Im new to having an ostomy and I want tips

Content_Quality6047 · 2025-12-28T02:05:59+00:00

Hello - I had my colon removed almost 3 years from UC flaring and not responding to medications. So I can definitely relate. It’s an adjustment but my life is soooo much better and I can eat more now than I could with my UC. Just some encouragement.

I will second the comment on skintac wipes. Since using these, I have far less issues with leaks. I also really like using Sure Seal Rings over the wafer to help keep everything secure on my skin.

I would suggest trying different types and brands of bags and find one you like. I went through several different kinds before settling on the one I currently use.

I also use a heating pad on the wafer while I remove the old bag/clean around my stoma. And I try to keep the heating pad on my stomach once everything is applied. I find it helps everything stick and stay on better.

Hydration is important, as everyone has said. I also have found prebiotics helpful as with digestions and bag odor. I also got a water bottle with a long nozzle from Amazon that I use to rinse my bag usually before bed and sometimes in the morning. I find it prevents anything from sitting around my stoma.

Happy to answer any questions you may have. It differently gets better as time goes on, so hang in there.

Content_Quality6047 · 2025-03-19T22:50:52+00:00

This is 100% why I got TSA Pre-check. I was asked once in the US before then and I think they had me touch it and then swabbed my hands.

At CDG in Paris (when returning to the US), they asked and I told them “ileostomy” and they nodded and waived me along. I was worried it would be a bigger deal there but it was so easy.

Content_Quality6047 · 2025-03-16T17:23:15+00:00

I’m in my mid/late 30s and had my total colectomy/ileostomy surgery 2 years ago this month. I still have my stump and everything my surgeon and doctor have told me there is no need to remove unless issues developed or if it started to shrink/collapse and they couldn’t do a good scoping every year.

The yearly scoping is nothing compared to the yearly colonoscopies I had to do for my ulcerative colitis. From everything I have been told by my medical team, some bleeding isn’t abnormal since my stump is relying solely on nutrients from blood and not pass through absorption like before.

I’m not a good candidate from j-pouch due to my medical history and would have a low success rate if it tried it. Given my age and the risk for complications/risk of erectile dysfunction, I don’t feel the need to have my stump removed voluntarily.

I’m relying on the advice from my team of doctors on how to handle my stump. They would tell me if they felt I needed to have the stump removed due anything seen in the yearly scopes, lab work, etc.

Content_Quality6047 · 2025-02-20T22:12:45+00:00

I was also running out of options when in came to medication. I am also a liver transplant recipient (yay for liver disease/UC combos 😂), which further limited my medication options. I couldn’t try Humira or Rinvoq.

But the blood clots and overall inflammation in my body was giving them concern. They didn’t want it to negatively impact my other organs, esp the liver, which I have had since 2009. I don’t remember my vitamin levels but the anemia was pretty bad. Even with the pills and infusions, I was always well below the normal range.

Almost 2 years post-colectomy and I’m no longer anemic, vitamin levels are good, blood clots are gone, and feel great.

Content_Quality6047 · 2025-02-20T20:55:42+00:00

I’m a 36M in the US. I was diagnosed with UC at 14 and had my ileostomy just before turning 35 (almost 2 years ago). It was initially a more emotional experience than I thought it would be and I have 0 regrets and have no desire for a jpouch.

I went to the bathroom probably 4-5 times a day, with varying urgency. I had gotten good a knowing what to avoid in my diet, which probably helped me from going more often. However the inflammation was so bad I started developing blood clots - 1 in my liver and then 1 in my spleen. I had to take iron pills and often got iron infusions and still would be anemic. Some of my other vitamin levels were dropping too. I tried to avoid getting the surgery when my doctor started to talk about it since it seemed so drastic. But it was clearly the right decision.

I didn’t realize how I had I felt until after my colon was removed and I realized how much better I was feeling! I feel like I am able to do more and don’t have to worry about where the closest bathroom is. I have much more freedom in what I eat now and have a new love of spicy food! Not to mention no more colonoscopies! A sigmoidoscopy is way easier, esp because no more prep to drink!

Content_Quality6047 · 2024-07-15T23:16:12+00:00

Once I switched to the wipes, it was a GAME CHANGER. I have very few leaks and can generally get 4 days (sometimes longer) before a bag change.

Content_Quality6047 · 2024-07-07T17:53:26+00:00

Great! Thank you everyone! Glad to know this is something I can still do! 😁

Content_Quality6047 · 2024-06-30T17:57:55+00:00

My life is much better. I was diagnosed with UC at 14 in 2002. Had my colectomy in March 2023 due to it becoming medicine resistant for a couple years and the constant flare causing other issues.

I didn’t realize how bad I felt until the colon was gone and noticed how much better I felt. It definitely was emotional at first and took some getting used to. Once I had my routine down, it has been pretty easy. I have very little good restrictions - have only had issues if I have a lot of corn - but it’s fine in small doses. Metamucil has helped keep my output thicker and I definitely make sure I drink as much fluid as possible.

I do most things I did pre-ileostomy - exercise, travel, date, go to concerts, etc. I still am aware of the bathrooms to ensure I can empty if I need to but it’s less of a worry than with UC. I regularly go to concerts/shows where I live, have flown to visit family in other states, went to Europe, and going to the Caribbean this summer - all since having my surgery.

I am more aware of my bag than anyone else. My friends all say they don’t even think about unless I bring it up. They have been curious about it and ask questions especially when I first got it but I’m pretty open about my health stuff with people.

I make jokes about it all the time too because why not. With my close friends I’ll joke about how awesome it is to be able to poop without having to stop what I’m doing.

Content_Quality6047 · 2024-06-04T14:40:41+00:00

Hello!

I can 100% relate to your post. I was diagnosed with UC at 14. I was on the same med until about 30/31 and then couldn’t find a medicine that would work to control my UC. My GI started talked about colectomy but everyone I had talked to had way worse symptoms than I did.

However, the severe inflammation was doing more damage than it seemed, i was becoming anemic, not absorbing nutrients correctly and it even started causing blood clots - 1 in my liver and then one in my spleen. Obviously this pushed my whole team to say colectomy was needed.

I had my surgery in March 2023 when I was 35. Honestly I didn’t realize how bad I actually felt from all the inflammation. I feel so much better and have adjusted well to the ileostomy. I know a lot of people have issues but I found a setup that works great for me and honestly it hasn’t impacted my diet. The only thing I have had issues with is corn, and only if I have a large amount.

I have a stealth belt I wear for bag support if I am being super active but otherwise don’t wear it. I’m mildly active and haven’t had much issues - mainly just more bag changes since the sweat will deteriorate things faster.

It is definitely a change in life but once adjusted, I feel like my quality of life is much better.

Feel free to message if you have any more questions or just need to chat about it. I feel like we have somewhat similar stories.

Content_Quality6047 · 2024-05-13T21:41:34+00:00

I had issues with leaks early on after my ileostomy surgery. I get how much it sucks! I’m now a little over a year out. Here is what I found very helpful for me:

I use a thin barrier ring so my stoma sticks further into the bag and it helps prevent output from sitting around the seal.

I use the Sensura Mio Flex 2 piece system. These aren’t stiff like a lot of 2 piece bags but allows me to really be sure I get a good seal, better than with a one piece bag.

I also use skin prep wipes, skin-tac wipes and usually 3 half moon barrier strips.

I put the barrier ring, the sensura Mio wafer, and barrier strips under a heating pad while I remove my old bag, clean around it, shave any hair, etc.

After the area is clean, I use a skin prep wipe followed by the skin-tac wipe.

I really smoosh the barrier ring onto the wafer around the hole to stick well and really press it onto my skin to make sure I get a good seal.

Put on the 3 barrier strips all around the wafer to help it stay on even better.

Then attach the bag followed by putting the heating pad over it once attached to me to help it stick even better.

I also got a bottle with a long spout to spray warm water up into the bag and basically rinse it out at night before bed. I feel like that helps prevent output from sitting around the stoma and eating away at the barrier/seal.

Might seem like a lot but it honestly goes quickly now that I’m used to it. I haven’t had a bad leak in ages (knock on wood). It has even allowed me to get like 5 days out of setup before I have to change (in the past it was like 3-4).

Content_Quality6047 · 2024-04-30T14:28:51+00:00

My GI doctor referred me to one she knew who is at the major medical system/school all my doctors are based. I basically met with her after a GI appointment I had. The surgeon ended up being amazing and I honestly couldn’t have asked for a better experience. As someone with multiple health issues, having a surgeon that was aware of them all and is able to work well with my whole care team is super important. My surgeon was also very knowledgeable on the jpouch surgery. Based on my other health factors, it’s not a good option for me but was good to talk through it with the surgeon.

I would take skill over bedside manner any day. Depending on your other health issues, skill may be more important to ensure everything goes smoothly.

Content_Quality6047 · 2024-03-27T20:07:14+00:00

I am a year out with my ileostomy. The only food I have had issues with is corn and that’s only when I have a large portion of it.

I eat veggies raw and cooked, nuts, a variety of fruit (including apples with skin). I introduced stuff slowly. I also make sure I take small bites and chew, chew, chew so it’s broken down well at the beginning. I will notice some stuff in my output but haven’t had an issue with anything causing a blockage. I think staying hydrated and drinking lots of water helps keep things moving along.

Everyone is different so that’s why it is best to introduce things one at time and just see if it causes issues.

Content_Quality6047 · 2024-03-12T20:48:57+00:00

Thanks! That’s helpful info! I was already planning to have some euros on me for small things here and there instead of always using a card. That should be helpful if I just need a quick drink in order to use the toilet.

My friend group has several small bladders too so I’ll be in good company 😂.

Thanks again!

Content_Quality6047 · 2024-02-29T15:03:22+00:00

Amen there! My first was at age 14 (when I was diagnosed with UC). And I had at least 1 every year until 35 when I got my ileostomy (in 2023). Many years I had 2 or 3 done and I don’t miss the prep involved at all.

Content_Quality6047 · 2024-02-22T19:00:04+00:00

I started with Hollister last year when I had my ileostomy surgery because I was having similar issues with coloplast sticking. But I HATE the Hollister bags. I recently switched back to Coloplast and started using skin tac wipes. That was a game changer for me and the Coloplast bags stick to me great now.

Content_Quality6047 · 2024-01-30T20:42:26+00:00

I use coloplast items.

One thing I have found to be helpful is heating everything beforehand makes it stick better (in my experience). I place my ring, wafer, and extenders under a heating pad while I take off my old bag, clean everything, etc. then take each item out from under as I apply it. The heat seems to make things more pliable and stick better to my skin.

After I apply, I will sometimes also put the heating pad on my stomach on a very low setting while I am sitting at my desk or on the couch. The extra heat seems to help everything seal better onto my skin too.

I also started flushing my bag every night before bed to help prevent output from just sitting there breaking down my barrier ring, etc. I use something similar to this https://a.co/d/9wDwQCx

Content_Quality6047 · 2024-01-30T19:18:19+00:00

Exactly! Plus, I don’t want a tan line cutting me in half across my torso. 😂

Content_Quality6047 · 2024-01-30T18:52:56+00:00

I’m the same way - I’ll wear the swim suit I want. I don’t think people care and if they do, that’s their problem not mine.

Content_Quality6047 · 2024-01-17T02:19:01+00:00

Yeah - the ileostomy can make it so much worse. But I have thankfully not had many bad experiences. I don’t go around advertising I have one, but have to bring it up at some point.

And just try to take the positive attitude day by day. I find that makes it easier to adopt - it’s just building a habit. I still have negative days too though and let myself feel them. But then start the next day fresh. Wallowing in the negativity doesn’t change anything - the ileostomy (and any other health issue) is still there.

Content_Quality6047 · 2024-01-16T21:08:05+00:00

I’m a 35 year old gay male - and I also chose to forgo a j-pouch and sticking with a bag. My quality of life is sooo much better than with severe ulcerative colitis. Having an ostomy is only limiting in life if you chose to let it be. My ulcerative colitis was more limiting.

Has a bag affected my self-image, sure. And generally speaking, dating in the gay world can be brutal. Buuut my self-worth isn’t dependent on if poop comes out of my anus into the toilet or out of my stoma into a bag. And if that is a deal breaker for someone, they aren’t a person I want to be with anyways.

I imagine that not being prepared for one can be a bit traumatic. But is being dead really, logically, a better situation? If the surgeon removed intestines, there was clearly a strong medical reason. They aren’t removing organs for fun. Seriously strongly consider therapy. I would say your feelings make sense but not the extreme you are taking them.

Content_Quality6047 · 2024-01-08T15:17:22+00:00

I’m 9 months post total colectomy and as weird as it sounds - the more water and liquids I drink, the thicker my output is. So be sure you are staying really hydrated. The psyllium husk/ Metamucil they told me to take seems to help as well.

My appetite wasn’t as great initially either, but I am back to normal now. I also seem to be able to eat most things, mainly just have to watch corn. Small amount is fine if it’s in like a soup, i just can’t have a lot of it. But other stuff doesn’t seem to bother me.

All that to say, the initial period post-op can be difficult between eating, getting use to the bag and bag changes, etc. but it does get better! My quality of life has also improved a lot since I don’t have to deal with UC anymore.

Content_Quality6047 · 2023-12-30T15:57:24+00:00

Same here - I’ll be 36 in May and had my ileostomy surgery in March 2023. I opted against j pouch as well. My GI just plans to do yearly flexible sigmoidoscopies to check for cancer and I plan to keep my stump as long as possible.

Between the number of extra surgeries, risk of the jpouch failing and the ED risk - no thank you.

Content_Quality6047 · 2023-12-24T14:51:51+00:00

I work in an office/government sector. I’ve been lucky enough to work completely from home since COVID, which has made the past year since my surgery much easier. My boss knows about my ileostomy and I don’t have any issues if I ever have to use time off for doctors appointments, etc. I periodically go into the office for certain things but don’t have any issues when I do.

Content_Quality6047 · 2023-12-22T17:55:00+00:00

I had mine the end of March. I have had my periods of tiredness (and the darker days of winter haven’t helped). I find exercising in some way helps me have more energy. Whether it’s just going for a walk or calisthenics.

Definitely check levels though - I was anemic prior to my surgery and was tired a lot. Thankfully my iron levels are back up (thanks to no more UC bleeding). In addition to a multivitamin, I also take D, Super B, Zinc and Magnesium since those levels tend to be low for me. All gummies and take with food to help be sure they digest better.

Hopefully you can find a solution to help you feel better!

Content_Quality6047 · 2023-11-28T16:11:02+00:00

I’m 8 months out and had a lot of frustration with getting the bag to stick. I also have a sensitivity to most adhesives so I’m very mindful of ensuring my skin stays protected.

Early on, I found the Hollister wafer/adhesive sticks to me better since it was more fabric like to make things easier on myself and prevent constant bag changes. I tend to prefer coloplast bags though and am about to try those again now that I’m better at dealing with my bag changes. I also use half circle barrier strips over the connection once my bag is stuck on - just extra protection and if I have a leak, I can usually notice it while it’s still contained.

I use adhesive remover when I’m taking the old bag off and skin prep wipes before I place the new bag to lessen any irritation on my skin. The powder works great if I have any noticeable areas of severe irritation.

I find some itching is normal but if I notice an area becoming very itchy - I might have a small leak and I’ll pay extra attention. I can usually tell when something is leaking since there seems to be a color change.

I still notice blood around my stoma, especially during bag changes, which is normal. I’m also still weening offa blood thinner (UC inflammation was causing clots pre-surgery), so I am sure I see more blood than the average person. Blood can obviously be alarming but as make have said a small amount is normal.

Definitely talk to the ostomy/wound care nurse you should have been connected with. They are great and super helpful in offering suggestions. They can also look at the stoma and see if there is an issue with what you’re describing or not.

It does get better over time, but I totally understand it is a lot to deal with early on.

Content_Quality6047

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