Mentally accepting my ileostomy

Things will get better as your body adjusts, especially those pains after meals. Eat smaller meals if you find the large ones cause you more trouble.

I accepted my stoma before having the surgery. I figure you either accept it, or you don't, but it won't change the fact that you still have an ostomy and it's a heck of a lot more fun to live life after you've accepted it

I also find that blogging and sharing my story helps even more. Is that something you'd consider doing?

Wishing you all the best!

Thanks for your replies!

Maybe it is a case of me not having time to accept it beforehand. I was only diagnosed with UC 18 months before surgery & it didn't get bad until 12 months before surgery. I never got it under control in that time, but obviously had to go through all of the drugs & give them time to potentially work.

Obviously surgery was somewhere in my mind, especially towards the end. I asked my GI to refer me to a surgeon at the start of Nov. He said he would instead refer me to a different GI in a university hospital 90km from my home, where they had a huge IBD centre. His thinking was that this new GI had patients on Entyvio if I wanted to try that route, or if not, I was in this team with surgeons etc. I got so sick as Nov went on, and was in a bad way when I eventually saw this new GI at the start of Dec. He said that surgery was the only logical thing to do in my current state, and that I was to come back in 5 days to have a sigmoidoscopy & speak to the surgeon.
I don't know how I got through those 5 days, but when i came back to the hospital, I was admitted instantly & told my colon needed to come out ASAP. So in the end it happened very quickly. Even though it was in my mind as I said, I don't think I accepted it, as I didn't want to without knowing 100% that it was happening, if that makes sense...

The reason I'm not going for a J-Pouch is because my surgeon didn't want to do pelvic surgery on me, as when I was 19 I had to get an ovary and tube removed. He said that with any pelvic surgery there's a risk of infertility, and with me having only one ovary, my chance of conceiving would be harder as it is, so he didn't want to add to that.
He did say if I were to come back and say I wanted a J-Pouch he would do it, it is completely my decision, but that was his & my GI's recommendation.

To be honest, even before talking with him, I didn't think I would opt for a J-Pouch. When he explained the risks with it in my situation it sort of just confirmed it for me in my head.

My whole rectum is left at the moment. He wanted to stay away from my pelvis & see if I'm ok with just having my rectum. I know there's a risk of UC coming back in it but I'll deal with that if it happens & think about removing it then. I know it's only 10 weeks but there's been no issues so far.

Christine - I think is agree with the smaller meals. My stoma can be very noisy too!

I think it's just such a huge learning curve, I'm finding it very overwhelming sometimes.

I had UC and a lot of polyps......no drug worked ....remicade infusions stopped working....and so I was eventually booked in for a temp ileo with the hopes of a J pouch, but unfortunately I woke from surgery with a permanent ileo. I am unable to have a j pouch due to to make up of my insides. One month in hospital due to complications, 3 procedures, pnumonia, renal failure and sepsis ........then it was home for another long recovery...it's been almost 3 years and I would have days earlier on when I would feel very very sad and it was just too much, I'd have a cry and my wonderful partner would hug me and I'd feel alright until the next time...it gets easier ...and as long as you know it's ok to have bad days......cause it really is....it's a difficult thing to come to terms with, it's hard work sometimes when it misbehaves and it's not like everyone knows what's going on...its not exactly something you bring up in everyday conversation......it's a tricky subject.....I think I managed mainly by reminding myself that it saved my life....i surely wouldn't be here now if I hadn't had the operation......and after all the complications .....I feel I get a second chance .....strangely ......life has never been better ....I never thought I would hear myself say that......you will survive this ...I promise ..it does get easier

Hi SuperBlanks, you've gotten some great advice here. Yeah, down the road there might be options like a j-pouch or whatever but we need to focus on now. We ostomates have been traumatized. Not one of us can say we're thrilled to have a bag glued to our bellies. We can, however, express satisfaction and maybe glee that we're alive and the stuff that made this bag necessary is gone. So are we expected to just pick up from where we were before and feel like nothing changed? I doubt it. It's not easy to wrap our brains around our new selves but we need to do what we need to do to get better. Anxiety, depression, PTSD and the like are often part of the prognosis. I visited a psychiatrist a few times. He gave me some garbage medication and and his treatment pissed me off more than my bag. So I quit him and quit the meds. I started drinking a little caffeine and reading the posts of some of these wise, caring folks here and, I think, I'm alright now. Okay, so I still use Xanax once or twice a day.
You'll be OK because you can be and because you want to be. Even when we put all the stuff in perspective and realize how bad it could've been, it's tough to jump with joy. It is what it is. We need to find things that make us happy and avoid things that sadden us. I remember raking leaves one afternoon and hit my stoma with the handle of the rake and wondered “What the heck is that?” I actually forgot about that stupid thing for a little while. Then I very quietly thanked God for the surgeries, the technology and expertise that allowed me to rake leaves.
You'll be OK. Be patient with yourself, don't stop asking for help and treat yourself kindly.
Respectfully,
Michael A

Hi superblanks,

Can't add knowledgeable support but sympathetic camaraderie.

Awake after midnight here in the usa. Less than 10 days post colectomy. For several reasons I opted for permanent ileostomy instead of jpouch. One of which was uncertainty of diagnosis which I am told although pathology report says uc it could still be cd.
anyways, I am on the early part of my journey and a bit horrified at the permanence of the bag and it's significance and saddened that these are the best solutions science came up with. I still have no answer. After almost 14 years of fighting uc it would have killed me. I realize that. But it still doesn't make things better. I tell myself that once I'll be able to do more daily things that I wasn't able to my outlook might improve. I get strength from reading posts, emailing some amazing ostomates.
I think time will provide comfort and hope I will find comfort and the (somewhat) normalcy I crave after my uc war And the many battles it brought to our door.

10 weeks is a good time for physical healing but not emotionl healing and we both need to undertake this patH.

Superblanks,

hope the same for you too.
i understand what you say about being reminded of the ostomy and sugery/illness way too much. I connect it to when there is something bad going on in life and you wake up in the morning, you have a few moments before you are reminded of that, and those are good moments.

as a matter of fact i am a mental health professional and this path is interesting to me also because of that. it is amazing how we have to rebuild ourselves physically and emotionally and i am so humbled by the significant contribution of the people on the internet forums that provide advice and an empathetic ear (or eye). As i said above, i know i have a long way to go. I try to remind myself every time i am down of my almost 14 years war with UC.

hope we are all feeling better physically and emotionally,
take care, K

Hi all
I am new to this forum, I can totally empathise with the way you are feeling.

Firstly I had no preparation for my ileostomy, my GI consultant ignored me with regard to pain and said that I was not a candidate for surgery and kept trying different medications. After 18 months of pain and bleeding I became so unwell that I was rushed into hospital.
They eventually gave me a colonoscopy and when I returned to my bed had two surgeons waiting for me to say I was being transferred for emergency surgery to remove the large bowel. The GI consultant still refused to admit a mistake and said that she still didnt think I was that ill ????

I had the surgery beginning of December, practically changing bags and emptying is not a problem but like you I am finding it very difficult accepting this. I think I am so angry with the consultant and her refusal to look into the pain and discomfort. I am a counsellor myself and thought I would be ok, im an emotional mess though, every time i think about the last two years and the fight I have had to be heard I sob.

It has not ended there and this probably doesnt help but my wound would not heal and have been on many courses of antibiotics, last week ended up in hospital feeling pretty rough, surgeon admtted me and said that I needed to be opened up, washed out and drained. When I came round from surgery the dr said that he had formed another stoma as the rectal stump was diseased and infected (mucous fistula) as there was not enough stump left to bring out too far it is very low down on the pelvis and very flat, pretty disgusting to look at and I have a strong stomach, so wearing two bags. 12 weeks after initial surgery and this happens, been home a week and have severe pain behind original stoma, the surgeon is arranging for me to have an MRI scan to see if there is any CD in small bowel before he removes the rectum in about six weeks. I am scared that the pain I am feeling behind the stoma is exactly that....fed up of being angry, miserable and sore. Want to get back to work or rather need to I live alone and have mortgage to pay. I dont even look like me anymore as surgery shock and meds have made my hair fall out. Never thought I would feel so negative. waiting for GP to call right now because I feeling so unwell. just doesnt seem to be an end to it even the stoma nurse said I was unlucky.

I have been told that after the rectum is removed I will feel much better so holding onto that, also reading and being in contact with people on forums like this has helped, sorry to go on but can empathise with your post.

hoping to feel chirpier soon

thanks all