Marcie here, I have started with the Dr. Upper G.I. about this Gattex.  So far I have found NO SUPPORT of answering my questions even tho I am going for it.. Got to sign papers etc. then a nurse will call me. and come to my house etc. not including the Dr. can answer my questions until I sign a paper. The  first paper just allows them to move forward to see the amount I will pay as it is 300,000 per year. I did just call the dr. office and as the Dr.. stated when I saw him 2 weeks ago, his assistant can answer ALL my questions. WRONG !!!!!! Passing the buck type of thing.  She just  told me that she will call the nurse to call me..  I did ask how Ostomates did on this and if any problems. "cant answer that she said.. Asked where they were located? cant answer that..  I am not asking for names. All I get is they are all doing GREAT WITH THIS DRUG.  I wonder why his assistance cant answer questions???????? simple questions? He (dr) told me she could and knew all about this drug-she is his side kick)  :-(   As of now, as far as payment goes?  With all this secret stuff-they can pay me.. If I get my questions answered.  Because they will waste their time on  me!!! IF I get any time?????? 

If anyone entering any NEW kind of drug?  Did you go through this as the above?  Doesn't need to be GATTEX.  Thanks in advance. Marcie..  p.s. I will continue with my up dates on this drug and the treatments of the reps. from the drug company.  

2-6-18.  As some of you know that I am considering "Gattex" injection which is a new drug of 3 years. You inject once a day. Hopefully this will help me get off 3 x/a week of IV/ fluids and have a life. As a new drug, I have found many problems with getting extra information.  Such as Talking to other patients, and taking the steps of this Company SHIRE" I always get "cant answer this" etc.  Well, I hit pave dirt-I think. I m having a rep. of this company to come to my house next week to talk with me and Tom. I talked a bit with her seems nice.  Also, get this--I CAN TALK WITH A PATIENT!! This is a set up phone call to me through SHIRE. This talk between me and the patient will be monitored-yes someone will be on an open end phone and possibly taped.. Now IF either myself or the patient (which I am wondering if this is really a patient) Go off bounds (as I have been interviewed via: a phone call today) We will be disconnected..  This call will be after my home visit by the Rep. from SHIRE. Which will proberly be the cost and major sell pitch. Yes, sounds like a major Government secret.. ?   I will keep you all informed during such an odd process, and hopefully anyone that comes upon making any attempt of checking out a drug of your choice-or interest- Been a long road to get where I am now..  Later......... Marcie.

Posted by: Marcie

Also, get this--I CAN TALK WITH A PATIENT!! This is a set up phone call to me through SHIRE. This talk between me and the patient will be monitored-yes someone will be on an open end phone and possibly taped.. Now IF either myself or the patient (which I am wondering if this is really a patient) Go off bounds (as I have been interviewed via: a phone call today) We will be disconnected.. 

If the company is initiating the conversation, then I would imagine they have some very strict legal obligations, which is why they will be monitoring things. I'm surprised they're actually doing this for you! But I suggest asking the most important/relevant questions first (and obviously the type that a patient would be able to answer) so you have the best chance to get them answered before the call ends. 

I've suggested getting in contact with independent patient groups in the Short Bowel Syndrom community as they'd be able to discuss their experience more freely - but remember that their experience may not be the same as yours and their circumstances for being on Gattex may be very different from your circumstances. 

Either way, I hope that things work out and you get all the information you need to make an informed choice! 

Yes indeedy!!!!!!  I have my questions ready as a patient.. Do u have any questions that I may ask for other than mine?  Like advise? P.M. is fine if u want Eric. Like I said, I have pushed and pushed for this.. Sorta like a term paper for me.  Very strict !!! I did ask for an Iliesotmate to call me and repeated this.. The woman that is coming to my house was surprised at my knowledge etc. Hard to get. But common sense is my first attack then I hit them hard. I have made copies of everything.. including my presprition.. (which is not valid) I have been on the SBS and IBS net work. but all I am finding are babies and birth defects of such. (poor little things) I have a copy of all the support groups in the USA and will do some calling to those groups tomorrow while it snows.. :-) 

Robert, to answer your question about the inners of the intestines they are lined with hairs.  These hairs absorb. What Gattex does is: make these hairs thicker so I or others like me WILL absorb better. (that's a secret) :-) So therefore, a blockage can happen..  So, IF I go on this and the price is right.. I will have to start all over again with introducing foods again. :-(    I need my fluids...and trying so hard these past 3 1/2 years, I am willing to for it.. I had all major blood work done this week, heart Dr. checked=great.  Just have to talk with my kidney Dr. But My Primary Dr, keeps a close eye on that every week on the kidney levels. So, I got all  my ducks in a row for that part..  I cross my "T"'s and dot my "i" 's on everything here on Gattex. 

Kinda interesting with this search.. Never saw anything like it before!! Like singing my first born son off. :-O                

I might add  here, that I am NOT suggesting Gattex for anyone.. This is for YOUR Doctor and YOU to talk about.. Let the Doctor go first. (they may not even know about this drug)  I am not  SBS or IBS but performing in the SBS nature of dehydration.. I.V. fluids to keep me alive.. We r all different.. I am doing this research for not only for me but for anyone that may come across anything like this. 

But boy oh boy are they interested in ME!!!!!!!!!!! but don't have the $$$$$$ 

Bless you,  Marcie.  After you clearly educated yourself with discussions with your doctors and the other patients and with studying the literature,  and after living in a personal hell, you say that enough is enough and you are making a decision. 

You heard all of our fears and cautions. You used them to guide yourself through the maze of decision making process. 

Go forward with a clear heart. And may God bless you. 

Thanks 'Z' As any medication even on T.V. they give you the same side affects +++  I concern is blockage.. I don't really take much medications.. So this is important to me one way or the other of fears.. For over 3 years, I have tried everything..  Some people don't understand that I am not like them and these over the counter  meds. etc.  worked for them and me not. I am just an odd ball I guess. :-) Some patients who get this way their bodies work it and within a matter of months they are just fine..  So I gave it my all !!!! 

This is in hope for anyone like me, or gets into a formation of secerts = how to use this information and what to expect. etc. 

I thank you all for your supports, and mostly what you all  have been through-I see that I have lucked out in many ways.. I just got a bad side affect of dehydration.. Some do and MOST DONT !!!! Do not fear newbies!! 

This drug is $300,000 per year and yes they lowered the price.. :-) (ya ya y) Yes they want their money!!  Don't blame them, But not from this house!! I would think that they would be more interested in getting people like me to add to their expereance and pay me.. I believe this going to be like buying a house, counter offers. Buy it or loose it. 

Well, tomorrow the woman from SHIRE for Gattex is coming to my house.. :-).  I made sugar and chocolate chip cookies and will offer her tea or coffee. Hopefully, my home will be in great order, as I have dusted areas that I have left for months like the fireplace shelf bla bla..  Then the fun begins !! Took a few months to get this far. But on this subject, time is in my favor I feel.   Then the phone call with a patient (?) on Thursday, that they will set up via Boston, Mass. (Shire company head quarters)  to Texas (patient (?) -)  to me in Ct. (as I have stated this is going to be a three way street/speaker phone call)  @ 1:00 -  2:00 p.m. I asked for an ostomate but she is not one.  Will mention this again tomorrow.  Going to be an interesting week for me.. :-O 

I will be dressed nicely, (God, I lost more weight-fluff up the hair do???) ) and Tom also.  As Tom is taking me out for dinner afterwards for an early valentines day dinner..... Haven't taken Nellie out for dinner in some time..  Hope she behaves herself.  ---  Had a tough time with her this morning at infusion.. She really talked up a storm as if she was a talk show host! Just spit all over herself-had to change her dress 2 times.. Needless to say that one bathroom was out of order because of her using up the space.. for a few times.. Knock knock knock on that door !!!  "In a minute I say" Gezzzzzzzzzzzzzzz. Good thing I was pluged into "hope" (my I.V. pole) when she let loose............ AGAIN !!!!!! :-) ahhhh sweet Nellie......... 

Wish me luck!! 

Hi The Gattex rep. came today.  Very nice lady.. Received much more information.. As the other side affects, those of us with stomas, will see their stoma widen a bit as this (hormone Gattex man made acid base)  adds more support to a SBS = non-working intestine. So as this injection makes the small bowel more supportive and deepens in areas to absorb, that became weakened or not working/damaged  This will be reduced after awhile.. :-) whoppie!! 

We got into the payment.  $4,000 per month for us.  wrong........ 

Went into support system.. We pay nothing!!!!!!!!!! :-) So, I am going on it.. Hopefully within 3-6 months I will see results and stronger.. Hopefully, I don't have many hard side affects. Kinda scared, but I have gone through all tests, medications, For the past over 3 years.. Doctors just cant help me anymore.... Except for opiod drugs. Nope.. That has way to many side affects as this, and more.. Wish me luck!!!!!!! Need support.. M.

Good luck Marcie. Finger and toes crossed for you . 

Bug hugs , Bubbles 🤗🤗🤗🤗

We are with you on this journey. Remember to put one foot in front of the other . Left,  right , left,  right. 

Keep in touch .

We love you! 

Bubbles and Z, thanks for you support. Hugs right back to ya!! :- ) !! Your both so sweet.

My concern is the stoma part, blockages, so, I will have to start over again of enter of foods into my system.

I vomited all last night so I looked real bad today a  little bug I guess.  So needless to say we didn't go out for dinner tonight. lost 4 pounds on that one.. 

Yes, Z, I always keep marching along but hope up the steps a bit more.. :-) 

Good luck, Marcie! 

Let us know how things go as you take it. 

Thanks Eric, Of course I will let you all know how this goes.  I think this is important for others to learn from.  As it is not only a new drug, but I am an ostomate.. We are different now. Many changes to make like my medications wise, Eating again, etc. Talking with all my Doctors that I am on this etc. I have had information sent to my specialests, Doctors, and also, a Rep. will educate them at their office for me and for their/my sake. At my request. I am not fooling around as you can see from what I have searched and have been writing. Guess I am you test rat huh?  I hope it works out for me and no major problems. Should start in about 2 weeks. Marcie............ 

Marcie,

We all love you and will be praying for you with our sincere heart and soul.  I have the same issue - I am eating so much but my body (small intestine) is absorbing little ... , as a result, I can't gain weight and remain malnourished.  Please keep us informed of your progress.

love,

kiya

Same to you my friend!!! My kit came today.. Now for the nurse to come and have a show and tell...............  I am scared and excited at the same time..  My last hope..  I think.

But I am plowing through to success............. Even if it's half way.. I will take it!! :-)

Let me know whats going on with you lately? Got my calendar marked for March 9th. 

Marcie,

I actually have a question.  I understand that you have symptoms of short bowel syndrome.  According to wikipedia, 'most cases [of this syndrome] are due to the surgical removal of a large portion of the small intestine'.  Is this the case for you as well?  Has any part, even if not 'a large portion', of your small intestine been removed?  I asked my surgeon the other day how much of my small intestine has been removed in the three operations he has performed in the last three years and eight months and his answer was 'about 30 cm (or about 11.8 inches)'.  He added that this is not a significant amount at all and that it should not be causing any serious effects on me.  However, in reality, I have been suffering from malabsorption, malnutrition, dehydration and wight loss.  I eat at least 3,000 kcal every day and I am not gaining any weight ...  Can a person have short bowel syndrome even if it is not the case that a large portion of her/his small intestine has been removed?  Is anyone else here experiencing similar short bowel syndrome like symptoms?

Thank you very much.

with love and best wishes,

kiya

Yes. I have all my short bowel. They are just sleeping so to speak. Even tho you have a little taken out = this SBS...  forsome yes for some no. Everyone is different.  You do sound like me. IT has been 3 1/3 years now for me.  Got worse. I tried everything over and under the counter of drugs. No help. I had the scopes etc. No damage.. 

This is a hard illness to properly discover. They seem to paymore attention to major loss of the small bowel tho. That was my problem with the Doctors.  " takes time" I have run out  of "their time".... There is that word again 'TIME'  :-(   The text book is for the normal people.  I am not normal.. I am a surprise. (as always) ) .

My pain in the gut is because it seems always empty. And it is........ My ribs get stuck under and folds to the stomach area. (thin) I am tired, Upset stomach.. 

The nurse called this morning. I start Monday with her.. I pray this helps me. But I found some good Dr.'s and I nowhave a great team working for and with me on this adventure..  Good luck girl!!!!!!!!! Anything else? .....

I think that 11 inches is a lot gone........... We have 18-20 feet of the small bowel. It loops a lot. Did he say that anything is tangled? That happens. But mostly works itself out. THen again?? I think u have a bigger problem tho- Get into your Doctors face!!  I did, Be nice but firm, don't take the easy way out. 

Don't know what his plan is for you.......  But understand EVERYTHING and shoot out your informations. Your questions and the why's...!!!!!!!!!!!!!!!!! Get your answers..  Ask for the "What if's" 

I could be a better assistance to this one GI Dr. than what he got now I can tell you that!!!