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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. :(
 
Hi Pen, :hug:
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.
:hang: you never know what may work for you.....and I sometimes need a good cry too!!
:goodluck:
 
Pen, all I am going to say is you are in my thoughts and sending you a great big hug :hug::hug::hug::hug::hug:

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

You are all how we get through each day, and I want you to know that I am here for you as well.
 
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
 
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
 
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!!
 
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
 
Hey Jett,

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

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

Thinking of you, always,
Dusty
 
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. :ghug:
 
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
 
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! :)
 
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!! :kiss:

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!:smile:

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.
 
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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.
 
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
 
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.
 
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 ...
 
Update after GP appt. Sept 9

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. :shifty-t:

Thanks for all your support guys, now I have to wait! Should have a betting pool how long it takes :yfrown:
 
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.
 
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
 
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.........................

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

:hang: MATE!

Dusty.
 
MsSickandTired said:
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.
Click to expand...

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!:thumright:
 
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 :hang:. Sending lots of love, Beverly


:rosette2:
 
Astra101 said:
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
Click to expand...

:hug:Thank you kiddo! You have been there for me so much and I will get some hugs from my daughter Saturday and then Tuesday! :hug: to get rid of the D :lol: luvs ya xxx:kiss:
 
DustyKat said:
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.........................

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

:hang: MATE!

Dusty.
Click to expand...

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! :hug:
 
MisB said:
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 :hang:. Sending lots of love, Beverly


:rosette2:
Click to expand...

Bev, you are my inspiration and your posts hold me together and know that anyone can get through anything if you can.

My biggest worry is that since no meds will work and ulcers are getting worse , surgery is gonna happen. The surgeon I picked is a teaching doctor for colon cancer and IBD, and I went to his seminar, and he is amazing, so fingers crossed if I do have surgery it is here and with him. My doctors are amazing, they just dont know what to do with me! Thanks for your love and support and you keep strong too , because you help me realize I can do this too! :)
 
Hello Pen, So sorry to hear all that you are going through....:(
You're in my thoughts and prayers, and my deep understanding of pain.
:hang:
:rosette2:
 
Pen - Sorry for the news. Hopefully you get the surgeon you want and all goes well and you can finally get to feeling better. I am thinking of you.
 
Thank you Iseibert and Kelly. I just feel like will I ever get remission? I tell my mom I can handle some pain and she says you shouldnt have to but we all know surgery doesn't do the trick right? My first resection was great but my second done by a general surgeon caused so much infection that I never recouped from it. So now they say of course the is not guarantee... everyone knows only death and taxes are certain but it can come back faster. So I really have to weigh this all out. I am not young any more either so it is harder on the body. So I have to wait this out take it one day at a time.

With all you guys behind me.. I can't lose!!!;)
 
Hunnibun where have you been??? Havent seen you in a while I hope you are ok? How ya feelin' sweetie? I guess I must be a strong person... but I dont see it, cause baby I can whine as bad as the next guy ;)... but then again you guys don't live here ;)
 
Pen said:
Hunnibun where have you been??? Havent seen you in a while I hope you are ok? How ya feelin' sweetie?
Click to expand...

I was actually in the hospital not to long ago due to a flare, and some pretty bad manifestations. And I have just started up school again, so I have been super busy. I'm actually feeling a lot better lately, I think I'm finally going into remission :mario2:
 
YAY!!! Hope it continues, for some advice, just eat as good as you can and try and stay stress free. What is your major?
 
Pen said:
YAY!!! Hope it continues, for some advice, just eat as good as you can and try and stay stress free. What is your major?
Click to expand...

I have been trying to do some yoga to keep my stress levels down when I'm in school, and I have been keeping to my diet since I started Pred. I am doing a pre-health program to refresh some of my courses to take practical nursing in January.
 
Good for you and all the best to you, but please step in here once in a while to keep us posted, good or bad, always nice to see people and doing well too!
 
Hey Pen

I am sorry I am so late in catching up on your news. I wish you well with new GI and am thinking of you. I just want to give you a (((hug)))
 
Good luck Pen with it all...I hope that a new GI can help you out and that you don't need surgery...I'm keeping all my fingers and toes crossed for you...

Take care x
 
Hey Pen,
Wow you are going through so much. I know the waiting and the decisions of what to do are so hard. I hope you can rest and take it easy for now. I know you will keep us posted, and your friends are here for you.
 
Aura:Not worry, I know you are busy and this is a busy time of year for everyone, and you have been a great support for me too. Plus you have had problems weatherwise in your country.. hope all is well.

Duck I thank you too, you are a person of little words but what you do have to say, really supports people,,, keep your toes crossed too :lol:

Lucy You have been so nice and love to get your pm's and let me know how you are doing and vice versa. Thank you!

Elle I know you are new here and bonus you are Canadian ;) because we can learn alot from our crappy system, it has its good points but some bad as well. I think I am lucky where I am, sometimes the bigger the city... the longer the wait. This way if it happens fast I dont have too much time to stew over surgery, IF it comes to that. We tried to get Cimzia when it was around but didnt happen and my current gi has connections to Mount Sinai in Toronto... but, they are too busy. I hope you get help soon too, and you are going to fit in the forum very well.


Thanks to all of you, I have a reason to get up in the morning and face the day. Didn't get much sleep, was up at 4am with horrendous pms pains... just when I got tested after weeks it never came.:ywow:
 
Been away for a couple weeks and am SO SAD to pop in and read this. Penny, you are so kind and sweet, and always there for all of us. You deserve a break already!!!

I sincerely hope the surgery offers you some relief after all these years of pain and suffering.

Hugs and best wishes - xo xo xo - Amy
 
I don't know how I missed this thread! I hope you get some answers and some relief soon Pen...you really deserve it! You're always so welcoming and cheerful to everyone here, even when you're feeling horrible yourself. If you wind up having to have surgery in Toronto, I'll definitely come to see you! And if you or your family need anything when you're here, don't hesitate to ask...I have a big house with lots of room if they need a place to stay :)
 
@ Pen, Sorry to hear about the colonoscopy results, but as you said, you felt that something was wrong and I am glad you took actions to address it.
I hope you find the best surgeon so you dont have to stay on Pred for a long time.
Big hug to you!
 
Hey there, Pen! I'm back from my trip and was really hoping things would be turning around for you... argh. Anyway, tons of hugs for you!!!!!
 
Amy: There you are, I wondered where you got to, hate when people disappear for a spell cause you wonder if it is bad news, I am glad you are back. I thank you too for your kind words you are the same. You really do make a difference helping out others as well. :smile:

Nyx: Cindy I know we sorta lost contact but we both have been busy, and me dealing with the Crohns and falling through the cracks and I am ok day to day, but have every pill on the planet here and careful what I am eating. My daughter just got back this morning and we are packing and getting her stuff to a house with 4 other girls. She starts Uni on Monday. Then the hubby on Tues.... Sometimes I read your stoma stuff and think if I have to go the route I will! You make it seem alot less scary!:lol:

acg101: Thanks for the hugs, I got one today from my daughter, and more will come soon, but coming from you all , makes it extra special! Just knowing that if I do have sugery, I still have to contend with a spastic colon. Thanks for being here :)

Inky! : I am glad you are back!! I missed you and hoped your trip went well!! Keeping busy has been helping me alot. We are going to get an amazing Sunny week coming up, perfect weather and my routine is coming back soon. :lol:

Today I have a bit of bloat, but doable, kinda the PMS thing not co operating :tongue:


Hope you all are good to yourselves and yes I do tend to help others even if I am not well because I really hope no one has my journey for the length of time I have had. There is only one YOU, always take care of number one!:)
 
Pen said:
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. :smile:
Click to expand...

It is the most powerful weapon against Crohn's. I've been thinking of you and your strength makes my own prognosis easier.
 
Sounds to me like you would be a perfect candidate for a SCT in Chicago, or maybe one in Canada (I could contact the people I know that have had it done there). Give me the word and I will do my ALL to get you on the/a trial. One of the criteria is that the patient has pretty much come close to exhausting all areas of treatment and is facing surgery. Has an 80% sucess rate in all those cases. I will be there for you all the way, if you wanted and decided to try it. Sorry to hear of your tough times Pen. Im thinking about ya...
 
Pen, Awwee...I missed your thread...SUch a bummer. I really feel for you..I hope and pray there is some relief out there for us in the future. After 35 years of batteling this darn disease..I think I might look into what Zig Man said...This is just wrong wrong wrong...that we have to suffer like this...Prayers and many hugs to you..You have strength and wisdom that I admire...Peace, Sue
 
Mr. Ziggy said:
Sounds to me like you would be a perfect candidate for a SCT in Chicago, or maybe one in Canada (I could contact the people I know that have had it done there). Give me the word and I will do my ALL to get you on the/a trial. One of the criteria is that the patient has pretty much come close to exhausting all areas of treatment and is facing surgery. Has an 80% sucess rate in all those cases. I will be there for you all the way, if you wanted and decided to try it. Sorry to hear of your tough times Pen. Im thinking about ya...
Click to expand...

Mr Ziggy I thank you for your post and so glad you are back! I am in between a current close to retiring gi and had my colonscopy and my GP is referring me to a local Gi and a Cancer & bowel surgeon for IBD. As soon as I know what's up... I will let you know!! Thank you so much! Our system is alot slower here, but hopefully I could fare through like you did. You are an inspiration to me, and I am fighting this, cause I aint going down without a fight! Hugs, and keep us posted of you ok :smile:
 
Sue-2009 said:
Pen, Awwee...I missed your thread...SUch a bummer. I really feel for you..I hope and pray there is some relief out there for us in the future. After 35 years of batteling this darn disease..I think I might look into what Zig Man said...This is just wrong wrong wrong...that we have to suffer like this...Prayers and many hugs to you..You have strength and wisdom that I admire...Peace, Sue
Click to expand...

Thanks Sue!! :thumright: I just get worried that I will not tolerate what Mr Ziggy went through and my chances of success have always been low so who knows gotta try right? I have my daughter who is in the undergrad medical field and have good doctors here, so I am holding my own. A 3rd surgery is what I am trying to avoid, and you are an amazing asset to this forum!:ybiggrin:
 
Pen said:
I will let you know!! Thank you so much! Our system is alot slower here, but hopefully I could fare through like you did. You are an inspiration to me, and I am fighting this, cause I aint going down without a fight! Hugs, and keep us posted of you ok :smile:
Click to expand...


I know you could make it through it! Both of the other crohnnies who did this with me were in extremely bad conditions and they made it. One was a 36yr old guy who had deteriated down to 106lbs cause of his crohns, before he started the chemo and trial. He is doing great now. The other was a 20yr old female who weighed 110. They were both surgery of removing everything. Just saying, I KNOW you can do it. However, I know that it sounds scarey, and is a decision only the patient can and has to make. I will keep you in my prayers.
 
Pen said:
Inky! : I am glad you are back!! I missed you and hoped your trip went well!! Keeping busy has been helping me alot. We are going to get an amazing Sunny week coming up, perfect weather and my routine is coming back soon. :lol:
Click to expand...

Hooray for sunshine!!! I had a great trip - really good to see my family. Now I just have to get back into my routine, too... it's hard for me to get out of "vacation mode"... :ytongue:

Anyway, glad you're hanging in there!!!! ((((hugs))))
 
Pen-
I'm so sorry to hear that you've been feeling so bad and have such serious decisions to make. As you told me in my first post, "you do what you can when you can." I hope you are taking your own advice and making yourself your #1 priority and taking care of yourself. I think all of the support we receive on here and a good bawling cry every now and then are as important a part of our treatment as all the drugs. Hope you will start feeling better very soon! Hang in there!!!
-Allison
 
Hi Penny: Wanted to let you know I'm thinking about you and sending lots of hugs and wishes for good moments and strength from hour to hour. So sad that you continue to suffer.

xxxx
 
Thank you Sabrina, Ziggy, Allison, Sue and Kelly, so nice to see people actually take some of my advice and read my threads. :lol:

Well I thought I had an appt yesterday, went all the way there and wrong day. :yfaint: It was today, but my Gp was so far behind (never is) and I was there for my B12 and tests results of blood work on PMS... girly things ;). NO talk of the Gi appts or nothing. I asked him if I could get my daughter in to see him for an appt, he said "I can't say no and I can't say yes".... so I never got an answer. Oh well, we are only allow to ask for 2 things, and guess I will have to wait til I get my B12 shot again, I hate bothering him but he never asked me anything and he isnt excepting new patients so I guess my daughter will have to go to a walk in clinic. So it wasnt a waste of time for my test today and my B12 but still got no where on the other doctors. Long waiting system here.

Down to 5mg had a really bad flare the other night, bad bloat and gas but took a Flagyl and one Cipro the next day it settled so, still winging it...thanks for the support but I am not too bad at the moment.
 
Oh Pen, so sorry to hear that this continues to drag out.......:hug::hug::hug:

So when you go to the doctor do you mean you can only ask him two things all up or two unrelated things, that's it?????

Dusty. :)
 
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Hi Pen, I am sorry you have to go through all this waiting to get into GI. I know you have been waiting a while and things are not getting better for you while you wait. I hope they get you in soon. You are in my thoughts and I will say lots of prayers for you.

Take care
 
Pen said:
so nice to see people actually take some of my advice and read my threads. :lol:
Click to expand...

And curtsey to you on occasion ;)

I'm with Dusty - what's with this two question thing? When I have an appt. I have pages of questions and don't let my doc even make a move to go before he's addressed them all! :eek:rder: :D

Is your daughter doing ok???

(((hugs!)))
 
Dusty and Sabrina, yes, this has changed in our Ontario system or clinics many years ago, they ask to keep it to 2 problems or questions at a time. My doctor was behind and busy so that is why we have to limit it. Some doctors are adamant about it some are not. So with the test (pap) and b12 shot that was 2 things.

As for my daughter she is great, but she has acne so bad and has tried everything under the sun. She is thinking it is hormonal. I warned her that alot of people tried Accutane with bad side effects, and some dx with Crohns. She also needs a gyno, she has never had a physical and only wants a woman. She is only 22 so I can see that. She is busy and she has no clue (and headed for medical school down the road) as to the politics and policy of doctors, she hates politics...

Rosemary, thank you for your prayers. I am not in severe pain, I know how to control it but it is only a matter of time and don't want my Crohns to get worse ya know?

You guys are great!! :)
 
Wow, I had no idea that you had those sort of restrictions placed on you, I'm speechless.........:yfaint:

My doctor would never survive! By the time he gets through asking me about everyone in the family and then some I've just about forgotten what I went there for!

I'm sorry to hear about the problems your daughter is having. I hope she can find something to give her relief.

Look after yourself Pen, :hug:
Dusty
 
I've never heard of the 2 question rule...I always ask my GI every single question I can think of. Perhaps it's because you were asking for someone else? Can you ask as many questions as you want if they pertain to you? Seems weird to me...

Hope they do get some answers for you soon though Pen...
 

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