Experience with Corhn's Disease

posted 3 years ago in Wellness
Post # 3
133 posts
Blushing bee

My sister was diagnosed when she was almost 14. She was deathly ill. She’s now 25 and is having her first baby next week!

The doctors did the same diagnostic tests on her. She’s also had several colonoscopys and even swallowed a little camera so the GI doc could see what it looked like.

She had a hard time figuring out which medicines worked best for her. In her case, she would be on one for a while with great results, but it would stop working after a while. I can’t even begin to tell you how many times this has happened. She started taking Humira once every two weeks a while ago (a year maybe?) and has had ZERO issues! She was weaned off of the other pill she was on in order for her and her husband to start their family. 

Up until the last three years, she was hospitalized for about a week every year with a flare. She hasn’t had a major flare since then. 

Crohn’s is a bad disease, but you can live with it.

Post # 4
1901 posts
Buzzing bee
  • Wedding: November 2013

@tynakinnon:  I have Crohns! I was diagnosed about 10 years ago when I was 19. I started having stomach pain and went to the gastroenterologist and had multiple tests done. Colonoscopy, upper gi… can’t remember what else. I was put on meds and everything was ok except for the occasional flareups. 7 years ago I had such bad cramps, felt like I had to go to the bathroom but I couldnt. I went to the ER and stayed a couple days where they had me drink tons of gross barium to see what the issue was. My intestines were perforated and I needed to have emergency surgery. So into surgery I went, not really knowing what to expect. They performed the surgery laparoscopically and removed about 10 inches of my perforated intestines along with my appendix. (It’s right in the area they had to remove) So I’ve been taking mercaptopurine which is an immunosuppressant medication since. I go for colonscopies every 2 years. And, knock on wood, everything’s been good since. I still get bad stomach cramping but it usually passes quickly especially once I go to the bathroom. I should watch what I eat but I love food too much to! Good luck with everything!

Post # 5
2385 posts
Buzzing bee
  • Wedding: July 2013

@tynakinnon:  commenting to follow, DH’s family has a history of crohn’s disease every other generation so he is understandably concerned about the disease… I hope they are able to give you some definitive answer soon!

Post # 6
389 posts
Helper bee
  • Wedding: September 2011

My sister and I both have Crohn’s.  I was diagnosed about 8 years ago.  I take a medication that suppresses my immune system and that keeps things in check.  I also meditate regularly, get plenty of sleep, and try to eat healthy.  This helps my symptoms tremendously.  I was terrified when I was diagnosed, but it hasn’t been that bad.  My sister has been worse off, and had 6 inches of intestine removed earlier this year.  

Post # 7
328 posts
Helper bee
  • Wedding: February 2014

@tynakinnon:  I recently found out that I have it after being diagnosed with colon cancer, I basically had to use laxatives to have bowel movements and could barely sit up straight the pain was bad. I have been able to keep it under control with some meds but mostly its diet and excersise. I workout daily, dont eat anything that I dont make or comes in a can. Its really strict but I can now cook amazing food. Its still a struggle as I have some flares and do weekly appointments to make sure we keep on top of everything.


Post # 8
357 posts
Helper bee
  • Wedding: October 2013

I am so sorry to hear this. I hope it is not Chron’s! I have IBS (not as bad and doesn’t damage intestines/colon) but similar symptoms. Just that is very hard to tolerate. My old roommate had Chron’s and it was mostly well-managed but it is a struggle. Hope they find a good medication combination that works and adjusting your diet will help too. Good luck!

Post # 9
3756 posts
Honey bee
  • Wedding: April 2014

I have Crohn’s, diagnosed in 2008 via colonoscopy and barium follow through. I had stomach issues my whole life and saw multiple doctors that told me I had IBS or was just “stressed”.. um, no I wasn’t. I tried all the different meds and had a hard time on all of them. Finally started doing research on how to manage it naturally, and what works for me is no gluten, no dairy and very little sugar. A diet that’s cooked mostly at home and contains mostly not processed foods (lots of veggies, meat, fish, eggs) has changed my stomach for the better. It sucks and I’m sorry you’re dealing with this. Good luck with everything.

Post # 10
55 posts
Worker bee
  • Wedding: May 2014

My twin sister and I were both diagnosed with crohn’s. Me when I was 12 and she at 14. We are 29 now. we both had small bowel resection surgery done laproscopically within 2 weeks of each other ( I wish we could have done it the same day!) weve been on every med from azulfadine to pentasa to the biologics, humira and remicaid. beware the last 2 caused severe infections all over our body. We both stopped those meds and are currently on lialda, mercaptopurine (6mp) and some folic acid and b-12 shots. Usually when you have resection your appendix is removed and your appendix is what absorbs b 12. Without b12 you can feel extremely fatigued. I do a lot of charity work with the crohns and colitis foundation based in NYC. and I thank god every day my current mix of meds has kept me flare up free for 2 years 🙂 it’s tough and an embarrassing and debilitating disease at times but once your doctor can get it under control you can live a normal life I promise!  Its surprising to see so many other bees have this disease as we’ll 🙂

Post # 11
225 posts
Helper bee
  • Wedding: April 2014

I have Crohn’s too!  I am seriously tearing up to see how many of you are, or have loved ones diagnosed.  I struggle with it constatnly!  I take meds including immunosuppressives every day, but I still end up with a bad flare 1-2x per year.  I started with symptoms ten years ago when I was 17.  I have a great doctor, but my body gets too used to meds too quickly.  Stress triggers my flares, unfortunately.  I am on Apriso right now, but it is really expensive with my current health insurance.  My next option is Humaira, but that is the only medication left that is safe for pregnancy, and I don’t want to start taking that until my FI and I want to have kids in 2-ish years since I don’t want my body to become immune to that medication yet. 

Support from you bees really has my mood up right now! 

Post # 12
628 posts
Busy bee
  • Wedding: January 2012

I have Crohns! I was diagnosed in 2012 (28 years old-right after our wedding! when i got super crazy sick!)  I never had any issues growing up so this was weird, I’ve had 2 colonoscopy’s i was in the hospital for a week i lost so much weight and was on steroids for months (they made me insane!) but i’m on Lialda, Imuran and Remicade (i was on some other drug but i got off it to get pregnant) they would like me to be off imuran as well but its too risky so i will be on and hope for the best) and its working really well! i eat healthy and work out a lot and i think that helps me as well. It was really hard in the beginning the stress of it all and the “why me”  but it gets better and once your doc’s get it under control you will be in remission before you know it!

PM me if you have any questions! Good luck!


Post # 13
1102 posts
Bumble bee
  • Wedding: May 2013

@tynakinnon:  I have colitis, it’s in the same family as crohns but not as severe. I’ve been going through a flare up recently and just went to the dr today for it…my suggestion is to jst stay on top of the disease, pay attention to what you are eating and other types of possible triggers (ie- stress) and try to manage them as best as possible!

Post # 15
1102 posts
Bumble bee
  • Wedding: May 2013

@CTbride2010:  SO WEIRD btw I was diagnosed at 27, 5 days before my wedding! I’m on Lialda and Uceris

Post # 16
38 posts

Hi I’m new) on here.  I have had Crohns disease since 2003. My regular family physician wasn’t sure (after they did all kinds of testing) if it was Ulcerative Colitis or Crohns. Was Sent to The Mayo clinic in Rochester MN and they determined it was Crohns. Anyways from 2003 to 2007 they had me trying every related drug known to help with the symptoms. For me it basically came down to that I had a strong negative reaction to each of the drugs they tried ( from breaking out in rashes to having seizures) the only drug they gave me by 2007 was Prednisone.  That steroid can work wonders, but it does have side effects and trust me you don’t want to stay on it.  It’s usually given as a temporary help and you get weaned off of this med. 

So, by 2007 when I had a flare up the family doc and my GI specialist were telling me that I needed to go on Remicade (an IV drug). By that time I was so sick and tired of these docs telling me I needed to take this or that drug, and I hated the thought of going on an IV med, that I basically blew up at the doctors, went home and weaned myself off of the Prednisone that I was on…and I went into remission!!

So I’m not trying to advocate stopping meds, if u need them great,  and hope they work for you!! Just watch yourself on them. I never had surgery thank god. You can try different diets that can help. It’s seems like everyone had different foods that help and hurt. 

By the way if you do end up going into a remission with this disease,  it does not mean that all symptoms are gone and that everything is ok…it’s more like, it’s mostly under control and the symptoms don’t control your life and you feel good enough to where you can actually live a pretty completely normal life. ( Just  hoping and praying that I never leave remission). 

Best of luck to you and I hope you have a great doctors!!! Sorry this got so long! 

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