1st Post...diagnosed in 97

Hello,

Have often visited this forum over the years but have never posted.

I just wanted to say that everyone here is such an inspiration with their desire and will to overcome such an awful disease.

My story:
-48 year old male
-diagnosed at 26
-good and bad years like others
-was on asacol, imuran from 97-2006.
-GI gave me Remicade in 2006 and went into remission almost immediately. Unfortunately, he was not a good doctor and wouldn’t give me any maintenance doses.
-flared up again 2008 and was given Remicade again which worked. The next dose after that have me an allergic reaction and Remicade was done for me.
-switched GI’s and my new one gave me Humira which worked really well for many years.
-my problem was always strictures near the rectum from scar tissue.
-GI scoped me in April 18 and perforated my colon. Had to have emergency surgery ( first ever surgery of my life) and ended up with a colostomy bag so it could heal. 1 day after getting out of the hospital, I sneezed and herniated myself along the incision.
-has lots of output problems with the Stoma in fall of 18 and had to start self-dilating everyday.
-May 13,2019 changed my life. Had my colostomy reversed , hernia repaired, they found a parastomal hernia and had to repair that too, also had to resection part of my small bowel as it was all scar tissue. Woke up and couldn’t believe they were able to repair everything in one surgery. The nurses even had to put a note on me in the recovery room which said “ no more bag” because I didn’t believe them since I was high on the meds.
-first 2 weeks after surgery were the most painful thing I have ever experienced ( worst than the kidney stones I had in 2017). Didn’t know that having a colostomy bypasses the large bowel which meant it hadn’t been used in 13 months. Luckily, I was still passing mucus everyday for those 13 months so sphincter muscle stayed in shape.
-This Monday will make 8 weeks since my surgery and the incisions are fully healed and the stomach and plumbing is functioning 100% normal. Only lingering effects are still a little tender from the hernia repairs, a little swollen, and a few more weeks of wearing a hernia belt.
-2 major surgeries in 13 months made me reflect upon my life with CD and I wish I would have eaten healthier and never smoked ...perhaps I could have avoided the surgeries otherwise.
-proud to say I quit smoking cold turkey when I had the emergency surgery last year and have never had a craving since. The surgeon said quitting smoking was the best thing I could do to increase my chances of the reversal.
-currently, all scar tissue and diseased sections of my crohns have been cut out and I’m in full remission without even being on humira due to the surgery recovery. Starting Humira again in 2 weeks

Now, I am trying hard to work on my diet and treat my body better. 13 months with the bag was quite the sobering experience of how I should have been kinder to my body over the years.

Happily, I am in very good shape and have the vitals of a young teen since I quit smoking . Couldn’t pick up my 3 year old daughter for a year due to the surgery/hernia and can’t wait to pick her up again in a few weeks.

I wanted to say thank you to everyone here for being so brave and sharing your stories...

David

Thank you for the kind words 73Monte.

I plan on posting regularly now and staying in touch.

I must admit that I was stupid and ignorant and always treated my CD as an out of sight out of mind situation when in remission....aka drank, smoked, ate junk food...I was my own worst enemy.

13 months with the bag taught me humility and I lost myself during that time-angry at the world, quick tempered, ignored my wife and daughter ( unintentionally), was very depressed, lost my dignity when jerks at work made fun of the bag,

I feel reborn now ( physically and mentally but not religiously)and like I have a second chance at a normal life.

Always felt that everything bad always happened to me but maybe now I will view things differently.

Honestly, the one thing that kept me going consistently through 22 years of CD was my love of sports cars and having the $$ to buy them. I realize that is so ridiculously shallow and stupidly materialistic but something about that rush of speed ( not on an open road of course) was the one thing that could always make me smile.

I finally started driving my car again 2 weeks ago ( couldn’t drive it since it has a clutch and due to the hernia repairs) and it put such a smile on my face.

I led a hard life with an EXTREMELY mentally/physically abusive family that stole my childhood from me... ( finally escaped that and cut ALL ties with them completely 5 years ago and never looked back) , not a lot of friends when younger, and a lot of loneliness...partly because of the disease...but driving sports cars always made me smile and forget about my problems.

And snowboarding in the mountains in Banff and Whistler always made me happy and at peace with the beauty of the mountains....made me forget about my CD when I went...haven’t gone in a few years due to young daughter and the surgeries but going back this winter.

A Red Hot Chili Peppers line from a song has always defined me-“ A mountain never had a need to speak, a look it shares so many seek.”

That is why I fell in love with the mountains...pure utter beauty...it’s important to find things like that when suffering from a disease because illness can steal all of your happiness.

Everyone has a song which makes them smile and helps them understand their place in this world...the key is to finding that song and never forgetting no matter how sick your CD can make you.

David

P.S. hope things improve for your daughter!

Hello David, welcome to the forum. It is good to read your recovery, especially your final surgery that seems to solve many issues at once. I think quitting smoking and caring about your diet are very good moves for healthy living for Crohn’s patients. There are many different diets out there, I think starting your journey with an elimination diet can give you valuable information about how your body reacts to certain foods, which can allow you to make a specialised diet for yourself.

I have a question, you said “first 2 weeks after surgery were the most painful thing I have ever experienced ( worst than the kidney stones I had in 2017).”.
What was the cause of pain after the surgery in particular?

Post Edited (xy123) : 6/30/2019 9:21:58 AM (GMT-6)

Thanks Dimitri

Nicky, would love to fear more of your story