Returning to exercise...but HOW?!

[Richie]

Ileostomate here, presently 10 weeks out from surgery. Was very active before surgery - fast walking, hiking, running, biking, swimming, light lifting, yoga, rock climbing, skiing, zumba.

So far, post surgery, I've just been walking. I can get up to about an hour a day now, but not too fast. But now what?! I'm not sure what to turn to next SAFELY. I'm very worried about hernias but it seems like you're damned if you do, damned if you don't. Lift too much or place too much strain on the core by strengthening, and you've got a hernia. Let your core weaken or lounge too much, and boom, you've set yourself up for one too.

So how did you return to physical activity? How long did you wait? What precautions did you take? What support belts or binders did you wear? Did you end up with any hernias in the process? Would you do anything different next time?

I have the Coloplast binder but find it very uncomfortable. It rises too high to uncomfortably cinch around my ribcage and the hole cut for the flange is irritating. I hope as my abdomen becomes less sensitive in time, this will be less of a concern. I also don't like that binders don't hold the bag itself, as is the case with NuHope products too. I've been recommended the Stealthbelt, but am unsure how great those are for hernia prevention as they aren't binders to my understanding.

Anyways, hoping to learn from a variety of experiences, so don't be shy! Thanks in advance.

[ot dave]

Hey Richie,
Exercise/recovery is like an ostomy. It's going to be unique to the individual. Lots of factors play into it as well. Prior level of function, age, disease process, nutrition, etc, etc. So far, it sounds like you are doing everything recommended. Waking is huge in recovery from most surgeries. I was 37 at the time of my ostomy. I had 2 young kids, I'm a pediatric occupational therapist, so I was moving and active a lot with family and work. I played softball, I'm a scuba diver. I enjoy hunting/fishing and outdoor activities. I was a scout leader. But, I was also over weight. Initially I didn't use any support, and developed a hernia (part of it was lack of knowledge, part of it was me thinking it won't happen to me, part of it was lack of education/communication from my care team). Also, I had rectal cancer, so I had to go through 6 months of chemo after my surgery, so I wasn't rushing back into physical activity. I did what I could when I had the energy to do so. Once chemo was completed, I gradually reintroduced my activities and went on with my life. I did develop a hernia, and started wearing an abdominal binder at that point. Now I wear it all of the time.
Lived with it for about 6 years without any issues. Had it repaired, but it only lasted a few years. Had a second repair with a re-siting of the stoma. After the second repair, my wife was diagnosed with a brain tumor. She eventually lost function of the left side of her body, and I being a therapist was doing a lot of her transfers from seat to seat. The hernia blew out at that time...worse this time. So now, I'm in the process of losing weight so that I can get this volleyball sized hernia repaired.

So, to answer your questions, I returned to physical activity as my body allowed...you'll just know. Wait as long as your body is telling you to...again, this is going to be unique to your situation. Start slow, build up as you go.

I didn't really take precautions, and I've paid the price ever since, but you are correct, you're darned if you do, darned if you don't work on core activities. As noted, I wear an abdominal binder now. I have a colostomy, so I irrigate daily and don't have output until I irrigate again the next morning, so a complete binder works well for me. Obviously with an ileostomy, this is not ideal. NuHopes belts are probably the best for support, in my opinion. In addition to my binder or when using the NuHope belt, I wear under armor compression shirts. They do a nice job of keeping everything close to my core. And, they are flexible enough to allow for output without causing pancaking issues. I bought a Stealthbelt, and it works fine, but as you noted, they don't provide the support needed to prevent or manage a hernia. They are spandex, and simply don't provide that type of support.

As I've mentioned, yes I ended up with a hernia, but a stoma is the actual definition of a hernia, so you already have one!! Again a lot of factors play into hernia causation and management afterward. My hernias have not caused any pain or blockages, so I've been lucky in that respect, but finding clothes to accommodate it now can be challenging.

As far as doing anything different.... Yeah, I probably would have been more proactive with finding a good support belt sooner. But, I'm not upset that I kept on going with my life. I've tried for over 15 year now to not let this ostomy have too great of an impact on how I live my life. Does it produce challenges and some extra planning? Sure, but I've never let it limit me in anything that I wanted to accomplish.

Hope some of that helps.

David

[Richie]

Thank you so much Dave for this advice and sharing your experience! So appreciated in all the detail, reflection, and honesty.

[GeorgeS]

I irrigate daily and don't have output until I irrigate again the next morning, so a complete binder works well for me. Obviously with an ileostomy, this is not ideal.

Dave, do how long does this process take you daily? I've heard from a coworker that her grandmother takes 2 hours but not sure if this is daily or every other day. And her being in her 90's, I'm thinking it could be harder and longer to do.

Thanks for your prospective on parastomal hernias. I too have one forming but with little issues other than self-image and trying to hide it more. I have a hernia belt with a pouch hole that feels fine to wear. I just cannot wear it 24/7. I'm also using Metamucil before each meal to keep the stool softer. At some point I need to try improving my core too. Belly fat seems to run in the family, or drinking beer, that is probably the biggest contributor.

[ot dave]

Hey George.
Irrigation usually takes me about 45 minutes to complete. I do irrigate daily, but there are others who can go 2 or 3 days between sessions. With diet and immodium, I've reliably been able to go 48 hours between sessions. I irrigate in the morning, so I typically get up about 2 hours before I need to leave the house, unless I'm going out to hunt in the morning during the fall/winter. I use the extra time to allow for any late returns, and to check this board, check email, etc., before I get up to get a shower and dressed. Again, this is only an option for colostomates. It's not effective for folks with an ileostomy.
If you're interested in trying it out, check out the irrigation forum. Lots of infromation and irrigators that can point you in the right directions. I've been irrigating since 2010, it's the one thing that allows me some control over my bowels these days. Hope that helps.

David

[fifi]

I’m about 12 weeks post-surgery and also cautious with core exercises. I focused on gentle walking, yoga stretches, and light resistance bands. The binder helps during activity, but I often go without for short sessions. Gradual progression and listening to your body seem safest.

[Shamrock4806]

Ileostomate here, presently 10 weeks out from surgery.

Anyways, hoping to learn from a variety of experiences, so don't be shy! Thanks in advance.

Okay your worried about getting hernia but currently don't have one so wearing the constricting binder is not necessary as long as your not doing strenuous exercise right? Check with your doctor as always.

So since it takes time for the body to fully heal and although laying on your back all the time isn't the way to go, but just do some things around the house but short of lifting, carrying, pushing or pulling heavy things around.

You must resign yourself to the fact that now you have HALF a digestive system and thus half the energy and strength you used to have.

Concentrate on flawless wafer attachment and your ileostomy diet and nutrition, the body will heal over the next year or so and then you can be slightly more adventurous within reason and doctors approval.

You definitely DON'T want a hernia because it will act behind the scenes to push your wafer off and cause leaks which will burn the skin.

Here are some tips for you.

1: Use oil free eye makeup remover as an adhesive remover to get the wafer off and soak it in around the stoma to remove adhesive and condition the deep skin. Be sure to wash it off with plain soap like ivory and rinse to remove it off the surface of the skin, the skin should squeak when you rub it, blow dry well and that makes for the absolute best skin to bond with. Use nothing else under the water except stoma or athletes fungal powder (if you have skin fungal infection) and spray skin protectant.

2: Sleep only on your back by training yourself with a pillow under each arm for a few nights. This avoids a lot of problems. Becomes automatic after that.

3: Diet control is absolutely imperative or clogging, blockage, diarrhea, pancaking or ballooning will occur that may end up with another hospital visit for severe dehydration or blockages. See an ostomy dietician and an ostomy nurse. Too much of anything can cause issues, salt, fat, sugar etc. the list is vast.

4: Use a online body contour check to ensure your using the right wafer for your stoma.

5: If you use paste, no sting alcohol free is best but you might need to use more to the width available on the wafer.

6: If you use an ostomy belt, consider using extra large barrier strips AS TAPE over the belt hooks by exhaling and placing the center first and stretching out to bond, when you relax it will place downward pressure on the wafer. Belts have problems because they move the water causing leaks and pinch the wafer down into the skin, especially on one side. Then weak tension on the other side as it lifts it up and causes leaks.

7: Learn to rinse your ostomy bag with just plain water bottle gently to remove waste so it doesn't build up and rot and stink to high heaven. After it's clean a dollop of cheap toothpaste before sealing will keep the bag nearly always clean smelling. Not 100% all the time but it's very close.

7.5 Typical wafer wear time is usually about 3 days, some can go as long as 5. However if your feeling any sort of consistent pain, it's likely a leak, wait until the stoma is quiet by not eating or drinking anything and do a wafer/bag change.

8: Your water and toilet paper bills are going to rise significantly.

9: Keep plenty of ostomy supplies on hand, even the stuff yotf not using might come in handy. Stock up and if insurance doesn't allow you it can buy privately so you never run out. Running out of supplies is very bad as the skin is subjected to burning from enzymes eating it for lunch.

10: Coffee and caffeine can significantly increase stomach acid production which too much WON'T be neutralized to an more acceptable 8 pH by the lower intestines and therefore exiting the stoma at full strength which will eat through barrier adhesive and skin like a hot knife through butter. The pain is very bad. However decaffeinated tea or herbal teas can be very gentle to ostomies. Check with ChatGPT because some might cause diarrhea. Sip a little and wait awhile to see what happens.

11: You should be urinating normally a light yellow or clear like before, if not like orange or no pee when dumping, your likely dehydrated and need a Oral Rehydrate Solution (not Pedialyte or Gatorade) you can make your own at home simply by following medically approved methods online. Dead simple.

12: Nutrition is absolutely imperative with an ileostomy ESPECIALLY B12 and others related to dehydration which an ileostomy person suffers from with so much fluid going out. So ensure your maintaining your body's, balance. Diets high in protein, medium carbs and low in fat is best. Again see an ostomy dietician and do your homework on that.

13: Try foods in small amounts before eating up to 6 oz max of everything at one time, ESPECIALLY PASTA as it can cause a deep sleep which you could wake up to a mess.

14: Rice and pasta must be cooked slightly past el dente or it keeps absorbing water and can cause pancaking (super thick stool) which can force the wafer off the skin and cause a blowout.

15: Veggies, leafy greens, yams, potatoes (mashed without skins or chunks are okay) tough parts of meats, low moisture cheese, fruit (juices okay in small amounts), salt, spices, too much fat, artificial ingredients, seeds, nuts, popcorn, very dry foods like crackers, cakes or cookies, coffee, caffeine, alcohol, fish, seafood, asparagus and (Jesus help us) so many foods are bad for an illeostomy is why you need to see an ostomy nurse or this guide I copied from mine.

viewtopic.php?t=27735

If you don't get your diet under control you will suffer the consequences!