Ileostomy surgery - What to expect in hospital and adjusting to life with 'Fred'?

Hi everyone, serious newbie here.
I am due to have an ileostomy in a few months' time. I have had a stoma for about 15 years due to having an ACE button. But having an ileostomy bag is scaring me to death, although I know it's going to make my life easier and hopefully I will be able to start going out and about again and not be tied to a loo for hours on end!
I was just hoping if anyone can tell me the sort of things to expect after the op..while still in hospital. And also how long it took people to get the hang of dealing with "Fred," the name I've chosen for my bag..yeah I know stupid, but it's how I'm dealing with it.
Anyway thanks for reading and take care.

Puddin xx

Hi puddin!

I've had my ileo for 5 years now ... time flies. Understand the fear ... but don't let that get in the way of a positive mindset when you go into surgery.

You'll hear from others ... but I'll start off. My health and lifestyle have improved so much! Having had UC for over 30 years ... I was tied to toilets. Soiled pants, leaving work meetings mid-sentence. Cramping, pain, meds. And like you, I was scared of the thought 'the bag'.

Yes, it comes with its own set of problems. They are worse for some people than others ... but that's life.

What can you expect? At the hospital, I was amazed by the uncaring nature of the nurses. Thank the cosmos that I had a wonderful ET Nurse who made me feel like I was going to lead a good life. So first suggestion ... find out if there is an ET nurse associated with the hospital and get that person on board.

The actual physical healing was quite easy for me. The surgery was done laparoscopically by a colo-rectal specialist. Minimal surgical invasion, small wounds.

That said ... count on a good 6 weeks until you feel like yourself again. That was how long it took me almost to the day.

All the best,
Bea

Greetings Puddin! Try hard not to worry about the ileo and the bag, I've had mine since I was ten years old and I'm now 47, and I really don't think about it much. Like anything else, it can be a pain once in a while, and there can be occasional pouch problems, but nothing insurmountable, like Bea stated. Some people have more problems than others, but that's why we're all here in this Osty Family together... to help each other and support each other when we can... you will be ok dear, and I also share Bea's experience with the recovery time. I've had numerous surgeries due to my Crohn's Disease, but each time was approximately 6 weeks until you feel a bit more on top of things again... just rest as much as you can, do your best with pain management... and I bet you are quite likely to have an IMPROVED life when it's all said and done. If I lived close enough, I'd come sit at your hospital bedside to keep you inspired.
You be sure to keep us up on how you're doing, ok? xoxo

Hello puddin and welcome. Everyone has a different experience and outcome but I think that very few would say it was a wrong decision.
My life beforehand was horrific. I have other problems including bone marrow cancer, and some other metastases. But I had ignored a very important problem (I really should have known better) which was I found eating terrifying as I knew that what went in had to come out. Mostly it was vomiting constantly, or diarrhea. It was so bad for so many years that I gave myself stemetil or zofran injections, plus buscopan injections and I slept many, many nights in the toilet with my pillow leaned against the wall, a bucket in front of me and my trusty book.
I put all my symptoms down to chemo but it wasn't. Eventually last August I had to go and see a new specialist as my other had retired and as he looked over my referral and my list of medications he was horrified that I had been treating my symptoms but not the problem.
I remember saying well if you can come up with an answer the drinks are on me!
He actually laughed and said I had a lot of tests including nuclear tests, PET scan etc. to have done and he would talk after.
When I went back he said straight away it was very serious and that I had to basically make a decision on the spot as it was so urgent. He said if it was doable he would do it laparoscopically and take as little as possible so that we could reverse later.
I woke up a few weeks later after being in an induced coma in ICU. I thought it was the same day! But he had to do a radical open wound operation and remove all of my large colon and part of my small colon. So now I have an irreversible ileostomy.
To be honest, I wouldn't recommend going into ICU unless it was necessary (and of course they wouldn't do it!) but it did save me the recovery pain and when I went to the ward for two weeks I was on Fentanyl patches (as I have to have them anyway for my other problems).
The stoma and bag are a doddle. So easy to look after but I do recommend keeping meals small, I am still only able to tolerate low residue meals or liquid meals and I don't eat anything after 4pm as I seem to have to empty my bag a lot after this time and I want to get it out of the way so I can get my sleep. Oh, it's actually bliss.
So now I have put on weight, I don't vomit, I don't have intimacy issues with my husband as he actually learned how to manage it in case I wasn't well and I have had a good excuse to buy some lovely new clothes.
I did have an issue with the different type of bags but now have that sorted and would be happy to give you my list if you wanted to contact me directly.
I can't be there to visit but I will keep you in mind and in my prayers and I know you will be so happy you had the operation as long as you remember the life you left behind for the new life you will have.
I wouldn't be here without my surgery, it would only have been a matter of a few weeks, months at most.
So my dear, my very best wishes and I hope you will let us know how your operation went.
Sincerely, Lorraine

Hi Puddin,
I am also new to this site.
I had my operation six months ago, without my knowledge.
I had pains in my stomach and constipation.
I went to the hospital and woke up with a bag, which was quite a shock for me.

But now I am used to it, and I don't think I will have the reverse operation because my doc said it is a risky operation, and my age and health are a problem. Also, I would be running to the toilet a lot.
I am trying to eat all normal food as I did before and I don't seem to have problems.
I have no large intestine; that was all removed.
But now I have a terrible craving for chocolates, which I don't know if it is good or not.
It is strange, but a lot of people say I look better now than I did before the operation.
Anyway, I wish you all the luck.
And keep us posted with your well-being.
Good night.
Regards,
Midgey

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

Hello Puddin, I'm a new ileostomy patient. I had my emergency surgery nearly 5 weeks ago. I only had a general surgeon and my bowel had ruptured, so I have a big wound site. The surgery site is healing extremely well, but the stoma site is slower for me. I had to have a second surgery due to a twisted bowel. They went back in through the stoma site and put stitches around it. Once they came out, things were easier. Skin barrier wipes have made a huge difference. All in all, it has gone fairly well. Finding an appliance you're happy and comfortable with makes a massive difference. It has given me more confidence regarding leaks and going about things. I feel good apart from a small strip of very burnt skin from the second op. Six to seven weeks seems about right, like the previous people have said. Good luck.

Hi there! I am 10 months with the bag and have gone through the works so far -
I forgot to snap the closure tight ONCE - you learn quick!!
Found out the hard way that some hair conditioners and lotions don't agree with the bag glue. After a wonderful shower and hair conditioning, I laid down to read a "real page turner" book -- then when I stood up off it came - I was at home and no issue came out because I was quick.
Found out I am reactive to all the "glues" but one and am very thankful I found that one.

You know this is life - just like learning to walk - you trip and fall but you get up and move on -- life is a journey not a destination and it is too short a journey not to have fun and see the humor -- And believe me I could write a book on some of the predicaments that could have been disasters.....

Food - I think everyone has to sort that out -- I was just given the okay to try most foods now - but my situation is different due to FAP - so I am not one to advise - I do know that what works when your body is healing will not be the limit later when all is settled --

Be sure to have blood tests for iron and all that realm if you feel too tired -- I am set up for 3-month intervals again because of organs lost from FAP not just the ileostomy.

I wish you well. Fear only robs you of freedom - go with joy in your heart and look for the rainbow ---

Ewesfull, that was good advice about supplements and blood tests. I forgot in all my posts to mention that just as a person who has stomach stapling or bypass, you lose so many nutrients. Most people would already be deficient because of their prior health problems.
I was advised to have two weekly blood tests for FBE (full blood examination) and ELF/Ts being electrolytes. A person can become very seriously ill if they don't realize this. My stoma nurse didn't mention supplementation or diet at all, never, except to say just experiment with foods etc.
I did get monthly blood tests which have now changed to every two weeks anyway for my chemo, but my oncologist rang me on Monday to ask if I take supplements. I said I did a one-a-day multiple. She said stop it immediately. Go to the pharmacy and buy calcium+vit D chewable, iron + C chewable, dissolvable or liquid formula, an electrolyte solution, and complete vitamin B again chewable or dissolvable.
I asked why, and she said she was horrified when she saw how depleted I was and because a tablet takes varying times to digest, they can and often do go straight into the bag without any absorption.
This led to my next question: what about my usual meds? She said to check with the pharmacist to see what can be crushed and added to a liquid. If it's sustained-release (SR after the med name), it can't be crushed but should be cut into 3-4 pieces if large enough or halved if small. But we are doing a complete overhaul of all meds to see what options there are.
I've been long-winded, but it is such an important topic. I thank you for raising it. God bless Lorraine.