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Crohn's Disease Forum » Your Story » Crohn's fighter - Post Colon Removal


11-14-2017, 02:33 PM   #1
rahmani
 
Join Date: Nov 2017
Location: hyderabad, India
Crohn's fighter - Post Colon Removal

Hey, I am 28 years old male from India who was diagnosed with crohn's back in 2011. Initially there was sudden weight loss and doctors couldn't figure out the reason I was around 95kgs(209 lbs) and dropped down to 50kg(110 lbs) in a month. Somehow I found a good doctor and he asked me to go for my first colonoscopy and diagnosed me with crohn's.
It took me almost a year to come out of that pain and start leading a normal life, I was on omnacortil(prednisolone) for more than a year and later was on mesacol od(mesalamine).

I improved my lifestyle and joined gym quit smoking and life was going on pretty normal until recently, few months back I noticed I was again losing weight and quite uneasiness in my stomach, so I went fro check up again and in my second colonoscopy I found out that I had two strictures in my large intestine, luckily I never had any problem in my small intestine, so I was on meds again for most of this year again and also started methotrexate injections weekly once but I guess the meds stopped working and the pain kept increasing so I had to go under CT scan and post that my doctor told me that I have to go for surgery since the infection has damaged my complete colon and I have to take a call soon before I come in ER.

So after gathering lots of courage I decided to go for the surgery, I was initially given 3 options
1- removal of complete colon and rectum and permanent stoma
2-removal of complete colon and rectum and make a pouch using small intestine and have stoma for 3-4 months and then go for second surgery
3- removal of only colon and infected rectum and have stoma for 3-4 months and then closing of stoma.

So I had opted for the third option, though having a stoma at this age even for few month was something hard to digest for me as I was more worried about my day to day life but then going through this forum I realized I could do it too since so many have done, I had even taken few sessions with stoma therapist before my operation.

I was admitted in hospital on October 23rd, 2017 and was to be operated on 25th, on 24th I was again asked to go for another colonoscopy, Post surgery which went for about 5 hours I asked about the stoma bag as soon as I gained consciousness and I was given the good news that it was not required and the doctor just removed my infected colon which was complete large intestine but somehow managed to save me from getting a stoma, I was so relieved. The next thing I remember is waking up next morning with lots of pain in the stitches and I could see two bags one for the passing of urine and other was the drain bag.

The first week was with a lot of pain as the third day I had passed motion and my intestine was trying to adjust so there was lot of anxiety and also pain in my sutures, They make you walk the second day itself which is again a very tough thing to do as you won't have energy and the pain is too much.

eventually, they removed my urine pipe after a week and discharged me on 3rd of November but I was still having my drain pipe and they stuck a bag for that since the drain was still coming.

The removed my drain pipe after a week of me getting discharged, I still have my stitches on and would most probably get it removed this weekend.

I am right now concentrating on my recovery process and trying to find out how I can gain back all the muscle loss I had so concentrating on my diet and also I want to get back to the gym asap but I guess that's not possible until 6-8 weeks post surgery.

So this is my story so far.

Cheers.
11-14-2017, 02:59 PM   #2
fuzzy butterfly
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Join Date: Jul 2015
Location: manchester, United Kingdom

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Hi rahmani. Thanks for sharing your story. You have had a tough time. As have many of us here. There can be a life with crohns though it may be limited in some ways. I had surgery a couple of years back. I had a stoma for a year and had it reversed . It helped me greatly. No more pain aftet that.
Im glad you managed to avoid one as they can be hard work or pretty easy to have depending on how you can cope with it.
I hope that things only get better for you now. As for the gym in 6_8 weeks....i would be probably saying sometime longer than that as it can take a long while to heal fully on the inside of your body after surgery. Please check with your doctor/s before you try going back into the gym. Im just giving you my opinion as i would not want you to cause any internal damage to yourself.
Best wishes ☺
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5yrs since dxd. 3yrs in remission.. in remission since march 2014, dxd july 2012, ileostomy march2014, reversed feb 2015 all's good so far
Mandy
11-15-2017, 10:45 AM   #3
ronroush7
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Location: vienna, Virginia

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Welcome. Thanks for sharing your story.
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11-16-2017, 12:22 AM   #4
David
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Join Date: Feb 2006
Location: Naples, Florida
Greetings and welcome to the community. Will you please keep us updated on your progress? Obviously don't get back to the gym too early but when the time is right, I'd love to hear how you're doing.
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It's good to be back
11-16-2017, 10:31 AM   #5
campingamy
 
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Join Date: Nov 2017
Location: Bradford, Pennsylvania
Glad to hear your doing good, I hope this is a permanent cure for you. Thanks for sharing.
11-16-2017, 11:13 AM   #6
Bufford
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Join Date: Dec 2015
Location: Northwestern Ontario

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Good that you avoided the need for a stoma, I had surgery that removed a large part of my colon and small bowel, but the damage was so bad from rectal fistulas that I have a stoma that became permanent. A stoma is a major inconvenience and expensive to maintain. Since the surgery happened when I was older, I was was able to live a good part of my life fully intact.
11-19-2017, 08:15 AM   #7
Squirrel#1
 
Join Date: Sep 2017
Location: Abilene, Texas
Hey, I am 28 years old male from India who was diagnosed with crohn's back in 2011. Initially there was sudden weight loss and doctors couldn't figure out the reason I was around 95kgs(209 lbs) and dropped down to 50kg(110 lbs) in a month. Somehow I found a good doctor and he asked me to go for my first colonoscopy and diagnosed me with crohn's.
It took me almost a year to come out of that pain and start leading a normal life, I was on omnacortil(prednisolone) for more than a year and later was on mesacol od(mesalamine).

I improved my lifestyle and joined gym quit smoking and life was going on pretty normal until recently, few months back I noticed I was again losing weight and quite uneasiness in my stomach, so I went fro check up again and in my second colonoscopy I found out that I had two strictures in my large intestine, luckily I never had any problem in my small intestine, so I was on meds again for most of this year again and also started methotrexate injections weekly once but I guess the meds stopped working and the pain kept increasing so I had to go under CT scan and post that my doctor told me that I have to go for surgery since the infection has damaged my complete colon and I have to take a call soon before I come in ER.

So after gathering lots of courage I decided to go for the surgery, I was initially given 3 options
1- removal of complete colon and rectum and permanent stoma
2-removal of complete colon and rectum and make a pouch using small intestine and have stoma for 3-4 months and then go for second surgery
3- removal of only colon and infected rectum and have stoma for 3-4 months and then closing of stoma.

So I had opted for the third option, though having a stoma at this age even for few month was something hard to digest for me as I was more worried about my day to day life but then going through this forum I realized I could do it too since so many have done, I had even taken few sessions with stoma therapist before my operation.

I was admitted in hospital on October 23rd, 2017 and was to be operated on 25th, on 24th I was again asked to go for another colonoscopy, Post surgery which went for about 5 hours I asked about the stoma bag as soon as I gained consciousness and I was given the good news that it was not required and the doctor just removed my infected colon which was complete large intestine but somehow managed to save me from getting a stoma, I was so relieved. The next thing I remember is waking up next morning with lots of pain in the stitches and I could see two bags one for the passing of urine and other was the drain bag.

The first week was with a lot of pain as the third day I had passed motion and my intestine was trying to adjust so there was lot of anxiety and also pain in my sutures, They make you walk the second day itself which is again a very tough thing to do as you won't have energy and the pain is too much.

eventually, they removed my urine pipe after a week and discharged me on 3rd of November but I was still having my drain pipe and they stuck a bag for that since the drain was still coming.

The removed my drain pipe after a week of me getting discharged, I still have my stitches on and would most probably get it removed this weekend.

I am right now concentrating on my recovery process and trying to find out how I can gain back all the muscle loss I had so concentrating on my diet and also I want to get back to the gym asap but I guess that's not possible until 6-8 weeks post surgery.

So this is my story so far.

Cheers.
Your positive attitude is awesome! I have an ilieostomy bag. I thought my world had ended. When I read posts like yours it reminds me I'm not alone in the world. When I lost my muscles I started back with resistance bands. I was bed ridden for 5 months. When I started getting my strength back my super athletic son became my trainer. It's still a work in progress but I'll get there. I hope you keep that positive attitude and keep spreading it!!

11-23-2017, 12:28 PM   #8
rahmani
 
Join Date: Nov 2017
Location: hyderabad, India
Greetings and welcome to the community. Will you please keep us updated on your progress? Obviously don't get back to the gym too early but when the time is right, I'd love to hear how you're doing.
Sure I will keep updating my status
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