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Crohn's Disease Forum » Support Forum » Surgery looming.. Worrying over stoma possibility... Least pain is controlled now !!


08-13-2013, 12:16 PM   #1
Hendaz85
 
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Surgery looming.. Worrying over stoma possibility... Least pain is controlled now !!

Well the date of my operation is fast approaching with only 5 more days to go. Really starting to worry now especially at the increased risks of potentially needing to have a temp stoma bag. Has anyone had one ? What's it really like? I am petrified. I really don't know what I will do if I wake up to have one.

I har now been given oramorph to help with the pain until my operation. What a relief it has been.
08-13-2013, 12:26 PM   #2
nogutsnoglory
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The main thing to focus on is that you will be better and need this procedure. What kind of operation is this? Has your surgeon said there is a possibility of a stoma? I know it can be nerve wrecking, I'm in the same place but the truth is we need what we need to get better and the world doesn't end, we just adapt to change.
08-13-2013, 12:37 PM   #3
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I really can't focus on anything else. It petrifies me. I am having a laparoscopic ileocolic resection ( I think that's what it's called ). Just big words to me.
08-13-2013, 01:10 PM   #4
nogutsnoglory
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I had that surgery done and it didn't require a bag in my case. How much are they expecting to resect? Did the surgeon say you might need a bag? If they didn't mention it, I wouldn't worry too much. They try to avoid the bag whenever possible and sometimes if they use one its only temporary as the bowels are healing.
08-13-2013, 01:23 PM   #5
Hendaz85
 
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It's been mentioned a few times and obviously I have had to consent to it. They have also introduced me to the stoma nurse. The risks are Higher in my case as I have been on 40mg of pred since April and not been able to taper down to a lower dose.

They are taking 15cm of my large bowel, I am not sure exactly of the small.

I understand it would be temporary, but surgeon said it could be up to a year. That in my eyes seems ages. I need to be more positive. Just really getting me down.
08-13-2013, 01:42 PM   #6
nogutsnoglory
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I know it seems depressing but think of how much better you will feel. I am struggling with this myself as you will see in some of my posts but to be honest crohn's has forced me to be strong and I will pull through emotionally with a bag if needed. Stay strong and think about the benefits which far outweigh the downfalls.
08-13-2013, 08:52 PM   #7
Ginger is her name
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If a bag should happen, I can tell you that you won't believe how much better you will feel!! I thought it was going to be the end of the world...I couldn't even look at it for almost two months...it's been six months now since I've had Ginger, my stoma. It's really no big deal! (Believe me, I still have some days when I just don't feel like dealing with her!) We plan her home coming on 10/31. My docs tell me that if all goes as planned, she will return home by the end of the year.
08-13-2013, 09:49 PM   #8
Hendaz85
 
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Is your bag permanent ? I know I shouldn't be so negative because I really cannot continue living with this pain so I know the the surgery is the best thing for me but it really scares me. Thank you for your comment. Have you been in hospital for 6 months ? Is thatbecause you are learning to cope with a stoma ? Sorry for all the questions
08-13-2013, 11:25 PM   #9
PsychoJane
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Hi Henda,
Even though my stoma is pretty much permanent (As I never really considered reconstructing with CD, mostly from a personal perspective but my GIs), I can also tell you it can allow for a great quality of life. The hospital stay won't be extremely longer if it is to happen. Here it is somewhere between 5-10 days when things goes as planned.

It takes a bit of time to get use to it, it is normal. It changes your body and you got to adapt to the difference it leads to and you have to take the time to get use to the appliance and everything. That is if ever you need to have the temporary bag.
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08-14-2013, 09:09 AM   #10
UnXmas
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I'm getting a permanent ileostomy soon and I can't wait. No more spending hours and hours on the toilet, no more bowel incontinence... is it weird that I'm really looking forward to it?!

I have a family member who used to have a colostomy - you wouldn't have known it from looking at him with clothes on. He lived a really active life with the stoma, felt fine all the time.

A lot of it will depend on whether you have complications or problems with the stoma, but if all goes well it's not so much of a big deal, I think it's much less of a big deal than dealing with Crohn's in general. As your surgery is planned, if you do have a stoma you will be much less likely to have problems than if you were to end up having the surgery in an emergency situation.
08-14-2013, 09:19 AM   #11
Ginger is her name
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Hi! Nope, ginger is not permanent, but if she was, I would be ok with that. It really isn't a big deal to have her. I also feel lucky to have a supportive husband. I was really sick when I got her so I was in the hospital for 20 days and rehab for 6weeks because I was very weak. I've had ginger now for a total of 6 months. Ask as many questions as you want! it's the only way we learn!
08-14-2013, 04:38 PM   #12
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You will be fine good luck
Having a Stoma is not a big deal, you will have mastered everything you need to know during your stay at hospital,
Im quite naughty, as im supposed to change my bag everyday, but only do it after a few days even weekly, its just you dont notice it at all onced you have heeled from the surgery
Had nine 6 months now another 6 to go and no more stoma, it will be missed
08-14-2013, 04:51 PM   #13
Hendaz85
 
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Thank you all for your comments, guess I will not know until Monday what will happen to me but from the messages you have all left, a temporary stoma does not sound so bad and it will mean I can eat again !!! And have no pain !!!! Aww that would be heaven
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