My Story May Be Different

Like so many of you--my pain with crohns started when I was 17 and a senior in high school. That was over 40 years ago. It took about a year for them to find it and even then they found it when they did "exploratory surgery." The surgeon said it could be one of 4 things--but didn't call out crohns. He did say they might have to remove 8-10 inches of intestines. When I came out from under the anesthetic, they had removed 3/4rths of my small and 1/4rth of large intestines.
I had flare-ups through-out the years but I have not had any more surgeries. My biggest problem was I started making kidney stones and captured the title of the "best kidney stone maker" in West Texas. Last count--I have been put under anethesia 39 times to blast or basket stones. That doesn't count the 4 surgeries before they came out with lithotripsy. There is a medication to help stop the stones--but you guessed it--it KILLS my crohns. Lights me on fire. No way I could take it. This year I have just felt lousy so my doctor finally convinced me to try some of the meds that I have avoided. Two weeks ago I started Cimzia. Had my second round of shots yesterday. So far--all I have had is pain where they stitched the intestines back together. Not sure how long I will stick with Cimzia. I know that most doctors highly recommend not to remove much intestines due to crohns as it will just come back. I have always wondered how my life would have been if they hadn't removed so much intestine. You know all the problems that goes along with crohns and then with very little intestines left. I was able to graduate from college; helped raise three great children, and had a super 36 years with a government agency. After reading many of your posts--I think maybe the surgeons saved me from a lot of pains from crohns that I might have had if they had not removed the intestines. Something to think about.

Hi don and :welcome:

Good to see you here! I love to see the "old crohnies" here 'cause you have so much experience to add to the mix which is just fab and it sure sounds like you have plenty of that! Any particular reason you say you don't know how long you'll stick with the Cimzia? Are you expecting it may not work?

I hear you about the surgery. My daughter did not go the meds path simply because she wasn't diagnosed until she had emergency surgery. She has been left with short bowel syndrome but has been in remission since the op and is living away at university. So yeah, I can't fault the outcome in more ways than one but often wonder what her life would have been like if it was meds straight up, particularly when you read of those that are struggling.

I hope you stick around 'cause it would be great to have you here and keep us posted on you are travelling. Good luck and welcome aboard!

Take care,
Dusty

Thanks DustyKat--I haven't had a lot of intestinal pain all these years. Since I have started Cimzia--all day long it hurts where they stitched the intestines back together. I already know that area has more restrictions than the rest due to my last colonoscomy. The doctor stretched that area a little and it helped. But after only a week of Cimzia--that area hurts. Just concerned. Hoping some other Cimzia patients can help me.