Anxious after pre op

[Sarah84]

Hiya,

I had my pre op today for the resection I am having next week. When I saw the surgeon a few weeks ago he was a big vague with what they needed to do and said they would need to put an action plan together and look for a good window to do the surgery as I was on a high dose of steroids. I didn't hear anything back until I got my letter through with the surgery date and then about a week later I had my pre op letter come through.

I went for the pre op today and did all the blood tests and ecg and everything, then they took me to the Stoma nurse who I spent about an hour with. She was lovely but really surprised no one had mentioned I would be seeing her. She had a quick look in my notes and read through the letter the surgeon had sent my consultant which talked about the surgery and that they would like to do a stoma due to me being on steroids for the past 6 months and wanting to give me the best chance of healing. She said it's not 100% its going to happen but it is what they are proposing to do. I kind of broke down at this point as its not something i'd really prepared myself for and I kind of felt like they are taking away one problem and giving me another. I know if it happend it's for the best but I still find it really daunting.

I guess I am just looking for some feedback on how people coped with theirs, what sort of food could you eat, she has told me there are 6 definite no no's, only mushrooms which really bothered me lol Another thing I am thinking is with clothes or going out, do you have to be careful with what to wear of where to go?

She did give me some bags to try out so I can have a play with them so I might be able to figure some stuff out.

Any help or advice would be greatly appreciated

Thanks
Sarah

 

[Terriernut]

Sarah, that must have been a shock! There are several of us here who had no choice and emergency surgery. So...yeah, we get it.

It sounds like they are suggesting a temporary stoma? Just in order to get you back to health. The best advice I can give you is to have a good read thru the sub forum. What can you eat to begin with? Low residue for the first several weeks, then introduce normal foods slowly. I still stay away from mushroom!!! (I'd kill for popcorn)

Although a stoma sounds daunting, its far from it! You can wear normal clothes, but you will be swollen after the surgery and may find that loose clothing will work best for you. What you will want to make sure of is that they place the stoma correctly, so as not to interfere with your normal clothing. Mine is too high! You will not want your waistband pushing against your stoma.

Good luck to you!!! You have us for any help going forward. :kiss:

 

[shamrock15]

Well, it will be an adjustment. I had to have mine done in an emergency. My first surgery didn't have the stoma, but sutures in bowel ripped and apparently nearly killed me. It happened because I had been on pred forever and a day, and the bowel wasn't strong enough to hold. They needed to put the stoma in to let the bowel heal. It was pretty easy to take under the circumstances, and I only had my temp one for four months. The reversal went off without a hitch, and honestly, once I got used to the stoma and bag, there were a lot of reasons why I actually preferred having it. Hope all goes well for you!

 

[Sarah84]

@Terriernut Thanks It was a huge shock but it is finally sinking in I think and the forum is helping a lot actually. The plan is a temporary stoma but she did say that sometimes reversal isn't possible but that it's rare not to be able to do it. The nurse is coming over next Tuesday to mark where it will need to be. She did say it would need to be higher than normal and it'll be on the right hand side because of where they have had to do the rejoin.

 

[Sarah84]

@shamrock15 Thanks for sharing how yours went, it's really helpful to hear how other people coped to help put my mind at ease. I am glad that you are back on the mend and that the reversal was a success

 

[CrohnsHobo]

I had a sub-total colectomy with temporary stoma 7 weeks ago tomorrow. Typing that I can't believe it has been that long, it went by fast.

I was worried about it at first like you up until the second they put me under. Mine was done via robotically assisted laproscopic surgery. I didn't know how much I would wake up with cut out when they knocked me out. I ended up with about 1/4 to a 1/3 of my colon left. There was a slit across my pelvic area right where a button on pants sits where they tucked up the tail end and a stoma to right of my belly button. The stoma was about 2 inches across, it is now about 1 -3/4. I was only in the hospital for three days.

The recovery has not been bad, I am off steroids for the first time in many many years. I have been on and off for 16 years and was steroid dependent going into the surgery.

I would prepare yourself and expect to wake up with the temp. stoma. It seems like it really is a better way to heal than having it all hooked up at once.

I will be honest, I don't really care for the stoma. I am self-conscious about it. I feel OK, taking care of it is not to big of a deal, I have a routine now. It is just not comfortable having this thing hanging off me. I am counting the days until I can have it reversed. I just have to remind myself that when this is all done I will be a new man with a clean slate. No more blockages/strictures.

I think it helps to talk to people that have had it done, reading here and meeting some other people in my age range that had it done has helped.

 

[skippy111]

they told me mine was temporary but because they were unable to do the colonoscopy there is a chance it is permanant.

so be it, they will have to tie me down and take my bag by force...

Getting this bag was the best thing that ever happend to me. It is easy to manage, I use the two piece Hollister lock n roll with flange...
nobody knows I have it unless i tell them...

This bag gives me the freedom to go places without having to worry about running to the bathroom, etc....

the first 2 weeks after the surgery were getting used to and learning how to change, empty etc...

I have not sat on a toliet in weeks... even emptying it is easy, I find it easier to kneel infront of the toliet with everything within reach than sitting on it lol

I did have to sit on the toliet tho while I was on the cipro and flagyl to let the rectum empty out the left over stool and mucus, this is normal, it means the antibiotics are working... make sure you drink plenty of fluids.. apple juice for potassium and drink water too...

 

[littlefreebird]

aww big hugs to you!

i had a month to prepare from getting told i would need my colon, rectum anus removed and have a permanent bag in june- had the surgery in july. its nearly a year later. do you know if the surgery is open or keyhole? i had open surgery but my recovery was super quick.

i agree with the above posts, getting the bag was the best thing i ever done, i wish i'd had it sooner. from about 6 weeks post-op i realised for me having a bag was no big deal and that i'd worried and fussed over nothing. it's very simple- i stick a bag on, forget about it and stick a new one on a few days later. i empty everytime i go for a pee and it takes seconds. before my op i sat for hours on the toilet- was such a waste of life!

i wear what i want, if my jeans are low rise i have the bag over the top and wear a long tight top to hold the bag flat against my body.
high waisted things are my fav as they go right over my bag and most of the time i wear jeggings that i can pull right up over it too.
on nights out i wear all my old dresses i used to wear, nothings really changed.

http://www.crohnsforum.com/showthread.php?t=28320

i posted pics a couple of months after my op.

as for food, i plucked up the courage to have salads when the warm weather came in: lettuce, cabbage, onions, cucmber, etc. it was all fine. my stoma nurse told me to always avoid nuts- i had a handful the other day for the 1st time and i was fine. everyone is different, theres some that need to be careful and there's some that have the exact same diet as they did before surgery.

 

[Blue]

heyy sarah,

I didnt have a stoma but my friend has had one, and he said its fine once you get used to it. Just think, although it sounds very cliche, it will help you in the long term. I know what i say may not provide much comfort as i haven't experienced it, but it will make you feel better in the long run, im sure of it.

good luck with everything

~Blue

 

[Samboi]

Hi Sarah.
I got my bag at the start of the year. It has taken me a very long time to recover physically from the surgery, and psychologically from the changes that have happened in relation to having the bag and being so unwell.
I have certainly got used to it though. I went to the bathroom the other day and could not work out why the top of my shorts were damp. I then realised I had not changed my bag after my shower - as I do every morning. I had totally forgotten about it, and had damp dacks for the rest of the day - not nice in winter!! Really happy that I have reached that point though.
I've cried a lot of tears over having a bag. I've cried a lot more over being so sick. But without that little bag - I'd be dead. And now - I'm reluctant and a little fearful to go back to no bag. Pretty excited about the awesome scar I will have though!
I hope it all goes well for you.

 

[Sarah84]

Thanks everyone for the responses they have been a huge help!! I will reply more fully when I get back on Monday and have my laptop again, rather than trying to do this on my phone lol I am going to stay with a friend this weekend in the hope that we can have a really fun weekend and it'll distract me a bit from whats to come

Hope you all have a lovely weekend!!