Never been this afraid :( EVER

Hey all

As I've mentioned before im 32 , dealing with crohns since the age of 16 :)

Thankfully ive done relatively ok , doses of steroids on and off , fistula surgery and ive remained on pentasa having had a reaction to imuran !!

In march , I landed in hospital with a partial bowel obstruction after many tests and scans it was determined that id a stricture in my small bowel that needed urgent attention !

Due to it being made up of scar tissue aswell as inflammation, they've said a resection is best and theyll remove a foot of bowel :(
I was holding it together until I googled and read how horrendous this surgery is !!
Im beyond terrified now and cant help but play the "what ifs" and catastrophic outcomes in my head , if this keeps up I wont even make it in for the pre op checks !!

Looking for a positive mantra to calm my nerves x x

Hopefully some others that went the surgery route will chime in. Many, many crohn's sufferers opt for surgery and have a very successful time of it. I have a friend who was in a similar situation, and had over a foot of her small intestine removed. She's been in total remission for 11 years now.

The internet can be a tremendous resource, but unfortunately can also scare the living daylights out of any of us. I remember feeling exactly the same as you do before we opted for Remicade for our Daughter.

I'm sure once you meet with your surgeon, and get more feedback, you'll start to feel more comfortable with your decision. Please keep us informed. Hope you're feeling better soon.

Agreed that 5 ASAs are not meant for Crohns. They are pretty much expensive placebos. Dangerous because you are essentially not treating your Crohn's disease. In studies the 5ASAs did equally to placebos.

Because it's fistulizing disease I agree to start remicade ASAP. Also start an immunomodulator to help make the remicade more effective and to help prevent your body from making antibodies to the drug.

Based on the fact that your GI only gave you pentasa for CD, I might be a tad aprehensive snd get a second opinion. In generally you should try to find a GI who specializes in Ibd and who practices out of an academic institution with an Ibd center.
Where do you live? Maybe people can give recommendations

Good luck!

Hey all

Thanks sooo much for your replies !!
My Gi is a highly respected man probably 1 of the best that we have in the country !! Hes pushed for me to try humira more times than i can remember but has respected my decision and reasons to not try it, mainly because ive had double pneumonia twice and lost numerous family member to cancer :( The risks did not sit well with me !!

My fistula was dealt with surgically 5 years ago and never returned, my crohns is limited to my small bowel , and while pentasa is useless for that area its kept my colon disease free !!

Hopefully the resection will pop me into remission for a while , who knows but regardless of medication choices after 17 years , im bound to have scar tissue , its a fact with the course of this disease !!

Best wishes to u all x

I had a resection almost 2.5 yrs ago and I'm still in remission. The recovery was far easier than having bowel obstructions or living with chronic anemia and Crohn's. I had 17 cm removed. It was done laporoscopically. Good luck and try not to worry.

Thanks sooooooo much Gumby44 , keeping everything crossed I have the same success :)
Wishing u a super long remission 👌

Surgery of any type is often scary. It seems so un natural to be put under and have things added, removed etc. My son, now 20, had an illeo cecal resection March 2016. He was so worried and frustrated (having thrown up for almost one month). His surgeon initially said he could wait until after his freshman year but changed his mind. My son feels so much better - he still gets stomach pains (maybe SIBO? - waiting to do a colonoscopy or MRE) but he can eat, work, run, hang out with his girlfriend and not have to search for a bathroom wherever he goes! I hope yours goes well and that you are in remission for a long long time. My son is on remicade and imurun which should keep his stricture from returning anytime soon. His recovery was so quick - in the hospital four days and back to school in the sixth. Best of luck to you! Let us know how it goes!

How do they know the stricture is due to scar tissue? Obviously this is your decision, but if I were in your shoes I would try remicade or humira first before jumping to surgery. I had a resection almost 3 years ago and it was literally last choice - I couldn't eat by mouth anymore and wasn't responding to any meds. It was open and I was in the hospital for 2 weeks recovering and then told to take 4 months off from work (I only took 2 because I was so bored). I lost 3 feet and definitely have side effects, but any time I get down about it I reassure myself that it was a last resort and I essentially had no choice.

Most people do well after a resection. It isn't going to cure your Crohns though and the odds of needing more surgeries after the first just go up. I got a second opinion from the Cleveland Clinic before I finally agreed. Would that help ease your mind? Either way, I wish you all the luck!