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Crohn's Disease Forum » Surgery » Stoma Subforum » Possibly more surgery!!


02-25-2012, 05:16 PM   #1
Misty-Eyed
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Possibly more surgery!!

So Wednesday I went for another appointment with the surgery team to see how my healing is going and to see if the discharge is any better. I'm almost 5 months post op now and the discharge is still exactly the same!

Luckily they took me seriously this time rather than the 'it's still early days, it'll get better by itself' line I kept getting. After a thorough and painful examination which left me bleeding for two days (!!) they've decided to give me an MRI to see what's going on down there and are talking about removing what's left of my anus. Eek!

Will this ever be over?!? On a more positive note, I still don't regret my operation yet and I still love my bag. I honestly don't feel any different to the rest of the population now. Woo!
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'You can't change the past but you can ruin the present by worrying about the future.'

Diagnosed with Crohn's colitis aged 9, 1992.

Panproctocolectomy and terminal end ileostomy October 2011.
02-25-2012, 06:42 PM   #2
KazT17
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Hi Michelle,

I am going in on Wednesday for this op, a proctectomy. It doesn't sound pleasant but I hope it gives me a better quality of life. Had my ileostomy op last May.

I thought you had had a panproctocolectomy? But I must be wrong if you still have some bowel left. I hope you feel better soon - but it might help to research this op.

Love, Kaz xxx
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Crohn's diagnosed 2010
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Completion Proctectomy 2012
02-25-2012, 06:52 PM   #3
Misty-Eyed
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Thanks Kaz. Yes I did have a panproctocolectomy, but my rectum was firmly attached to my vagina and so a little bit of that got pulled out along with my rectum! They then sewed up my anus and the hole they made in my vagina.

Unfortunately the hole they made in my vagina has been leaking discharge since my op and the surgeon still found a hole in my anus area too where it hasn't healed properly. He thinks there is a connection there still, although what is causing the discharge and what is now where my rectum used to be, I have no idea! I'm hoping they'll have some answers and a resolution after the MRI scan and possibly a look under general anaesthetic.

I hope my post hasn't scared you for your operation! I am really glad I don't have my rectum anymore, if I'm completely honest. Even the problems I'm having at the moment aren't too bad. It's just annoying more than anything. Hopefully your recovery shall be a lot better than mine! Good luck for it! Please let me know how you get on
02-25-2012, 07:02 PM   #4
KazT17
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Hi Michelle,

Oh I see, sorry you are having problems, perianal healing is a common problem for us Crohnies. I am aware that there can be complications with this next op but at this point I am between the devil and the deep blue sea. I have other health issues too so I am just going in hoping for the best.

Hope they can sort you out soon Michelle, thanks for your good wishes, I will let you know how it goes.

Love Kaz xxx
02-26-2012, 04:40 PM   #5
Terriernut
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Oh Michelle, I cant believe they still havent sorted this and have waited 5 months to take you seriously! I'm going to sit here and worry now. I thought you've been so busy and happy and having fun because it finally stopped giving you trouble with the discharge!

Kaz...bless. I hope this op gives you all the relief you can get.

Hugs to both you!
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Misty
DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
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02-26-2012, 05:03 PM   #6
Misty-Eyed
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Thanks misty. Please don't worry though, I'm doing ok minus the obvious lack of bedroom activities. Just hope they don't do anymore damage or I may become a nun!
02-26-2012, 05:51 PM   #7
KWalker
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I hate to laugh, but that was funny! lol. Best of luck to you and hopefully everything will work out for the best
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Age 2 (1992)

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Prednisone
Remicade
Humira
Methotrexate (oral)
Methotrexate (injections)
Cipro
Flagyl

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200mg Simponi, Psyllium
02-27-2012, 10:58 AM   #8
carolhew
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Misty, I have been following your story and am so sorry to hear you will need more surgery! You have been an inspiration to me and will continue to be. Hey anything to get the lady parts in working order! Best wishes! Carol


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Currently on: Remicade 10mg/kg every 8 weeks and azathioprine 150 mg daily
Previously on: Entocort (budesonide), prednisone, Pentasa and Humira
Diagnosed: June of 2011 with Crohn's in the terminal ileum.
January 2012: stricture found in terminal ileum, balloon dilation
Remission as of January 2014!
02-27-2012, 12:43 PM   #9
KazT17
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Sorry to butt in on your thread Michelle. Just had an email to say my op is 'probably' gonna be cancelled this week. This happened to me just before xmas too. I feel so bad and then so guilty feeling bad, cos I know it is for someone with a more urgent need for surgery. Sorry again xx

I feel like just not bothering to have it done at all. (What a baby lol)

Kaz xxx
02-27-2012, 12:52 PM   #10
Misty-Eyed
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Carol, that is very kind of you to say so!

Kaz, don't be sorry. Don't feel guilty. Surgery is traumatic and to mentally prepare yourself for surgery for it to be cancelled is annoying in the least! You want to get it over and done with so you can move on. When will you know for certain? I would find it hard to cope with the not knowing!
02-27-2012, 12:56 PM   #11
KazT17
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Thank's Michelle. The surgeon's secretary said she will let me know by tomorrow night, but from her email it seems like it will be cancelled. She said she will 'try' for later in March. My nerves are shattered!!!!

Kaz xx
02-27-2012, 01:00 PM   #12
Misty-Eyed
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Aww I'm not surprised. How rubbish!! I really hope you get it over and done with soon! *big hugs*
02-27-2012, 01:10 PM   #13
KazT17
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Ah thanks. Let me know how you get on with your MRI, hope you are all sorted soon xx
02-28-2012, 06:30 PM   #14
ameslouise
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Good luck Michelle! I hope they can get it all figured out for you! (And you can stay out of the convent!)

- Amy
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