Ileostomy Reversal - My Journey

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Xndman
Posts: 9
Joined: Sat Jun 26, 2021 4:07 am

Ileostomy Reversal - My Journey

Postby Xndman » Sat Jun 26, 2021 4:30 am

Hi. I've read the boards a good bit as I prepared for, and now live with, the removal of large intestine 8 months ago and the takedown of my ileostomy 4 weeks ago.

A little about me first. I'm an early 50's dude who first had rectal cancer when I was 21. I was extremely lucky and the tumor that eventually started causing me pain and discomfort did not grow outside my colon wall. I had surgery to remove the section of my large intestine and was re-connected. Even though all the lymph nodes were negative, I still had 6 months each of chemo and radiation. And the radiation back in the early 90's wasn't quite the precise treatment given now, so my intestines and rectum were radiated pretty significantly. Despite this, I lived from 21 to now mostly like a regular person bowel wise. I'd go a couple of times a day, have bouts of diarrhea more frequently than normal folks, but all in all it wasn't bad at all.

As a precaution I had annual colonoscopies going forward and it was discovered that I carry the gene for colon cancer. As I've aged I had more and more polyps with my last colonoscopy a year ago showing several early but cancerous. Since due to my genetics these polyps are more aggressive and frequent than typical polyps it was recommended that I get the rest of my large bowel removed.

Had that surgery 8 months ago and had my small intestine connected to my remaining rectum (I have half left my surgeon said from my earlier cancer surgery). My surgeon connected my small intestine to the side of my rectum. She said patients like me had better outcomes with that type of hookup. I had a bag for 7 of those months while the anastomosis healed. My doc wasn't sure the connection would heal ok due to all my previous radiation damage, so she let me heal for 6 months before testing to see if the connection was solid. Turned out it was.

Now, the last 4 weeks have been extremely difficult. The first two I tried to follow a very bland diet with metamucil 3x per day. I still had very water stools and went to the bathroom 20+ times a day. I tried to walk a couple of miles a day and most walks ended up with me rushing to the potty or not quite making it. I started using Imodium 2x a day the start of week 3 and while I still continued to go 15 - 20x a day, the stools become more solid, small but more solid. Call it half way normal. The primary benefit of this was relief to my aching butt. I could also control the urge to go much better. The urge was still there but I could hold it pretty effectively, I stopped wearing diapers during the day during this time. Week 4 has brought the stool quality up to even firmer, slightly larger pieces, call them a 3.5 out of 5, but I'm still going 10x - 15x a day. Alcohol and sweets totally mess me up I've found out.

I'll post updates weekly ITT if anyone is interested. I read mainly horror stories about the reversal so I thought I'd share my progress as it happened. I'm far from normal and likely never will be, but I'm much happier now without the bag. And I can control things pretty well and moderate eating enough to make a couple hour car trip pretty easily. But I have to prepare by not eating or drinking much like 8 hours before. Hopefully this improves and I won't need to do this forever.

NHMike
Posts: 2549
Joined: Fri Jul 21, 2017 3:43 am

Re: Ileostomy Reversal - My Journey

Postby NHMike » Sat Jun 26, 2021 6:29 pm

You've had a rough time for a very long time.

I've been through what you're going through and things get somewhat better with time but part of that is managing things better. Things that I've found helpful:

- A bag or kit to deal with emergencies
- Supplements that work for you (I use VItamin D3, Nopalina, Probiotic, Slippery Elm, Magnesium)
- Planning and knowing where there are bathrooms if you need to travel
- Your own bathroom
- Regular exercise for cardio, balance, flexibility and strength

There are lots of people here that have been through this. Some have an easier time of it. Some continue to have difficulties. I'm three years out from my reversal.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

User avatar
Stomatrooper
Posts: 489
Joined: Fri Dec 31, 2010 11:56 pm
Location: Auckland New Zealand

Re: Ileostomy Reversal - My Journey

Postby Stomatrooper » Sun Jun 27, 2021 12:46 am

Thanks for posting Xndman

I can relate to your circumstances and it's always interesting to read posts of similar experiences. Mine was a low rectal tumour (resulting in rectum removal along with half the sigmoid colon and half the anal canal). Following ULAR surgery I had a temporary illeostomy & reversal - that was 2010 - I'm now 66 years old. Rectal cancer killed my Dad and a couple of other family members.

My longer-term view/experience of the reversal:

Life with the temporary stoma was ok if not ideal, the stoma and bag issues mostly nuisance stuff barely impacting on my day-to-day life and the bag eliminates a lot of 'accident' risk. Life since reversal has not been ideal either (control not what it was) though I am happy with the outcome overall and things have improved with the passage of time - on balance I prefer life as-is over 'bag-life'. Urgency was particularly bad in the early days post-reversal and can still be so along with loose stool and modest leakage issues, but overall life's good, relativly normal and I don't normally plan my trips with regard to proximity of 'bathrooms' too much - I am fairly relaxed with my diet, though the system is much more sensitive to diet than in pre-op' days and it can pay to bear this in mind, especially when travelling.
There has always been benign Polyps to remove during follow-up colonoscopy's.

As per NH Mike - it's not a bad idea to travel with emergency kits (extra undies etc) and be sensible with diet, if I can mostly get through without much consideration of what I eat there has been a few occasions that I've regretted it.

It's a few years since I visited this useful site and did on this occasion, out-of-the-blue, after I wondered about long-term experiences of others with illeostomy reversals and knew the Colon Club forum was as good as any to find out - then funnily enough yours was about the first post I saw.

Good luck with your progress now and in the longer term

Kia Kaha


John
John, Diag. 20 5 2010 @55
Rectal, 2cm dia, 3cm from anal verge
T2N0M0
5.5 Wk Chemorad
ULAR Oct 2010
Temp Ileo, infection; blockage; incisional hernia
Takedown Jan 2011
Hernia fix - June 2011
Clean CT 2011; 2012 & 2015
Clean scope May 2013

Xndman
Posts: 9
Joined: Sat Jun 26, 2021 4:07 am

Re: Ileostomy Reversal - My Journey

Postby Xndman » Sun Jun 27, 2021 7:26 pm

I appreciate the replies and the super helpful suggestion. I'm encouraged that after 4 weeks out I'm significantly improved from weeks 1 and 2. I'd like to rely on Metamucil and Imodium less but I'll do what I need to do until my small bowel hopefully learns some new tricks.

I'll pop in here from time to time and update my continuing successes as well as struggles. One thing for sure right now, alcohol does not agree with my new digestive system.

Good luck everyone!

NHMike
Posts: 2549
Joined: Fri Jul 21, 2017 3:43 am

Re: Ileostomy Reversal - My Journey

Postby NHMike » Mon Jun 28, 2021 11:00 am

One thing that I forgot to mention is the potential for scar tissue. This can show up about six months after surgery. It can result in a hit at Quality of Life.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Xndman
Posts: 9
Joined: Sat Jun 26, 2021 4:07 am

Re: Ileostomy Reversal - My Journey

Postby Xndman » Tue Jun 29, 2021 5:50 am

What kind of scar tissue and where? I had a ton in my abdomen from my earlier surgery that my doc had to clean out.

NHMike
Posts: 2549
Joined: Fri Jul 21, 2017 3:43 am

Re: Ileostomy Reversal - My Journey

Postby NHMike » Tue Jun 29, 2021 11:22 am

Xndman wrote:What kind of scar tissue and where? I had a ton in my abdomen from my earlier surgery that my doc had to clean out.


At the temporary illesostomy site.

Could you describe the surgery and how long it took to recover from it? I'm considering it but am kind of a chicken on another surgery and recovery.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Xndman
Posts: 9
Joined: Sat Jun 26, 2021 4:07 am

Re: Ileostomy Reversal - My Journey

Postby Xndman » Thu Jul 01, 2021 5:35 am

My first surgery to remove was colon was long and complicated. My doc had to do it open because of all the scar tissue I had around my colon and abdomen due to my first surgery 30+ years ago. It took around 9 hours and I was in the hospital for 11 days. Very very unpleasant. Painful and I had to have an NG tube put in for about half the time, no fun.

My second surgery almost 6 weeks ago to take down the temporary ileostomy was much less intense. While my doc had to do it open again, the surgery only last 2 1/2hrs or so. Pain was very bad in recovery but not bad by the next day (with no opioids since I wanted my bowels to wake up quickly). I woke up with an NG tube but that came out after night 2 and I was discharged after night 3. The takedown surgery was much less painful and recovery much faster than the original surgery, as is to be expected.

For an update on me, my bowels are still coming around slowly, I'm no longer wearing diapers as a precaution, and I'm able to get 3+ hours of straight sleep now. I still go to the potty between 10 - 15 times per day, but that's down from 25. So things are trending in the right direction so far.

Good luck to everyone on their cancer recovery journey!

Xndman
Posts: 9
Joined: Sat Jun 26, 2021 4:07 am

Re: Ileostomy Reversal - My Journey

Postby Xndman » Sat Aug 07, 2021 8:30 am

Hello everyone. It's about 5 weeks from last post and 10 weeks from surgery.

Other than one weird 7 hour diarrhea fest about a week ago, the consistency of my stools have improved and remained consistent. Out of 5 I'd say around a 3.5 or 4.

I still go a lot, like 10x a day, but that's more for my comfort. I'm able to be away from the bathroom for hours and handle myself just fine. Either I don't feel the urge or I can hold it easily.

I still won't eat away from the house simply because I typically have to use the restroom shortly after, but that's my main restriction. I basically eat and drink whatever I want and sweets and alcohol don't run right through me like they used to. Hopefully I'll continue to improve where I feel comfortable eating out.


So far my experience post reversal has actually been better than I expected. It's nice working from home but when I have to go back in the office I'm comfortable I'll be able to handle it.

I'll continue to update every few weeks.

Good luck and good health everyone!

NHMike
Posts: 2549
Joined: Fri Jul 21, 2017 3:43 am

Re: Ileostomy Reversal - My Journey

Postby NHMike » Sat Aug 07, 2021 9:04 am

Sounds like great progress!
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Rikimaroo
Posts: 355
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Ileostomy Reversal - My Journey

Postby Rikimaroo » Sat Aug 07, 2021 2:51 pm

Hi there - not to be negative but I had the ileo reversal and I couldn't deal with it after a year. From the unexpected frequency, butt pain after pooping so much, driving and shitting myself (wore diapers all the time), did I mention pooping burn butt pain after pooping so much, and just the fact I seemed chained to the toilet? I decided to get a colostomy bag and I got to be honest my life is so much easier now and I can do anything without concern of having to be tied to the toilet. My colostomy bag can be reversed as I still have everything intact. I don't think I will though unless they figure out rectal transplants LOL....or some kind of makeup for a rectum. I had my rectum removed as well.

I couldn't live with going to the bathroom 6-7 times a day, or go and make a big old POOP and then go 3-6 times after that runny poop that causes your ass to burn so bad. Fuck that...I got the bag cause its easier and the bag is super easy to deal with. Of course its a nuisance though, but whatever.

To all those that did Ileo reversal and stuck with the issues I mentioned above more power to you, I feel for you and whatever decision is made be it get a colostomy or stay without a rectum, all is accepted. No decision is wrong. You got to do what you want to do for yourself. I wear a little bigger button up shirts so my bag doesn't show through, which has worked. I tried the stealth belt but it kind of sucks, because it is to tight on the bag and doesn't give it much breathing room, so if you have to go bad poop can burst through the sides.

Anyway that's my take on the situation, I couldn't handle the unpredictable pooping, I am too busy to be locked down on the toilet, I am fine taking a shit while I am talking to a client he doesn't have a clue LOL....

PS I had progress like you guys, but it will never be the same again. Your going to have accidents, unpredictable pooping at the worse times...butt it can be workable, just not for me.

<3
Riki
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

Xndman
Posts: 9
Joined: Sat Jun 26, 2021 4:07 am

Re: Ileostomy Reversal - My Journey

Postby Xndman » Sun Aug 08, 2021 5:55 am

Hey Riki, sorry the reversal didn't work out for you. When I had my 7 hour bout with diarrhea, my ass felt like it was literally on fire, definitely couldn't live like that constantly. I also wouldn't want to worry about pooping myself or wearing diapers all the time. It seems like you found a solution that works for you so congrats.

I really disliked the bag and am glad to not have it anymore but I can certainly see the convenience some find in it.

As long as we're all healthy and happy and able to navigate life so we're comfortable, that's what counts.

Good health everyone.

Rikimaroo
Posts: 355
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Ileostomy Reversal - My Journey

Postby Rikimaroo » Thu Aug 12, 2021 12:48 pm

Hi XndMan,

I reread your post and I yes!! - you been through a lot. Losing your Large Intestine is why your stool is more watery since it doesn't get time to form and yes you will be going more because of less piping to flow through. The crazy thing is I had my large intestine still and maybe my patience ran thin and I gave up, but I knew how I felt after 1 year and honestly I don't mind the bag, I don't love it, but its been a blessing. I don't think I can handle your setup (No Large Colon), but glad its improving as time goes on for you.

Keep at it brother, we all going through this together.

Holla at NHMike, great guy!!. NH - to touch on your post open abdomen surgery to help with scar tissue can make more scar tissue and might alleviate some issues initially but they can come back per my Colorectal Surgeon. If the pain in severe in the abdomen when stool is passing through cause some of the smaller intestines are not free, and might be sticking to each other because of adhesions/scar tissue then surgery would be provided.

I have been taken probiotics per Beach recommendation and it has helped. I stopped taken prescription medicine for the bad stomach spasms/waves of pain since its gotten better, it has not gone away, but its not as severe. Still makes me stop walking for a minute while its happening.

Riki
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

Xndman
Posts: 9
Joined: Sat Jun 26, 2021 4:07 am

Re: Ileostomy Reversal - My Journey

Postby Xndman » Thu Aug 26, 2021 6:32 pm

Hi fellow colon issue sufferers.

I am almost 13 weeks post surgery and I can report that my small intestine is continuing to take on more characteristics of my large intestine. I take Metamucil 3x a day and imodium 2x a day. But what comes out of my butt is much better than what went into the my bag. Say almost 1/2 way between bag and normal.

I feel like I can leave the house whenever I want. Obviously I'd prefer to have facilities close, but I can hold it for a long time if necessary. Still haven't eaten at a restaurant but that's coming soon and I think I'll just need to use their facilities once or twice.

Side note. I'm not gaining weight at all. Is this something y'all have experienced?

NHMike
Posts: 2549
Joined: Fri Jul 21, 2017 3:43 am

Re: Ileostomy Reversal - My Journey

Postby NHMike » Fri Aug 27, 2021 4:36 am

Xndman wrote:Hi fellow colon issue sufferers.

I am almost 13 weeks post surgery and I can report that my small intestine is continuing to take on more characteristics of my large intestine. I take Metamucil 3x a day and imodium 2x a day. But what comes out of my butt is much better than what went into the my bag. Say almost 1/2 way between bag and normal.

I feel like I can leave the house whenever I want. Obviously I'd prefer to have facilities close, but I can hold it for a long time if necessary. Still haven't eaten at a restaurant but that's coming soon and I think I'll just need to use their facilities once or twice.

Side note. I'm not gaining weight at all. Is this something y'all have experienced?


I have not tried taking that much fiber and can't take Imodium because of the bowel obstruction issues but things do get better with time, out to a year from recollection.

My weight has been all over the place but things get predictable after some time out. The loss of time adds stress which can result in weight loss or weight gain.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT


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