30 years with Crohn's

[cal1]

Hello to everyone. I am new to the forum, but unfortunately not to Crohn’s (ileitis). In 1982 when I was 21 years old, I became very sick. The problem?, I was the only one that knew it. I saw many doctors and spoke with my parents about my sickness. Everyone said there was nothing wrong with me. I had a number of tests, all which came back negative. The doctors told me I had stress or one of them asked me if I was distraught about a girlfriend because it was most likely the cause of my troubles. My parents agreed that nothing was wrong with me. Maybe I just did not want to be at college and wanted to be at home. I was too big to live with mommy and daddy, my parents said. After completing my second year of college, I went home for the summer and things got worse.

I started running high fevers. My parents took me to the doctor. The first diagnosis beyond being a head case was that I had a groin pull. That was the source of my pain. Take these muscle relaxers and all will be well in a few days. All was not well and I found myself back at emergency a week later. This time, the doc says it is just a bladder infection. Take these antibiotic and all will be well in a few days. A week later, my bladder infection was worse. The stupid docs still did not know it, but I had a fistula that went through my ileum and into my bladder. A bladder infection? No $hit. Well, the story goes on and on, but six months later and at least that many doctors, I ran into someone that told me he thought I had Crohn’s disease. I ultimately had surgery. 20 inches of terminal ilium was removed and my bowel was resected. Pathology reported classic Crohn’s.

After recovering from the surgery, I vowed to never see a doctor again or talk to anyone about my disease. I managed to go 28 years without seeing a G.I. doc. Sure, I had issues, but I dealt with them just like I am sure most of the people on this forum do. I saw a G.I. doc two years ago. He put me on Pentasa which seems to be helping. I moved to Milwaukee over the summer and now have a new doc that I like. He says he can help me dial things in and have better days. I am going to give him a chance.

I am sure lots have changed over the last thirty years. I am looking forward to learning from the people on this forum.

 

[Gwen pippy]

Hi cal1 and welcome to the forum.
You story rings through for some many on here, especially a lot of us dx in the 80's and earlier. I was dx 1987 age 11 and I went through many doc's, even in the GI field who had their own views on what might be causing my problems. What made it even harder back then as I'm sure with yourself was there was no internet and making others understand was tough, after I was dx my parents told me not to speak of my condition outside, not because they were embarrassed but because they knew I would have a tough time explaining to others who just wouldn't understand, now however if you mention crohn's, the response is "I know someone with that and its rough".

How did you manage to go so long without attending a GI, did you take any meds for all those years? I have never been able to break away and even though I went through my stages of stopping meds I unfortunately didn't get very far. What made you seek advise after all those years? Sorry for all the questions but we love to hear each others experiences as for works for one may just work for another.
we hope you stick around and join in the chats, some are serious, some need a shoulder, some are naughty!!! haha but we are all here for you and each other.

Take care
Gwen xxx

 

[Crohn's 35]

:welcome: Cal...I have a very similar story like yours, no one took me seriously and was in pain and D for as long as I can remember. My mother was not a type to dote on one sick. My parents divorced and the focus was on the step father that continually was riding my butt. I managed up til after the birth of my daughter. At 32 I was in the hospital so much everyone knew me by first name basis. I had exploratory surgery and it was "all in my head" then a resection which was 12 inches or so and was great for 7 years, then a second one from a "general" surgeon , old fart should of been retired.

Entocort was the new drug back then, the biologics are the newer drugs but of course they didnt help me. It is hard for some of us to discuss the disease but I have always been open and honest about it. Stress has been eleviated for me but we all have some form of stress.

:hang: we are hear to learn from you as you learn from us! Nice to see an "older Crohnie" :lol:

 

[Angrybird]

Hi Cal and welcome to the forum After having such a hard time getting anyone to help I can understand the reluctance to then talk about the disease. I second Gwen's queries about what brought the new doc into your life. I am glad you joined us and please know that you can come to us and there is always help and support here for you. Keep us updated on how things go.