help for some people and not for others..the only stressful thing is finding out what combination works best for you, but once you find it you can live a normal and happy life! best of luck and don't let any of the horror stories on here scare you! the best thing you can do is educate yourself about everything to do with crohn's..it's helped me and my mother really push for certain things with my doctor...good luck and i hope your daughter starts feeling better soon!!!!!

Welcome to HW. This place has saved my sanity many times, and I'm glad that you've found your way here for help too!

I was diagnosed with Crohn's my senior year of college. I was very, very ill, and my crohn's was considered "severe" at that time. Because of the severity, and the lack of a "quality of life" - my GI opted for what some people call the "top down" approach. This means that his highest priority was to save my guts as quickly as possible to prevent surgeries, and that meant starting at the top of the drug chain. He suggested that I begin Remicade immediately. With severe inflammation, I attempted the SCD diet while I awaited approval for the Remicade. I think I was TOO torn up for the SCD to help, but I stuck with it for almost 60 days. I was one point away from needing a blood transfusion when I started the Remicade in December, and by the following February I was back to school and working full-time. I don't think ANY other route would have gotten me on my feet so quickly and reversed the damage that had been done.

That being said, I never viewed Remicade as a "long-term" solution. It has since stopped working, and I've moved on to other more "natural" options such as diet modifications, probiotics, and digestive enzymes. I have found a combination of things that involve a little work, but that allow me to live a normal life again without the scary biologic meds like Remicade and Humira. Perhaps a "little work" is an under-statement - this disease is A LOT of work if you want to live naturally. You'll find all kinds of information about food allergy testing, elimination diets, the SCD diet, etc. Some of these things are very difficult, but if you're willing to put in the effort they can hold some solutions. Some people are not willing to give-up certain things or put in the elbow grease, and I can understand and respect that too. I have reached times in my life with this disease where I preferred someone just hand me a pill to make it go away for a while. You need to carefully monitor your daughters mental health, because the ins and outs of this disease can really bring a person down. Make sure she knows her limits, and always make sure that she's comfortable with her treatments.

Once your daughter's disease is under control, she will be able to become ANYTHING she wants to be. Staying mentally and physically healthy and happy are totally possible with crohn's. It's just going to take a lot of work, a lot of communicating, a lot of research, and a good gastroenterologist. You're already doing an awesome job at reaching out for answers, and as long as you keep that pro-active mindset you and your daughter will figure everything out.

I wish you the best of luck, and come back as often as you need to - even if it is just to vent!

Hi and Welcome to the forum. I made it through college without being diagnosed and I had already lost some of my intestine. I found that talking to a psychologist helped with the PTSD I had from all the crap that went with losing the intestine. Still, she'll need to be careful about her stress level. The GREAT thing about college is it will offer her some easy exercise courses (like dancers' stretch or water aerobics) which will help so very much with all sorts of pain as well as keep her stress level low. Stress is kinda awful in accordance with this disease.

Learn everything you can about all the medicines. Have your GI sit down and explain everything about your daughters particular version of the disease so you can't mistake anything. Talk to social services about disability. Mostly, good luck for you and your daughter. Also, there are usually local meetings at hospitals/churches specifically FOR Crohns and UC. Usually once a month, they are part seminar and part therapy. Either way, its a resource.

This is my first post EVER!
Dear Mom,
I want you to know that I really feel your pain. You are only as happy as your least miserable child! My son is now 14 and we have been dealing with this crap for 4 1/2 years! I have tried everything out there that is natural. I am sure that had I not been so proactive, things might have gotten worse sooner. If you decide to do the elemental diet thing, there is a company in Canada that makes one that is actually palatable. It is called Absorb Plus and you can order it online. It really helped my kid gain weight and put him on the right track.

I have always been averse to all of these nasty meds. He has never had steroids, but he has been on Mercaptopurine for 4 years. However, we were finally up against a wall at the end of June. George was down to 82 lbs., which is what he weighed in second grade!! After much debate and hemming and hawing, he went on Remicade. Within 3 days we saw a HUGE difference in him. We felt like we had our son back. If only we had gone on it sooner.

There was another Mom in the infusion room who pulled me aside. She said that she was afraid, too, but that she now has a daughter who does not feel like she has a chronic illness. A normal life and feeling good is EVERYTHING. There was another girl in there who has been on it for 5 years. She is about to start dental school. Your daughter does not need to give up her dreams. If anything, she will be a much better doctor having seen it from the other side.

George has now been on Remicade for nearly 6 months. He has gained 25 pounds. He is still on the 6 mp, and he has a hard time going more than 6 weeks without an infusion. He is having lower right side pain, so that is why I came on here. He still says that Remicade has been the best thing that has happened. It doesn't work for everyone, but when it does, it is a beautiful thing.

Best of luck to you! Let's all hope that we see a cure soon!

Another thought: Don't forget to take care of yourself! I was so absorbed in my kid's issues that I nearly became a train wreck myself! Tennis was my first outlet, but competition sometimes can make things worse! I found refuge in yoga. Yoga is fantastic for relieving stress. Yoga would probably be good for your daughter, as well. I was so skeptical of all the breath work at first, but I have kept it up for nearly two years. I meditate and can fall asleep any time, any where! There are lots of good books out there, too, that help to keep it all in perspective.

Good luck with everything!

Kathy-George's Mom

Hello,

I am sorry to hear about your daughter. I have been on remicade for just over a year now and am finally in remission without the use of prednisone. My doc had to double my dosage of remicade in order for it to work, and it has (finally).

Good luck with everything and please give us an update on how your daughter is doing!

-Emma