My Crohns Story

[crohnscoulton]

Hello everyone, I am 14 years old and have had crohns for almost a year now so i thought i would share my story.

My journey with crohns began around thanksgiving of 2010. I started to have minor stomach cramps which got worse and worse and lasted about three weeks, then suddenly stopped. I assumed it was just a bug and didnt think much of it. After that i went about four months or so with no symptoms and then it started to happen again. The pains got worse and worse but I just tried to ignore it and didnt tell my parents until they really started to bother me. I got referred to a gastroenterologist and he thought it was an ulcer so i was put on a med that coats your stomach (i forget the name) and a low acid diet but everything just kept getting worse. I started to get diahrrea, mouth sores, skin sores, weight loss, and anemia. I was really in denial and tried to cover up most of my symptoms so i seemed less sick than i really was. But finally i got so sick i could barely get off my bed, had 10-20 bloody stools a day and developed a fistula so i went in for a colonoscopy. When they showed me the pictures of my intestines i was very shocked. They told me i had severe crohns and started me on prednisone. I had no idea what crohns was so that night I went home and did hours of research on it. I was really worried about my future but 2 weeks into the pred i felt significantly better and was able to eat again. After i weaned off the pred i began SCD along with methotrexate, lialda, and some hollistics. Ive been pretty much in remission since but the SCD is really taking an emotional toll on me. I dont like the foods i can eat and i spend more time cooking than I do spending time with my friends and family or doing things i love, and im a 14 year old boy! So two weeks ago i went off the mtx and started ldn. I can already notice a difference with the ldn. Im getting better everyday and i hope the same for all of you here!

 

[Kip1]

Hi
Welcome to the forum.
So glad you have found something that works for you.
Thanks for sharing your story.

 

[David]

Hi there and welcome I'm VERY impressed how much you've learned about your disease. Good for you! Did your doctor come up with the idea of LDN or did you find that yourself?

It's great to have you here. See you around.

 

[crohnscoulton]

The ldn was my idea. I wanted to go off the scd but didnt like the biologics, imuran, etc. We read about ldn and how safe it was so we asked my doc about it. It took a month or so before he decided he woud let me try it because he doesnt have anyone else using it but now he is very interested in it.

 

[David]

Very impressive What didn't you like about the biologics or Imuran?

I hope the LDN does the trick for you! And kudos to your doctor for being open to it.

 

[crohnscoulton]

The side effects really scare me, mostly the cancer. I know the chances are low, but I would rather hold those off for a last resort.

 

[David]

Fair enough. What sort of monitoring plan is there to ensure that the LDN is working and you aren't experiencing chronic inflammation that might lead to issues down the line?

 

[crohnscoulton]

I guess just seeing how I feel. As long as I dont have diahrrea, pain, fistulas, or blood and my energys good then im happy. I also have to go in for another colonoscopy in july. Is it possible to have chronic inflammation without feeling symptoms?

 

[David]

Indeed it is possible. And that chronic inflammation can in turn lead to scarring which leads to strictures which leads to fistulae and other complications.

The keys are reducing inflammation and promoting intestinal mucosa healing. THAT is when you're in business for the longer term.

You're obviously a wicked smart guy who is taking control of his disease which is super impressive to me. Open that dialogue with your doctor. "Hey doc, how are we going to make sure I'm getting rid of the inflammation and promoting mucosal healing?"

 

[Angrybird]

Hello and welcome to the forum :bigwave: I am glad you have decided to join and am very impressed with you attitude towards your health - good for you

I hope your new treatment plan does the trick.

AB
xx

 

[Snap]

Welcome C.Coulton! Glad to see that you are jumping in and being an advocate for yourself----awesome! Wow, though, you must have felt absolutely horrid--glad that you are doing better---keep moving forward! Snap:us_flag:

 

[ThatsWhatSheSaid]

I realize it hasn't been very long, but how is the LDN going??? I am really scared about biologics too but something different needs to be done- you know? The problem is, I have panic disorder. And my doctor thinks that a 6mp is the next step for the crohns...but it can cause cancer in crohns patients and the symptoms you're supposed to watch for? Are crohns symptoms....How would I ever be able to tell the difference? I am afraid that in facing that I would be a nervous wreck all of the time. Any update you may have would be greatly appreciated.

 

[crohnscoulton]

The ldn is going well. It has allowed me to tolerate more foods on scd. However it is notldn alone that is healing me. I have decided to stay on scd because whenever I try to go off it I flare. Also, I just discovered so many new food options on scd that allow me to have sweets, bread, cake etc. ldn can help you out, but I dont beleive it will do the trick on its own without any lifestyle changes.

 

[ThatsWhatSheSaid]

What does the SCD all entail? Is the LDN the only medicine that you're on?

 

[crohnscoulton]

Scd- specific carbohydrate diet. Its a diet that eliminates gluten, lactose, refined sugar, starch, and grains. It may sound bad but there is quite a wide range of food on the diet. The book about the diet is called breaking the vicious cycle. The diet is quite hard at first with the intro diet but it ges easier. Go to scdlifestyle.com and breakingtheviciouscycle.info to learn more about it.

 

[ThatsWhatSheSaid]

Thanks!

 

[crohnscoulton]

If you, or anyone needs any more info on the diet dont hesitate to ask. Im prerry much an expert on it.

 

[ThatsWhatSheSaid]

I give. Please tell me more.

 

[crohnscoulton]

What would you like to know? I could direct you to some good videos about it on youtube if you want that pretty much explain the diet.

 

[David]

I give. Please tell me more.

We also have this thread.

 

[Cbail]

I really admire your research and your treatment plan. My story is quite similar. When I was first diagnosed I went on Remicade only to soon find out that it would make me worse. Much worse. I developed many extra side effects along with the original ones I already had including a persistent staph infection on my cheek, strep throat, terrible yeast problems, and bad joint pain. This went on for about 6 months until I told my gastro that I refused the medication. She then patted me on the back, said good luck, and walked out of the office. Keep in mind, this was supposedly the best GI center in the city of New York and maybe even in the US. I lived right around the corner from it on E 70th St. The Columbia Presbeterian Jill Robert's Center for Digestive Disease. So I went home and did the same thing you did. Internet research. I eventually came across all of the treatments that I still use today and I am doing WAY better as a result. They are SCD diet(sometimes I cheat when i'm feeling well), Colloidal Silver, LDN(I had this prescribed by another doc I found in NYC), and other supplements. Keep it up and good luck to you.