Preparing for upcoming colostomy surgery-any clues on what to expect?

Posted by wifeworry @wifeworry, Jun 4, 2023

Hello - We are preparing for upcoming colostomy surgery. Anyone willing to share their recent experiences? We really don't know what to expect: recovery time, training, follow-up visits, return to work etc. Hospital is 6 hours away, so also trying to figure out how long to plan to stay. Thank You!

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I got a colostomy in mid Feb. Surgery was Thursday, discharge was Monday. Could probably have been discharged on Sunday but the ostomy folks were off on Sundays and I had only done a system change 2x so wasn't confident about doing it alone. No lifting >10#s for 6 weeks, which made me pretty wimpy. I'm an accountant and was working from home by the following week for a couple hours/day - standing was no issue, sitting was an issue - very uncomfortable and not supposed to sit for more than 10 minutes/hour for the first 3 weeks. Started working in the office after 6 weeks for 1/2 days and added an hour/week until I was back at full 8 hours days. Walk a lot - it helps everything to work better. I'm still adding foods most days to make sure they don't cause issues - it's a slow process, each person is different. I don't need chemo or radiation, so my only follow up visit was after 3 weeks to remove the drain tube and butt sutures. My drain tube leaked a lot since it was right in my belly crease, so I ended up using an ostomy pouch over the drain to stay dry. Was very little pain during recovery. At 5 weeks I wanted to know why I was experiencing some oddball pains that hadn't been there earlier in the recovery and I was told if I'm not bleeding, running a fever or have new redness, I'm fine and wait until around 12 weeks out to see if the issues are still there (they went away around week 9). I'm still abdominally weak but getting stronger every day. I have some core strength workout dvds that I haven't been very good at using - those would help a lot, could start doing those after the 6 week time. After 3.5 months, it's not a big deal for the most part - for the first couple weeks, I thought my bathroom was a bit of a toxic waste site. I would recommend keeping a spare set of clothing in the car all the time in case of bag failure or a really bad food response. The ostomy nurses were super helpful in answering questions. There is a stoma guard from stomagear.com that gives me a lot of confidence about not injuring the stoma. You may also want to look at a variety of support belts once you're back home - I got one in the hospital but it didn't work for me other than the initial abdominal support. I've now bought about 6 of them, none are perfect but some work better than others for me. My stoma is below my natural belly crease, so a lot of the thin belts just move up to my natural belly crease and then are pulling at my stoma. The whole process takes a bit of getting used to, but it's no big deal after a relative short learning curve.

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@pilottd

I got a colostomy in mid Feb. Surgery was Thursday, discharge was Monday. Could probably have been discharged on Sunday but the ostomy folks were off on Sundays and I had only done a system change 2x so wasn't confident about doing it alone. No lifting >10#s for 6 weeks, which made me pretty wimpy. I'm an accountant and was working from home by the following week for a couple hours/day - standing was no issue, sitting was an issue - very uncomfortable and not supposed to sit for more than 10 minutes/hour for the first 3 weeks. Started working in the office after 6 weeks for 1/2 days and added an hour/week until I was back at full 8 hours days. Walk a lot - it helps everything to work better. I'm still adding foods most days to make sure they don't cause issues - it's a slow process, each person is different. I don't need chemo or radiation, so my only follow up visit was after 3 weeks to remove the drain tube and butt sutures. My drain tube leaked a lot since it was right in my belly crease, so I ended up using an ostomy pouch over the drain to stay dry. Was very little pain during recovery. At 5 weeks I wanted to know why I was experiencing some oddball pains that hadn't been there earlier in the recovery and I was told if I'm not bleeding, running a fever or have new redness, I'm fine and wait until around 12 weeks out to see if the issues are still there (they went away around week 9). I'm still abdominally weak but getting stronger every day. I have some core strength workout dvds that I haven't been very good at using - those would help a lot, could start doing those after the 6 week time. After 3.5 months, it's not a big deal for the most part - for the first couple weeks, I thought my bathroom was a bit of a toxic waste site. I would recommend keeping a spare set of clothing in the car all the time in case of bag failure or a really bad food response. The ostomy nurses were super helpful in answering questions. There is a stoma guard from stomagear.com that gives me a lot of confidence about not injuring the stoma. You may also want to look at a variety of support belts once you're back home - I got one in the hospital but it didn't work for me other than the initial abdominal support. I've now bought about 6 of them, none are perfect but some work better than others for me. My stoma is below my natural belly crease, so a lot of the thin belts just move up to my natural belly crease and then are pulling at my stoma. The whole process takes a bit of getting used to, but it's no big deal after a relative short learning curve.

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One more thing - my home was 2 hours away from hospital. The drive home was terrible - we only made it about 30 minutes before I had to stop the first time. Walked around for about 30 minutes and then tried laying more on my side in the car - that worked better, but with a 6 hour trip, you should plan on a lot of stops. Might want to take the good drugs (oxycodon or whatever they prescribe) for the ride home. I only used tylenol and ibuprofin and stopped those on the 2nd day I was home since there really wasn't much pain.

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Thank you so much for the detailed response. This is exactly the kind of information we are looking for! Wonderful to hear that after 3.5 months its not that big of a deal! Thank you again.

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Please make sure you have a surgeon that specializes in colorectal surgery.

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@pilottd

One more thing - my home was 2 hours away from hospital. The drive home was terrible - we only made it about 30 minutes before I had to stop the first time. Walked around for about 30 minutes and then tried laying more on my side in the car - that worked better, but with a 6 hour trip, you should plan on a lot of stops. Might want to take the good drugs (oxycodon or whatever they prescribe) for the ride home. I only used tylenol and ibuprofin and stopped those on the 2nd day I was home since there really wasn't much pain.

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I am having a total colectomy and a permanent ileostomy.
That is great info about the ride home. I also have a 6 hr trip.
So idk how long we will be in condo before they let us leave the state.

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Please make sure the doctor explains the possibilities of post surgery complications.

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Hi.
I’m preparing for a total colectomy with a permanent ileostomy.
I also have a 6 hr trip.
We are coming in from GA. My surgery is the 21st.
When is yours?

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Ours isn't scheduled yet. Meeting various doctors in person on the 21st. We hope to know the exact surgery plan and date at that time. Hoping it is SOON, so we are planning to stay! Keep us posted on how it goes. Prayers that it goes smoothly.

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@wifeworry

Ours isn't scheduled yet. Meeting various doctors in person on the 21st. We hope to know the exact surgery plan and date at that time. Hoping it is SOON, so we are planning to stay! Keep us posted on how it goes. Prayers that it goes smoothly.

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Thank you.
Which campus are you going to?
I’m going to Jacksonville
My initial appointments at Mayo were beginning of April, so 2.5 months till my surgery date. Had to go back in May for additional testing

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@jtags

Thank you.
Which campus are you going to?
I’m going to Jacksonville
My initial appointments at Mayo were beginning of April, so 2.5 months till my surgery date. Had to go back in May for additional testing

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We go to Rochester - although wouldn't mind trying Jacksonville or Scottsdale for winter appointments - LOL!

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