Don't know how to deal

[Brac56]

Who's still feeling normal and enjoying life after an illistomy? If you are how long did it take to look at yourself w/o crying? Did you enjoy sex again ever? I have Crohns so my bag is heavy and needs to be empied aprox. Every 2 hours max. I'm 1 year and 8 months into one of the most difficult and depressing time of my life.

[Howlinwolf999]

Sorry to hear you are having such a hard time, Emptying the bag every couple of hours must make life very difficult. How do you cope through the night? It should get better, but it can take quite a while to get to more acceptable levels. I had Ulcerative Colitis for over 40 years and finally in April 2016 I had a panproctocolectomy with end ileostomy (removal of the entire colon, rectum and anal canal). It took a little while to settle down and does to some extent depend on what I eat. I find that my output can me quite watery (I do drink quite a lot of water during the day and have a pint of water on my bedside table when I go to bed around 11.30pm), so I usually use Trio Pearls sachets to help thicken up the output particularly when I empty the bag just before I go to sleep. There are other brands of thickening agents out there, but I am used to this one. Initially following my surgery, I was emptying my bag around 8 or more times a day, 3¼ years on I am probably down to around 5 times which is not all that bad all things considered. Turning to sex, YES, I do very much still enjoy sex, it helps to have a supportive partner who can see past the bag. Initially, I was very self-conscious with the bag flapping about during intimacy and sex and I really felt uncomfortable with that. Nowadays, I empty my bag immediately before sex (not quite the fun of spontaneous sex) and I wear my swim wrap, it’s a bit like a boob-tube, a tube that you slip into but doesn’t go up as high as a BT. If you have an appropriately fitting swim wrap it holds the bag firmly in place during sex which makes me feel much less self-conscious.

Generally, life is pretty good, the occasional mishap along the way but I am guessing that is normal if you have a bag. There are still some really dark days when I feel really down about it but they get less frequent and I get over it pretty quickly.

Please remember the bag does not define you, you are still the same person that you were before you had the surgery, you just dispose of your waste in a different to some other people.

Which country are you in and in which part? Here in the UK (East Midlands) I have annually check-ups with my stoma nurse and always have the option to see them more frequently if I need to they are pretty supportive. Depending on where you live you could have the same option. If you think it might help you, feel free to DM me.

Hoping you start to feel better about this soon.

[Brac56 in reply to Howlinwolf999]

Thank you so much, I didn't think of wearing a wrap during sex ( not that I'm having any 😁) I only sleep about 4 hours a night I sleep flat on my back and usually don't have to go during the night unless I accidently turn, it's so heavy it wakes me.

My stool is always liquid and Like you have had everything removed and anus closed.

Unfortunately I live in the Cayman islands and there doesn't seem to be any stoma nurses so I just do everything for myself .

Thanks again for your response, I've had Crohns for 40 years with so many surgeries and episodes I believe depression has set in making everything more difficult.

[Howlinwolf999 in reply to Brac56]

Wow only 4 hours a night! My output often starts very liquid I started off using a product called Morform then saw a demonstartion of Trio Pearls and started using them around February 2017, there are also other similar products available. Not being able to get local support must make it very difficult, doing it all yourself is pretty remarkble. I guess I have been very lucky because having had Ulcerative Colitis since 1975 I managed to avoid all surgery until early 2016, unfortunately at one of my regular colonoscopies they found cells were changing and they thought I would likely get an aggressive cancer within 5 years if they did take preventive action. In the UK support from my local stoma nurses have been really helpful, I developed a parastomal hernia not long after my surgery and their advice was really helpful, such a shame you don't have similar locally. There are also numerous support group but I have to admit I haven't taken advantage of them yet. When you first have the surgery you are a bit lost and not quite sure who else to turn to, I found this website quite useful; veganostomy.ca/ Eric the guy running it is a seasoned ostomate and there are numerous video's that he has created. I saw the demo for the Trio Pearls and some swim wraps on some of his video's. He is based in Canada and is a vegan but doesn't try and ram that down your throat. I have exhanged a few e-mails with him, nice guy. Fortunatley some of the product he has reviewed are available in the UK. Really sorry that depression has set in, totally understandable but you "really have to look on the bright side of life" - stealing the words from the song in the movie. Life can be good again for you despite the bag, and all it entails, is not the end of the world, look up look forward yeah get some sex it, you know about using a wrap, you can still look sexy and have some fun!

[Hidden in reply to Brac56]

Hi I’m sorry to hear your suffering. I am truly empathetic over hearing about this situation. I am witnessing the Brutal struggles with my partner.

Recently my partner had emergency surgery for evasive bladder cancer. He had 2 bags installed. It has been a very challenging time. I’m exhausted. I feel guilty for taking time to live my life as he lies in bed doing hardly nothing day after day. He calls out to me anytime.I have been doing the best I can. Feeding. Cleaning. Driving him to appointments. Taking care of everything. I few times I screwed up. I’m can’t get it right all the time and it makes me Very emotional. Recently I prefer to be out of the house if possible. I go for long walks. It is not easy during a lockdown. It’s so hard. Know he is in more pain than I can imagine but I also am having trouble wrapping my head around this new normal. Worse is the worry about conquering the cancer. It’s crazy especially in the covid crisis and It’s all just brutal. I’m trying to be positive but it’s hard. Real hard. I’m up middle of night cleaning his space with the leaking complications. Hopefully this will be fixed in a few days and then chemo therapy .

I feel guilty., angry, frustrated, on another note living without him is indescribable.

May we find strength at this difficult time. If he wakes me up at 2 am I can’t get back to sleep. It’s 5.20 now. Soon sunrise.

My day is already doomed. It’s times like these I question everything.

[tekapo13]

I can echo Howlin wolf it does indeed take some getting used too. I found if I make sure I eat something a little more stodgy e.g potatoes, thicker porridge bread, my bag content thickens and I don't eat to late in the day so I am up less at night I am down to 2 maybe 3 times a night I guess.....a support as HW suggests is fab for sex...and makes you far less conscious ...sex is not as often but still good when it occurs.

Good luck

[Ktappern]

Hi,

First thing is everybody is different. I've had my stoma for over 3 years and took me about 3 months to stop feeling any scar tissue pain following surgery. But honestly im loving it. You have to find the 'new' normal really. And also acceptance. I was very depressed with everything and i mean everything but i was so fortunate find my acceptance and since that day I've never looked back. I cried everyday for so long and now i do it knowing im in a good place with my stoma. I genuinely believe you can find that too. I could write for days on this but I'd honestly like to help you. So please see if you can pm me on here if you like and I'll give you my email address. You're never alone in this.