05-19-2018, 09:59 PM   #1
Flap Jackson
 
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Join Date: May 2018
My Story

Hi everyone.
I am a 49 year old male. I was diagnosed with Crohn's Disease about 10 years ago. I'm fortunate that I haven't had the pain that many have had, mostly just being uncomfortable with the occasional pain. Diarrhea is pretty much the norm in my life (sorry to be so descriptive!). I started out on Asacol, then Lialda, now Mesalamine. I've had 5 colonoscopies in the 10 years since I've been diagnosed.



Two months ago, I went to the emergency room because I was experiencing some serious pain. Thought it was Crohn's related, turned out I had "quite a few gall stones". While running all the tests on me, they discovered a fistula. Had the Gall Bladder removed, and a hernia repaired (no idea that I had one), and an ERCP to remove a couple of stones in my bile duct. Two weeks later I had a colonoscopy to verify the fistula.
Talked to my Surgeon and my Gastroenterologist and discussed my situation. On August 1st I will have a laparoscopic ileocolic resection. My Surgeon is going to mark me for a stoma, but I might not have to have one. If I do, it's temporary (3 to 6 months she said).

Afterwards I will start on Remicade.


I've never had surgery until two months ago, and now I'm about to have a major one. I've been looking around, searching for answers on what to expect with this surgery. Not going to lie, I'm a little worried. A stoma is my biggest fear.

Any information anyone wants to throw at me will be much appreciated.
How long does the surgery generally last?
How much pain, and for how long (generally speaking)?
How big are the cuts, and how many?
When do you start feeling better? I have a golf tournament 3 1/2 weeks after that I'd like to go to!
I'm taking 6 weeks off of work, because my job entails me to be on my feet for 10 hours a day.


Looking forward to hearing from everybody, and thanks for listening!

Last edited by Flap Jackson; 05-20-2018 at 01:04 AM.
05-19-2018, 10:23 PM   #2
ronroush7
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Welcome. I had a resection eight years ago. They removed my terminal ileum and a small part of my colon. Mine was not laproscopic. I believe my surgery lasted several hours. They tried getting me up the next day but the pain was too much for me but everyone is different. I believe my scar is a little below my bellybutton and several inches above. I had my surgery on April 6 and it was June at least before I returned to work. It was another month or two before I stopped having diarrhea. As I said before everyone is different. They had me walking twice a day. Make sure you have something to keep you occupied while you are in the hospital. Sending you support and prayers.
05-19-2018, 11:15 PM   #3
ronroush7
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My apologies. I did some reading and understand they make smaller cuts with laproscopic surgery.
05-21-2018, 12:54 AM   #4
Lynda Lynda
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Welcome and thank you for sharing !

Your doctors should have a consultation with you before your surgery and answer all your questions. Can you make an appointment with them between now and August ?

Glad you found out what was wrong and got it taken care of. ( gallstones, hernia )

Best of luck with your surgery.

You were only taking Lialda or Asacol for your Crohn's this whole time ? I took Lialda / Asacol after I was diagnosed with Ulcerative Colitis in 2006. Now my diagnosis is Crohn's and my treatment plan is the 6mp pill and Humira injections.

This is a great forum so you should have answers to your questions soon.

Take Care.
Lynda
05-21-2018, 12:58 AM   #5
Lynda Lynda
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Welcome. I had a resection eight years ago. They removed my terminal ileum and a small part of my colon. Mine was not laproscopic. I believe my surgery lasted several hours. They tried getting me up the next day but the pain was too much for me but everyone is different. I believe my scar is a little below my bellybutton and several inches above. I had my surgery on April 6 and it was June at least before I returned to work. It was another month or two before I stopped having diarrhea. As I said before everyone is different. They had me walking twice a day. Make sure you have something to keep you occupied while you are in the hospital. Sending you support and prayers.
Ron, I did not know you have had a resection.
Hope you are doing well.
Thank you for sharing.
My Crohn's is located in the same area that yours was.
Lynda
05-21-2018, 07:44 AM   #6
Flap Jackson
 
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Thanks Lynda.
I do have a consultation on June 22nd with the surgeon. I just want to hear answers from people that have actually gone through it, not just the canned response from the Doctor.

And yes, believe it or not, I've just been taking those meds, and nothing else. I've been very fortunate...until now.
05-21-2018, 02:03 PM   #7
Lynda Lynda
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Flap, hope you have a great week. 🙂

It's a long wait until June for you.

Sending you my support. ❤

Lynda

Last edited by Lynda Lynda; 05-21-2018 at 11:24 PM.
05-29-2018, 11:34 AM   #8
sonn
 
Join Date: May 2018
Don't worry about stoma! It's not a great problem. I started feeling ok in2 weeks after an operation, but I suppose it depends on the complexity of the operation
06-11-2018, 02:13 PM   #9
MedicatedWarrior
 
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Welcome! A very touching story.
06-12-2018, 12:56 PM   #10
cmack
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Welcome Flap. I hope you are doing okay. You have my support too.
07-08-2018, 11:08 PM   #11
Flap Jackson
 
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Well I met with my Surgeon on June 29th. She said there's a less than 10% chance that I'd need a stoma. Yay!
My terminal ileum is inflamed, so that has to be removed.
I have a fistula between my terminal ileum and my rectum. She said that sometimes Colonoscopy results can be wrong, so she wants to explore it while she's in there. She said there is a chance that I'd have to have a double resection. Is that even a thing? If so, ugh!! I'm having surgery on August 1st. I am taking 6 weeks off of work to be safe. Just can't wait for this to be over. I'll let everyone know how it goes!
07-09-2018, 09:45 AM   #12
cmack
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You have my support.
10-24-2018, 08:04 PM   #13
Flap Jackson
 
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Had my first Remicade infusion today. They had a newbie try to start my IV. She couldn't hit the vein, so another nurse had to do a new one...that sucked! I got there at 2:15, and was out at 5:15. I weigh just under 200lbs., and they put in 500mg.



I've never been to an Infusion Center before. Got to admit, I kinda thought everyone would be in their own rooms. So I was surprised that we were all in one big room. Just caught me off-guard. Overall it was a pretty boring experience, which I get to repeat in 2 weeks.
11-13-2018, 09:46 PM   #14
Flap Jackson
 
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Keeping my story going. I've had two infusions so far. I know it's still early, but I haven't felt any effects yet. I hope I do soon. It would be nice to have a semblance of a normal life. My next one isn't until December 5. I've burned through my deductible this year, so everything has been covered.

On a GREAT note, I received a letter today from Janssen CarePath, and I'm eligible for their savings program in which I'll only have to pay $5 for my first visit in 2019. Everything after that will be completely covered (might have to pay for office visits still, but that's it). Very nice to not have to worry about paying for this.



That's about it. I'll add more as needed. Good luck everyone!!
11-14-2018, 10:11 AM   #15
cmack
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That's good news about your coverage. I hope your meds kick in quickly so you can feel your best.
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