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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@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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Thank you again for these detailed comments. We have read through these several times and really appreciate them. We are prepared for the short term pain for long term gain. So glad to know that between mid February and early June you got to a place of it being not a big deal!!!

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@wifeworry

Thank you again for these detailed comments. We have read through these several times and really appreciate them. We are prepared for the short term pain for long term gain. So glad to know that between mid February and early June you got to a place of it being not a big deal!!!

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You're welcome! I was at Rochester and found them to be a wonderful team. Discharge day seemed a bit disorganized but everyone was still super helpful.

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@wifeworry

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

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Smart! My Montana body is going to hate my July 31st appt in AZ!!!

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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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I live in GA, so Jacksonville is closest. 6 hr drive.
Flew once but they cancelled our flight so we had to fly into Datong Beach, rent a car and drive 90 min to Jacksonville 🤪

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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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Nothing happened quickly for me.
Surgeon ordered more tests, which were needed and those were scheduled 4 weeks out.
Surgery was full so the earliest I got was June 21st…first apt at mayo was April 5th………just be prepared

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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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All your comment are excellent and great source of information for patients. I would like to add couple of more points. The stoma guard and a good support belt is the best thing invented and my opinion should be provided for all patients to take home at time of hospital discharge. Ask for a stoma guard. IF the hospital you will have surgery does not carry them does hospital surgeon/doctor can order one one from your pharmacy. .
I now also wear a 45" X65" inch velcro support belt which covers below by breast bone 2 inches past my belly button. IT this is too small you can have cleaners or seamstress sew two belts together for greater support. This sewing of two support belts also helps your lower back a great deal. Many senior people have osteoporosis and the pain is unbearable. . Additionally, I had seamstress cut a hole where needed for the tubing. I have also used a quart or gallon zip lock bag covering the stoma bag area if I am traveling in case of accidents. Often a different stoma design is necessary. Taping zip lock bag against support bet with electrical tape helps. Only have been used on long trips when stoma bag cannot be changed. This make such much easier for me if I am to have am to have leakage.
Velcro support belts ate sold at medical supply stores or amazon. PS> Medicare does not cover support belts of any kind. I also have gone through four of these support belts. Hooks can be sewn on them so velcro doesn't get worn out when adjusting.

The healing ,yes is a process, I changed bags everyday. I understand not everyone can afford them. Check to see if your insurance pays for all necessary bags needed.

My back was extremely painful in addition dealing with my diverticulosis surgery. . I used cbd balm 300 mg on my back and omg it made all the difference. and it certainly helped a great deal along with some Tylenol . CBD does not ABSORB INTO THE BLOOD STREAM affecting any medications you are presently taking.
As far as using the toilet, have friends bring you (if they ask what you need) the bleach./blue toilet tank tablets you put int toilet bowel to disinfect bowel. They help a great deal. Spray with Lysol after emptying bag. I have OCD with cleaning.
Diet is very important. Small meals makes the difference but going slow with smoothies of all kinds, vegetable and fish and fruit does the trick and will not leave you hungry leave you hungry. I supplemented with Ensure and carnation instant chocolate shake mixes, adding 2 tablespoons of protein powder and fruit of your choice. Slowly introduce stewed vegetables and starches. No grains.

Also there are sprays you can use in your bath toilet areas. Plug in Fabreze sent works for me. For women body sprays. Jean Nate works as I believe your bodyPH changes after surgery.

Lastly Please Please be very very careful with what you pick up and bending. WE can easily injure ourselves and not even realize it. . Bring things down from your shelves for easy access. NO bending down for a very long time. IT could be for as long a months or until what date your your doctors instructs. I thought was fine after 4 months post surgery and I decided to go do a little gardening. I use a long arm handle garden pruner/ cutter scissors and cut good size rhododendron branches The story will be short. I gave myself a good size hernia of which I will be having surgery to repair early next month.
I thought I was just gaining weight. until my daughter commented I looked nine months pregnant. Had an appointment with gastro surgeon and hernia was confirmed with a a CT SCAN. So beware anyone even if you feel strong again. Please get clearance to resume physical activity that could further injure your surgery and cause other complications. IT"S just not worth it too early after surgery. Don't take chances until you re totally healed and have built up those muscles. You must heal to resume activity until dr confirms you are ok. Best of luck to all.

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@yani2023

All your comment are excellent and great source of information for patients. I would like to add couple of more points. The stoma guard and a good support belt is the best thing invented and my opinion should be provided for all patients to take home at time of hospital discharge. Ask for a stoma guard. IF the hospital you will have surgery does not carry them does hospital surgeon/doctor can order one one from your pharmacy. .
I now also wear a 45" X65" inch velcro support belt which covers below by breast bone 2 inches past my belly button. IT this is too small you can have cleaners or seamstress sew two belts together for greater support. This sewing of two support belts also helps your lower back a great deal. Many senior people have osteoporosis and the pain is unbearable. . Additionally, I had seamstress cut a hole where needed for the tubing. I have also used a quart or gallon zip lock bag covering the stoma bag area if I am traveling in case of accidents. Often a different stoma design is necessary. Taping zip lock bag against support bet with electrical tape helps. Only have been used on long trips when stoma bag cannot be changed. This make such much easier for me if I am to have am to have leakage.
Velcro support belts ate sold at medical supply stores or amazon. PS> Medicare does not cover support belts of any kind. I also have gone through four of these support belts. Hooks can be sewn on them so velcro doesn't get worn out when adjusting.

The healing ,yes is a process, I changed bags everyday. I understand not everyone can afford them. Check to see if your insurance pays for all necessary bags needed.

My back was extremely painful in addition dealing with my diverticulosis surgery. . I used cbd balm 300 mg on my back and omg it made all the difference. and it certainly helped a great deal along with some Tylenol . CBD does not ABSORB INTO THE BLOOD STREAM affecting any medications you are presently taking.
As far as using the toilet, have friends bring you (if they ask what you need) the bleach./blue toilet tank tablets you put int toilet bowel to disinfect bowel. They help a great deal. Spray with Lysol after emptying bag. I have OCD with cleaning.
Diet is very important. Small meals makes the difference but going slow with smoothies of all kinds, vegetable and fish and fruit does the trick and will not leave you hungry leave you hungry. I supplemented with Ensure and carnation instant chocolate shake mixes, adding 2 tablespoons of protein powder and fruit of your choice. Slowly introduce stewed vegetables and starches. No grains.

Also there are sprays you can use in your bath toilet areas. Plug in Fabreze sent works for me. For women body sprays. Jean Nate works as I believe your bodyPH changes after surgery.

Lastly Please Please be very very careful with what you pick up and bending. WE can easily injure ourselves and not even realize it. . Bring things down from your shelves for easy access. NO bending down for a very long time. IT could be for as long a months or until what date your your doctors instructs. I thought was fine after 4 months post surgery and I decided to go do a little gardening. I use a long arm handle garden pruner/ cutter scissors and cut good size rhododendron branches The story will be short. I gave myself a good size hernia of which I will be having surgery to repair early next month.
I thought I was just gaining weight. until my daughter commented I looked nine months pregnant. Had an appointment with gastro surgeon and hernia was confirmed with a a CT SCAN. So beware anyone even if you feel strong again. Please get clearance to resume physical activity that could further injure your surgery and cause other complications. IT"S just not worth it too early after surgery. Don't take chances until you re totally healed and have built up those muscles. You must heal to resume activity until dr confirms you are ok. Best of luck to all.

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Thank you for all this info.
I have taken pics of it.
I am headed to Mayo Jacksonville for my surgery on Wednesday 🙏🏻

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Hey
Has Anyone here had a total colectomy with a permanent ileostomy??
Any help would be much appreciated.
Surgery is Wednesday.
We meet with stoma nurse tomorrow.
I just feel lost. Hoping after my pre op appointments tomorrow I will feel better.

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@jtags

Hey
Has Anyone here had a total colectomy with a permanent ileostomy??
Any help would be much appreciated.
Surgery is Wednesday.
We meet with stoma nurse tomorrow.
I just feel lost. Hoping after my pre op appointments tomorrow I will feel better.

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I know its frighten with the unknown , First nurses drs are great especially in this area. There is not pain. Do not concern yourself about that. You will have a nurse come to your home once you are discharge from hospital to train you at home and you will receive training in hospital as well. I video the training as I knew I was so nervous I would easily forget. OMD did that help I din't have to be calling nurse constantly.

You many want to sleep initially on a recliner. OMG that works really well as you don't have to compromise your stomach in anyway. Lifting you legs for circulation also helps a great deal.

I am compulsively clean, I had deodorizer tables into the bag as I did not want to smell a thing, They work. You will receive clear plastic patches to put over the area of surgery so. you can shower, Bathing is out of the question As told my my drs. I loved bathing, IT's gone as area cannot get wet at all. I also used an anapestic cream when I removed the plastic covering after showering. There are different kind of equipment nurse hopefully will provide you with what is most comfortable for you. In winter it not a bother. Best of luck to you and you will be fine, It's takes a while getting used to yet it's doable. I had a stoma bag for 3 1/2 months post kidney transplant as I caught an infection in my intestines... Take care and contact me if you have ant other questions.

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@jtags

Thank you for all this info.
I have taken pics of it.
I am headed to Mayo Jacksonville for my surgery on Wednesday 🙏🏻

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Hi, I hope I have included as much as I could remember. Take a deep breaths going into surgery and coming out at recovery. The surgery is an adjustment for a new way of life that is doable. Drs at Mayo stay on top of everything.
One thing also I forgot to mention was if you have a tape recorder. when drs walks in to your room you may want to tape what they say to you and or the person in the room especially if you want to review the conversation or take notes . After surgery I thought I lost my memory yet it's just the adjustment to the wearing off medication before surgery. Some drs don't like us recording them, yet often you are bombarded with either instructions on what drs want you to do can be overwhelming. Written instruction are provided to you at time of discharge. All this is done post surgery. Having a recorder I found very useful for myself unless. you take shorthand. Directions and equipment you manned home will be discussed. and also the concerns about scheduling your medication and directions for when you return home.
Certainly Drs,. nurses & dieticians will discuss soft diet minus spices ( OMG I spice everything), I found polenta helped a lot or creamed spinach or corn soufflé )Stouffer's sell in frozen section of store and they are pretty filling after surgery as well as mild puddings, I ate Mild broiled fish Soaked in milk to remove fish smell, rinse and ready to broil. I topped fish with with cream dressing like Ranch or your choice. . English muffins are gentle also with pinch of peanut butter . Corn tortillas with avocado or coccus with beans of any kind for gentle protein. Tofu can be made to taste like chicken salad adding olives, pickles, pimento yet blend as much as possible to. make it look like a paste. Great on crackers plain, Coccus with roasted peppers (from a jar). My favorite great snack on non grain bread on a English muffin or yellow corn tortilla. I also ate tuna fish white albacore and chicken salad made from a blender.
Oh, yes most important if you can juice beets, Beet are so VIP and help your blood to maintain iron levels . They contain iron which is vital and they can been combined with blueberries, carrots, pitted cherries. IT can be saved for midday snack or drink. Mashed potatoes and creamed corn. Your tummy needs time to adjust itself to it's new job. Egg salad or ham salad , however please who ever is cooking your meal should brush and clean veggies and fruit as much as possible with vinegar and water to kill bacteria. I could go on and on yet best stop here ... you can contact me if you need other help again or have other questions. You will be told to hydrate as much as possible. Good Luck you will be fine. Oh, I almost forgot Insure shakes, IF friends ask what they can bring you when. you are. home, Fruit,( watermelon, cantaloupe, instant carnation, Ensure shakes, Frozen fruit for. your freezer. is the best. I even made popsicles for a treat as some med dry your mouth Ensure shakes sold at pharmacy or I believe on line. This are the things friend family can take you as get well gifts. Sorry I am all over the place .... a little ADD HERE. HA

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