What do you wish you had known before your ostomy surgery?

[QueenFox]

Hello All,

As I wait patiently for scheduling ileostomy surgery due to my fistulas and failed medications I have many thoughts running through my head. I have had an temporary ileostomy and then reversal almost 12 years ago and I am sure many things have changed since then. I also see many people who had emergency ostomy surgery so were not well prepared or so sick they didn't think to ask something prior to surgery, so as the title mentions what do you wish you had known before your surgery?

It may have been about the different appliances products out there? What support you were eligible through insurance or government? Perhaps you woke up and thought 'what the...? they didn't tell me this would happen.'

 

[nogutsnoglory]

I didn't know about all the products or options. I was given a stupid clear bag with a clip and had no idea that they had opaque and Velcro options.

I don't think id ask anything differently I guess I was just better prepared for what was coming and the tricks I needed to learn.

 

[Nyx]

I didn't even know what an ostomy was. I woke up after emergency surgery with my Oscar. It was a shock to say the least. But I did a lot of research when I got out of the hospital and found this site and got a lot of support from the folks here.

 

[2thFairy]

I was fairly well prepared. I had done a ton of research on my own and learned the rest from this forum. If it hadn't been for everybody here, I think I would have lost my mind while in the hospital dealing with dehydration, ileus, leaks, weird heart issues, etc. But, each time one of them came along, my husband and I reminded each other that we knew it was a possibility and what to expect to correct the problem.

The wide range of supplies was something I didn't know much about. I knew there were choices, but didn't realize how many choices existed! For me, the best thing was learning about rings and strip paste and all of the other things to put around the stoma to help with leaks and protect the skin. I really wish the hospital folks were better educated in this. The only thing I was told to do to help was to use paste from a tube and then I had a weird skin reaction.

So, I think I had a pretty good understanding about the surgery and adjusting to a new stoma, but was lacking on all of the available supplies and how to get them.

 

[Dulli]

I got my Dot 2½ week ago, and re-surgery 8 days ago, because the first Dot didnt work as expected.

I would have loved to know that the whole process after surgery was so mentally hard. I've had cancer 3 years ago, and Crohn since i was 15 years old (27 now) and NOTHING has ever been as hard mentally as this. Maybe its just me, i dont know. I hope things get better in a couple of weeks.

 

[QueenFox]

The amount of supplies definitely surprised me as well. Back when I had my temp ileostomy I was a naïve 15 year old thinking I had the option of clear small bag, clear medium bad or clear large bag – and my useless stoma nurse didn’t correct me on that at all.

I think that experience left a bad taste in my mouth because I had frequent leakages, red raw weeping bloody skin around the stoma which they fixed by stitching it up to fix the position, while fully awake without pain relief because there was no available surgical theatre – not once did they mention convex pouches, strip paste or powder. Perhaps they weren’t around at the time, and if they were they didn’t bother telling me about it when I asked about options – the stoma nurse I saw maybe a grand total of 3 times in 18 months.

Let’s hope that doesn’t happen again and I am so very grateful for sites like these for information and the technological advances they keep making with ostomies – making our futures even brighter.

 

[Tricky Dicky]

Hmmm. I was having surgery for colon cancer and was told a stoma was a possibilty but not very likely, so I thought nothing of it. Was quite a surprise to wake up to be told the surgery was harder than anticipated. I didn't really know what a stoma was, so this is all new to me.

Now, 4 weeks post-op the last few weeks have been an education. Leaks, sore skin, no sleep - a huge learning curve and I'm not there yet, still get leaks. It generally takes 2 bags every time I change one. I don't know when the bag is full overnight, so I don't sleep for fear of blow-outs. I have an emergency kit, but I'm constantly worried about it when I go out. I've had 2 bag failures, with the flap opening depositing the contents on the floor (fortunately at home both times) but I live in fear of it happening when out.

I know it's reversible in a few months, but this period could be quite horrible.

 

[Crohn'sFor Life]

I wish I had known that it would solve all of my IBD problems. If I had known then what I know now, I would have demanded the surgery from the beginning. I could have avoided months in the hospital, and all the times I nearly bled to death. I would have avoided all the damage I sustained from continuous high doses of Prednisone.

 

[UnXmas]

I wish I knew how massive an improvement having an ostomy would make to my quality of life, so that I could have had the surgery a lot earlier. Or perhaps that's not actually true. I knew about the possibility of a stoma years beforehand, and I think I did know it was the right thing for me, but I put it off because so many doctors seem to think it should be the last resort, though my surgeon always said he'd do it if I wanted it. So I wish I'd had the confidence to do what I knew was right, rather that going along with the mainstream thinking that you should put off having a stoma until you've tried everything else.

One thing I actually did know before my surgery, but that I'm sure other people in England might like to know - that you're entitled to free prescriptions if you have a stoma (or at least if it's permanent; I'm not sure about temporary ones).

 

[DJW]

I wish I had done some research to even know what I needed to know. Or what to ask for that fact.

 

[SupportiveMom]

This is very helpful everyone. Anyone here have the surgery as a kid? Would you add anything more to this list if so?

 

[Tricky Dicky]

One thing I actually did know before my surgery, but that I'm sure other people in England might like to know - that you're entitled to free prescriptions if you have a stoma (or at least if it's permanent; I'm not sure about temporary ones).

Nobody has told me that, but mine is temp. However, I do have a pre-payment card for my prescriptions, so have already paid for the next year.