Bowel resection this week.. Advice appreciated

[AussieMumma]

Hi all,
I am a newbie here so I will give a little bit of history. Diagnosed with Crohn's about 9 years ago, azathioprine was keeping it at bay until I had my second child this past September, then boom- post partum flare. Fevers and stomach cramps revealed I had a bowel perforation, so I went into hospital in November on a steroid drip. Have felt really awful since, mainly with crazy stomach pains etc. I am on 30mg prednisone, 25mg azathioprine at the moment, and going in for a bowel resection (terminal ileum) in 3 days. Scary stuff, but I have been really sick this past week, so I am counting down the days.
Surgeon says I shouldn't need a stoma unless he finds pus when he operates, so I am a little worried about that. Also worried about how much they will need to remove and any further complications I may have!
Does anyone have any tips for my hospital stay, or for the surgery etc. any advice appreciated.. It's coming down to crunch time!:eek2:

 

[ronroush7]

Everyone is different. Four years ago some of nh intestines had got twisted. They bad to remove about 6 cm of my intestines. Be prepared for them to get u up and moving the next day. Bring stuff to read or work on. The pain was really bad for me when they tried to get me up the first time. I wish you the best. Hope I didn't say anything wrong. Keep us updated.

2

 

[Jennifer]

Hi AussieMumma and welcome to the forum!

Sorry to hear about your upcoming surgery but I hope it goes well. Feel free to check out other people's surgery stories here: http://www.crohnsforum.com/showthread.php?t=30212

This may help you for your hospital stay: http://www.crohnsforum.com/wiki/Hospital-stay-what-to-take-non-urgent-help

Walking around helps your bowels to get moving again. Take it slow but try to move about. Since you're still on steroids and have been for a while there is a possibility that you could run into difficulty with healing properly. If you notice any nausea, vomiting, fever, smelly discharge from the incision, painful red swelling at the incision etc then be sure to tell your doctor right away as those can be signs of an infection.

I hope the surgery goes well and that you heal up nicely and go into a long (hopefully forever) remission. Keep use posted.

 

[Absentminded]

Hi,

Sorry you're having to have surgery, but hopefully it'll be a good tying in the long run!

I just had surgery last week (my 4th) so it's all super fresh in my mind!
Like the others have said, they will probably get you up the day after your surgery, although it will feel like the hardest thing you have ever had to do really give it a go, moving about is so important for getting your bowels moving after surgery.

On a personal note, before surgery I shave my arms and legs (right to the tops) as it makes removing any dressings or sticky bits so much easier and less painful!!

I also have some really big pants (they're actually prescription ones designed for stomas and post surgery) which I always wear, they come up right above my incision and help support everything -
http://www.comfizz.com/products/post-surgery/level1/ladies/ladies-high-brief-white.html
I swear by them!

Oh, finally, take something like Vaseline or sudocrem (nappy rash cream) to put on your bottom for when you start going to the loo, things can get a bit sore.

I hope everything goes well, I'm sure it will If you have any other questions just ask! Hugs x

 

[AussieMumma]

Thanks everyone. Surgery tomorrow, so I am pretty nervous but just looking forward to getting it done and being on the road to recovery!

 

[ronroush7]

Keep looking up. Pulling for you. Keep us updated.

2

 

[Jimena]

Good luck! Let us know how it goes! :ghug:

 

[AussieMumma]

So, the surgery went well. I had 30cm TI removed and an abscess that was apparently pressing on my appendix, which was still able to be done laparoscopically, thankfully. I woke up in recovery feeling only a small amount of pain and have been on a morphine drip, which they just took off me. I find the pain is really only bad when I get in or out of bed or bend etc. Just gefore I went under my surgeon said there was a chance I would have a stoma, as I had a colonoscopy the day before surgery which showed things were a mess and the fact I am on 20mg pred which us not great for healing.
Anyway, so after the surgery etc I am totally groggy and get wheeled into my room. A couple of nurses came in and one was explaining my chart etc and said "she has a bag" which she showed them... I was like "nooooo" at this point I hadn't seen my surgeon yet and had no idea I had a bag, so I burst into tears. Not what I was expecting.
I know 100% it is for the best to allow my body to heal! but it's going to take a couple of days to sink in. Apparently I will have it for 8-10 weeks, then another surgery for reversal. If anyone has been in this situation feel free to respond! I have not seen a stoma nurse yet, so I am very clueless! I have been on liquids since Monday and I think I start on light solids today.

 

[Buttercup]

Hi aussiemom I have surgery on Monday to remove I think about 10cm of ti! Getting abit anxious now but can't wait to hav it to get it done and hopefully give me some life back (eventually) hope u are feeling ok and not too sore x

 

[AussieMumma]

Buttercup, I was so nervous too. I can honestly say the pain has been a lot better than I imagined. My main stress has just been from this stoma and getting used to the whole idea of it. I hope your surgery goes really well. Feel free to ask any Qs if you have them

 

[Jennifer]

That's a shock to wake up to. I'm sorry AussieMumma. You will have it taken down though and hopefully won't need it again in the future. We have a section on the forum for members with stomas and I'm sure a few woke up not really expecting one. Feel free to make a new thread in there, the members there may be able to help you calm down a bit and can give you plenty of pointers. http://www.crohnsforum.com/forumdisplay.php?f=46 Hope you continue to heal up nicely. Keep us posted. :ghug:

 

[fozheart]

I had emergency surgery for a perforation and woke up with a bag too! At first I felt like I was just in a bad nightmare, and would not even look at my stoma for a few days. But then the stoma nurse came, and in a very gentle bedside manner, taught me how to take care of it, change the bag, etc. I felt so much more at ease! When I got out of the hospital, I had a home health nurse who came twice a week. I ended up having a good summer, and the best part was that even though I had some post surgery pain for a while, it was NOTHING like the pain I had before the surgery! My stoma was reversed 4 months later. Hang in there!

 

[AussieMumma]

Thanks Fozheart, that is exactly how I feel, like I am trapped in a nightmare. The stoma nurse came today and to be honest my stoma grosses me out, I saw it in all it's glory today. How long was it before it became a bit more 'normal'? I feel like I'm not going to want to leave the house until it's gone.. Arghh.. I just wish I felt better about it all.
On a positive, the pain I am feeling now is a fraction of the pain I felt pre- surgery. I know it's temporary and all for the best, I just have to get through this difficult period.

 

[Jimena]

It is super scary to deal with it for the first week. And i was the one who asked surgeon to make me a stoma! I was sooooo scared after the surgery and i was thinking that what the hell am i doing?!? lol. It lasted about week or two. I mean that after two weeks i really could look at my stoma without feeling icky. Those stiches and blood, and swelling makes it look 100x worse than it really does. I have had my stoma now 6months and i like to watch it while his "working". I have loop colostomy so mine is a big bugger :lol2:

It all gets better and easier, i promise! :ghug:

 

[UnXmas]

I'm in a different situation, as I had a long long time to prepare for my stoma, and my ileostomy is permanent. I absolutely love my stoma, I wish I knew the secret to my acceptance of it, because I'd pass it on to you!

I think it helps that it improved my quality of life a lot. If you can think of yours as either doing that, or of helping you avoid worse health consequences in the future, perhaps that will help you think about it a little more positively. It also of course helps to have a stoma that functions well, has few complications and is easy to manage, and if your stoma is not like this at first, there are many ways you can find solutions to any problems you are having as they arise. For example, finding the right products, getting into a routine of emptying and changing the bag that suits you, getting your diet and any medications you take right, etc. Stoma nurses can be very helpful, and look online and ask here about any problems you are having. I've found there are a lot more accessories and products for dealing with all aspects of stomas than I expected (including some really neat bag covers, so your bag looks more like a designer handbag in any colour and pattern you choose, which could help if you're feeling a bit body-conscious lol!).

It does take time to get used to, and the fact that you're recovering from surgery and feeling awful all at the same time makes it harder. As you recover and feel better physically, you'll be able to manage things better and won't feel so worn out, which will in turn make the emotional side easier.

As prepared as I was for my surgery, the first time I saw my stoma without the bag on, it made me feel faint - it looked massive and there was blood coming out of it, which made it smell so much I felt woozy. Within in a couple of weeks, I was changing my bag myself without finding it icky, and was ready to leave hospital. Your stoma will almost certainly shrink a lot in the first several weeks, it will become quite a bit more discreet, when the bleeding stops it will smell much better (and you can get scented sprays and things if you still find odour a problem) and hopefully you will surprise yourself with what you can cope with.

 

[JMC]

I had a right-hemi colectomy which resulted in a temporary stoma. It is often the best and safest way to allow you to heal properly and the three months will fly by and then it will all be forgotten. You are also fortunate that the surgery was done laparoscopically, so things should heal up quickly. Having a bag really isn't that bad (the thought of it is worse than reality), certainly better than running to the toilet in pain all day and every day that passes, you are closer to having it reversed.

 

[AussieMumma]

Thanks everyone for your kind words and advice! I am home from the hospital today and am getting a lot more used to my stoma. Getting good at emptying the bag, did my first wafer change today and generally becoming more accepting of it. This forum has definitely helped to make me feel less alone, so thanks

 

[Tamar]

I will keep my fingers crossed for you! I am scheduled to get a bowel resection in March. (unfortunately I have to wait because I am self employed and needed to get paid leave for a spring break at that time). Please let us know how it goes! I would love to hear. I am pretty scared myself... I Never had such serious procedure before. Good luck!!!

 

[beckett]

AussieMumma any updates? Your story sounds the same as what I have planned in a week...Prednisone and all...hopefully no suprise stomas...would love to hear how recovery is going