My crazy story

[Brian K]

My name is Brian, I am a 51 year old father of 7 . I was finally diagnosed with Crohns disease in 1986. Prior to that I had all they symptoms but, everytime, even as a child, I complained , the doctors and my parents would just tell me it's all in my head. I was " nervous" . Well to make a long story short. I went through childhood, adolescence and part of adulthood without any relief. The inflamation had gotten so bad that I had developed paratenitis. And a Gall Stone saved my life. Literally. lol. One doctor decided to do an ultrasound on my gall bladder. He found a large stone and scheduled surgery for the next day. What was to be a two hour surgery turned into an eight hour one. While taking my gall stone and bladder out the surgeons found I had paratenitis, holes , fissures and fistula through out my large and small bowel. I was down to 120 pounds. I couldn't eat, sleep or function. The surgeons called me a miracle. They had no idea how I was alive. Even my apendix had holes in it. They took about 9 feet of large and small bowel that time. There were others. I have had over 30 years living with this disease. And I just want anyone here to know that I am more than happy to help them even if it's just to talk. I know this is a very nasty difficult disease. We all need compassion dealing with it.
Brian

 

[Tesscorm]

Hi Brian,

Welcome to the forum! Wow, sounds like you had a terrible time leading up to your diagnosis. How sad that you had to suffer for so long! :yfrown:

I hope things are going well for you now and that things haven't been too difficult since your surgery.

And SEVEN children!!! All I can say is WOW! :medal1:That, in itself, must make life quite interesting!!! I have two and they keep me busy!:runaway:

:ybiggrin:

 

[Artificial]

Hi Brian,

Welcome

Can't beleive you went so many years without treatment, must have been tough!

Rachel x

 

[Dexky]

Welcome Brian!! That is crazy!! Seven kids!!! You're a glutton for punishment

I'm sure you've tried many meds over the years. What has helped or failed? How are you managing now?

 

[scottmyster]

HI brian, and welcome to the forum , i have had crohn's for 21 years now and it's sure is a battle with all ups and downs. you must of went through hell in trying to find a proper diagnosis after all those years and i am sure you have alot of advice to give to support the forum. Hope to see you around the forum . nice to meet you. best wishes.

scott

 

[xJillx]

Welcome, Brian! I can't believe you went so long without a diagnosis and treatment.

How have you been doing recently? What medication do you take? Whatever treatment plan you're on, I hope it is working well as you must be a very busy man keeping up with 7 kids!!

 

[Fee]

Heard that before! 'it's all in your head' aaaarrrgghh!!

Welcome to the forum, I'm new here too and I'm addicted already, it's such a family space, and everyone is so understanding!

What a terrible journey you've had to your diagnosis. How are things for you now? Meds? If u don't mind me asking.

See u around the forum

Xxxx

 

[David]

Hi Brian and welcome. MY GOD, that's pretty crazy!

How are you doing these days?

*hugs*

 

[Brian K]

Thank you all

Thank you all for your kindness. To answer most the questions, I have had nearly every treatment there is for Crohns. From Prednisone to Surgery. I took Remicade and it sent my blood pressure through the roof. Prednisone had its own complications, Immuran, Asacol, all the Sulfa drugs, nearly all immunosupressive medications . None really worked. I think right now , I am in remission. It has finally eased some. Thank God I haven't had a colostomy. I have however had so much of my intestine taken out that I have what they call shortened bowel syndrome. Along with problems with developing kidney stones. I have had ten of them. I have had arthritis associated with Crohns . And Ancholosing Spondylitis. Because of some of the meds I have developed pancreatitis which in turn became Diabetes. Right now, I am actually doing pretty well. My weight has gotten as high as 220. So, I am happy with that. The real nightmare is that my son has Crohns as well. Finding that out crushed me. But, he is doing very well. It was caught very early and with treatment he hasn't had too much trouble with it. I am happy I knew the symptoms and knew when to get him to the doctor. We all can live fairly normal lives with this disease if we just take care of ourselves. And I am directing this more for the men than the women. Men don't take care of themselves like they should . Women have better sense that way. We gotta be macho. That gets you no where but maybe an early grave. Than you all very much for being so open and kind.
Sincerely
Brian K Conrad:thumleft:

 

[Carolyn P]

Hi Brian

What a time you had and glad to hear that things are fairly good at the moment. It's all too common that people just do not believe us and it takes years to be dignosed. I was diagnosed at 17 (i'm 51 now) and I had been very ill for a long time but doctors thought I was an attention seeking teenager ! Eventually they took me in to do an investigatory operation and found Crohns. When I came to the surgeon was at the bottom of my bed snd told me it was Crohns, I rememember feeling releived that there had been something wrong and I had been ill, perhaps they would believe me now. My parents were told that if they hadn't operated when they did I would have been dead within 24 hours. I was amazed at your story and just how much of your bowel and everything else was affected. You really are a miricle.
I didn't know at that time it was an illness that would be with me forever. I became ill again with the same symptoms but yet again it felt like they didn't actually beleive me, i was in and out of hospital 5 times within a year and a half before they Operated again. I have now recently had my 4th operation. My daughter was diagnosed in April ( she replied to you before, she's Fee) and all these years later she struggled to get the family GP to listen to her even though he knew I had crohns.
So anyway I could really relate to you in lots of ways. I'm sorry your son has this condition but at least he was diagnosed quickly.
Take Care
Carolyn

 

[Jessi]

Brian, you are a pillar of strength.

Welcome to the family. :hug: I am so incredibly sickened at how long you suffered alone. I am very happy that you decided to join us here. It sounds like you and Carolyn have a whole lot in common. I hope you find good friends here that can help make up for what you've been through.

Thank you for blessing us with your story.

 

[archie]

thats incredible that you suffered so long I'm suprised you actually didnt go off your head being told it was in your head what a terrible terrible mis-guided health system. Well done on the 7 children I struggle with 2!! glad your in remission though and you sound up-beat which is an inspiration.