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I am stuck in limbo...

Crohn's 35

Inactive Account
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. :wink:
 
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soupdragon69

ele mental leprechaun
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))
 
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!
 

Crohn's 35

Inactive Account
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.
 

soupdragon69

ele mental leprechaun
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
 
:hug: 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.
 

Entchen

Chief Dandelion Picker
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: :hang:
 

GoJohnnyGo

One Badass Dude
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.
 
Location
USA
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.
 
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!!
 

Crohn's 35

Inactive Account
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.
 

Crohn's 35

Inactive Account
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 :hang: 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! ;)
 
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.
 

DustyKat

Super Moderator
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!
:hug::ghug::hug::ghug::hug::ghug::hug:

Thinking about you Jett, :getwell:
Dusty
 
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.
 

ameslouise

Moderator
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
 
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?:goodluck:

Dan
 
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
 
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.

:hang::hang::getwell::hang::hang:

and :goodluck: finding a new doc
 

Crohn's 35

Inactive Account
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, :getwell:
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. :yrolleyes: Kidding. thanks again you. Hugs back!
 

Crohn's 35

Inactive Account
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 :devil:. You look after you ok? That will make me feel better!
 

Crohn's 35

Inactive Account
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?:goodluck:

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 :tongue:.

Thanks again for your support.
 

Crohn's 35

Inactive Account
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? :ycool:
 
Location
Canada
just a little more rocky road...

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'?!?
 

Astra

Moderator
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
 

Crohn's 35

Inactive Account
Hey you! Joan, thank you so much for your support as always! I forgot you were busy! :kello:

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 :hug:.

I am hanging in there. :ysmile:
 
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.
 
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
 
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? :ycool:
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 :D
 

Nyx

Moderator
Sorry to hear this Penny! Have you thought of coming to Barrie for treatment? I even have a place for you and your hubby to stay if you need it. My GI is fantastic, and taking patients (I think...I could ask on Friday...go for my scope then...).

Let me know...if she's not taking patients, I know the office of 3 other GI's she works in are taking patients.

Take care!!!
 
Pen, hoping you feel better soon and hoping that you'll find a great GI doc as well.

Keep your chin up and good thoughts in mind!

Best Wishes,
Mike
 
Hey Pen, I've been quiet for a while too. I'm sorry you're not doing well! I really hope you manage to find a new doc that you like and some meds that will help.
Thinking about you.
Sam
 

Crohn's 35

Inactive Account
Thanks again for all your support and I have had alot of well wishers, this is how things stand at the moment. I have an appt on Thursday morning with my reg GP, he will NOT give me anything my Gi would not write, howevery my Gi is still on holidays til August! So I thought I had alot of Prednisone left and stupid pharmacies will stop refills after a year! Well I was on Metho for 5 months of this time and my Gi knows that Pred works for me. So now I have to get my Gp to write a script for Pred incase my Crohns gets way out of hand but I need to have it incase.

I am on Flagyl one a day and Cipro and Pentasa, and the odd tylenol 3, only half. The one tablet from flagyl is affecting me already. I have tons of Entocort, but I get fewer sides from it but not as good as Pred. I wont start on 40mg maybe more like 30mg or 25mg. Just want to keep it at bay. Which means I will be back on Nexium. All bone eaters!

So, my husband and myself are gathering alot of information on LDN. It may work it may not , but I have no options left and a 3rd surgery will cause me so much pain and may come back faster because it has learned to mutate.

Meds hate my body and so do I LOL. My knee is another problem,going to see my gp about seeing a specialist, another long wait and his hospital is 4 hours away. Right now my husband is on holidays and has no more time off til next year. He is 2 weeks in and two weeks out, and 2 dogs and a cat, I cant just up and leave. My daughter is in University, and doesnt drive (let her licence go ugh) my mom is 10 hours away and is turning 75. Only have one friend I can count on where I live so I have to fight for myself, and get this under control. Havent had a couple weeks relief since my last surgery 2003. Yes, it takes it toll on me but with everyone's support here, it does help.

Heading for menopause soon too, God willing!

Going to see my concert tonight, even if I have to take something for pain , which is not high, just aggrivating. Been waiting since wintertime to see this.

Thank you all for your support. Nyx, when I run out of options, I will contact you, thanks for thinking of me. Just dont have a lot of energy and with my knee and walking with a cane, my positive (everyone knows I hate that word lol) outlook is gloomy,so I have to myself up again.

You guys are the best, sorry this is long but it will explain alot!

I will keep you posted, great job helping newbies, you guys are awesome!

Hugs, Pen
 
Flagyl.......the worst med in the world (to me). It made me more ill than I was with Crohn's.

Flagyl will sap your strength.

Good Luck
 
Your not stuck in Limbo if you know your in it(sorry Inception insider). So keep your head up and keep on trucking I'm sure everything will work out.
 

Astra

Moderator
Hiya Penny

I know you know this, but for everyone else, Pred is the best option for you right now, it will keep you stable til August, I know you hate it with a passion, but it's just for a little while
I'm here for you everyday on MSN, you're not alone! no need to be so brave! you just gotta ride this storm, and it will be over soon!
love you
xxx
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Hey Penny, sorry I missed this. I talked to you pm so I knew something was going on. You know I'm on your list of supporters and am always available to listen. Hope you're better soon.
 

Crohn's 35

Inactive Account
Flagyl.......the worst med in the world (to me). It made me more ill than I was with Crohn's.

Flagyl will sap your strength.

Good Luck
Thanks Mike, Flagyl doesn't zap my energy because I never take high doses anymore. It is the only drug out of all the drugs than can actually get rid of my flares. Hope you are well.
 

Crohn's 35

Inactive Account
My update: firstly on the way to the concert (left early story on that in a minute) I got an updated appt in August from my current Gi!! A month early! Now you know why I really hate to see him go , but 50 years practicing is a long time!

We went to town did some running around and OMG I forgot the concert tickets!! We are 45 min away from home! And the concert starts at 7pm... make a mad dash back home and on the way home we grabbed McDonalds...yeah I know but we intented to go to Swiss chalet so we were both hungry. We get the tickets, and rush back and I am thinking why is this place so empty. Concert didnt start til 8pm! LOL, hour and a half early. Oh well ...good parking spot lol.

The concert was very impressive! My hubby really enjoyed it too! And, no repercussions of Mc d's.... Gosh, my brain isnt on track (worse than usual lol).

The rest of you,:mademyday: coming on here and seeing great support! I believe what you put out, comes back 10 fold. Because you all know how little things are a big deal to a Crohnie.

I am not feeling too bad actually, but only 2 flagyl and my right arch on my foot is numb again. So I am researching the LDN and MMS info that Dan sent me, and going to check it out. My current gi will do anything I ask, lucky there.

Big hugs :hug: to you all, and hope you are all well! Your support has kept me going.....:ysmile:
 

DustyKat

Super Moderator
That's brilliant Jett. I'm so happy for you that you got an earlier appointment YAY!!! and the concert was a hit YAY!!! and even the macca's behaved itself YAY!!!

:banana::banana::banana::banana::banana::banana:

Lots and lots and lots of well wishes and hugs!

:hug::hug::hug::hug::hug::hug::hug:

Take care,
Dusty
 
Location
USA
We get the tickets, and rush back and I am thinking why is this place so empty. Concert didnt start til 8pm! LOL, hour and a half early. Oh well ...good parking spot lol.
Hey Pen! This so made me laugh - it's exactly something I can see myself doing! But hey, the important thing is that you didn't get stressed out looking for a place to park. :ybiggrin:

I'm so glad that your appt is next month - I'll be praying that between now and then your Crohn's stays at the bearable level. Here's a hug from me, too :hug:
 

Crohn's 35

Inactive Account
Update from GP today.

I went to see the regular family GP and he gave me a short term and fast taper Prednisone. Since my GI is still on holidays, he was so reluctant to give them too me. Getting anything from that man is like pulling teeth.

He still says to me and my hubby I am better off seeing a teaching doctor in Toronto or Hamilton. So when my GI gets back he will go downstairs and figure out who I should see and where. Both my Gi and GP are fully aware I am a tough case. Ha, even my husband as the GP if he can get me a new body lol:wink:... yeah I wish, would of done that ages ago lol.

Also my main thing was getting some answers as to what to do on my knee or muscles, he says he doubts I will need a knee replacment. So he sent me for xrays to see if the osteo has set in or made worse. He wants my prior laproscopic surgeries on my knee records, heck ...that was another town, and I cant remember what doctor I had for both, or my last name at the time. :ywow:

So still the waiting game. Using a cane but my lower back is sore from not being able to walk. I have crutches and I may start using them for longer distance. Also he gave me exercises to do, he has given me so many times prior and to go back to my physiotherapist.

Btw all these appts are a minimum of 45 min away :boring:.

My Crohns is at a minimum pain not taking pain meds til I need them and if it gets out of control it will be PRED time, till I see my GI.

Thats it for now...stay tuned for as the intestines turn :D
 
You are a very popular person here, no doubt. Well liked and appreciated too. I seen your post and felt like I had to say something...I dunno if your a spiritual person...but either way hope is something we must hang onto. For me hope comes thru faith. Faith comes from my love of God. Nothing is by chance and everything is for a reason. There are no coincidences in life and that being said...you might be having to get another doctor because thats what you neeeeed.
I feel like more doctors should work from the perspective of a hope driven prognosis. For without hope where would we be. And I've heard so many doctors say that without a positive outlook most patients gave up. When I had cancer, mine told me that my hope and outlook is what saved me. I didn't do traditional therapy... I refused. I did B12 shots, herbs, and others...but no hardcore Chemo. AND HERE I AM! Survived 2 kinds of cancer. So, HOPE is tremendously helpful and a must have in any health diagnosis....and in general...in LIFE!
 
Glad you're feeling better Jettalady, hope your appointment is good, it's excellent that it's been brought forward for you! Best of luck! :)
 

Crohn's 35

Inactive Account
Update

Thanks for all you wonderful people who have been great support to me, it really means a lot!!

My mom is here for visit but I wasn't expecting it and am ill again...

I am having LLQ and RLQ pains and feels swollen and pain. Taking Flagyl and Cipro, and mostly ensure or mushy food. I have a short taper pred from my Gi and I think I am going to have to start taking it tomorrow morning.

Still waiting for the Gi referral I see my Gp for that and xrays of my knee. My Gi appt is the 23rd so it is a waiting game...have no idea what to expect and the flare is scaring me cause the left side is almost worse than the right. So I still not on here as much for you guys and I am feeling guilty. Sorry I cant be there much and my hubby isnt back til the following Thursday.

Thanks for reading, and or caring. :smile:
 

Crohn's 35

Inactive Account
Thanks Kelly , I was trying to avoid medications and maybe I did this to myself, I dunno, just wearing me down. Your support means alot!
 

DustyKat

Super Moderator
Hi Jett, :bigwave:

Awwwwww........so sorry to hear that you are unwell, that sucks. :( If you start taking the Pred I so hope it works for you..................


:getwell::getwell::getwell:


Take care of yourself and don't worry about us 'cause we ain't goin' nowhere! and there's no need to apologise!!!! :nonono:


Thinking about you Jett, :hug::hug::hug::hug::hug::hug:
Dusty
 
Hi Pen

I just wanted to let you know that I am thinking of you. Good luck with finding a new GI and some relief from your knee and chrons.

While you may not be able to get out and play golf maybe you could sit back and enjoy some of the tournaments on the tv, it may be something enjoyable to do while you work through your current issues. I think there is an Open starting soon - or something like that in the States. I like watching the golf even if I do not have much energy I like to appreciate the energy of others.

I'm sending good vibes your way, take care of yourself and thank you for all your support.:hug:
 

Crohn's 35

Inactive Account
Thanks DustyKat and Aura, going to call the Gi today and get a colonoscopy appt asap. I know my left side is pretty bad, didnt sleep all that well and I know going on Pred again is gonna be crappy but I have had this disease a long time!

Big hugs to you both. It truly means alot!!!!!!!!!!!!!!;)
 
Hi Pen, hate to hear that you are not well. You have been very kind and supportive of me and many others and are a wonderful person. I hope that this flare passes and that you are pain free soon. :hug::goodluck::getwell:
 

Astra

Moderator
Hey Penny

I know we spoke this morning, but thinking of you, hope you've had some relief today, hopefully the Pred will give you some calmness til you see GI
Please keep smiling
love ya xxxxxx
 

Crohn's 35

Inactive Account
Thank you all, you all mean alot to me, still hurting...got out today for a spell.

I called my Gi office and he is still on holidays. Til next week, and he will be so backed up, but at least I see my Gp on the 19th. Just being careful what I eat. Hopefully the pred will work!


Dallies I love Dragon flies!!!! They are my fave! :wub:

Inky stink I know you are ok,I wont have you beheaded :queen: LOL

I needed the smile.... the only good thing is not only did my daughter get the Presidents list but she just got the Dean's list too!! Top 1%! It has helped me fight! She wants to be a nurosurgeon... Cant be that!


:ghug: to you all, and Joan, I would be lost without you. Jerman hang in there. I am behind on emails and chats, just dont feel good but this too shall pass!

Luv all of ya!!!!!!:hug:
 
Hi Pen,

Im so sorry you are left in limbo at present.. nothing worse then being so sick and nothing that can be done esp as your doctors are off having a great old time on holidays. I really hope the Pred at least helps a little bit to relieve your symptoms and pain.

Sending you all my love and well wishes that you start to feel at least half human again... hoping you can get this sorted soon as you have been thru way too much!!

All the best Honey :eek:)
 
Praying for you: that the pain goes away soon and that you'll be set up with the most wonderful GI.

Keep your chin up. Crohn's is tough but you're so much tougher!! :hang:
 

Crohn's 35

Inactive Account
Thanks Shoesies, just started getting bloat a bit, still hurting a bit, but coping. Thanks for your support!!! You too are a strong Crohnie, hope you are getting better too! Hugs!
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Hey Penny, I guess it's been nice having your mom there during much of this flare. I hope things settle soon and you get some relief. Hopefully, the GI on Thurs. will have some answers. Did you ever make a decision on the LDN?
 

Crohn's 35

Inactive Account
Hey Dexky... having my mom here was stressful a bit, I wasn't expecting her and flaring is not fun and you are limited. She has a tendency to take over and I needed down time.

As for the LDN, I havent had much time to think about it because my mother was here and didnt do much research but the next few days I will be. The problem is you can't go on it if you are in pain because it blocks opiates, and the pain I have I would be miserable without something if it comes up. So LDN is my last resort, not even sure my GI will prescribe it. My hubby will be home and he will help me get back on track with the doctor and decisions.

Trying to get better because I have a surprise 75th bd party for my mom on the 28th, but travelling 26th and it is a 12 hour drive :thumbdown: All I can do is go day by day. Sorry, this was kinda a vent too. :shifty-t:
 

DustyKat

Super Moderator
Whoa, you've got a lot going on Jett. I hope things start to turn around for you once the stress levels decrease but that sounds a time away yet. As you say best to take each day as it comes, no expectations. Sending you loads of hugs........................................


:hug::ghug::hug::ghug::hug::ghug::hug::ghug::hug::ghug::hug::ghug::hug:


Thinking about you, :)
Dusty
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Hey Dexky... having my mom here was stressful a bit, I wasn't expecting her and flaring is not fun and you are limited. She has a tendency to take over and I needed down time.

As for the LDN, I havent had much time to think about it because my mother was here and didnt do much research but the next few days I will be. The problem is you can't go on it if you are in pain because it blocks opiates, and the pain I have I would be miserable without something if it comes up. So LDN is my last resort, not even sure my GI will prescribe it. My hubby will be home and he will help me get back on track with the doctor and decisions.

Trying to get better because I have a surprise 75th bd party for my mom on the 28th, but travelling 26th and it is a 12 hour drive :thumbdown: All I can do is go day by day. Sorry, this was kinda a vent too. :shifty-t:
Well, I can well imagine!! If my mother showed up unexpectedly and told me she was staying for two weeks..... I love all you mothers out there, but hey a little warning please!!! I hope you can get back on track now Penny:)
 

Crohn's 35

Inactive Account
Thanks dusty and dexky .. the hardest part of having her here was it is too hot to be outside, I have central air, so we were in the house which is half the size my other one was. We only watch on tv one thing in common, and we played upwords til I couldnt play anymore and having been in a flare, seems to be that way when she is here. Two strong independent women is crazy :yrolleyes: This was only a week, she has been here for 3 weeks at a go, and boy that is very very hard on me. :yfaint:.... oh and I leave here on the 26 to the 30th to her place for a bd party, so that will be my fill til Christmas... I know such a bad word LOL.

I am feeling a bit better, up'd my pred half a pill, taking flagyl and cipro til I see my Gi on the 23rd. Fingers crossed!
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Hey Penny, I hope you can get relatively sorted before you have to make that 12 hour drive!!! You're not going to have much leeway it seems from the 23rd to the 26th!! Glad to hear you are feeling some better!!
 

Crohn's 35

Inactive Account
Yeah tell me about it! But I am taking cipro and flagyl along with Pred because if I dont I am gonna get worse. This bd party was kinda worrying my hubby and my daughter because of the stress. I need to get away tho. I love my dogs but I am with them 24/7 and a cat who just wants to eat and sleep lol. I wish we were staying longer but it will be too tight as my hubby goes back to work earlier now that flight schedules have changed. :( Oh well, I can only do what I can do right? Need a life :yfaint:
 

Crohn's 35

Inactive Account
Update..

Ok so today is prep day!!!:mbh: gotta love Jello!! NOT :puke_r::puke_r: But, better than nothing. Took 3 dulcolax because I forgot to take 2 Monday night... already pooping yellow... havent even started the Pico Salax til tonight, and another 6:30am... My scope isnt til 12 noon which is a long time without food :mad2:. This is the only part I hate, but I know losing a few pounds won't hurt lol.

I should get some answers and my flares have been kept down to a minimum so I am probably not as bad, but I still want to see what the heck is going on , on the left side mostly. This will determine how fast my current gi will let my GP know who I should be referred to either a local Gi rather than Toronto, problem is I live 1.5 hour flight from there and scopes and xrays will be very inconvenient.

Oh well just taking it one day at a time!
 

Silvermoon

Moderator
LOL Jetta - welcome to life in the "boonies" - I have always had to travel a minimum of 6 hours - sometimes 10 hours, to have scopes and X-rays done, as the little hospitals close to me are "rural" - which means they have ancient x-ray machines and NO other diagnostic equipement...lol.... but oh well... that is the price you pay for living in "peace and quiet" outside the "city" life....

Otherwise, hopefully all goes well and they find out what the heck is going on in your poor little belly and can come up with something to help it.

Sending warm thoughts and hugs...
 
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