Crohn's Disease Forum » Surgery » How to deal with surgery?

12-09-2013, 02:30 PM   #1
Join Date: Oct 2013
How to deal with surgery?

In September, I had a barium test done, and they found a 5 inch stricture. My doctor put me on Humira in the hopes of undoing the damage. Either I'm taking a long time for it to work (my doctor said it happens, and I've had plenty of great days), or it's not working at all. I have an appointment sometime in the next couple of weeks. I'm scared to death that he's going to want to do surgery. I'm not sure that's what's necessary quite yet. I haven't had any pain at all for over a week now, and that's pretty much unheard of for me! I've been working out again, and I have a bit more energy. Aside from that, surgery sounds like a lose-lose situation. The chances of having to do surgery again increase with every time they do it. That's the main part that scares me. I'm only 15. That's really early to start doing surgery. Who's to say I'll be able to (financially) have surgery in the future when it's necessary again? I know the discomfort and lack of energy that surgery will bring me, but that doesn't scare me quite as much. I just don't know if I can afford to be wiped out for however long recovery would take. I'm a sophomore, 2/3 of my classes are already hard to keep up with. I do have a 504 plan, but I don't feel like it would allow me the padding I would need. I'm not particularly a wimp when it comes to surgery either. I've been fondling with the idea since September, but I'm not much more comfortable with it than I was then. Thoughts on any of this? If you've had surgery, how'd you get the courage to go through with it? How long were you "wiped out"? Oh, and this is kind of irrelevant, but did they keep you in the hospital over night? How long? Were you on bedrest or anything, and how long? What do you eat/drink during recovery? Are you allowed to get up to go to the bathroom and whatnot during the first few days (Odd question, but it popped into my head )?
12-10-2013, 01:12 AM   #2
Senior Member
BowelMeOver's Avatar
Join Date: Jul 2013
Location: Louisiana
I don't have any experience with strictures, but my husband just had his whole colon removed in September, after just being diagnosed in March. During the whole trying to get better process, he would often say that no matter what, there was no way he was ever ever ever going to let them take his colon.

Then one day in the doctors office for yet another blood test to see how yet another medication was affecting him, his GI told him that if he were his son, he would recommend having his colon removed, as it was not responding to any of the medicines. It was amazing how calm and at peace my husband was when he looked at the doctor and told him to book an appointment with the surgeon.

You will hopefully find your cure with the medicines you are currently on. If you search this forum, you will find many posts regarding issues similar to yours, and not all of them end with surgery.

However, if it comes down to needing it, I think you will find the strength within you to get through it just fine. It's the fear of the unknown that makes it hard for us to believe we can make it through all this.

Good luck to you. I'll be rooting for you!
Husband diagnosed with Pancolitis 3/2013
Medicines used in the battle: Asacol Prednisone Imuran Humira
Proctocolectomy/Ileal Pouch-Anal Anastomosis 9-6-2013
Contrast enema + flex scope 11-18-2013 = approved for reversal!
Reversal scheduled for December 19th. Egads!

Sometimes hope is the best medicine. Don't give up!
12-14-2013, 08:50 AM   #3
Senior Member
VeganOstomy's Avatar
Join Date: Oct 2013
Location: Oshawa, Ontario

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I had an ileostomy surgery on August 21, 2013 to get my colon removed. I was in the hospital for 6 days and developed a minor infection in my incision wound a week after being discharged, but by Sept 28th (my Anniversary), I was able to do a 4km walk. It wasn't very difficult one the first few weeks of soreness (and drowsiness caused by the anesthetic) subsided and the soreness felt like sore ab muscles, not really pain.

I had a second surgery Nov 7th, 2013 to have my rectum removed. Was in the hospital for 5 days and have been relatively inactive since then, but only because it's been quite sore to sit and sitting often causes the dressing I have for my VAC unit to leak. The vac is a suction device which helps to speed up deep wounds. My first vac wasn't working right and I just got it replaced, but I've been taking pictures every time my nurse comes in and the healing down there is amazing. I hope to be fully healed by the new year.

That said, the immediate improvement to my quality of life vs my life with Crohn's has been nothing short of incredible. Surgery may help to give you your life back, but only your surgeon has the experience to be able to tell you how this surgery will benefit you.

Visit my blog to find out how I live with an ostomy while maintaining a vegan lifestyle. Tips, reviews and food

12-15-2013, 09:12 AM   #4
Join Date: Oct 2012

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The thing is one surgery is very different from the next. What kind of surgery would you be having? Major? Minor? I've had 20 minute surgeries where I went home the same day, and surgeries lasting several hours which took a couple of months to recover from. I had one where I got unexpected complications and was very sick afterwards - but I am so glad I had that surgery as it has been more than worth it.

What you eat, whether you're on bed rest, and the answers to all your other questions will depend how major your surgery is likely to be.

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