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Today I met someone with crohns disease

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Ulcerative Colitis
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Posted 3/14/2014 5:57 PM (GMT 0)
Today, I was working at the museum and a guy I work with wanted a coffee. We've exchanged a handful of conversations and hes a really nice guy. I wasn't expecting him to tell me he had crohns disease. On top of that, he says hes not on any medicine and instead uses marijuana minimally and just 'suffers' through his flare ups. He also shared that he is bisexual. Another quality in his life I just didn't see fit. I'm just speechless right now at everything he's shared with me. I would never be able to guess his sexual orientation or that he had crohns, but its certainly interesting.

I told him a little about myself, and shared my regimen -- LDN mainly.

I almost feel sad, that a really nice guy like him, has something so harsh to deal with, like myself and all of us here on the forum, but that none of us would ever know. =/ Kind of hit me hard today.
Posted 3/14/2014 7:08 PM (GMT 0)
Well, now you know someone who'll understand what you go through. During my remicade infusions, I usually sit with one other patient who has either crohn's or uc. And it is interesting to talk with them about the same trials and tribulations and have them truly get it. My wife and family are good listeners but seldom truly get it.
Posted 3/14/2014 10:53 PM (GMT 0)
I really wish I knew someone in real life with IBD. I think it'd be a huge comfort.
Posted 3/14/2014 11:32 PM (GMT 0)
I know a few people with uc, it is definitely nice to know other people who have gone through it. Everyone's stories are so different, from the one flare then 40 years of remission, to the years of flaring followed by surgery. Such a strange disease. Maybe your meeting will result in him trying ldn and no longer having to suffer through his flares, wouldn't that be nice!
Posted 3/14/2014 11:39 PM (GMT 0)
One of my coworkers also has UC. From the outside it *appears* that hers is under control. But, we never really know, do we? She may be suffering in silence like I do. The main problem is that the bathroom is SO FAR down the hall from our offices. At least 40 yards or longer after you get out of the maze. And there are only two stalls. UGH
Posted 3/14/2014 11:45 PM (GMT 0)
I have a co- worker with UC as well and it is nice to have someone to talk to. I also had a grandparent with cd so I saw how miserable that was as well.
Posted 3/15/2014 12:26 AM (GMT 0)
Hi, I find it disturbing on how many people I have in my life or have recently met that have IBD. My brother has Chrons , my cousin's husband has UC , my friend's husband has UC, my dental hygienist told me that her two brothers have Chrons and a sister has UC. I just found out that my neighbor also has UC.

Mind you, these people are spand out into three different states. It's incredible.

Cindy.
Posted 3/15/2014 7:49 AM (GMT 0)
I have yet to look a bellow IBDer in the eyes... but once I get my butt up to the CCFA Support Group in the next city north of here (I hate driving in winter and have been too sick to make the 30 minutes trip) I will have! Mind you... most of them have Crohns. Actually all of them have Crohns. One has both. But yes... I am friends with 3 of the ladies on Facebook. And I can't wait to actually hug someone else who has IBD. :D

My husband's co-worker's boyfriend has UC. I am super excited to hopefully talk to him. I am like a dog who heard their owner's car pull up... lol. I just want to be helpful and supportive and talk to him already... lol!

I am so greatful for the people I email, text, and call from around the country who know what I am going through. It is so freaking amazing and such a blessing (THANKS HEALINGWELL!!!) but I will love the day I get to have a conversation in person with a fellow UCer! :)
Posted 3/15/2014 1:33 PM (GMT 0)
I only know one other person personally that has UC but he's a teenager and just newly diagnosed. Oh! Thought of another....my primary doc has UC. The only other person I knew who had Crohns was my mother but she died from complications. But there are many more ibd'ers hidden among us.
Posted 3/15/2014 2:56 PM (GMT 0)
I have worked with 2 people who have IBD. One has proctitis and the other Crohn's. I've also met people at my doctor's office who have IBD. The ones I know were not able to maintain on without drugs, they are on remicade and 5ASAs. I actually met one person who said her BF has Crohn's and he is able to keep it in remission with diet. I didn't meet him so I don't know his story. It's surprising how many people I have been meeting lately who have this.
Posted 3/15/2014 11:46 PM (GMT 0)
Since being diagnosed with UC in 2010 I've continued to be surprised by the amount people who tell me they either have crohns or UC as well, or know a friend or relative who does once I mention having it. It's been everyone from nurse's in the hospital to co-workers to customers.

I had an illeoscope done last Friday and one of the endoscopy nurses in recovery was telling me how her 12 year old niece had recently been diagnosed with Crohns and is currently going through the ordeal of trying to find a doctor and the right medicines.

It's really made me wonder these past four years whether I was just completely ignorant to the whole idea of IBD before my own problems, if people are ink ally becoming more comfortable talking about it due to continued raising in awareness, or if there has been some steady increase in diagnosis and number of cases over the last decade or so.
Posted 3/15/2014 11:58 PM (GMT 0)
I used to sit right next to two ladies with Crohn's at work. One went through a resection, and the other a pregnancy. A manager from my first job in High School has Crohn's. My dad's best friend's wife, my "aunt" has UC. I have never talked to them about my disease, really.

I just found out that a guy I went to High School with had Crohn's since 1997, had colon cancer surgery last year, and lives with a permanent ileostomy. He's the only one I've ever really talked about anything with, because he had his colectomy done at by the same group that will do mine, but not the same surgeon.
Posted 3/16/2014 12:55 AM (GMT 0)
I think IBD is becoming more common, with the food we're eating being a contributing factor.

GMO crops containing proteins not normally found in nature
Herbicide resistant crops that you can dump chemicals similar to Agent Orange on them and they survive Crops that produce their own pesticide that explodes the digestive tract of any insect that takes a bite.

These thing certainly are not helping us.
Posted 3/16/2014 1:22 AM (GMT 0)
There are several other things that could be blamed. Diet is an easy target. So far no proof of diet or anything else. Actually, circumstantial evidence against antibiotics is mounting by the day but we're not there yet either. I'm 99% sure broad spectrum antibiotics gave me my UC. There is a lot of correlation between antibiotics and UC but not enough to raise to the level of "proof".
Posted 3/16/2014 1:31 AM (GMT 0)
My daughter's best friends mom has colitis.We had been to their house and was kind of telling my daughter has some food restrictions and we did not mention about her condition. After sometime the lady said she too has diet restrictions and has colitis.

Another strange thing happened. I happened to visit an Indian store and was enquiring about an ayurveda product called "Bael" with the shop keeper. I was pretty sure he would not know it. To my surprise he immediately said that he has ulcerative colitis for last 30 years and explained how he is in remission rite now after taking bael.

Post Edited (kamakya) : 3/15/2014 7:34:12 PM (GMT-6)

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