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07-17-2010, 07:37 AM   #1
Crohn's 35
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I am stuck in limbo...

Well, I had my doctor appt yesterday for my B12 shot and in the meantime I was supposed to tell my Gp also (Gi's request) to refer me to another Gi as my current one is retiring soon and gave me a head start to start looking because I am a tough case.

He will discuss it with my Gi, who is on holidays at the moment, and he isnt sure if there are any Gi's left in the area, that are not either booked up or good enough for me to see. He thinks it maybe worth my while to go to Toronto every 6 months to see a specialist. I did see a Dr Greenberg in Mount Sinai hospital for a barium follow thru and a scope up the butt, and says surgery is down the road. My current Gi says he didnt think my present condition warranted a 3rd resection.

Anyways to cut this thread down very short. I am in limbo waiting for a specialist somewhere, and in the meantime I still have a Gi appt in late Sept to see him.

I just got off Metho about a month ago, winging it for now but the flares are getting worse everyday. So it must of been working somewhat but I was still having bad pains from it.

So, I am at a loss for now as to what to do. I really have to concentrate on me, so if I am not on as much to welcome and help you or support you, doesn't mean I dont care, cause you guys know better. I am worried for the first time in ages. Cimzia still isnt here, which sucks.

Hope you all help each other, ok.

Last edited by Crohn's 35; 07-17-2010 at 07:50 AM. Reason: Please delete, ugh too early in the morning!
07-17-2010, 07:48 AM   #2
soupdragon69
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Hey Penny sorry to hear you are having such a tough time honey.

I havent been around much for similar reasons and am due back to my gastro Tuesday week coming.

Sorry to hear the Metho didnt work out. Its such a tough journey at times and I totally understand how you are feeling.

You know where I am if you want to catch up at any point.

Thinking of you ((hugs))
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Brittle asthma 1996, Hypothyroidism 1998, Severe Crohns ileitis 2006 , Severe IBS 2007, Inflammatory/Rheumatoid Arthritis 2008, Sebhorreic Eczema and Folliculitis 1992, Roseca, steroid induced acne and Hidradenitis Suppurativa 2008, Multiple allergies and food intolerances diagnosed from 2003. Newly diagnosed fibromyalgia Dec 2009. Newly diagnosed calcific tendonitis Jan 2010. Chronic Pain diagnosed Dec 2010.
07-17-2010, 08:13 AM   #3
MapleLeafGirl
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Penny - I will be thinking of you and hoping you get some answers soon. It might be worth it to go to Toronto every six months. I know it is a long way to go, but you could make a little vacation of it and plan it for times when your husband can go with you. I am thinking of you and wishing you all of the best!
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07-17-2010, 08:39 AM   #4
Crohn's 35
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Jan: Wow, so nice to see you. Thanks for your support, you are missed her more than you know! Are we Mrs yet?

Kelly: Thank you for your support, you have been a kind person to me. We have an Intl airport here and Porter flies direct to Toronto Island 3 times a day, so yes it is but I dont want surgery down there. There is an amazing surgeon in Thunder bay Dr Mapeso, and is top in his field. The Canadian system is a great help but you know the drill... the waiting times are very long. Just hope I can get out of this flare creeping on me quickly! Please keep in touch ok. Hugs.
07-17-2010, 09:57 AM   #5
soupdragon69
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Won't be Mrs until Friday 24th September lol

Not sure about the missed thing but I appreciate your thoughts! Hang in there hun xx
07-17-2010, 01:23 PM   #6
belle1999
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Oh, Pen. It looks like you could use lots of hugs right now. I'll be thinking about you and hoping it gets sorted out for you soon.
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07-17-2010, 01:25 PM   #7
Entchen
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Dear Penny, what a tough time to be looking for a new GI, just when you need extra care. Here's your favourite message, sent sincerely:
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Turned my Crohn's life around: ginger for nausea.
Claim to fame: "loopy and floppy" colon
07-17-2010, 02:01 PM   #8
GoJohnnyGo
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Hey Penny,

I feel so bad for you.

Is there any way you could sign on for a clinical trial of Cimzia? Seems like you'd be a good candidate seeing other avenues have been exhausted. I heard the University of Western Ontario was conducting them.
07-17-2010, 04:35 PM   #9
InkyStinky
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Aw Pen, I'm soooooooo sorry to hear this. I wish you didn't have the stress of trying to find another GI in the midst of none of the meds working for you -- stress is that last thing you need right now. ((((hugs)))) I'll be praying for you.
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IBD diagnosed 1990 @ 8yrs old (current dx: Crohn’s); Blood clots 12/2009 (DVT, bilateral PE)
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-Are you looking for a new treatment option for your Crohn's disease? If so, I suggest you look into the ongoing clinical trial by Qu Biologics for their SSI treatment. Click here for more information or to help spread the word.
07-17-2010, 05:18 PM   #10
ChefShazzy
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Pen, I'm so sorry to hear things aren't going so well. I hope they can find someone good enough, and close enough for you! Take care of #1!!
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07-17-2010, 05:38 PM   #11
Crohn's 35
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Hey Penny,

I feel so bad for you.

Is there any way you could sign on for a clinical trial of Cimzia? Seems like you'd be a good candidate seeing other avenues have been exhausted. I heard the University of Western Ontario was conducting them.
Thanks Ed, my doctor tried but it is no longer in this area. So now I have to wait and get a Gi, and see what they can do.
07-17-2010, 05:42 PM   #12
Crohn's 35
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Sabrina: I am so glad you are back, I really missed you, your humour and support was missed. Hope you stick around.

Sharon: Thanks, it means alot for support. I just don't want to end up in ER. So I am doing what I can in the meantime.

Kelly: I am trying, and I am also nursing my knee, and a cold sore, second one this week! I have good stuff for it ,so all is well for that. You are a good person!
07-17-2010, 05:43 PM   #13
Crohn's 35
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Belle: I have grown to know you more and more and you are a wonderful asset to the forum and you are a Belle!
07-17-2010, 06:13 PM   #14
dreamintwilight
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Gosh...being in limbo sucks! I think I'd go nutso if I were you (I'm a worrier!). I really hope you can find someone soon so you don't get any worse. I have faith things will work out for you though! You are one tough cookie.
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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
Calcium magnesium citrate
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07-17-2010, 06:27 PM   #15
DustyKat
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Hey Jett,

You are right, you do need to focus all your attention on yourself and concentrate on doing the very best you can for you. Is there no way within your system to be seen as an urgent patient without going to hospital? Is it not possible for your current GI to liaise directly with another GI he thinks is suitable?

I'm so sorry I can't be of any help to you Jett but I will be thinking about you and you will be in my prayers.

I'm sending you MEGA HEALING ((((((THOUGHTS)))))) AND ((((((HUGS)))))) and I hope you catch them real soon!


Thinking about you Jett,
Dusty
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07-17-2010, 06:46 PM   #16
suzielouwhoo
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i have heard that dr. silverburg at mt. sinai is really good and i am waiting to get in myself. i hope you get some answers and new ideas soon. much love and positive energy being sent your way right now. keep breathing deeply.
07-17-2010, 07:28 PM   #17
ameslouise
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Pen, like everyone else, I am sad to hear you are not doing well and having to find a new doc too. You are sweet to worry about US at this time!

I know you have tried just about every drug out there - I hope you can get the Cimzia and it works for you. Is LDN on the list of drugs you have tried?

Be strong. And if you can't be strong, we're here for you!

xo -Amy
07-17-2010, 11:58 PM   #18
D Bergy
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I hope you find an excellent Specialist. If you can't find a proper treatment, just find your own, as I often do. They often enough work as well or better than anything the doctor has.

I hope you are not gone too long. I miss you already. It is almost like you are half way around the world from me?

Dan
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07-18-2010, 12:05 AM   #19
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aw Pen i'm really sorry to hear about how the Crohn's is behaving right now, and that you're losing your GI too!!! it really sucks when someone you've come to know and trust, and more importantly - they know you - disappears.

i hope you find someone just as good to replace him, and who'll guide you back to better health.

don't worry about not being able to spend time on here - this forum is your 2nd home, and will be here for you whenever you want... (((((BIG HUGS)))) Penny. xxxx
07-18-2010, 12:15 AM   #20
MisB
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Pen - I'm so sorry you are having a rough time. I know how important a good doctor can be and having to change one can be traumatic to say the least. And to have to do it while enduring flares. My prayers are with you that something works out soon. Don't worry about us. Take care of yourself, remember we're here for you, and please keep us posted.



and finding a new doc
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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.

07-18-2010, 08:01 AM   #21
Crohn's 35
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Hey Jett,

You are right, you do need to focus all your attention on yourself and concentrate on doing the very best you can for you. Is there no way within your system to be seen as an urgent patient without going to hospital? Is it not possible for your current GI to liaise directly with another GI he thinks is suitable?


Thinking about you Jett,
Dusty
Hi Dusty, thanks for the hugs and well wishes. We have a "political" system up here, and I can see a walk in doctor from my GI's and GP's clinic if I don't go to the hospital but at the hospital I would get faster care. My Gi was the one who got me Dr Greenberg, head of gastroenology in Mount Sinai, but now he is having a hard time getting in touch with him. He was trying to get compassionate use from his clinic. Then thru time the clinical trials were gone, according to him.dunno. I just have to wait for my Gp (who has colon cancer himself and has been on leave at times) to talk to my Gi who is on holidays. He golfs but now that my knee is buggered up too, I will never run into him. Kidding. thanks again you. Hugs back!
07-18-2010, 08:12 AM   #22
Crohn's 35
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Pen, like everyone else, I am sad to hear you are not doing well and having to find a new doc too. You are sweet to worry about US at this time!

I know you have tried just about every drug out there - I hope you can get the Cimzia and it works for you. Is LDN on the list of drugs you have tried?

Be strong. And if you can't be strong, we're here for you!

xo -Amy
Thanks Amy, so sweet of you. Believe it or not my current Gi is pretty open minded and he was just going to write a script for LDN but he decided against it because I was in unstable condition at the time. Plus Cimzia was in compassionate use but did Humira instead. Being I still have my woman days,my pains were too intense and I need T3's to keep the pain down. I am not giving up on it, just have to wait. Thanks for the thought.

Marisa: I am a worrier but rarely for my self, I know it sounds dumb but, I have symptoms since I was 15 and dx in 1993 so that is many years of being used to pain. I thank you for your thoughts.

Susielu : I hope you get in to see your Dr, I am sure he is a colleage of Dr Greenbergs, or family lol. I dont mind every 6 months to go to Toronto but my Gp doesnt get it and wont give me pain management pills, he knows I dont use them much but I need someone I can get in contact with, my Gp will never undermind what my Gi says. I still have to wait til Sept to see my current Gi, but he is slowly getting rid of patients. Ugh. thank you for being here!

MisB: You have enough on your plate!!! I am not near as bad as your are in the pain. I am going day by day, and coping with the little more pain than usual. Damn back knee aint helping . You look after you ok? That will make me feel better!
07-18-2010, 08:18 AM   #23
Crohn's 35
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I hope you find an excellent Specialist. If you can't find a proper treatment, just find your own, as I often do. They often enough work as well or better than anything the doctor has.

I hope you are not gone too long. I miss you already. It is almost like you are half way around the world from me?

Dan
Awe, thanks Dan! You surprise me the most!!! Minnisota is just over our border! But yes, I know what I can do, even my Gp asked why I take Cipro... right now I am going from a few days of Cipro and wait a bit then Flagyl and taking VSL (when I remember) and the Olive leaf extract and 3000mg of Pentasa. Just also finished Entocort, it was doing a number on my muscles, and that scared me. I told him the sides I get from Flagyl, even after just one pill. I don't have any options right now, I have a cupboard full of meds, that have been useless.

You ever want to venture just over the border of Canada bring the wife and a huge basket, tons of apples coming .

Thanks again for your support.
07-18-2010, 08:21 AM   #24
Crohn's 35
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aw Pen i'm really sorry to hear about how the Crohn's is behaving right now, and that you're losing your GI too!!! it really sucks when someone you've come to know and trust, and more importantly - they know you - disappears.

i hope you find someone just as good to replace him, and who'll guide you back to better health.

don't worry about not being able to spend time on here - this forum is your 2nd home, and will be here for you whenever you want... (((((BIG HUGS)))) Penny. xxxx


Sue, you have been so supportive of me, and I thank you. I didn't tell you cause it was your birthday so I left you alone. Hope you had a wonderful day. I even missed our CCFC meeting, because Winnipeg and Thunderbay were amalgamating, and we were getting new supervisors... I miss everything!

Heart concert is on Tues, and I am NOT missing it, that is one of the reasons I am trying so hard... if T3's are needed so be it. Hobbling on my cane and all, boy feeling 90 sucks eh? Happy Birthday, how does it feel to be 29 again?
07-18-2010, 10:05 AM   #25
Walt
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Hi Pen,
I hope you don't spend too much time in Limbo.
I find it draining to be neither-here-nor-there.

We all know that you spend a ton of time and energy being supportive of others here...
please spend some on yourself in this difficult time.

I hope you get to see your front-row Heart show.
And moreso, I hope you get some answers and relief too!

thinking of you,
and sending warm hugs
Walt

ps I was amused to see you mentioned Metho might have been helping somewhat...
it's still an unknown for me too,
but I persist with it despite how the downsides affect me.
'any port in a storm'?!?
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currently 'enjoying' Metho, Remi gave me Lupus, Humira pens now weekly - jury still out?
whew, just a little Prednisone?

I'm starting to think Crohn's isn't as much fun as they made it sound in the brochure?

Be who you are and say what you feel,
because those who mind don't matter and those who matter don't mind - Dr. Seuss

A hard road is better than no road.

getting knocked down is nothing.
bouncing back is everything.


in the end, only kindness matters...
07-18-2010, 10:09 AM   #26
Astra
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Hey my friend I'm back!
sorry I missed this thread, been away all weekend.
any hoo, you know I'm at the other end of MSN 24/7 for you, and the phone of course!
wish I could be there in Thunder Bay to hug you!
Love you lots
xxx
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Dx Crohn's in TI 2005 symptoms for 15 years prior

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




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07-18-2010, 10:32 AM   #27
Crohn's 35
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Hey you! Joan, thank you so much for your support as always! I forgot you were busy!

Don't worry I am gonna win the 50million and I will have you guys here! LOL.

Better yet have a Crohnie reunion. That would be a dream come true!

You are a sweetie .

I am hanging in there.
07-18-2010, 11:18 AM   #28
Gue33
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Oh man!!!
Pen I hope you find another GI that can work for you! Being without help it no fun at all. I can empathize with your situation. All a person can do is try and work on their own, until help can be found. Your a survivor, keep your back up. I am rooting for you.
07-18-2010, 03:01 PM   #29
Jerman
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Oh Pen, my dear friend, I am sorry you are having to deal with any of this, you are a tremendous person and I will miss you a lot so heal fast and come back when you are able. ***I am sending you a PM please review as soon as you are able. I will be sending along lots of strength and hugs-good luck my friend.

Jer
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07-18-2010, 03:23 PM   #30
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Sue, you have been so supportive of me, and I thank you. I didn't tell you cause it was your birthday so I left you alone. Hope you had a wonderful day. I even missed our CCFC meeting, because Winnipeg and Thunderbay were amalgamating, and we were getting new supervisors... I miss everything!

Heart concert is on Tues, and I am NOT missing it, that is one of the reasons I am trying so hard... if T3's are needed so be it. Hobbling on my cane and all, boy feeling 90 sucks eh? Happy Birthday, how does it feel to be 29 again?
you are such a brave person, Pen - i can only aspire to be half as brave and hold my head as high as you do in the face of pain and uncertainty.

you didn't need to hold back telling me anything coz it was my birthday - i am here for you guys, whatever day it is!

and yeah i know how feeling 90 sucks... thats how i feel most mornings until at least 11.30am
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