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Crohn's Disease Forum » Your Story » Introducing myself


05-30-2017, 03:26 PM   #1
john boyle
 
Join Date: May 2017
Location: quebec, Quebec
Introducing myself

hi everyone, my name is JOHN, and i have been diagnosed with crohn's disease after having ulcerative colitis for 25 years, a month ago. What a shocker. my colon is badly infected, even though i had routine check ups every 3 yrs. They have to removed my big intestine and attach the small intestine to my rectum. i have to undergo this operation on the 16th of june. Off workfor 2 months.I have already started the preparations for the surgery. I had a taco done this morning, went well enough and next week, colonscopy and the day after, blood tests and an ellectrogram and then the surgery on the 16th.. i am stressed out, i have always been healthy and took good care of myself. I do not sleep well at all, even though some of my friends told me it is going to go really well,, its a 3hr operation for god's sake, they are taking a junk of intestine out of me,(such a drama queen)..To me its like the end of the world, i am 55yr old, and i told my family(2girls) that my will is up to date,, now isn't that a dandy,, godddd. So many questions, what should i eat and cannot eat? do i rely on my instincts like i always did with colitis? what medication will i take,, i have been on asacol for 25 yrs. Are there any complications after? How long after can i resume my activities? I am so glad i found this forum, now i can try to relax and read what other folks have gone through.
05-30-2017, 04:44 PM   #2
cmack
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Welcome John,

I haven't had that particular surgery, although I'm sure others on this forum have. I have had a ton of surgery but it was mainly for fistulas and abscess drainage. There is a section on here specifically about surgeries and what to expect. You may want to read some of those threads. I certainly hope things go as well as possible. I know what the stress is like to have to face the scalpel, no envy here. Try not to worry too much though, most surgeries seem to go fairly well. Stress is the enemy.

You can talk to me any time you like, pm's are fine too. Be sure to keep in touch.


Kind regards,

cmack
05-30-2017, 06:17 PM   #3
Jabee
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Do your doctors think you had crohn's all along but that it was located only in your colon until now (crohn's colitis, I think)? It's really such a shame that the asacol helped with symptoms but you still have to lose your colon. Is your surgery laparoscopic or open?
05-30-2017, 09:55 PM   #4
ronroush7
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Welcome. I had a bowel resection seven years ago in April. I was 53 at the time. They tried to get me up the day after the surgery. I had to wait until the next day. Make sure you walk as much as possible. I think I wasn't allowed to lift above 25 lbs. for a while. It was June before I could go back to work. Please let us know how you are.
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
06-03-2017, 10:30 PM   #5
Layla
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Welcome John, sorry you had to join us!
My history is similar, UC for 20 odd years and now Crohn's. My diagnosis was changed because I kept having blockages and it turned out the disease had moved from my colon to my small bowel. My colon is now completely clear, go figure!

I almost had the operation you're having 20 years ago, but because I had strictures in the small bowel I had a resection of about 30 cm's instead, so I still have all of my colon including the IC valve.

One piece of advice I can give you is to try and be as fit as possible before your surgery as you will recover more quickly if you are.
As Ron said they'll try to get you out of bed as soon as possible, this aids the bowel to start working again and the sooner it does that the sooner you'll be out of hospital. When you can, walk loops of the hospital corridors, not much fun but it's essential!

As to learning to live with CD rather than UC, for me it wasn't much different and I'm guessing it'll be the same for you as it's likely that we both had CD all along. I'm not sure how much difference not having a diseased colon will make foodwise.
I expect you'll have to be very carefull with fibre after the op. I don't know if you can eat things like corn now but I wouldn't risk it after the op!

Feel free to ask more questions, there's bound to be someone here with experience!
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Layla
Diagnosed with UC in 1994, CD in 2014, IBS in between
Lactose intolerant, IgA deficient and Arthritis.
Resection due to strictures in 2014
Currently taking: Remicade, amitriptyline, zinc, multi vitamin, b12 shots, Vit D, B complex, magnesium, calcium, Psyllium and the occasional iron infusion

Previously on Humira, Prednisone, Azathioprine, MTX, Pentasa, Asacol, Salofalk
06-16-2017, 04:05 AM   #6
john boyle
 
Join Date: May 2017
Location: quebec, Quebec
Do your doctors think you had crohn's all along but that it was located only in your colon until now (crohn's colitis, I think)? It's really such a shame that the asacol helped with symptoms but you still have to lose your colon. Is your surgery laparoscopic or open?
its laparoscopic,,, bon today is the day...
06-16-2017, 08:58 AM   #7
scottsma
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I hope all goes well John.Lots of folk on the forum have had surgery and lead normal (?) lives.Let us know how you're doing,when you can.Newbies and lurkers will be interested,as are the rest of us of course.Very best wishes to you.
06-16-2017, 12:17 PM   #8
Semi C
 
Join Date: Jun 2017
I had a colon resection a few years ago. It took me a couple months to feel like I was walking normal and not hunched over. Be careful coming back from it. I ended up giving myself a hernia from shoveling snow 4 months after surgery. I agree with other posters, it's very important to get up and walking as soon as you can. It will help speed up recovery. My wife had me up the next day.

My best advice for you, and everyone on here, is eat cleanly. I began a gluten free and sugar free (for the most part) lifestyle for about 4 years ago and I have felt great ever since. I avoid packaged foods and kind of adopted the paleo diet mind set. The surgery was a result of previous scar tissue. Since then, I have been med free. My doctor tells me I should call the pope. I've been on Pentasa, Prednisone, 6MP, Humira and numerous others. Today nothing.

Just give it a try, it's not as hard as you think. Start slowly and ween yourself off sugar and gluten. It will take a couple months but it is worth it. I joined this forum just to help others that have this condition.

Good luck
Just give it a try.
06-16-2017, 10:19 PM   #9
Jabee
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I'm glad to hear the surgery was meant to be laparoscopic and hope it went well.
06-17-2017, 11:14 AM   #10
Bufford
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It might be time to consider early retirement. I had major surgery that left me with a temporary stoma that became permanent. Fortunately at the time I had a job with a defined pension plan, I took the early retirement option at the expense of a smaller pension, but it was the right decision. I could not possible cope with working and the lack of strength I have now.
06-17-2017, 12:01 PM   #11
ronroush7
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It might be time to consider early retirement. I had major surgery that left me with a temporary stoma that became permanent. Fortunately at the time I had a job with a defined pension plan, I took the early retirement option at the expense of a smaller pension, but it was the right decision. I could not possible cope with working and the lack of strength I have now.
I am now sixty. I retired at 53 because after a resection commuting was too hard on my body so I agree.

06-21-2017, 03:47 PM   #12
john boyle
 
Join Date: May 2017
Location: quebec, Quebec
well came out of the hospital today, everything went super well..couldn't eat 2 days later, just the sight of food had me puking. but all is ok now. the hardest thing is lying or sitting down and not doing nothing, (well except for reading and cross word puzzels and music). i want to do more, but i will not, i will take my time and enjoy the summer and my garden,, thanks guys for being there.also its going to be nice to eat some baby pablum lolllll not had any since the kids were babies.
07-24-2017, 07:19 AM   #13
john boyle
 
Join Date: May 2017
Location: quebec, Quebec
question for yous', since my operation on the 16th of june, i have developped a huge hemmoride, the size of the end of my middle finger. Has anyone experienced this after their operation as well? just curious. thanks
07-24-2017, 07:24 AM   #14
ronroush7
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You might want to let your doctor know.

07-24-2017, 07:24 AM   #15
john boyle
 
Join Date: May 2017
Location: quebec, Quebec
question for yous', since my operation on the 16th of june, i have developped a huge hemmoride, the size of the end of my middle finger. Has anyone experienced this after their operation as well? just curious. thanks
07-24-2017, 07:33 AM   #16
john boyle
 
Join Date: May 2017
Location: quebec, Quebec
thinking the same thing,, i only noticed it yesterday, weird hein? all through i do go to the bathroom like 4 or 5 times a day now, so i am sure it related to that somehow, and yes i will call my doc. thanks ron
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