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Acitivity limitations with ileostomy

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Posted 8/15/2014 3:22 PM (GMT 0)
Hi all,

I am trying to decide whether to stay with my current temp. diverting loop ileostomy that I have had for a year or to go ahead with my takedown for my j pouch. One of the things the doctors have disagreed on is what type of activities I can do with an ileostomy. I have young children and want to be very active with them. Can I ride a rollercoaster with an ileostomy with a lap bar (with the quick stops)? If young children are on/off your lap and roughhousing, can they hurt the stoma? I work with children with special needs (many with behavioral issues). Would I need to be concerned about the children that kick/hit sporadically during my treatment sessions and them accidentally hurting the stoma? Can you dive off a boat and the bag still stay on? (we are a boating family)? Would I be able to lift more with a j pouch with less risk of hernia? Thanks in advance for your answers. As you know, this is a very difficult decision.
Posted 8/15/2014 3:50 PM (GMT 0)
I don't have specific answers to your questions, but I'm curious as to why you're doubting takedown to pouch? There's no way I'd live the rest of my life with a loop ileo (which I currently have). If the pouch doesn't work out I'll go back to an end ileo. You've had the hardest surgery done now. If I didn't have the takedown op, I'd feel like I'd bought a car and never driven it!
Posted 8/15/2014 4:49 PM (GMT 0)
My surgeon always said I could do anything with my ostomy once I healed and I do. I have an permanent end ileo-- not a loop so I can't speak as to whether or not that makes a difference.

I rock climb, mountaineer, do yoga, run, backpack (with up to 55 pounds so far), cycle, ski, snowboard, do biathlon, swim, hot tub... the list goes on.

A couple of weeks ago I slid down a popular (and very safe) natural rock waterslide in a canyon that plunged over a 10-foot-high waterfall into a pool in the river. My appliance stayed on fine.

I also tried water skiing last month. I fell over and over in every body position imaginable and had no issues with my appliance.

I have even gone sledding on my belly... my stoma did fine.

I teach nature programs for toddlers and preschoolers as part of my job and get bumped into all the time. No issues. My job also requires carrying a lot of supplies around and I really don't worry much about lifting now. The first year I did... but I eased into things slowly gaining strength and now I am able to lift the same amount of weight I used to. When in doubt, I do put on my hernia prevention belt to give my abs a little extra support.

I haven't ridden any rollercoasters yet, but would not hesitate if the situation presented itself.

Stomas are tough little buggers. Mine has never gotten bruised even with all the things I do. Like I said, I do wear a hernia prevention belt for some of my activities (when backpacking, rock climbing or doing other sports that could be hard on the abs.) Stoma armor is available too, though I have not found the need to wear it as I don't do high-impact sports like hockey etc. I might consider that for a rollercoaster lap bar.

Best wishes with your decision.
Posted 8/15/2014 5:44 PM (GMT 0)
Silent Lucidity - I am hesitant about the takedown surgery because of all the complications/ issues I see online. There seems to be a lot! I have been very lucky and have done very well with my loop ileostomy. It stays on well, only 4 leaks in 11 months, mostly in the beginning when I was getting used to it andy skin does not have reactions to the adhesive. I do not have any pain now and can mostly control when I have to empty the pouch. I would certainly hope that I would have the average result my surgeon says is 5-6 BMs a day and 1 at night. not to have to worry about bag changes, planning every minute of what your activities will be so that you are prepared,and being able to have my kids up on my lap again would be fabulous. But what about pouchitis, fistulas, butt burn, diet issues, and the possibly of having 15-20 bowel movements a day if you are the unlucky one. I have 2 younger children and they have finally begun to get their mom back. If I do the surgery, I would hope that I would feel able to fully engage with them even more and start to feel even more like myself. But if I am not one of the lucky ones, I am afraid I will feel that I took their mom away again. Because I was so sick when I got my surgery, my surgeon just said jpouch was the way to go and I went along with it. So now, if I stay with the ileostomy, then I have the J pouch just sitting in there and 12 inches of small intestine that is not absorbing nutrients or helping to learn to retain water for me. In addition, not to share too much information, but we've all been through a lot of different things... I have to empty my j-pouch mucus several times a day. If I stayed with the ileostomy, I would still be emptying from my bottom periodically. I had some heart complications following my first surgery and it has been an uphill battle to get to this point.I just wish there was a way I could be sure that the 90-95% success rate surgeons tell me about is accurate, when all there seems to be is mostly problems online. I haven't read about many j pouchers out there hiking, boating, etc. I would love to hear from some!

Blue Heron - you are an inspiration.thank you for the information about the stoma protection belts and guard. I went hiking on the Colorado Trail for a day hike this summer.I carried a very light pack that did not require a hip belt.Trying to figure out how much water to drink was interesting! I think I drank too much as I was always having to stop to use the restroom the other way! Lol I was not aware we could lay on our stomachs. I haven't done that in a year - not sleeping, during a massage, etc. That doesn't bother you?

Is there anyone on the site that decided to keep their diverting loop ileostomy but still has their j pouch inside? Thanks so much for your help. It helps to run these things by people who are living it.
Posted 8/15/2014 8:16 PM (GMT 0)
Hi Keepmovinon!

I can't speak to the J pouch....I'm sorry because I know that's what you want to hear about.

I have had my loop for two years now. I am booked for a total proctolectomy in October and they will be removing everything. I can't wait to have this last surgery done.

With my loop, I do pass mucous, a lot some days. I too, haven't had many leaks and I have done tons of traveling. I cliff jumped into water this past weekend and my appliance stayed on well! No problems. I go for massages once a month and my therapist knows about my surgery so there are no secrets. She's even helped relax the muscles around my hernia (which will be repaired during my surgery) during massage.

The only thing I feel limited with is the amount I can lift......I am going to take it easy this year after my next surgery to avoid any incidence of a hernia. I think I did too much too soon last time.

I wish you the very best of luck! It's not an easy decision, whatever you decide. Surgery is hard, it takes a long time to recover, especially when you have a family.

Take good care!

K
Posted 8/15/2014 8:55 PM (GMT 0)
as far as I can tell, there are basically zero limitations with an ostomy- I have an end ileo too, so can't speak for a loop. But yes- rock climbing, water skiing, swimming, jumping children, crazy pets, you name it... I suppose you may want to use a protection belt for full-contact sports, but somehow I don't think that's what you wish to do! Good luck with your decision- it's rare to read about someone happy with a loop ileo!
Posted 8/15/2014 11:55 PM (GMT 0)
I've had no issues at all with my j pouch. I'm so grateful for it. I had endless issues with my loop ileo so for me going forward to takedown was a no brainer. I never had an end ileo since I had a two step procedure so I cannot speak of that. Sounds like you're doing great with your ileo though. All I can say is I love my j pouch and the freedom I have with it. There's no worries of changes or supplies. No urgency or anything close to it. I was on the beach the entire day yesterday with no need to use the bathroom.

Don't be afraid of going forward just based on what you read online. Most j pouchers are out living their lives and not posting on support forums. I only stick around to answer questions from time to time. Good luck with your decsion!
Posted 8/16/2014 11:48 AM (GMT 0)
I have a permanent ileo, unfortunately I had complications and the pouch could not be created...(unusual circumstances) I thought it would be the end of the world, and that I wouldn't cope at all...in fact it's been quite the opposite...two years on and all is well....you do what you feel is the right thing to do ....
Posted 8/16/2014 3:36 PM (GMT 0)
I had the same doubts about the j-pouch. My first op was a sub-total colectomy, with end ileo, and I agonised over the decision to get the pouch, or stick with the ileo. However, as you are living with a loop ileo, you're kind of in a "piggy in the middle situation. Loop ileo's are only meant to be temporary, en route to takedown.
I don't have a family, so this is easy for me to say, but I would go for takedown, and if unfortunate, get a "proper" end ileo after.
The statistics dictate that it will be a good result, which is why I ended up "rolling the dice".
Posted 8/17/2014 2:29 AM (GMT 0)
KeepMovinOn- Glad to hear you went for a hike on part of the CO Trail! I agree- hydration is always tricky. Better to pee a lot than get a kidney stone. I got one of those last November from chronic mild dehydration (which I didn't realize I was dealing with because I felt fine and thought I was drinking plenty.) Now I try to drink even more water.

I don't like sleeping on my stomach, so I don't know how it would work with an ostomy pouch. Though I don't usually have to empty at night, my pouch fills up with a lot of gas so it probably wouldn't go well.

However, massages are fine. I have treated myself to 90-minute ones on occasion and there were no problems at all with lying on my belly that long. I just empty beforehand. Same with the sledding.
Posted 8/18/2014 4:05 PM (GMT 0)
Just want to echo blueheron's experience on activities and to second that her blog was an inspiration to me. In my case, I am a year and a third past my end ileo (I still have stump rectum that doesnt bother me and if it ever gives me issues i will get it removed). I bike, hike, play some very vigorous and fairly advanced tennis, travel a lot, and strength train, all with no issues. I barely give my ostomy a thought-- it is low maintenance and requires a few minutes of TLC during a change every 4-6 days. I spend no more time in the bathroom than I did before I had UC- maybe less, because I spent around 20 minutes pooping sometimes pre-UC. (I know not all normies spend that much time but my Ucless wife still has her 20 minute special time on the throne daily so I know that it's not that uncommon lol). Anyway, this is my experience with an end ileo. My undestanding is that loops are nightmares on average compared to end ileos, and a loop in theory means that a couple feet of ileum were used up in making a jpouch, i'd think? My own thought process with the 3 step was that if the ileo was problematic I'd proceed to try a jpouch but since it has been a charm, i8'd stick with end ileo for good and i am very jappy with my decision. Best wishes to all whatever their new plumbing is-- it all beats UC hands down.
Posted 8/18/2014 8:00 PM (GMT 0)
Thank you all for the responses. Unfortunately, my surgery was done when I was very sick (had already been in the hospital 3 weeks, on lots of pain meds, severely malnourished). It was a 2 day decision to decided between Remicade and surgery. Since my husband's father had just passed two months prior to the cancer, we didn't feel that we personally could take the risk of possible cancer side effects at that time due to medication. I was only given the option of the J pouch, as I remember. Had not done enough research, since I didn't know this was going to be happening, to have looked into a permanent end ileostomy. Might have chosen to go a three-step route, if there had been more time and availability for research.But alas, that's not the way things went down and now trying to decide to stay with the loop ileo or have the takedown. Probiotic, that is correct. I have about a foot of my small intestine that I am using right now that is making up the pouch.
Posted 8/21/2014 1:22 AM (GMT 0)
I sleep on my stomach. I have ever since the wound healed. So probably abouy 2 months after surgery. I just seem to wake up, I guess I notice it and roll over, although I usually get up to pee anyway.
I work with preschoolers teaching sports so I get kicked and hit a lot. I think unless you do something crazy like hit your stoma with a brick it will probably be ok. I don't do roller coasters but I've seen several people here post that they ride them.
Posted 8/21/2014 5:01 AM (GMT 0)
KeepMovingOn-You asked if anyone has decided to keep their diverting loop ileostomy with an unused jpouch already constructed. My daughter has postponed her "takedown" surgery for nearly 3 years and has done well with the loop ileostomy. She had numerous complications after the first surgery (proctocolectomy and jpouch formation) and she was not comfortable proceeding to the j-pouch, especially with it's long recovery and possible difficulties. She has 1 more semester of college before she graduates and may consider the takedown once she graduates or may wait another year. She also does everything with the loop ileostomy: hike in the Rocky Moutains, backpack & camp in the wilderness, swim, travel overseas, run, etc. The only thing she avoids is doing any kind of ab exercises. She also has a stomaguard, but has never felt the need to use it.
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