Back from hospital - with an ileostomy!

[UnXmas]

My surgery didn’t go exactly as planned: what was supposed to be a couple of nights in hospital ended up as nearly two weeks as I had post-surgical ileus – paralysis of the digestive tract as a response to surgery. This wasn’t diagnosed right away because it usually causes vomiting, and I wasn’t vomiting. Nothing could go down my digestive tract and out through the stoma, but nothing could come up either. I spent days in agony – the worst pain I’ve had in my life – before a nurse realised my stomach looked like I was nine months pregnant and they made the diagnosis. They put a tube in my stomach and pumped out litres and litres of bile, which made me feel a lot better. (The tube wasn’t anywhere near as horrible as I thought it would be – in fact I was worried when they went to take it out as I didn’t want the pain again.) I am ridiculously underweight now though. They had me on TPN but I think I still lost a lot. Since I got home I am feeling almost like a human being again, except that I am too weak to do anything. Even something like getting dressed makes my arms ache and just walking around the house makes me need to lie down.

I think I am going to be pleased with my ileostomy though. I think when I’m recovered it will be worth it. It is easy to look after, now that it’s finally working.

The nurses and the stoma nurse were wonderful, and many of the women on my ward had Crohn's and/or stomas. We learned to use our stomas together; there was no shame or embarrassment. I also saw just how sick Crohn's can make some people. The women opposite me had been in hospital two months. But she went home the same day I did. Even terrible Crohn's can improve. I'm amazed at how I've gone from the sickest I've been in my life to being well enough to be at home in just a couple of weeks. In the midst of it I thought the pain and sickness would never end and was terrified. Because of the ileus, it's going to take me a few months to get back to normal (my "normal" anyway), but at the moment I feel better every day.
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[Cross-stitch gal]

Sorry to hear all you've been through in the last couple of weeks. But, thankful to hear that you're doing much better! Hope things continue to improve for you and you'll be back to yourself soon. Thanks for the update! :hug:

 

[BowelMeOver]

Welcome home! I hope the days ahead are much happier and healthier.

 

[nogutsnoglory]

Major virtual hugs for all you have been through. Welcome to the secret stoma society. We poo in front of strangers and get away with it! Gotta have a sense of humor with our stomas but in all seriousness the stoma forum here has some great info and I have gone way back just reading old threads. YouTube has some great and brave Ostomates who also share their experience and product reviews.

 

[UnXmas]

Thanks. I'm actually loving having a stoma. It's so quick and easy, and not having to worry about when I'll get to a bathroom and how long I'll spend there is a huge weight off my mind. And probably TMI, but I much prefer it now that I'm apparently passing no wind through the back passage at all. Yes, the stoma makes bubbling noises, but there's no smell, and because it doesn't feel like technically part of me, I don't feel embarrassed by it. Having been in so much pain and stuck in hospital waiting for my stoma to finally start working, my first thought when it makes a noise or when I see the bag needs emptying is currently, "good, still working!" Maybe that novelty will wear off when I start spending more time in public places or formal situations though.

I'm currently testing out drinking coke - my stoma nurse said it should be fine but might cause a lot of wind if I'd don't let the coke go flat before drinking it, but it's my favourite drink, and so I thought I'd try it now - I'm leaving all the fruit and veg until I'm fully healed before I eat them again. Currently the only fruits and veg in my diet are bananas, avocados, carrots and apple juice.

 

[nogutsnoglory]

Coke created enormous gas pain for me in the beginning, I'm tempted to try it again but a little scared and it's not the healthiest thing anyway. I'm surprised they allow you carrots because they are pretty hard to digest. Please cook the heck out of them.

 

[Ihurt]

Hey unxmas,

I am so sorry you went through such a rough time in the hospital. I am glad you are home and feeling some better though. I can see where it is a relief with the stoma and not having to worry about being glued to the toilet. I hope this surgery will help give you your life back as I know you have suffered a whole lot. Hope you heal quickly and can get back on your feet soon....

 

[Jimena]

I love my coke and i could'nt live without it. I do have colostomy but i don't get gas from coke, atleast not more than from anything else i eat.

 

[2thFairy]

I was also in for 12 days with my ostomy surgery due to ileus and some weird heart issue that only surfaced after surgery. Like you, I returned home very underweight.

Glad you are home and doing well! I absolutely love my ileostomy. It's so nice to not have to rush to the restroom or worry about pain after eating. I laughed at your comment about not having wind from the back passage. I was in class one day when I had to stand very close to a classmate who was sitting. They turned and looked up at me and said "Just don't fart on me." I laughed and thought 'I couldn't even if I wanted to!' Ha!

I was concerned about carbonated drinks causing a balloon bag and waited a long time to try it. I finally couldn't stand it anymore and just had to have a Coke. Turns out, I don't have any problems with carbonation, but onions give me a lot of wind.

Congratulations on your new life and welcome to the Stoma Club. All the cool kids have them!

 

[UnXmas]

Coke created enormous gas pain for me in the beginning, I'm tempted to try it again but a little scared and it's not the healthiest thing anyway. I'm surprised they allow you carrots because they are pretty hard to digest. Please cook the heck out of them.

The coke gave me absolutely no problems. I was told carrots are a good vegetable? They seem to have gone down alright so far anyway - I do cook them to death.

 

[2thFairy]

Cooked veggies are fine with new stomas. CAREFULLY add raw veggies later on down the road, a little at a time.

Also, keep in mind that if you eat beet root, you will end up with what looks like a bag of blood, but everything is perfectly fine.