Adapting to Life with a Stoma - Experiences and Tips?

Hi everyone, I've joined this community to try and mentally prepare myself for surgery and life with an ostomy bag. I have been battling Crohn's for 14 years with no relief from meds, the next step is surgery that I'm ready to undergo as I have no quality of life. Having an ostomy bag would be the lesser of two evils. I'm interested in how everyone adapted to having a stoma and the experiences everyone's had, good and bad. Thanks for reading x

Hi StaceyLee.  I think we all adapted in some way to our stomas.  We're different in some respects and for some it's easier than for others.  We all make it though and many of us are alive only because we had the surgery.  You'll be just fine because you're preparing and asking.  There might be a few little bumps in the road you'll be travelling but they'll be small and we'll help you get over them very smoothly.  

Respectfully,

Mike

Hello StaceyLee.

Welcome to the MAO site. It sounds as if you are already well on the way to preparing yourself for life after the operation. It's like you say, for most of us the bag is the lesser of two evils. The experiences people have had are often very different, so it is not easy to summarise a concensus of opinion. If you want to get a flavour of how people have adjusted (or not) I would highly recommend browsing through a few of the selected past posts that interest you. These can be found in the 'collections' section under 'CONTENTS' on the left of your screen. I often browse through them to see what people have said in the past about subjects that catch my attention. There are very few subjects about ostomies that haven't been discussed before and the passage of time doesn't seem to make them any less relevant today.

However, if there is anything specific that you want answers to don't hesitate to ask and those of us who are still corrresponding on site will do our best to help you.
Best wishes

Bill 

There is one thing that you could try pre-surgery if it applies to you. Have they marked your spot yet? If they have and it is a hairy area, you might consider laser hair removal. The flanges you use may pull when you change them. This is something minor, but I would not consider it post-surgery. If I knew or was told, I would have considered it pre-surgery.

As for ostomy, have patience with yourself.

Thanks for the input @xnine, fortunately I'm not hairy so I shouldn't have that problem. How long have you had your ostomy?

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Thanks Bill, I'll definitely do that. Thank you for taking the time to give me some input, much appreciated. Hope you are well x

Thanks Mike, you're very reassuring. It's very scary preparing myself for this. I think having lots of knowledge of what everyone has gone through will make it less scary. I'm worried. I have lots of worries about life with an ostomy, but I have to be strong and accepting and just get through it. Thank you for your kindness. x

Hello StacyLee. What I omitted to say was that many people who post on MAO, do so because they have problems of one sort or another. When you read through past posts it is worth bearing in mind that there are probably many more ostomates who never have any problems at all and do not feel the need to recieve the sort of support that a site like this might have to offer.

Best wishes

Bill  

I have FAP rather than Crohn's, but I can tell you that I would not swap back for the world--- so convenient. And yes, it was tough now and then and a big learning curve, but it's so life freeing and easy.

I can say that now -- I am 3 1/2 years out, but I felt so comfortable once all the healing took place. Go with a grateful heart and a positive attitude. So many of the "older comments" are very helpful - Bill suggested them and they were well worth reading.

This group is a wonderful source of support. I wish you lots of years of positive results and pain-free freedom!!

Thank you Ewesful for your kind words, I'm glad things are better for you. I do believe in my heart it will be for the best and I will definitely take on board everyone's advice. I am truly grateful for all the replies. x

Hello StaceyLee,

I have had my colostomy for 5 months and, like you, I had time to prepare for it. I didn't know anyone who had any kind of ostomy that I could talk to, so my preparation was reading as much as I could on this site and on the internet generally. I also sent for samples which included a fake stoma and some bags to get the feeling of the real thing. I think they were from Coloplast. You stick the 'stoma' on and attach a bag, and you can add some warm water to really get the feel of it.

I don't have Crohn's but had to have a lot of bowel removed which afterwards left me afraid to leave the bathroom, so I had no life really. I haven't had any major problems with my stoma, and the only thing that I didn't like was some leakage in the early days, but a change of bag to a soft convex has solved this, so no big deal. But I can go out now without worrying about embarrassing myself, so it was totally worth it.

The funny thing is, I have been so used to not going out that I am having to build up my confidence again! But that is nothing to do with my stoma, it's a bit of anxiety.

I'm sure you will be fine, and if you have a problem we are always here for you.

Beshlie.x

Oh, wow Beshlie, that's great advice. I'll have a look online now to see if I can get a fake stoma and bag to try. I would never have thought of that. Thank you. I have really bad anxiety because of the Crohn's. I have been through some humiliating situations, and it just wears you down after years and years of it. I feel more comfortable being at home. The thought of meeting up with friends makes me feel physically sick. I dread leaving my home, so life with an ostomy bag, I believe, will help me be 'normal' again and be a great relief. I'm so glad things are getting better for you. Take care and thank you again. x

Hi Stacey Lee

I had my surgery for a permanent ileostomy back in March, and to be honest, I was really scared before I had the surgery. I think it was because of the journey into the unknown and also being seen as different. BUT after the surgery, I am glad I went through it. No more pain and no more urgent trips to the toilet! Wahoo. LOL (no butt burn LOL). My advice to you would be to have a good chat with your local stoma nurse. They have heard everything and always have a solution (well, in my case), and now I have a setup that never leaks, etc., and that feels pretty comfy. But most of all, hang in there. It will get better, and you will adapt pretty quickly.

Sorry if this advice is a load of rubbish, but I'm new to this shit, and I am not known for my blogging/forum writing skills. LOL.

Didn't mean shit!!!! Hahaha meant site! Hahaha sorry admin. (Example of blog skills)!! Hahaha

Hi Stacey Lee,

Welcome to MAO. I think one of the things that helped me once I was on my feet was keeping a food diary. It helped me know just what my body would easily dispose of and what was difficult. I still find myself feeling best when I have four small meals a day rather than the traditional 3. Secondly, now might be a good time to learn about all the different products that are available to us and how they are used. There are many threads about what works for some and what works for the rest of us. Most importantly, do be patient with your body, healing takes more time than we want but you'll get there.

Best of luck and keep reading and posting any and all questions you may have.

Hi StaceyLee ... I have had my ileostomy for a year now (well, it will be a year this Thursday, 11/10) ... and the main thing I have told people is this ... I did not realize how bad I felt until I felt good again. I had suffered from ulcerative colitis for years and years ... finally because of the strictures in my lower colon not being able to be traversed by the CR surgeon, I had a total proctocolectomy ... and I have my life back. I am much older than you but I can tell you that once you get accustomed to having the ostomy bag you will be active and pain free once again!

You are fortunate, as was I, that you are able to prepare for your surgery and it is not being done on an emergent basis. I highly recommend checking out the Front Butt YouTuber on YouTube plus her Facebook page. She is younger and demonstrates all the ostomy products, etc. She is a good source. Also, check out www.inspire.com and join the ostomy community -- there are lots of folks there (many from the UK) who you can bounce ideas off of, vent to, ask advice of, etc.

Hope this helps somewhat. I, personally, have had no real issues with getting an appliance and other items that work best for me. I apologize if this has been covered, but are you going to have a colostomy or ileostomy? And yes, make sure your stoma is marked in a good location for you ... discuss that with the WOCN (wound, ostomy, continence nurse) that will probably mark it for you.

Again, hope this helps.

Paula

Hi, not to be disagreeable but I would not know what's a good site or a poor site even though I've had a bag. Matter of fact when the WOCN came to talk to me they said, "She doesn't understand a word we've said!" And they were totally right but that doesn't mean I wasn't listening!

Mine was emergency surgery but one doctor woke me up and made sure I was focusing on him and asked me if I minded having a bag. I said, "Will I be alive?" When he said yes I said no I don't mind. To me that made all the difference in the world. To make a conscious decision and take responsibility for it as well.

There are topics about positive surgeries and reversals which will give you great insight. I think you'll be fine because you're exploring already.

Hi CharK63 -- I would say a good site is a site that does not interfere with the waistband of your jeans or dress pants or belts, that sort of thing. My WOCN placed my stoma below my waistline and to the right and just a little below my belly button line. Again, I had 6 months to prepare for my surgery, and those that have it on an emergent basis do not have some of the luxuries that we have had. I have no chance of a reversal and that is just fine with me ... as I said in my earlier post, I have a fantastic quality of life now and my only regret is that I did not have the surgery about 3 years before I did!

Paula

Yes, you're absolutely right about that placement factor. Happy to hear how well you're doing. Hope to be that way soon, but I fear they may be right that my life might be touch and go.

If so, I'll just take it as it comes and learn to live with it. I always say "Attitude is everything."

CharK ... You are so right, attitude is everything. Did I read correctly that you have had a reversal? As I said, I will never have one (don't have the plumbing at all for any of that any longer LOL) ... but if I can ever be of help to you, please reach out. If I do not have an answer or suggestion, there are many on Inspire or in my local support group that probably would.

Paula

Hi there, I had an emergency colostomy 4 months ago, after years of having colitis. I found a colostomy so easy to manage. I am from Australia and all colostomy products are free. Prior to surgery, get as fit as you can. This will help your recovery.

All the best, Anita

Tell your surgeon to make your stoma 1-1/4" long.

I've been an ostomate since 2004 due to rectal cancer. The first 3 months were the worst as the products I was using didn't stay stuck and the leaks left me terrified to go out. I finally found 3 different wafers that worked dependably and I use them; alternating so as to not develop an allergic reaction. Call the companies and ask for samples so you can see what will work for you. Also go to https://www.uoaa.org/forum/viewforum.php?f=2 for a site with ostomates to get lots of tips and troubleshooting ideas. And lastly, it's a good thing you are doing for yourself. I'm in a small town and a young woman of 34 just died this week from Crohn's. I don't know, but strongly suspect she refused to have the surgery. Very bad disease! Hope it gives you back your life!

Hi Stacey

It was very hard at first to accept mentally and physically as I could not look at myself. But then it was great to be out of constant pain which kept me in bed a lot and prevented me from going to work which I loved. So the pros started to outweigh the cons. My life is so much better now and I am starting to get my confidence back again which is a big bonus. So go for it Stacey.

Hi Stacey

It was very hard at first to accept mentally and physically as I could not look at myself. But then it was great to be out of constant pain which kept me in bed a lot and prevented me from going to work which I loved. So the pros started to outweigh the cons. My life is so much better now and I am starting to get my confidence back again which is a big bonus. So go for it Stacey.

Hi Paula, yes I had a reversal May 17th this year after only 8 months with an ostomy. I'm having surgery next week for hernias. My stoma site leaked up until September so I had a CT scan that found hernias. I don't think that's related to the oozing surgery site but I'm glad I found it because one has gotten big and is very painful.

I'm pretty discouraged right now because I thought I was getting it fixed right away but didn't get on surgery schedule til we put up a fuss. It's also discouraging to read on this site that I can look forward to future surgeries for hernias. That's why I said my life might be touch and go. Sorry for being a drama queen. That was obviously a pathetic attempt to get some attention!

I had one week of feeling great! Better than ever! And I'm holding on to the memory. I am so lazy and lethargic that I constantly abuse myself because my mind is still saying "you should be cleaning this or fixing that..." so I feel like such a lop. I have a 5 lb. weight limit which pretty much means I can't do anything.

I am a caretaker for my mom who's 90 and I chose to be a full-time mom for 8 years, which imho are valuable jobs but I often feel I need to justify my existence for lack of earning cash. It's a problem with society that people who take care of your people so you can work aren't given the credit they deserve, again, imho.

So I'll keep on moving on and be my regular cheery self, especially since I now have a firm date for surgery. As long as I don't have to miss another holiday!

Thanks for listening, Charlotte

Hi,

I've started a vlog on YouTube for people new to stoma life... I've had my colostomy for about 9 months and was horrified before my surgery, but I took to it really quickly and wanted to film something that would help people in the situation I was... I've got stage 4 cancer and doing the videos has given me something to focus on and helping people is helping me get through :) Good luck, I hope you start to get your head around things soon xx

Having an ostomy is like caring for a sick child sometimes. Some days are better than others. There are rashes, discharge, fear, happiness that you have a bag when diarrhea hits!!!!!

Stacey Lee!

You will get the hang of it. Get all the free sample bags you can... as a new ostomy girl, every company is hoping to get you locked into their product for the next 50 years. Work it.

I like the newer Hollister "lock and roll" bags because they have a good shape and small "ends."

I can't wear tight jeans anymore because of my colostomy bag. So I do leggings and long swing tops and cute boots and scarves.

I told all of my friends about my colostomy. I told them that it smells horrible if I empty it. So if I visit them, I get my own bathroom away from everything or I get a bathroom that has a great opening window and can be shut off for a while. At home, I have my own bathroom with a superpower fan, and guests (our guests are only close friends) know that if my bathroom door is closed, they need to use our main bathroom.

I agree 100% with Mrs. A.

You're changing your body, pay close attention to what you eat and how it affects you, and adjust accordingly.

Cheers!

Thanks Jooly for sharing your experience. I agree, it will be great to get back to the things I love. Defo worth it x