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Marcie
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February 21, 2018 8:15 pm  

Kiya, Have they even checked for bacteria-caused by diarrhea... ???? It is not just blood work. This bacteria can be small and hidden.. Then it spreads. SLOWLY OR FAST..

 

There is help out there for you!! As I proceed with this new angle, It may not help me. But then again, it may.  Got to take chances now.. shall see in a few months if it goes o.k. 

Are they even giving you anything like i.v. fluids and tpt or  is  it tpn ?? To stregenthen you up? That would be a goodhelp for you!!!!!!!!!!! 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


kiya
 kiya
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February 21, 2018 8:29 pm  

Marcie,

Thank you for thinking about me and sending me helpful advice and encouragement when you are yourself going through a big challenge.  I think bacteria is a realistic possibility for me.  When I was doing research on SIBO (small intestinal bacterial overgrowth), I learned that there are two major types of microbes - the hydrogen producing type that causes diarrhoea and the methane producing type that causes constipation.  When I return to England in a few months time after the operation here in March, I am planning to have a test for SIBO at a private clinic.

best wishes,

kiya


Marcie
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February 21, 2018 8:47 pm  

Your right on top of things!!  like me girl!! You rock!! Have that test done now.. Get as many tests done!!  all of them.. ANd do it again in England!!  PUSH GIRL!!! Different Doctors come up with different things.  Somehow they may or will combine together.. Like I said, you have my shoulder in every way.. So remember that!! I know that your scared and frustrated.  Your fighting for your life to get answers.  I know that walk and run. We all do-- Don't worry about me.  I feel that I did my homework well. --I get that crazy call that will be montored tomorrow at 1:00 p.m. I will tell u about it.. :-)              You take care of yourself.. Love, Marcie.

 

Come on everyone, Kiya need our support on this journey.. She is in trouble.. And scared. 

Lets go to the lounge for Kiya!!!!!!!!!!!!!!!! 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


Marcie
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February 22, 2018 4:55 pm  

Did not get my phone call today.  But I did call about that.. and I spoke to someone about SBS  YOU DO NOT HAVE TO HAVE ANY SMALL BOWEL REMOVED  to have SBS - Many people have this as I do with all your small bowel intact.  Good luck on yours search and hopefully, you can find something to help you--there is not much for this.. But I hope I have found a help for me. YOU  Got to dig, and got to educate Doctors.. If they don't know anything about Gattex and what is before this drug.  Hopefully you can find something before Gattex as it is so new.  I will keep u all educated as I go on..  Not fun is it?????????? Hugs Marcie.

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


Zvitusk
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February 23, 2018 1:22 pm  

Dear M & K,

How was your first week? 

When I had my first bowel resection  , the shortage was 30 centimeters or a foot.this was 30 years ago. Other than cutting out my Ileum, which is where vitamin B12 is absorbed,  it didn't affect my functions . 

Last operation of took out over 175 centimeters more. I felt HUNGRY all the time.  Transit time is 1.5 - 2 hours. 

What was I absorbing? I was overeating to compensate.  My weight ballooned. Three years later, my cardiologist set me free. She said that I MUST lose weight. No mercy! No excuses! 

I so far lost 10 lbs, by cutting out panic eating . I haven't joined Weight Watchers  yet. 

Enough said about me.  Are you ok?


Bubbles
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February 23, 2018 2:40 pm  

Marcie , 

Have you looked into bowel transplant. I heard its been very successful. They do stomach transplants too. 

Be well , Bubbles 


Marcie
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February 23, 2018 3:00 pm  

'Z' Doing great on loosing 10 pounds !!  Your must be proud of yourself.. I am.  Maybe weight watchers is not in the cards for you.. Just doing what you have been doing and then eating the right foods and in smaller amounts....... You will go into a stand still but don't let that bother you, your body is adjusting.. Then keep going and more will come off.  bet by July you will meet you happy weight.. And your wife also-  But woman have it harder loosing weight tho.. Harmones!! :-( 

 

Bubbles, I know about the bowel (small) transplants.  Still in early stages. ( I wanted a colon transplant-as I hated Nellie at first) That is not to happen.. they don't do it. That will never happen for  me as a small bowel transplant.  I am to old I think anyways. And I think you live to far away to hold my hand through that one!!! 

Right now I need your hands for support with this Gattex thing.  :-) Next Monday!! I start :-) 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


Bubbles
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February 23, 2018 5:15 pm  

Where will they do it Marcie ? 

I suggest they have a mega dose of Benadryl in case you have a reaction like Anaphylactic shock . That has  happened to me twice when trying new stuff . Better  to be safe . I will keep you in my prayers . Im real tight with the man up stairs . 

Big hugs , Bubbles 💕🙏🏻💕🙏🏻💕🙏🏻💕


Marcie
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February 23, 2018 6:36 pm  

Are you asking where on my body or ??  First, the injections go where insulin goes, thighs, which I have no mussel or thigh, anymore.  and the tummy area.  As I only have my left side of tummy to work with, also, the upper arm-which I cant do myself.. So will have to teach my sons that later on.. Tom, I know wont have anything to do with ANY medical procedures.. White coat FEARS.   AS I am up one on giving myself injections anyways, I should have an easier time.. I will have to get Tom to practice with an orange..  That should be a blog within itself!!! :-)   :-(    ??????  I do have many extra needles here

Or maybe I can just have Tom pinch an area of my arm and I shoot it myself.. Then pick Tom off the floor.. :-O

Where? The nurse will come to my house 3-4 weeks/once a week, IF needed.  All of this will take place in my master bathroom. I am always cleaning and sterilizing that place. I am kinda excited...  I so much want this to work.. The nurse is within SHIRE company.  Coming from near Boston area, like everyone else. Very tight company........... Also, the injection starts working in your body 3-5 hours. I am thinking of doing this at night so If it hurts etc. I can sleep through it. :-?Mornings I am not wake..  There are days I wonder  how I drove myself to infusions. 

I didn't get my call yesterday from a Gattex patient. As u know this call is to be taped etc. They called this morning to say they were sorry and that they didn't have another person to lesson in on the call. so, I asked if they were having trouble with getting  ***Robert Mueller :-) ***  (he is involved with the Russia issue etc.) joke. but then again???

This shock you are talking about?  What are the signs of that?  True, I should armor up with some meds--mostly for an upset tummy.. Hate stomach aches.. 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


kiya
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February 23, 2018 6:45 pm  

Dear Zvitusk,

Thank you very much for posting your story, which gave me so much strength, encouragement and hope.  In your case, the initial removal was 30 cm (which is my current situation although some more - I don't know how much more - will be removed in my forthcoming operation in about two weeks time) and an additional significant length (175 cm!) was removed later.  My transit time is also about 1.5 to 2 hours but you could gain weight to the point that you felt 'ballooned' and were advised by your doctor to lose weight!  Wow!  One case is enough.  I now know it's possible - realistically possible.  I know I must eat protein but I am not used to eating animal meat and it's difficult to try to gain weight by eating lots of protein rich food.  I try to avoid sugar as I was told one year ago that I was at an early stage of diabetes.  So I rely on fat.  I have been eating lots of high fat food (rather reluctantly) - butter, cheese, double cream, olive oil, avocados, concentrated nuts milk, etc. ... for over a year but I haven't been successful in gaining weight ... : (  but I decided to be more patient!

Dear Marcie,

I will be sending you my sincere prayers for your safe and successful Gattex treatment.

love and light and best wishes,

kiya

 

 


Marcie
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February 23, 2018 7:28 pm  

Right back at you Kiya!!  You just eat what you want!!  And lots of it all the time.. How about milk shakes? sip  on those. Yes the empting part comes with it. but you  may be able to pick up some calories.. 

Don't worry about me.. I am worried about you now.  You take care. You never told us how your trip went????  to where u are right now.. take long? Keep us in the loop. Your experance is important to us too!!  Any thing u would do differently?  Light flows around you, Marcie.

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


kiya
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February 23, 2018 7:43 pm  

I am currently in Tokyo preparing myself for my next operation (my 4th in three years and nine months!) on 9 March.  I will be in hospital for about a week from 8 March.  Although my next operation will not be as serious as the total colectomy operation I had three years ago, any operation performed under general anaesthesia should be serious enough.  So I am naturally nervous but staying in this community helps me enormously.  Thank you very much and very best wishes to everyone!

kiya


Zvitusk
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February 24, 2018 11:50 pm  

May I suggest that you take an A1C  test to see if you are diabetic. You  have enough trouble and worries about your stoma, without having that on your mind.

Z


kiya
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February 25, 2018 5:57 am  

Dear Z,

Thank you for your kind advice.  I have had this 'A1C' test on a few occasions including a few months ago.  Although my last test result was towards the highest end of the normal range, it was not outside the normal range; nonetheless, I should be careful as most of my relatives are diabetic, some of them being seriously so.  It's interesting that although my A1C is within the normal range, my blood sugar level is always high (i.e., beyond the normal range). 

Since I arrived in Japan four weeks ago, I have been eating lots of azuki bean (small red bean) sweets (my favourite!).  My excuse is that I am trying to gain weight, especially before the surgery, but I know I shouldn't eat like crazy.

Marcie, Monday is soon.  I hope you are still excited and feeling positive about it.  I feel it's important that you don't have fear and worry.  I am full of fear and worry about my surgery and what may happen after the surgery.  This 'fear and worry' seems to be my natural tendency and I have decided to overcome this before the end of my life.

best wishes to all of you!

kiya

 


Marcie
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March 6, 2018 12:14 pm  

Gattex:  First off the Shire people have been very nice and respectful to me. I am on Gattex now into my second week.  

The shots DO NOT hurt!! and easy.  The major issue of this is preparing the medicine.  You MUST have a clock with a second hand. This is the most important part..  So one should pay attention to this. Within 5 minutes I am done and out off doing my thing.. :-) 

My reactions within one week ahs been gas.  Not to bad, but I like to keep Nellie's dress a secreat. I have also noticed Nellie has widened a bit-so she is snug nicely and have a longer wearing time of her dress. Also, I found that I don't have to empty all that much--until late afternoon.  That is when The out put becomes liquid. Hopefully that will get better with time.  Along with the gas and the FULL feeling. So they say.. 

As I have read much on my issue of SBS etc. The doctors don't have much or much knowledge of the intestines. Now they are finding that SBS can happen to those of us (me) with all their small bowel do get this condition.. NOT just having some small bowel removed. 

I did gain 8 pounds the first week, then lost 4 pounds.. "they" said this is normal.. Gain and loose..  But I have 4 pounds on - hopefully to keep. I did notice with some that they don't eat much as the "full feeling". As I do also.  This is to be temporary. So they said. but I am shoveling the foods in.

Still waiting for THAT  call - The first call did not come. From another Gattex user. Judging from my lovely nurse that  comes to my house to see how I am doing (and to teach me how to mix and inject) that she has a lot of people getting on it here in Ct. near by me. But as  I cannot ask who and why.  As I know they cant tell me any ways. It is the law. The only reason know this is that she mentioned 3 different towns she was in and had to go to.. that week.  Then again these visits may be of a different area..??  But she works for Gattex.  Best. Marcie.

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


Zvitusk
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March 6, 2018 10:31 pm  

The phrase "before the end of life" is scary .  We all are facing the end of life as we know it . Besides the atheists,  most of us believe in an afterlife. 

Be it as it may be, we are rooting for you.  My calendar is marked for 3/09/18.

Chin up , and all that....


kiya
 kiya
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March 26, 2018 3:10 am  

Dear Marcie and Zvitusk and all others,

Thank you very much for praying for me.  I had my surgery on 9 March and was discharged one week later.  I will not know until much later how the surgery could improve my symptoms but I feel confident (with some fears and worries) that I will be well.

Thank you very much again and I return you the same sincere best wishes.

kiya

 


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Marcie
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March 26, 2018 11:03 am  

Kiya, I am so pleased to hear from you in so many ways!!  Let the worries behind.. That we don't have control.. I know u  have been through way to much!!  But now, a new start of healings begin.. And As u know, It can take a good few years because of you many scare tissues etc.  Things have been moved around,  And now for some re-structures of its own to set in. As I told you I am you back and a pillow to hug from a-far...... ALWAYS !!! Do not take this for granted, as I am with you all the way.. p.m  is best for further conversations.. see u there my friend..  Do you now how really STRONG you are????????????? 

Gattex is trying to doing thing..  But my kidneys are not all so good, so they can up it now.. maybe never-So I am in or will remain in the low dose - and a longer time for my body than others....... But I do see a difference in my output of foods staying in longer. Now for my body to get the message huh?  Rest, and enjoy the spring during your healings.... Love, Marcie.. 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Zvitusk
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March 27, 2018 4:15 pm  

Marcy said it her way and I will say it my way.

Kiya, 

I never met you before , but yet , I feel that you and I are kindred spirits . Take our hand and squeeze it and hold it tight. We won't let go.

Be very careful about dehydration. . At this stage, you can lose water fast. Drink on a schedule,  drink a lot. Don't worry about getting to the toilet. Drink.

Sunday, i visited my friend in the hospital.  He is also a newbie.  I walked into his room and said, " you got dehydrated,  right," he said "how did you know? " I answered "been there,  done that ".

It will take a while till you realise the new signals for thirst. Till you do , drink consciously. 

Z


Marcie
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April 28, 2018 1:47 pm  

4-28-18  Gattex.  After being in Gattex for 2 months, I developed some possible YES, POSSIBLE problems.  So, as of now I am off it.. Been in and out of the hospital 3 times in 2 weeks..  So haven't been myself lately.  Hopefully, I can get back on Gattex.. by June..  I have a great team from shire company and my doctors.. So it is in their hands.. By that I mean the Doctors hands. 

 

Gattex was working for me and now this..  I found that the loose out puts were less and I was getting color in my cheeks.  Also some weight gain..  My Mag. went up very well and did not need those extra 2 bags of that each week.  I was feeling better.  

 

So, I pray I can get back on A.S.A.P. :-)                   Marcie.

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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