First crohns surgery

[blueskies]

Hi all
I just wanted a bit of advice and some reassurance about my first crohns associated operation. At the end of the month I am scheduled to have a resection of my terminal ileum and maybe either a stricturoplasty or another resection further up aswell. The surgeon has told me that I will have a temporary ileostomy for a few months to allow the bowel to heal. I am so nervous about the whole thing, I feel a bit overwhelmed, and it’s so much to take on! I have been on humira for the past 4 years and my doc increased it to one a week at the start of the year. It wasn’t doing the job at all and I went for a small bowel MRI to see what was going on. It was obvious then that despite the humira (and also entocort) that I still had some narrowing and am having pain also. My diet has become so restricted over the past couple of years…everything I eat is beige! I don’t tolerate any fruit or veg at all. I didn’t realise really how my quality of life had decreased over time. I am worried about waking up from the operation and seeing the stoma for the first time I rang my surgeon’s secretary and have asked that he might give me a call and talk to me about the operation. On the day I met him previously and learned that i needed the operation I didnt have a chance really to ask him any questions. One of my other fears whether its irrational or not is that my quality of life won’t improve and that I will end up being worse off, and I will have put my body through the surgery for nothing.

Thanks for reading
blueskiesx

 

[UnXmas]

Hi, try not to worry. I have a permanent ileostomy and it has improved my quality of life so much, I'm glad it's permanent as I'd never want to go back to how things were before. This may or may not be how it is for you - many people with stomas experience some problems, especially at the beginning, but usually issues can be overcome. If you have any specific questions, either now or after the surgery, feel free to ask. You'll also have stoma nurses, so you won't be going through this on your own.

You may well be upset when you first look at your stoma. I felt faint when I first saw mine. But immediately after the surgery, the stoma is extremely swollen; over the weeks it should rapidly decrease in size. It is also often bloody right after surgery - this is normal. Most people adapt to having a stoma - most likely you'll very quickly learn how to take care of it.

I can't say for definite whether your quality of life will improve as a result of this surgery, but I can tell you that it is certainly possible that it will. Your surgeon would not be operating on you if he didn't think the potential benefits outweigh the risks.

 

[blueskies]

Hi UnXmas,
Thanks for your reply, Its is really good to hear from you especially when you have gone through the same situation.

I am replying to this while I sit at work, today is such a bad day of pain and I am going to struggle on till home time when i can hit the couch, I am hoping that I have less days like this after the surgery.
I just wish the op was over with !

blueskies

 

[Daisy123]

I have had multiple resections for strictures and a temporary ileostomy when I was younger. The operation will be worth it. Surgery has always returned me to being able to eat lovely tasty food again and taken the pain away. I had my temporary stoma for a year, and it wasn't as bad as I thought it would be. Try not to worry. You will be so much better.

 

[cleuger]

I'm 3 weeks post surgery mine was open surgery to have my colon removed I'm like Unxmas my ileostomy is permanent. It was the best decision I ever made I am still recovering from surgery but am feeling better then I have in years and am able eat pretty much whatever I want for me I had several strictures in my large bowel I had not had pop corn in over 2 years gave it a test run the other day and had no problems. I was always afraid of surgery and without this forum would have probably chickened out life is good. Your quality of life is so important. I'm sure it will all work out for you.

 

[blueskies]

Hi all,
Well I am 12 weeks post surgery and I am feeling just great !! I am like a new woman, it has been the best decision I ever made. I was so scared having the op but I can reassure anyone in my situation who is reading this that it isnt that bad and at least for me it is sooooo worth it.

I had quite a long stay in hospital (16 days) as I did get an infection in my inscision site and needed some IV antibs. I have had that crohns pain for the past 17 years and now it is gone. Even when I had remission from a flare up I still had some pain, the meds just turned the volume down on the pain but never got rid of it completely. I am pain free now and I plan to enjoy every moment of it while I am !
I had 42 cm removed of very narrowed thickened and obstruction small bowel, ileocaecal resection. The surgeon said to me that he didnt know how I was functioning normally with that narrowing. Thats the thing with crohns you tend to accept some very abnormal situations and they become your normal.

The ileostomy was hard to control at the start, it was very high volume. In hsp they had me measuring inputs and outputs for my whole stay there, I had a few plastic jugs in the bathroom. We got it under control by restricting the liquid input, immodium and I had a few days on Saint Marks solution. Slowly the output started to thicken up.

I had an amazing Christmas, I accepted any dinner invitation which was going! My diet is about 100% better than it was, my hair, skin, nails, energy are all so much improved.

It takes a while to get adjusted to the stoma and the bag, I was all fingers and thumbs at the start. I used to give myself a couple of hours to get ready in the morning. It does take a little bit of planning. I was using the dansac convex appliance when I was in hospital and for some time when I was discharged, however I was having some spectacular leaks! I was really upset when I'd get a leak, but I think I was very weepy after the surgery anyways (I would cry for no reason in hospital, strange feeling). The stoma care nurse in my local hsp then changed me to convetec and I have way fewer leaks now.

I have started back to work and so far so good.
I am going to have the reversal on Feb 4th and of course I am now really nervous about that !! Any advice would be greatly appreciated.

Thanks for reading

Blueskies xx

 

[Blazinsquad]

Hi all
I just wanted a bit of advice and some reassurance about my first crohns associated operation. At the end of the month I am scheduled to have a resection of my terminal ileum and maybe either a stricturoplasty or another resection further up aswell. The surgeon has told me that I will have a temporary ileostomy for a few months to allow the bowel to heal. I am so nervous about the whole thing, I feel a bit overwhelmed, and it’s so much to take on! I have been on humira for the past 4 years and my doc increased it to one a week at the start of the year. It wasn’t doing the job at all and I went for a small bowel MRI to see what was going on. It was obvious then that despite the humira (and also entocort) that I still had some narrowing and am having pain also. My diet has become so restricted over the past couple of years…everything I eat is beige! I don’t tolerate any fruit or veg at all. I didn’t realise really how my quality of life had decreased over time. I am worried about waking up from the operation and seeing the stoma for the first time I rang my surgeon’s secretary and have asked that he might give me a call and talk to me about the operation. On the day I met him previously and learned that i needed the operation I didnt have a chance really to ask him any questions. One of my other fears whether its irrational or not is that my quality of life won’t improve and that I will end up being worse off, and I will have put my body through the surgery for nothing.

Thanks for reading
blueskiesx

I need to read whole thread before posting sorry