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Joined: 6 months ago
Posts: 148
February 21, 2020 12:30 am  

I was diagnosed with ulcerative colitis in 1995 when I was in college.  I didn't know anyone who had this condition.  I didn't't even know that it existed.  I carried on for years, occasionally trying to explain to someone that I couldn't eat lunch with them, or go out that night, etc, because I had ulcerative colitis, only to get the confused, blank stare that I had become accustomed to.  It wasn't until 2014 that I met a real person with inflammatory bowel disease, in this case Crohn's disease.  I received an email at work one day from my principal stating that he and his wife were training for a marathon to support Crohn's and Colitis.  Turns out that his wife had been fighting Crohn's disease for years.  I actually almost ran to his office to talk with him about IBD.  A real person who knew what I was talking about.  Well, of course, this has made it easier to talk to my boss about my condition.  He knows what it is about.  I have been fortunate for that.  Tonight, we had parent/teacher conferences and I visited with his wife, who was there helping with things.  We ended up just talking and laughing about things that only we would find funny - colonoscopies, preps, bathroom dashes, etc.  She looked around the room and said, thanks so much.  I needed to have this conversation, and probably couldn't have it right now with anyone else but you.  That really made me stop and think how important it is to have a safe spot, a safe person, a safe group to talk to about these things.  I normally don't seek support for my disease.  I went years without talking to anyone about it.  I told myself that this was easy.  But going to the bathroom 20+ times a day was not easy.  Filling the toilet with blood multiple times a day was not easy.  Having joint pains so intense that I couldn't walk was not easy.  Losing 15 pounds in 3 weeks was not easy.  Having people constantly ask me why I don't eat was not easy.  I had been dealing with a lot of stuff.  This all kind of came to a head in the hospital after my surgery.  For no apparent reason I just broke down on the day I was supposed to be released.  I couldn't stop crying.  I was visited by an incredible family Dr. who was on call that day.  She told me that I had been living with this for so long, it was time to let it out.  It was time to feel those emotions.  It was incredibly cleansing.   I guess I just want to say thank you for this place where we can feel those emotions.  Thank for a safe place.  I think we all need it.  You guys are great.  Rock on.  

dieffenk, VeganOstomy, Lynne and 2 people liked
Joined: 1 year ago
Posts: 555
February 21, 2020 2:05 am  

Thanks for sharing that story, Glenn. I think most of us feel that way about this site being a safe place and being so thankful for the support and camaraderie we have with each other. 

In my case, I have been hearing about Crohn’s for years, as my brother-in-law has had it since he was a teenager. I didn’t know too much about it and had no idea that I had it. I didn’t find out I had Crohn’s until after my colon ruptured and was removed. But after finding this site and reading a lot of Eric’s posts and articles, I realize there were signs of it 13 years ago. 

In the 20 months since I have been diagnosed, my brother-in-law and I have really bonded and even joked around about our Crohn’s. Having anyone who knows what you are going through makes a huge difference. He doesn’t have an ostomy, but certainly knows all about suffering from Crohn’s. 

When I was in the hospital after my unplanned colectomy and even at home after my hospital stay, I think everyone was concerned that I wasn’t crying about all this. Then one day, after about a month, the dam broke and I just cried for hours. It was a combination, I think, of finally realizing and accepting everything that had happened, and also being frustrated that none of my doctors had caught this earlier, including the surgeon who did the surgery on my abscess and fistula 13 years ago. But one of my best friends wisely told me there is no point in looking back. It only hurts your neck. So, I’ve been doing my best to follow that advice. 

Glenn, you mentioned your principal doing a marathon for Crohn’s. My husband and I did a couple 5ks for ostomy awareness in October. One in Portland with my family and one in Boise with good friends. If I remember right, from one of your posts, you are close to SLC, which I think is about 5 hours from Boise?? That is how far we are, just in the opposite direction. It is an annual event there in Boise. They did a group photo of all the ostomates before the race started and there were 13 of us there. And about 100 people overall. It was a fun and very well organized event. Something to think about for next year, maybe...

I second the sentiment that this website and group of people is so good for us in navigating this ostomate life. 

LK and john68 liked
Joined: 2 years ago
Posts: 418
February 21, 2020 7:19 am  

Hello Glenn,

IBD is common in my family. My late father had it and my sister, sister-in-law, and nieces deal with it constantly. My late brother also had Crohn's, but at the time there wasn't a whole lot of info. He also suffered terribly at times. When I was running to the bathroom about 6-8 times a day with discomfort and blood, I assumed it was either Crohn's or ulcerative colitis, but then I got the news that I had neither. I had colorectal cancer plus diverticulosis. 

My heart goes out to all who suffer from these diseases. I cannot imagine the pain and suffering you all have to deal with. I am glad, Glenn, that you no longer have to suffer as you did. There are many advantages to having an ostomy. I am grateful for mine just about every day. For one thing, God has given me yet another opportunity to love and serve Him. For another, I am still able to do things that I did before (with some modifications at times)  and can now eat foods that I wasn't able to eat for years. I can even drink milk and not have issues! 

I am also grateful for this website. I have met so many nice, helpful and supportive people here. I am especially grateful to Eric for creating this site and for all the hard work he does to keep it going.

God bless,


Joined: 3 years ago
Posts: 798
February 21, 2020 11:57 am  

Bang on Glen!!! I completely get what you said! I really, only  in my 62, years, as of today, of dealing with gut issues, the trotts, , pain, the ring of fire... only talked about it here fir the first time!  starting just over two years ago now. I thought my safe place was my best friend. But, when I heard her declare to another friend of ours, that "she is such a hypochondriac", my heart was crushed. We had just come from a lovely church service with a message  on loving one another and understanding others.  Another who was chatting with us and witnessed this,  said to best friend, "she heard you, shes right there, barley a step behind you!" At that I remember bursting into heart breaking tears and by the  time tine I reached the car, I was sobbing like  a child who could not find their favorite cherished stuffy!! We had been friends since we were wee ones and I was then 25 yrs. Old.  My husband waiting the car for me, promptly got  out of the car when he saw me and gave me the biggest hug ever, well at that point. lol! I had stopped saying anything years prior to  my family. Being the brunt of jokes and some rather nasty tricks, was not desirable to me.   I had only been married about 4  years, but even as  kid, I was not encouraged to talk about it or taken to the doctor, it was...well, its over now, go and play! Thru my high school, hard times there! I was often accused by teachers of smoking in the bathroom because of others leaving me in their smoky haze.  I had asthma, smoking was not my issue! 

This is a "safe place" and I wonder if this thread should be kept available for others to share their story when its realized how safe it is here. Yes, THANK YOU ERIC! Thanks to all  of you who made me feel safe. Safe enough to talk about issues I never imagined people talked about outside a doctors small  office room. 

Glen, those tears, a release like no other eh! Let me encourage you to use your Teacher Powers and communicate these diseases  to the teens. Teach them a whole other end (haha...I made a pun,  lol ) of life if your allowed.  Maybe organize a whole School walk for Crohns. E courage getting sponsors to raise $ for it.   Knowledge is power. When I think of that young grocery clerk I met and encouraged, I was aware of history repeating itself. He did make it to a doctor and was scoped, his issue is being treated. His school counselor helped him talk to his folks. Bless her heart!  God bless you all! 

  • Linda 

john68 liked
Joined: 9 months ago
Posts: 26
February 21, 2020 12:41 pm  

Thanks for such a beautiful and genuine post Glenn.  The power of real human connection and understanding.

LK, john68 and VeganOstomy liked
Joined: 5 months ago
Posts: 29
February 21, 2020 1:02 pm  

Wow, this is quite a story Glenn - thank you for sharing with us. I must say, while all of our stories and experiences are different (sometimes very much so), I feel like there's also a lot of commonalities. IBD is such a difficult thing to deal with, in large part because of the rarity but also because of the nature of the disease itself. Discussing it with someone who doesn't have it sometimes feels like an exercise in futility, even if they want to understand. I was in the same boat as you, except my UC came on fast (zero symptoms to severe pancolitis in 2017) and ended up in emergency surgery in 2018. In between I had just about every complication you can imagine - pulmonary embolism, extreme malnutrition necessitating TPN for 8 months, osteoporosis, anemia (and many more). I got much better after the first surgery, but rapidly declined again (sepsis, hemorrhage) after the second one due to a major surgical error. For someone that's only 28 years old I never expected I'd be in that place, and trying to help friends and coworkers understand it was very difficult. I feel like I was strong for so long, but my most recent 2 week stint in the hospital broke me and I cried - just like you. I wondered if this disease was going to cost me my job, or worse yet, my life. I have never been a huge people person and usually keep to myself and a close group of a few friends, but you are right - we do need this place. Thank you everyone for being who you are and allowing me to share part of who I am.

LK and john68 liked
Joined: 6 years ago
Posts: 2878
February 21, 2020 1:32 pm  

Thank you so much for sharing that, Glenn. While it always seems like we are alone out in public, I never forget that more than 1 in 100 people are living with IBD, so chances are we pass by people with IBD throughout our daily lives without even knowing it. It really is nice when you meet someone else who has IBD and opens up about it with you. 

LK and john68 liked
Joined: 1 year ago
Posts: 555
February 21, 2020 7:20 pm  
Posted by: @dlkfiretruck

I really, only  in my 62, years, as of today


Happy Birthday!!🎂🎉🎁🎈🎊 

LK liked