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09-22-2010, 04:08 PM   #1
Silvermoon
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Update from Silvermoon

Well for any of you following my pathetic life (LOL!) I'd thought I'd post a l'il update for you....

Saw the surgeon and the gynaecologist on Monday. When they tried to do the tubal and remove the ovarian mass a month ago, apparently they couldn't visulaize anything with the laprascope as my entire pelvis is filled with scar tissue.... The probing of the abcesses showed that every one of the 983475 sores in my groin and perineal area all lead back to about two or three fistulae that connect to the bowel.....

Soooooo... looks like a colostomy it is.... Signed all the paperwork before I left the surgeon's office. He figures he can get me in in about 6 to 8 weeks - seeing as how he has to coordinate theater time with the gynae so they can both be in there together (gynae still wants to, more so in fact now, after seeing all the scarring, due tubal, as he doesn't think a pregnancy would be viable at this point in my life anyway... plus he wants to see what the heck this "mass" is on the ovary...) ....

But they want me to taper off the prednisone before surgery (of course) so back to being tired and no energy and pain in my groin so bad I can't walk some days.... oh well, I guess that is what pain pills are for...LOL!

Starting new job (well, same job; different community) on Monday, so that should keep me occupied and out of trouble until the big "S" day.... Plus finishing up the current course I am taking and I registered to start new course November 1st... should keep me going for a while.

Hope the rest of you are taking care of yourselves.

Squishy hugs to you all......
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09-22-2010, 04:16 PM   #2
Crohn's_Doll
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Silvermoon, sorry you have to endure the pain, but you're right pain pills!!! Love your positive attitude.
09-22-2010, 04:24 PM   #3
Cat-a-Tonic
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Hi Silver, glad to hear from you. I hope everything goes well with your new job and of course the surgery. If you don't mind me asking, is it going to be a temporary or permanent colostomy? Either way, I hope it makes things better for you. I don't have an ostomy, but from everything I've read on this forum, it usually seems to make life much better. I hope it does for you! Good luck!
09-22-2010, 04:30 PM   #4
Crohns08
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(((Hugs))) Glad to hear from you, it's been awhile! :P

Good luck to you on your surgery, I'll keep you in my thoughts and prayers that the day comes soon so you won't have to endure so much pain and for a swift recovery! I hear you on the pain pills, I've been having to take some for my severe arthritis pain. Can't move around without them! Keep in touch and take care!
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09-22-2010, 04:30 PM   #5
seaofdreams
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Lots of luck to you in your new job and with your surgery!
I hope you recover quickly and that it gives you some relief
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09-22-2010, 04:30 PM   #6
Entchen
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Hi Silvermoon: Lots of changes coming up for you. Sending warm thoughts that you'll get through the next several weeks okay and start finding relief soon. Hope all goes well.
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Have used: 4500 mg Pentasa, 4500 mg Salofalk, Flagyl, Cipro, 50 mg Prednisone, 9 mg Entocort.
Turned my Crohn's life around: ginger for nausea.
Claim to fame: "loopy and floppy" colon
09-22-2010, 05:28 PM   #7
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Hey Silvermoon, I wondered how you have been doing and we miss you being on her cause you are such an amazing help on this forum.

I know your surgery will be just fine, and when you have pain you have to control it...hopefully you will get some relief soon.

Good luck starting your job and hang in there, you are an inspiration to all of us! Keep us updated ok> Big squishy hugs back!
09-22-2010, 05:54 PM   #8
ChefShazzy
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Silver! Thanks for the update, do keep us in the loop with how things go. All the best to you.
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09-22-2010, 06:02 PM   #9
Jennifer
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Two or three fistulae? I thought there were symptoms that one would feel or maybe I'm wrong (I've never had one). Did you have no symptoms or were your other symptoms overshadowing the fistulae? I suppose that's possible. I'm so sorry Silver. My boyfriend always says, "if it's not one thing its another." Not very uplifting I know but at least you know about it and will soon know more about that growth too (hoping for a simple removal and nothing more). *hugs* for you.
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09-23-2010, 05:46 AM   #10
DustyKat
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Hey Silver,

You are one incredible lady!!! What an inspiration you are. I'm thinking about you and hoping all goes well with your surgery. I hope the lead up to it isn't too bad.

Sending you loads hugs.....................



Dusty.
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09-23-2010, 06:08 AM   #11
Astra
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Silver my friend, you are one gawjus girl!

and besta luck too with your new job!

keep in touch and take care
love as always
Joan xxx
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NOW ON -Amitriptyline 25mg
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09-23-2010, 10:55 AM   #12
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Hi Silvermoon, lovely to hear from you. Best of the luck with the surgery and your new job. Thinking of you and sending you a big hug xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
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09-23-2010, 11:41 AM   #13
Jer's Girl
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Good luck with the surgery. It can make your life so much better.
09-23-2010, 12:23 PM   #14
Silvermoon
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Thanks all, you guys are the bestest. *Silver wipes a small tear from her eye*

Crabby: lol you ask such a very good question...one I have asking for three years.... When these sores first started showing up (about 10 years ago), I asked the doctors then "Could they be fistulae?" and everyone from my internalist to dermatologists said "Uh uh.... they aren't presenting like 'normal' fistulae, and we can't see them in the bowel, and they don't really bother you bad enough to be fistulae....so they aren't fistulae". So for THREE years (when they started getting to the point where I literally couldn't deal with them anymore and they were afecting my life...) we have been trying to fix them with anitbiotics.... bring them under control for a week or two until they "flare" again... and eventually, as does happen, the antibiotics just quit working....

Until FINALLY I found a general practitioner who said..."I don't THINK they are, but lets send you to a surgeon and see what he says." ... and now I finally have the diagnosis I came up with 3 - 5 years ago....

And the most frustrating part of that whole senario is, I KNOW how the system works, and I still couldn't get anything done...even trying to be "sneaky" about it and go at it from a "professional" standpoint rather than a "patient" one.... Those of you who are trying to get answers and cannot who are outside the system... I am in awe of you... how you haven't shot yourself or, better yet, someone else, is beyond me, and I commend you for sticking to it and not ever giving up. It may take some time...but stick with it... the answers will come.

Until then, if you need a shoulder to cry on... I am here....
09-23-2010, 01:45 PM   #15
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Awe.. Warm wishes for a speedy recovery Silver!

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Surgery: Abscess/Fistula - Aug2010; GB 2015
09-23-2010, 02:49 PM   #16
GutlessWonder86
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Hang in there Silver!!! From one Crohnie to another......I'm behind you all the way!

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09-23-2010, 08:15 PM   #17
Dexky
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Silver, I'm sorry I missed this til now!! I hope you get the relief you deserve from all this bs you've been dealing with. We all miss you when you're not around!!! Not to mention the much needed educated advice you give!!! Thinkin' about you Silver...as always!!
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09-23-2010, 11:54 PM   #18
gypsigirl28
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Hi Silvermoon, I hope you finally get the relief you so deserve..... I can relate to the frustration, trying to get some answers... take care and I hope you are feeling better soon. I hope that surgery helps you out...
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09-23-2010, 11:55 PM   #19
Nyx
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How did I miss this thread??? Wow! Sorry to hear about your troubles Silver! I have a colostomy, so any questions you have, feel free to ask! (It's really not that bad...just a hint, after the surgery, keep the catheter in as long as you can...you'll be amazed that you get to stay in bed for days on end and not have to go to the bathroom!!!! lol).

But seriously, good luck, and I hope your surgery makes you feel as good as mine did ...Welcome to the club!
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Crohn's Diagnosis: May 2006
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"Never trust a fart." Jack Nicholson, The Bucket List

Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

09-24-2010, 04:59 PM   #20
acg101
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Silver, good luck with the surgery and the new job. I am glad you finally getting the right treatment.
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1. Diagnosed with Crohn's UC 1995
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3. Used 5mp, asacol, 6mp, remicade, imuran, Cimzia, entocourt, Flagyl/Cipro and enemas/suppositories until 2010 with periodic relief.
4. July 9th 2010 total ProctoCollectomy surgery! Free at Last!
09-24-2010, 05:13 PM   #21
lseibert
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Good luck with your surgery and the new job. I'll be praying for your fast recovery and thank god for pain meds.

Lots of hugs.....


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09-24-2010, 05:46 PM   #22
wolfem
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Silvermoon,

I hope that everything works out for you. Good luck on your job. I hope that you are pain and stress-free.
09-24-2010, 07:50 PM   #23
rottengut91
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Hey Silver
I'm fairly new here, but wanted to extend my regards. You have a great perspective on things, very inspirational. I'm glad you're finally going to get some relief. Good Luck with both of your new endeavors.
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09-24-2010, 10:26 PM   #24
Jerman
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Hiya Silver, Hope that you get the medical attention you need real soon, you have been a wonderfully supportive person. Truly genuine and selfless. I really hope you are feeling much much better really soon.
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09-29-2010, 11:29 AM   #25
Silvermoon
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Thank you so much for all your warm wishes and support... it reallly does mean so much to me.

GW: Becareful back there! It's a little uncontrolable ATM and I never know where it might spray!! LMAO!

Cindy: I already have plans to steal catheters from work so I can spend days on end in bed after I get out of the hospital... I figure they will be great on road trips too... can drive for days without having to stop! LMAO!!

Today is my third day in the "new" job, and so far it is going awesome! Of course, as my hubby said to me "Babe, you find every new position awesome... it's after a few months that you get bored and start looking for your next "adventure"!!" LMAO! But it's all good. The manager has some new things she is throwing at me, and has a long term plan to keep me interested an learning for a few years to come, so not sure how I am going to get bored here!

And even though I am weaning off the pred (down to 15mg this week) I am still relatively pain free... I am very tired at the end of the day, but that could just be the "let down" after an exciting new day at work....

So far so good... hopefully things stay somewhat reasonable until surgery time.....

Hope you all are trying to take care of yourselves. Even though I haven't been here much lately, I think of you all lots and often. Wonderful to see all the newbies, and hopefully you all are getting the support and answers you need. Feel free to PM me if you need some help.

Big squishy hugs....
09-29-2010, 03:00 PM   #26
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It's great to hear all this, I'm so happy for you and hope you keep loving your job. Keep feeling better, and the doc started to taper me down on my steroids today, yeah!!!!

09-29-2010, 03:16 PM   #27
Crohns08
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Glad to see things are going well for you Silver! ((Hugs)) You deserve all the best and it's about time things are looking up for you!
09-29-2010, 04:11 PM   #28
Astra
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Aw fab news Silver! hope it continues forever!
lotsa hugs xxxxxxxxxxxx
09-30-2010, 04:50 AM   #29
Dexky
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Of course, as my hubby said to me "Babe, you find every new position awesome...
I don't know how many positions there are, but for his sake, I hope you keep finding them . Oh come on, you were all thinking the same thing!!!

Seriously though Silver, it is great to hear you so upbeat!! I hope things continue well for you for an extremely long time, now and after the surgery!!
09-30-2010, 06:46 AM   #30
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I'm quite new to here but just wanted to wish you well in your surgery and I'm glad that your settling in to your new job.you seem like a very positive person and it looks like it rubs off on the rest of us!!!
Nice to meet you shell
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