Diagnosed with Crohn's 2 weeks ago

[Pianoteacherevan]

I just received my diagnosis of Crohn's, and the Dr. didn't even go inside me with a camera yet! I told him my symptoms (anal fissure, stomach pain, diarrhea, morning/night sweats.) He gave me an anti-inflammatory called Lialda (Mesalamine.) My symptoms went from 70% down to 20%, and then 10%. I have not been in full remission yet, but this is the best I've felt in years. I'm almost 29 years old.

I got the anal fissure diagnosis 3 years ago. I did take Accutane as a teenager (12 years ago), and have since become active with the class action lawsuit.

I have an appointment next week to do the capsule endoscopy. The Dr. will know more about the progression of the disease after that.

I stopped drinking diet coke as often, and never binge eat anymore (for fear of pain.) My weight dropped from 180 down to 150 in a year (with lots of exercise.) Now I am at 140, and maintaining pretty well.

I also stopped smoking as much pot, and have been taking in the capsule form. (Not Marinol, I actually make coconut oil capsules myself) I vaporize Butane Honey Oil when I have a lot of lower back pain, and the capsules haven't kicked in. I completely have stopped drinking any alcohol, and had to minimize my dairy intake.

I always have a heater at my feet because I always feel cold. Even showers in the morning take me a long time to warm up. I'm wondering if I'm possibly Anemic.

I've been having symptoms since I was 15 years old. It has made going through life much more difficult than I realized. I finished high school with a high GPA, but that was just the beginning. With many mornings that were difficult to get out of bed or the bathroom, it became difficult to attend my college classes, and eventually my jobs. I've been to 6 colleges, and have had at least 10 jobs in my lifetime. I've always gone back to teaching the piano because it is one of my strongest skills. My dream is to be a professional race car driver, and day by day I am taking steps to make that happen.

I just wanted to say hello to everyone, and that I wanted people to hear my story.

 

[butterfly]

Welcome to the forum, sounds like you are having a tough time. Wow, Accutane caused this for you - do you know why that might be? I have crohns and i have a friend on this med and I dont know if I should warn her about the possibility of getting this shi*t disease. I had the same problem with college classes too. Too tired to get out of bed, unable to go to classes. Go the the pharmacy right away and start taking Iron supplements, it is likely if you are feeling cold that you are anemic. Have you had blood done recently to check your levels? I've always had to take Iron. (call your doctor and ask him or her if its okay first)

Im glad to hear youve had great relief with this medication so far, so thats really good. You make your own capsules? (so cool ) Is it difficult to do, and is it effective for your pain and well being? I want to cut down on the smoking, too.

Hello to you too, and i hope you feel well soon

 

[Pianoteacherevan]

Hi Butterfly, as far as I know, Accutane was pulled from the shelves in 2009, and there were several major lawsuits won against them in the $5-10 million range. I think it may act like a "trigger" to someone who is genetically predisposed with the condition.

It is not difficult to make your own capsules, provided you know all the proper steps, and have the proper equipment. I can say it did take me some time to get it right though. It is very effective for pain, great for appetite, and as a stress reducer. Capsules help me regulate my exact amount of intake as well. They help me sleep at night, so I take a higher dose at night. I take less in the morning because they tend to make me feel tired. The period between when I wake up, and when the medicine kicks in is when I want to smoke the most. Then I just maintain throughout the day. I think I eat 8 capsules a day or so? 2-3 in the morning, 2 in the afternoon, 4 at night. I made enough in a day to last me a long time.

I'll be getting my blood checked along with all kinds of other diagnostic stuff next week.

It's nice to meet you Butterfly

 

[David]

Greetings and welcome

I, too, took Accutane in my teens (33 now) but I have a different form of IBD (Chronic Lymphocytic Colitis) that I don't even know if was potentially caused by it. I hope your lawsuit goes well for you!

Thanks for joining and sharing your story. I hope to see you around the forum

 

[ameslouise]

Hi Evan and welcome!

Sorry about your dx and I also hope you can get some financial relief anyway from the lawsuit. Sounds like you have a good treatment plan going for yourself and are doing pretty well in spite of it all!!

If you haven't been checked for anemia already, you should do so. Actually, ask your doc for a full panel of blood work - just to make sure your Crohn's hasn't impacted absorbtion of any other vitamins as is so common with IBD.

Good luck with the pilll cam!!! - Amy

 

[Pianoteacherevan]

Thanks Amy, I appreciate the kind words. I'm feeling great, and I just bought myself a little toy A Miata that I can take to the race track. I'll post updates once I get my latest test results.