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Crohn's Disease Forum » Treatment » I knew it, I knew it, I knew it!


 
09-02-2010, 05:31 PM   #1
Crohn's 35
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I knew it, I knew it, I knew it!

Well my requested colonscopy was completed earlier today. Two areas I wanted him to check, and this time I felt the procedure, more than other times, even tho he had drugs in me but not as much, I am assuming and he had an assisstant watching, new gi I guess.

And as I have known for a while my right lower quadrant has more Ulcers spread since my last scope in January. The left side was clear but he says it is a spastic colon. So his answer was... either you take prednisone and keep it at 15mg, and take lots of Calcium, Vitamin D, to make up for thining of the bones from the pred. Or, surgery (number 3) so he told me to get my Gp to get another surgeon or specialist of his or my choice. Because of his retirement coming probably within a year, he gave me first heads up. My GP detest pred so, he will move fast on a referral... I hope.

My husband doesnt know yet, I thought I would tell you guys first , after all you guys are my family too. I was going to go for surgery last year but... I was in limbo of two doctors, trying to see and meet up and send me to either local gi or Toronto bound. I have taken every med available here and none work. Surgery is so scary for me... I better stop here. I ran my dogs when I got home and bawled my eyes out. Just trying to remember way back 18 years ago they were optimistic of a cure... bull. I know I will fight this too but right now I need to just think...Please dont say think positive cause I have been doing that for 20 years and I am still in the same boat.

Sorry, it is amazing what a day makes. Sorry to ramble.. just feel like I need a big hug from my hubby which wont happen til 2 weeks.
09-02-2010, 06:38 PM   #2
MikeinBklyn
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Hugs from Brooklyn Pen.

Good Luck!
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09-02-2010, 06:53 PM   #3
lseibert
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Hi Pen,
It's good to hear that you know what is going on, inside. I hope that the surgery will be the thing that works!! You're lucky you got a heads up about your doctor, mine got hurt and then retired out of the blue I really liked him. But, with a new doctor, I'm learning to like him he's younger and has some new ideas. I'm starting Remicade tomorrow and hoping it works.
you never know what may work for you.....and I sometimes need a good cry too!!
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[SIZE="1"]Crohn's Disease and IBS
Diagnosed: 2001(symptoms for 22 years prior)
Currently on:
Desipramine for IBS, Vicodin for pain
Surgery: Small bowel strictureplasty 02/19/11 and 11/17/11, then a small bowel resection 4/6/12, Hemicolectomy 9/2016
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Multivitamins & Vitamin D3
Prednisone: Never again
Imuran (azathioprine)= Pancreatitis
Entocort EC (Budesonide) and medical adhesives = Rash
Humira=numb feet & hands
09-02-2010, 07:39 PM   #4
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09-02-2010, 07:40 PM   #5
MapleLeafGirl
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Pen - I know it's not the same as a hug from your hubby, but here is a hug from me ... (((hug)))
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09-02-2010, 07:52 PM   #6
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Pen, all I am going to say is you are in my thoughts and sending you a great big hug

I am also sending you hugs and kisses from miss Maddie : kiss:

You are all how we get through each day, and I want you to know that I am here for you as well.
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09-03-2010, 01:30 AM   #7
crazycanuck
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Thoughts and prayers are with you tonight
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09-03-2010, 01:53 AM   #8
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Hi Pen,

I'm glad you made it safely through your prep and procedure. It makes for an exhausting 24-48 hours. I won't tell you to think positive or anything like that. I will tell you that I surely understand your frustration and Its okay to bawl your eyes out. Sometimes that is the only way I can feel true relief. So have at it girl, you deserve it.

Ann
09-03-2010, 02:56 AM   #9
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aw honey, big huggles from me too!

sorry to hear what the outcome was - i guess in your situation i would opt for the surgery, as much as that is a scary prospect for anyone, me included.

the way i see it is, you do have an option there which, after the initial post-op discomfort, will probably give you back a good quality of life, pain free, trouble-free - and for that you have to be grateful. it's worth going through the op to get the results you so badly want and deserve!

i am by your side every step of the way, Pen - and i'm not the only one. your family here will support you and be there for you the whole time - you'll be ok.

xxxx
09-03-2010, 04:40 AM   #10
Dexky
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Penny, I'm sorry you're having to go through this....again!!! We haven't had to cross any surgery bridges yet but I'm sure any surgery is an extremely emotional experience. You are so great on here even when you are hurting so I can't wait to meet you in remission. I hope it gets done quickly!! All the best to you!! See ya around buddy!!
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09-03-2010, 06:08 AM   #11
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Pen
Sorry I wish I was there i'd bear hug you. sometimes you need a good bawlin session. thoughts and prayers are with you
bethy
09-03-2010, 06:33 AM   #12
DustyKat
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Hey Jett,

Lots to think about and get your head around. Sending tons of squishy hugs your way....................................



Thinking of you, always,
Dusty
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09-03-2010, 06:55 AM   #13
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Thank you every one of you! I should be used to it by now, ya know? I call it the pull the rug out from underneath my syndrome. I am going to tell my Gp we are doing it my way, enough is enough. There is Crohn's/Cancer surgeon here, Dr Mapeso, I saw his seminar a year back, and he was so amazing and he is local. He teaches in the North. There is also a fairly new Gi here , probably a long waiting list but I dont care, if I get sent to Toronto, it would be so much harder for not just me but my family and my husband to be there and support means alot to me.

As much as Surgery is probably eminent, I want to do it whilst I am no too old. The older you are the harder and damn it I want a life. My last surgery was botched and never got relief, actually I was worse, so that is why I am taking charge now. My body, my life, and I am sick and tired of this.

So sorry for the rant, you guys know I love to make people laugh but right I am not laughing.


There is a major storm here up to 60mm of rain, and I am on satelite, so if you dont see me you know why.

Thanks again for all your support, just need time...again... thanks for all the hugs and it means so much to me.
09-03-2010, 10:26 AM   #14
Astra
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Dearest Penny

I know we chatted earlier but after reading this post, I'm so upset that you're feeling so blue.
hopefully this surgery will give you a better quality of life.
I will be here too, every step of the way, a shoulder to cry on, vent or to make you laugh when the going gets tough. I won't be going anywhere.
Take time to reflect and gather your thoughts, there is a lot going on in your head right now. Have a minute away from the forum, spend time focussing on you hun, we'll be ok.
love you tons, Pen!
Cya later
xxxxxxxxxx
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Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery




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No-one should make you feel inferior without your consent!

09-03-2010, 05:01 PM   #15
dreamintwilight
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Sorry I'm a little late reading this thread.

Sorry to hear the results of your scope, Pen! Just know we are here for you no matter what happens.

Wishing you all the best!
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February 2010 - diagnosed with Crohn's disease.
January 2011 - Inflammation downgraded from moderate-severe to mild with no symptoms!
January 2014 - adopted a mostly Paleo diet
May 2015 - still in remission!


Currently Taking
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Imuran - 125 mg/day
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09-03-2010, 05:20 PM   #16
Crohn's 35
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Joanie Kiddo, I am so glad you have been there for me countless times, and you have been such a great asset to the forum! You never judge me or suppress my feelings. You are an Angel in disguise!!

Marisa: you are an amazing person who has been there for everyone, and very supportive. So glad you are here, and thanks for being there!

I called my Gp a couple of hours ago and they have an appt for me next Thursday morning to get moving quick on a referral. He suggested Toronto (which I have seen one specialist Dr Greenberg Mount Sinai, back then he said surgery was coming eventually.) Not sure I can get him or another or in Hamilton I will post about that appt then.

Last edited by Crohn's 35; 09-03-2010 at 05:23 PM.
09-03-2010, 08:24 PM   #17
Lucy
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Wow I'm so sorry to hear about your results. I am glad to hear you're going to do it your way. Your really the best. I love reading your post. I know I'm still new here, but I feel like you and many others are true friends on this forum. I feel like we are all family too. I'm here to listen and talk to you anytime. I haven't had any surgery so far, but I can only imagine how hard this must be for you. I wish you only the best and please let us know how the appt. goes next week. Hope your husband is home soon. Hugs from Texas.
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09-03-2010, 09:55 PM   #18
D Bergy
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Sorry to hear about the worsening condition. That is not what anyone wants to hear.

I hope your specialist is able to help more.

I wonder what they mean by "ulcers"? I am not sure how literal to take that term. Ulcers are usually caused by H-pylori, but I suppose any ulceration is an ulcer no matter what the cause.

Best wishes

Dan
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09-03-2010, 10:01 PM   #19
Crohn's 35
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All I know is they are white and pus looking, was a cobblestone affect but now longer and bigger. I briefly saw the photo but I wasnt wearing my reading glasses, and it doesnt surprise me, with all the discomfort I have had lately.
09-05-2010, 05:44 AM   #20
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Best of luck Pen...I hope everything goes the way you want it to go and you get the outcome that works best for you and your health.

Take care ...
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Diagnosed:
May 2010 Crohn's
(Symptoms for years, just hoped they'd go away!)
Medications:
* Prednisone 12.5mg
* Imuran 175mg
Supplements:
* Vitamin D
* Multivitamin
* Fish Oil
09-09-2010, 01:23 PM   #21
Crohn's 35
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Well I literally just got back, from the Gp. I told him what my outcome of my colonoscopy was last week and that the ulcers are worse. He asked what meds I am on now and I told him as requested by my gi 15mg pred. Well he told me again and I KNOW.. he really doesn't like Pred, so neither to I!!! My Gi says I am his only one on Pred for longer term.

Anyways... I asked for another local Gi and I want the best surgeon here and told him who I would like and that he is an amazing surgeon.

So he says he has to copy all the files and send them to the new Gi. I have no idea when I will get an appt, but I am sure it shouldnt take long. I also got blood work done for perimenapause.

Next week I see him again for the results and b12 shot and another test, for women tmi lol.

So the waiting begins. Since I know Pred is bad I do have Entocort and lots of it, but dont think it will work, cause if it did I wouldnt have all these ulcers.

And... I have terrible gas right now, bloating and bit of pain, which my Gp reminded me of the spastic colon... I know.

Thanks for all your support guys, now I have to wait! Should have a betting pool how long it takes
09-09-2010, 02:54 PM   #22
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Pen, so sorry to hear about all of this. I can't imagine what you are going through, it must be so frustrating. And scary. You're a tough (and smart) cookie, and I'm sure you will come through. Just hang on a bit longer, your hubby must be coming home soon. Until then... Warmest hugs to you.
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09-09-2010, 03:19 PM   #23
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09-09-2010, 04:00 PM   #24
Astra
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Hey Pen!
I know we've just had a right old gab on MSN but I'm thinking of you all the time, hoping you're gonna be ok, wishing I was there to hug you.
and listen everybody!
we've just decided that hugs stop diarrhea! It's official!
And our Queenie will be getting these in shedloads come Saturday!
love ya Pen xxxxx rest now, and chill xxxxxx
09-09-2010, 04:57 PM   #25
DustyKat
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Awww Jett I'm so sorry to hear this. We will all be waiting with you and thinking about you. Sending tons of hugs and well wishes your way.........................



MATE!

Dusty.
09-09-2010, 05:11 PM   #26
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Pen, so sorry to hear about all of this. I can't imagine what you are going through, it must be so frustrating. And scary. You're a tough (and smart) cookie, and I'm sure you will come through. Just hang on a bit longer, your hubby must be coming home soon. Until then... Warmest hugs to you.
Thanks Sharon, sometimes I wonder where I get my strength from and yes it is frustrating but at least my gp said, "I know it is not your fault". He has colon cancer and 3 bouts so he will do something for me I am sure. Thanks for the hugs, I really need them at the moment. He is home Tuesday yay!
09-09-2010, 05:11 PM   #27
MisB
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Hi Pen, I am so sorry you are having to go through this. I can honestly say I know how you feel, which is new to me. You are strong enough to get through this, just one day at a time. I just pray you don't have all the extra drama with yours that I had with mine. And you shouldn't. What a fluke to develop blood clots and cancer and have them discovered from a crohn's flare? I'm assuming you are in general good health, so it will make the recovery easier. My prayers are with you and if you need a shoulder, let me know. We can get a few boxes of tissues and cry our little hearts out. And then, in a few months, we'll be able to celebrate. Please keep us posted and . Sending lots of love, Beverly


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Surgery 8-2010 removed ileum, appendix, 1.5 ft of colon, 21 lymph nodes and a 5 cm tumor. All lymph nodes tested positive for cancer.

Conclusion: Crohn's is in remission, start chemo for cancer end of Sept, or beginning of Oct.

All my meds are pertaining to surgery healing and stress.

09-09-2010, 05:12 PM   #28
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All I can offer is prayer. <3
Thank you Shannon, I have a few Shannons in my life and they are all so awesome as a friend, you are a newbie here and that is a special thing to do.
09-09-2010, 05:14 PM   #29
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Hey Pen!
I know we've just had a right old gab on MSN but I'm thinking of you all the time, hoping you're gonna be ok, wishing I was there to hug you.
and listen everybody!
we've just decided that hugs stop diarrhea! It's official!
And our Queenie will be getting these in shedloads come Saturday!
love ya Pen xxxxx rest now, and chill xxxxxx
Thank you kiddo! You have been there for me so much and I will get some hugs from my daughter Saturday and then Tuesday! to get rid of the D luvs ya xxx
09-09-2010, 05:16 PM   #30
Crohn's 35
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Awww Jett I'm so sorry to hear this. We will all be waiting with you and thinking about you. Sending tons of hugs and well wishes your way.........................



MATE!

Dusty.
You have been so amazing to so many, and you support everyone and welcome everyone, you are a truly a gift to this forum and I will take all the hugs right now!
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