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03-20-2015, 07:07 AM   #1
Seamus0239
 
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Big Op today for wife to be

Well friends, for those who have read my previous posts on here, today is the day my gorgeous girl goes under the knife.

Having been diagnosed with Crohns 7 years ago, she has gone steadily downhill and has been in a terrible flare for the last 2 and a bit years. The main problem is a not very comfortable fistula which has bled solidly since the start of this flare.

To give the fistula a rest and a chance to heal, she is going into theatre today and will come out with a stoma. They think it's going to be a colostomy but it could be an ileostomy (depending what the surgeon finds when he goes in). She had a part of her bowel removed 2 years ago which means an ileostomy might not be possible. She was drawn up for both yesterday.

The porter allowed her mum and I to sneak into the lift this morning as they took her down to theatre. Quite a nice wee moment before she went in.

She'll likely be out of theatre now. We've to call the hospital in an hour to find out how it went.

We're getting married in August and looking at houses near where her parents live. I pray to God that this gives her back her freedom and she can start living again.

I'm grateful for any advice on what to expect in the very near future (1-2 weeks), medium (up to 6 months) and long term (next number of years).

Thanks for reading.
Seamus
03-20-2015, 09:12 AM   #2
Cat-a-Tonic
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Good luck to her and to you! I hope this operation gives her a lot of relief. I haven't had this operation so I can't give you any info there, but I can tag a couple people with stomas and they should be able to be more help than I am - UnXmas, nogutsnoglory, can you give Seamus any advice about what to expect with his fiancée's stoma surgery?
03-20-2015, 02:44 PM   #3
UnXmas
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Hi Seamus, I hope all is going well.

Six to eight weeks seem to be the magic numbers for surgeons and stoma nurses: six to eight weeks following a low fibre diet (fibrous foods can cause stoma blockages, at least with ileostomies, so when the stoma is still swollen from surgery and it's harder for output to pass through it, it's best to avoid fibre); six to eight weeks for the pain to subside; six to eight weeks of avoiding lifting heavy objects and any strenuous activity as the incision heals.

For the moment though, your fiancee should concentrate on trying to ensure she's as comfortable as possible during her hospital stay - ask the nurses if she's in pain or can't sleep, as they can usually give something to help. She should have stoma nurses visiting her to show her how to care for the stoma, and they will answer any questions she has, though the stoma sub-forum on this forum is a great place to ask questions too. ( http://www.crohnsforum.com/forumdisplay.php?f=46 ) Is she a member here as well? When she's well enough to get online, she could get a lot of good information about stoma appliances and other practical issues as well as emotional support here too.

How did she feel about having a stoma? Is her stoma going to be temporary? My ileostomy is permanent, and was done to improve my quality of life rather than to enable the healing of a fistula, so I can't really advise on how the stoma will help with her Crohn's complications long term, but if you've any specific questions, I'll have a go at answering if I can.

I hope you'll be able to report back soon on the surgery having gone well.
03-20-2015, 04:59 PM   #4
nogutsnoglory
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Thanks Cat.

Seamus, the ostomy experience is wildly different per person. You both will have to deal with the emotional and physical toll it can bring. Emotionally it might be hard for her to deal with the reality of a bag, it's not the sexiest thing. Physically she may have to deal with stoma pain, problems with ostomy products irritating or not working.

Hopefully everything goes smoothly. Definitely request as many samples from companies you can to try different products to see what works best. Our stoma forum is a great place to discuss challenges.
03-22-2015, 05:27 AM   #5
Seamus0239
 
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It's been 2 days since the operation and I am amazed, and so proud, of the progress she has made.

The procedure was a colostomy and sits on her left side. The stoma itself is about the size of the hole if you touched the tip of your index finger to the tip of your thumb. I think it's quite swollen just now so will probably go down in size.

She managed to get out her bed and we walked to the ward lifts yesterday and back again. She was sore but managed it herself. Later in the day the ward was quite stuffy so we went outside to get a bit of air and feel some sunshine. It was a lovely day yesterday, the first proper day of Spring, so it was nice just to sit outside for an hour. She got out her chair and walked up the really bumpy parts of the pavement.

There's alot of air going into the bag just now. They must've pumped air into her during the operation. She's really self conscious about the bag blowing up. It's still very early days so that's to be expected. She ate yesterday for the first time since the operation. Nothing seems to be happening yet.

I'm so proud of my brave little trooper.
03-22-2015, 06:59 AM   #6
UnXmas
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I'm glad everything went well. From everything I've read, colostomies tend to be easier to manage than ileostomies, as colostomies produce firmer output and less of it. And you're right, the stoma will reduce in size over the coming weeks.

She'll probably be passing more gas than usual at the moment, since surgery upsets the digestive system. The same will be true when the stoma starts producing output - there may be more output at first, and it will probably be more watery until things settle down (though since I have an ileostomy, I'm not quite sure about colostomy output). If the bag does continue to blow up, there are various medications and dietary adjustments that can be used to try to reduce gas output. Or if it only happens occasionally, sometimes the best solution is just to make a quick trip to the bathroom and let the air out (air fresheners are a great thing for people with stomas. Stomas don't smell at all as long as the bag is closed. When you open the bag to empty it or you take it off to change the bag, an air freshener is a good idea). She can also experiment with different clothes to see which best disguise an inflated bag.

However, when my bag inflates, which doesn't happen often, I can't say it bothers me - so I have a bit of a bulge on one side of my stomach; people who don't know me probably won't know what it is, and people who do know me know I have a stoma. It doesn't have to be something to feel embarrassed about. But your fiancee is so new to this, it can be upsetting at first, but over the coming weeks she may start to feel differently about things.

Has she met her stoma nurse yet? They can be such a great help.

It will probably be a few days until the stoma starts working. If she can keep eating and walking (as long as her doctors have allowed it), it may help get her digestive system going.

Hope her recovery continues to go well.
03-22-2015, 07:53 AM   #7
kitt
 
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I'm glad to hear she is doing well. .Continue to be the wonderful support that you have been for her....I'm proud of both of you
03-23-2015, 07:39 AM   #8
jwfoise
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It's been 2 days since the operation and I am amazed, and so proud, of the progress she has made.
I know whenever my wife has had abdominal surgery, that it reallys saps her energy and it takes weeks for her to get back to anything like normal activity levels. The fact that your fiance is up and about already is great.

Yes, the stoma will take a while for the swelling to go down.

Good luck and I hope she gets better quickly.
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