Seeking New Friends Who Understand Post-Op Life

One of the most helpful things that I have found over the past few months that seems to have almost cut mine out completely. I don't drink carbonated beverages, and most importantly, I don't drink with a straw.

Welcome, honey. You will find everything you ever wanted to know about any ostomy or life-related crisis, or just generally having fun with your bag (like I do).

Okay, Honey. I'd like to understand why you have stopped doing the things you love. Is it your emotions getting in the way, or is your body keeping you from doing what you want? With my first colostomy (stoma died within a week, and the hole closed up requiring a second colostomy 5 1/2 months later), I didn't want to be around people, didn't want to go anywhere (emotions) but physically, chemotherapy wiped me out and I could hardly go anywhere once I had healed. Now, all those emotions were a result of being made to think I had to put up with that horrible situation. Luckily, I changed doctors, had a second colostomy, and everything is wonderful. The bag stays on for 4 - 5 days instead of replacing 3 - 4 times a day. I sometimes forget it's there. I do everything I used to do including swimming every day in the heated community pool. I just don't do as much in a day and everything gets done at a slower pace. But that's not because of the ostomy. Getting older, and the chemotherapy cramps my style slightly. The other things which really helped me was a great ENT nurse and reading about ostomates on the Cymed site who liked that product because they could even do triathlons. Well, I've never done one, but it made me realize I could walk the dog daily, go swimming, and get a reclining bike to ride. So make sure your ileostomy is right and then get back into as many activities as you can that will put a bounce back in your step!! From Count Your Blessings

Hi Counting my Blessings, in answer to your question, probably a bit of both. I still have a large open wound that is taking forever to heal, my fitness levels are rock bottom, I'm fed up with having to rely on friends for the simplest of things, I'm sick of worrying about bag leaks and, in fact, wound leaks! I'm fed up that all of the things I enjoyed doing seem like a lifetime away. Maybe I expect too much too soon, but I got upset today because I've had to ask for help just getting my daughter to school, just because the new car that was supposed to give me my independence back still isn't ready for collection! I just want my life back, and I hate feeling so pitiful, especially when I read what other people have had to go through, yet still I can't help feeling sorry for myself.

Hi Hun - just wanted to say that I am new to the website too and after the operation, it does feel like somebody has taken the L plates off - Learning to Live Life Again! - you have our support.

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Honey, before my op I had my last severe UC flare-up. I was so weak I couldn't walk and couldn't eat. I went from 14st to 9st in 4 weeks and would have died within a couple of weeks without my op. After my op (ileostomy/pan-procto colectomy) I felt like I had been run over by a bus for about 6 weeks, was having a few bag leakage issues due to my inexperience, plus all the usual self-confidence and image issues. Before my illness, I played guitar in a rock band, wore my jeans off my arse, and image was everything to me. Finally, after the first six weeks or so, I felt myself getting better and things really picked up quickly. I piled the weight back on to the extent that I had to be careful, I learned how to change my bags without worrying about leaks. TOP TIP: warm the plate with a hairdryer and it will mold to your shape and give a really snug fit. Started going out in public and finally realized that nobody needed to know I was an ostomist and that I could start to live a normal life again. It's not all roses, but for me, it's a million times better than the alternative and with a little time, you will realize this and I guarantee you will get your confidence back, just don't expect this to happen overnight!

Hi dickdastardly...I'm intrigued...do you still play in a rock band? Do you still wear your jeans off your arse, or have you found another way to wear them that is just as image-conscious?...because I have a real issue with knickers...that is, the ones I used to wear versus the granny knickers I have to wear now! My self-confidence and image are also important, and I find it hard to believe they will ever be the same again. Did you regain yours? It's been over 3 months since my operation; I had hoped that things would have improved by now. I know I still have problems with open wounds, and maybe that's the issue, but I'm scared that when they have healed, I may still have a confidence issue.

Hi Honey, I gave up gigging at 28 because a crowded pub is the last place you want to be when you need to make a dash for the toilet! I don't gig anymore, but that has nothing to do with my ileostomy, just other commitments. Fortunately, fashion these days says it's cool to wear your t-shirt out, which is handy when you have to wear your jeans a little high (Simon Cowell style, lol). These days though, I am happy in whatever is comfy and don't worry too much about my image, although I'm still one cool dude! LOL. Don't know why you have to wear granny knickers though? I had a choice of boxers over or briefs under and stuck with the briefs I wore before. Yes, I did regain my confidence completely, although it took a year or so. In fact, I have more self-confidence because I had been ill with UC for 8 years and I knew most of the time I looked rough, something that I don't need to worry about since my op. When you are fully healed it might be time to re-invent your image but comfort should not have to compromise your style. I think that it's easier for girls because they can wear a skirt high or a summer dress which is comfy and hides the bag better, in fact, I'm thinking of becoming a TV!!!! TC, Dastardly....

Honey, if I read your post right, I'm hearing what the others are not. That is that after an initial few bouts with UC, you were fine. That was me too! Well, the first few years were rough, but then it all went away (total 17 yrs). If cancer hadn't shown up, I would have lived with UC just fine. But at that point, a total colectomy was just the smartest thing to do to get rid of all disease. Please, people... we don't all suffer for years.
Kevin

Hi Pilgrim... you did read my post right, and like you, when I was first diagnosed, I had a few nasty flare-ups, but then I was symptom-free for almost 15 years. It all turned sour in February, a flare-up that just went wild, no cancer, but no getting on top of it. I was told my bowel would rupture if I didn't have it out. So, it's been really hard going from years of normality... for want of a better word... to this. Sometimes I wake in the night and for a minute I believe it was just a nightmare, but it doesn't take long before reality kicks in again though.

Hey honeyblunt!!! Everyone on this site is beyond friendly. I love this site, but I also wanted people local to where I live to be able to connect, so I did an internet search and found my local UOAA chapter and joined that group. It's a wonderful, fun-loving group of people that understand what you've gone through. The funny thing about my group is I'm 28, and everyone there is 50 or more years of age. I do have a good ostomate friend who is just a couple of years older than myself, so she and I are the babies of the group. We love the group and don't care about everyone's age because ostomies don't have ages; they have stories. You should look into a local UOAA group.

There is also a young ostomate association here in Australia. I was asked to join years ago, but I declined. I think I did fine. They are still going, and I think it's a great thing if people do join in. I had no idea when I was young what all these groups were for. I thought it was like Al-Anon, hahaha. Duh, hahaha. Good for you, Quiet Dreamer. Mooza xxxxx...

Honeyb, you wear granny knickers, really???? Hahaha, I just don't bother, hahaha. Shhh, don't tell! Mooza Plus got an ileo and not wearing nothing over the pouch, hell nooooooo. Chat ya's later xxxx

If ever you are feeling down, just click onto this site. I have had lots of comfort reading all the blogs on here. I went in for a small operation that ended up with me having to have nine trips to the theater, and now I live with a permanent colostomy due to my bowel being damaged. Just give yourself time to heal; it's not long since you had your surgery. Take each day as it comes and don't expect too much of yourself. Time is a great healer, and with all the support from this site, you know that you are not on your own. Welcome x

Looking for the same hope; your still here.

Hi Honeybblunt. I know what you are going through. I had surgery last August. I was hospitalized because of a flare-up on my abdomen; they operated, and I had a large drainage hole where my belly button is. It took 4 months to heal with an air vac to help with the drainage, and home care nurses coming every three days. I ended up with an ileostomy. I had to go back this January to have another operation. This time, they cut away the infection in the large intestine. Now the ileostomy is permanent, and I am having chemo treatments for 2 hours every 2 weeks. It has been a rough road, especially at my age of 70. No, I am not old; I have had a very active life, and by joining an ostomy group here in Ottawa, I am able to overcome the hurdles and become whole again. Yes, I have named my ostomy "Penelope" after the girlfriend of Pepé Le Pew. It makes people laugh when they hear noises coming from my ostomy, and I say that this is Penelope giving her 2 cents in. Chin up, you will be able to do many things once all is healed. We are all here to help.

Good morning from Illinois, U.S.A. This is my first post. Honeyb, I get it. I have a urostomy and it was hard adjusting in the beginning. I felt no one understood the ups and downs of the daily process. I also am having a hard time finding an ostomy nurse. People here seem fabulous and encouraging! Someone usually can answer any questions.
I am on here more and more and feeling so much better.
Have a great day.
Beth