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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!:p). 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.:ybiggrin:
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!:ysmile:
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!
 
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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.
 

Lynda Lynda

Senior Member
Location
N/A
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
 

Lynda Lynda

Senior Member
Location
N/A
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
 
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.
 

Lynda Lynda

Senior Member
Location
N/A
Flap, hope you have a great week. 🙂

It's a long wait until June for you.

Sending you my support. ❤

Lynda
 
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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
 
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!
 
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. :)
 
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!!
 
It's been a while since I've been on here, but just wanted to give an update. It's been almost a year since I started taking Remicade. In June (about three weeks after my infusion) I started getting excruciating migratory joint pains. One day it would be my right ankle, the next it would be my left wrist and so on. I got in to see a Rheumatologist and she was pretty perplexed. She tought it could be possibly Reactive Arthritis. It went away about one week before my next infusion. When I went to my infusion on July 19th, I had a Prometheus test done to see how much Remicade was in my system. Well the results came back that I had zero Remicade left and that my body had started building antibodies. My GI thinks that the antibodies were what was/is causing the joint pain. I've had them after that last infusion, but not nearly as bad.

Now after getting approved by my insurance company and enrolling into EntyvioConnect, I start Entyvio infusions on Wedsnesday (9/11). I decided to go with Entyvio because I don't think I could give myself an injection, plus I get to leave work early!

Hopefully my body won't build antibodies to this, and I can get back to feeling normal again.
 

my little penguin

Moderator
Staff member
Glad you have a plan to help
Are they putting you on bridge therapy (een or steriods ) until entivyio kicks in ?
Average time to take effect is 24 weeks (aka 6 months )
Some take up to a year
Vs remicade takes 6 weeks to be effective on average

When Ds was placed on Stelara I really didn’t think that would take 6 months to start working
Even though the studies said as much
Took every bit of six months
So please have a plan b for bridge therapy so you don’t flare

Tagging @crohnsinct
 
Got the tag. We decided to ditch Remicade for my daughter in April because it just stopped working. Entyvio is painfully slow to work. Quotes are 12-26 weeks. As a matter of fact there is a lot written that if it doesn't work by 12 weeks you should move on. However, mist GI's will try it longer because many people just take a little longer to respond. My daughter just started getting a bit better at 21 weeks.

You need a bridge therapy to handle the disease while you wait. Even on tacrolimus (my daughter had been in steroids too much over the year and half prior) she flared pretty badly and was hospitalized. We had a really rough time getting control of disease. After 33 days inpatient we finally got diesease under control and she is still on a lower dose of steroids.

Good luck! Be patient!
 
Glad you have a plan to help
Are they putting you on bridge therapy (een or steriods ) until entivyio kicks in ?
Average time to take effect is 24 weeks (aka 6 months )
Some take up to a year
Vs remicade takes 6 weeks to be effective on average

When Ds was placed on Stelara I really didn’t think that would take 6 months to start working
Even though the studies said as much
Took every bit of six months
So please have a plan b for bridge therapy so you don’t flare

Tagging @crohnsinct
Thanks for the reply. No, they didn't put me on bridge therapy. I think I'm one of the lucky ones. I don't really have flareups. When I was first diagnosed, I was having flareups (that's what made me go to the Doctor in the first place). But after those few months, i haven't really had any thing too major (pain wise). After my resection last year, I've felt pretty good.

I had my second Entyvio infusion today. I have an appointment with the Urologist on October 7, an appointment with the Rheumatologist on October 21, my next infusion on October 23, and a colonoscopy on November 4. So I've got a lot going on the next month and a half.
 
Had a colonoscopy today. I have a follow up appointment next Wednesday to discuss the results. Anyone want to take I crack at deciphering this? 😁3865
 
Location
San Diego
Observations Made During the Colonoscopy:
1. The anastomosis (the place where the ileal portion of the small bowel was joined to the colon during prior surgery) was located on the right side and was found to be intact.
2. Medium-sized ulcers were observed at this anastomosis site and they extended 5 centimeters into the terminal ileum of the small bowel. This is suggestive of active Crohn's disease.
3. There were inflamed polyps observed in one spot in the sigmoid colon, and the doc wonders whether this is the same location where there was a previous fistula.
4. There is no other evidence for inflammation in the colon.
5. Biopsies were taken from the right and left colon and the rectum.
6. Internal hemorrhoids were observed upon bending back the rectum.
 
Observations Made During the Colonoscopy:
1. The anastomosis (the place where the ileal portion of the small bowel was joined to the colon during prior surgery) was located on the right side and was found to be intact.
2. Medium-sized ulcers were observed at this anastomosis site and they extended 5 centimeters into the terminal ileum of the small bowel. This is suggestive of active Crohn's disease.
3. There were inflamed polyps observed in one spot in the sigmoid colon, and the doc wonders whether this is the same location where there was a previous fistula.
4. There is no other evidence for inflammation in the colon.
5. Biopsies were taken from the right and left colon and the rectum.
6. Internal hemorrhoids were observed upon bending back the rectum.
Thanks for the translation! Some good news, some not so good news.
 
Had my follow up today. The Doctor is putting me on Budesonide for 8 weeks until my Entyvio kicks in.
She also wants me to start taking Vitamin-D on a daily basis.
Lastly, she wants me to start doing monthly B-12 injections. Not to thrilled about poking myself, but I suppose I'll get used to it!
That's about it. Guess we'll see what happens.
 

cmack

Moderator
Staff member
I don't care for needles much either, Flap. I sure hope things start working for you soon. I think you're right that you will get used to having a poke at yourself. I take vitamin D and B12 daily too, except mine is oral. It's good to hear from you. Cheers!
 
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