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Blockage question.

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(@sami10)
Joined: 6 years ago
Posts: 4
 

Good Morning Robert ..  It is good to know that grape juice does the same as apple juice. I have not been drinking it as wasn't sure what it would or would not do. Thanks for the info, will be picking up a bottle of Welch's this week when I go shopping. 

Hope everyone is having a blessed day.  I am so thankful I found this forum. 


   
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Marcie
(@shulmjs)
Joined: 6 years ago
Posts: 1510
 

Linda, Robert, etc............. I went to that special upper G.I. Dr. today.. This is about that $300,000.00 per year injection jobber I was talking about awhile ago-  called Gattex... This I may be only $5.00 per month...... This injection helps people of malabsorption and lost fluids like me and hopefully lessen my infusions of 3 x  a week.  As the body will depend only on the I.V. fluids... bla bla bla............ So I said "lets go for it"  I  many be playing Russian roulette here as it can cause blockages. :-(  I have not started, just the paper work..  I need some help from you guys.. Kinda scared..  Wish me luck????????????? Marcie.......... 

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


   
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(@zvitusk)
Joined: 7 years ago
Posts: 396
 

We love you , Marcie. 

All of us.

And we are rooting for you. 

Okay, that is the first bit of healing help.

More to follow. 


   
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Marcie
(@shulmjs)
Joined: 6 years ago
Posts: 1510
 

Z, thank you...   I am so confused...... and scared....but I will get all my ducks in a row before I do this.. I do need help and anything right now!! This is a new drug, and Dr. only has one patient  on it as of an ostomy.. (that makes 4 patients in this area)  As dear kyla asked me, "are my issues THAT bad?" That has been in the back of my mind for months!!   I will call my surgeon tomorrow..... But she wont know much either as it is a new drug.. and she is new also......  but that is a whole different questions I have for her.. another Dr. appointment .......... :-( but got to do what I got to do before hand..)  I tend to jump in with both feet like I did today-go for it I said... that is the paper work = money payments etc.  

Ohhhhhhhhhh  Myyyyyyyyyy.. :-0

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


   
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Marcie
(@shulmjs)
Joined: 6 years ago
Posts: 1510
 

Hi Robert, long time no hear.... :-(  I went to that G.I. dr. today.. as u proberly saw or will read..   your question of the insides.....

The inside of the intestines are like fingers......  They can close and open.. IF the "fingers" get to  long, blockage.. They are or can be in different areas of this area that u speak of.. They r senative-wavy........ little suckers..:-) Normal......... Short bowel . S.  has more of a open fingers-(somewhat I am doing) so, we get the loose bowels...... as ostomates. I go off and on.. so cant keep the fluids or nutritions..-so I eat more to keep the blood work even.. and still no weight gain.. and kidneys issues.. liquids are an issue for me.. as you have read.. and for most of us.. No large colon to suck it up.. we ALL have this.. me? got it more so....... And most out grow this early.. I have not  3 1/2 years....... Does this help with your question?  I did ask for you.. :-) and for  me.......... More to go!!!!!!!!!!! Marcie..

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


   
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 LK
(@dlkfiretruck)
Joined: 7 years ago
Posts: 1450
 

Marcie...I went to google and googled...medication...gattex, just like I have it here.  I was a little blown away at the side affects.  Side affects are something I always take seriously.  There are a lot of life threatening side affects here with this drug and they do not give the example of how many people are affected by them... I realize drug companies have to cover there stomas...ha ha ha...but messing with the pancreas and possible pancreatic cancer let alone cancer period is really something to take seriously.  You said you have been thinking about this for months.  I would like to suggest something to you.  When you go to your doctor, no matter who  she is,  you need to ask her something.  Ask her if she  often suggests drugs with such a list of life thretening disorders?  If yes...why?   Has she had good outcomes with them?  Maybe not that way...soften it a little...  She may be a bit careless.  Was she the one who told you about the other patients on this drug?  Her honesty is vital here.  You need to find out if  there are other drugs she can  prescribe without such a list.   If you do not want to ask such a brass question...then really go armed with as many questions as you need to know before you go onto this drug.   Also ask her if she can arrange thru her secretary to give you the names of  the other patients on this drug.   Talking to them (if you can be in contact with them or to give your phone number to them and ask them to call you) who are on this drug may make your decission easier.  Anything you can get in information means you are an informed patient.  You may also go to your pharmicist as I do...because they often have a better idea  of other drugs out there that do the same thing with a lesser  harm to the individual.   If I understand it right, in the States doctors are often given a throw back finantually on the medications they prescribe, in Canada it is not that way as far as I know.  If anyone has a different knowledge on this please let us know.  This may be a reason she is suggesting this medication to you.  If she has four other patients  on it, I would be curious and careful.  

I understand some of the fear of being malnourished,  it is scarey.  I am experiencing that right now also.  I have fat that is no longer in places I have tried to loose it my whole life.   I too have to see my Doc and find out exactly what my numbers are for malnourishment.  My underware are loose, my armpits that fell out have disappeared,  the fine layer of fat that gives a person a nice lip is also gone, and,  my hands are incredibly boney and I can see the tinniest veins that I have only seen when I am malnourished.  It scares me.  When I brought these concerns up to my  33 year old son...he replied..."well Mom...you are getting old!!!"    Hit me like a wall.   I was not impressed.  It took me a whole week to figure out what to say to him.  When I told him that it was not normal to loose fat in places like this without trying and that something is not right here...he re-looked at all the evidence and realized that when he shone a flashlight at  the center of my hand in the dark...he could see the red color of warm tissue  right thru  it,  he saw the ever so tiny blood vessels all to   well....he became allarmed and insisted I make an appointment  immediatly.  He is driving me in.    He asked what I was afraid of?  I really do not want to spend an extended amount of time in hospital again.  I hated it even tho it did save my life by being there.  I hate the thought of being away from my family and my little dog...so he assured me they would all spoil Romeo and give him extra attention if I did end up in the hospital.  

Anyways, Marcie...  I feel concerned for you  going onto this medication.  I realize to tho that I do not see all of you in the picture and the already thin Marcie could be less thiner then she looks or even worse.   With your system being down...can this drug cause you more harm?   Will you be able to fight what it dishes out?  

KNOWLEDGE is power Marcie.  Equip yourself with as much as you need to know to make a very informed choice and then be confident in what your choice is.  You are the only one who can decide if all the affects are worth it and  ask your doctor to hook you up with the other patients so you can talk to them too about what they have experienced.  You have that right.  It is yours.  What you do with the information is  up to you.  Do you need a second opinion on this medication from another doctor at the same time keeping this doctor.  If in doubt...find it out.   Trust your decission.  

I hope that everything turns out nothing but the best for you.  You have courage lady!  Keep us up to date on the outcome and how it is going for you.

Linda

Linda


   
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(@zvitusk)
Joined: 7 years ago
Posts: 396
 

I don't understand .

  1. You live between Boston and NYC.  Two of the greatest centers of medical expertise in the world. 
  2. You are connected to the internet and all the information that needs to be swum through. 
  3.  Gattex is a brand new drug with horrible side effects. 
  4. Your doctor has 4 other patients that she put on Gattex.  We suspect that she has a vested interest in this drug. 
  5. While you have developed an emotional bond with said doctor,  have you started to look for a second opinion? 
  6. There are medical reference groups that might be able to guide you to finding another doctor to fall in love with. 
  7. I know that I am being harsh with you, but you are frightened and need to be  calm and collected. 
  8. Go send your medical records to Harvard,  Yale. Columbia,  ask for referrals. Get on the phone and beg for information about gattex. 
  9. Do not rely one one source of information. 
  10. Do not be a guinea pig for the drug.
  11. Don't forget that we love you. 

Hang in there and don't panic. 


   
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Marcie
(@shulmjs)
Joined: 6 years ago
Posts: 1510
 

Linda and Z.. I can be brass.. :-)  I did ask for the other patients to call me.. Dr. said n.. Your right about the kick off.. Never thought of that..  Yes, I thought of the ginnie pig bit-I feel that I will be.. all the information you have seen is what is out there.. Nothing more including the Dr.  This is why I will see my surgeon and MY PRIMARY DR. Never mind my Kidney dr. IF I have to cancel out my infusions to do so with my appoitments I will.. I can always change a day at infusion.. OR go 2 x a week-which I really want and began with.. As I go to the cancer center, I will ask to see the cancer Dr. himself-even tho I am not a patient of theirs.. infusion is different hospital system than the one I formerly went to for this operation.. I do have a call in the this Dr. for questions and if not answered--I will out a hold on this until I see my Doctors of MY choice.. Yes, Knowledge is important.. Got some today :-)  :-(   ------   There r no second options out there.. Maybe a call into the Cleveland clinic.. Yale is 1 1/2 hours drive on a good day.. , my drugest is a good  idea..but, I am sure that they don't know much either..  this is 3 years old now.. But I will swing it by them..they are very good to me..  I have trust in them..

My picture of full length?  go to clothing.. or I could sent you pictures email.. don't know how to do it.. maybe Eric will????????????? I am 5' 8" tall 113 pounds..  was 165 when I went in and came home @ 136 pounds and never saw that again!! I get pumped up with 4 pounds of fluids every time I go-and by the second-early third day? I loose 4 pounds.. or more..  when I am in the hospital, I gain weight-just laying around..but found after my own testing of just laying around and doing nothing at all, I gain.. also. 5 pounds..When I do a bit of house work = GONE and more pounds lost.. !! Back to the lower 100's again and then it is a fight..  CANNOT HOLD FLIDS.. I eat like crazy--my 43 year old son today went with me and we had lunch.. Still the same remark-- MOM, you eat so much!! More than I do!!

Yes, sick thin is what we have Linda, I got old real fast!! shocker.. hands I can see through.. etc. like you.. My arms? tooth picks, thighs? they were once very nice legs.. now? wrinkled.. except the calfs.. still have nice calfs.. shall see tomorrow huh?  SURPRISE!!!!!! As of this peration, the sun hurts me.. although, I was never  sun person, but just a few minutes to warm up the bones? got to go in after 5 minutes.. When I was 64 years old people said that I looked as I was in my early 40's.....  Even still wore little tiny 2 piece bathing suits.. GONE!  Boobs? I was 40 double D cup, now? haa!! cant find them.. Well that is all behind me and trust me I have no butt either.. :-)  sure was a shocker.. I know that I wont be the same again, and that all the damage is done..  I am 68 years.. Sure was a lot to accept along with my Nellie.. and all of her dress to pick from bla bla bla.. That med. Predizone -sp- has same side affects also-- even meds on T.V. same the same side affects.. They give you on this information on only drug that is in it.. Dr. was not a sales man.. but very up and 2 doctors want me to have a quality life..  I have been down, and many times, I really don't care if I die.. then again? I am happy.. I feel a common forward march is best and I have tried this.. I have been so sick, I just said to the Dr. maybe it is taking me longer than most.. 

Yes the kick back is much money--    ohhhhhhhhhhhhhhhhh

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


   
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 LK
(@dlkfiretruck)
Joined: 7 years ago
Posts: 1450
 

Hi Robert...The push and squeeze out the poop thing was told to me by my surgeon.  He was an amazing older man who retired recently.  I trusted him with me so much that year I was in hospital as he would take time to stand by the bed and just talk.   He stood in the window with the rest of us the day I had my son climb into the truck of the new/old car so I could see from four floors up just how big the trunk really was.  He was especially interested in how I was managing the long stay.  He actually allowed myself and a couple of nurses to pray one time just before they put me out.  They always played the CD I had brought into surgery also.  I really appreciated the time he took.  It is vitally important to chew your food very well before swallowing it.  I figure if I have not broken it down intounidentifiable pieces or so, then I need to chew it more...my Mom used to say to chew your bite of food 16 times.  I actually do not drink prune juice... I  "can't get it past the gums...hence the  "and V8 juice which I really love" part of what I wrote above,  but I do know that it is very good for you.  I rely on V8 Juice and I actually add extra salt and pepper.  I guess I should throw in a beer and have a bloody mary,  but...I do not handle alcohol well. My hubby always teased that I was an easy drunk..tho I have never been drunk.  I either get sleepy or very giddy when I have had some so I just avoid it most of the time.  I live in what is referred to as Wine Country. Really great eh?   Being Canadas only desert,  we have moisture problems here with summer heat and it can get really bad sometimes,  thank heaven for airconditioners. I do notice that the more I am out the more  I have to change my bag, which I have to do everyday  in the summer.  In winter I can get two to four days out of one and then my skin reacts badly.  I found going back to the very basics of changing the bag over made the difference for how it stuck and everything...but the heat just made for more changes.  I was loaded with excema as a child and used to strip off my clothes and go and run around with the goats in the farm across the street.  I imagine my skin is just very sensitive,  I was concerned about how the bag would stay on me before I had the surgery.  I can only keep a bandaid on my skin if I use paper tape.    I think leaks are just a part of the whole process...except when there is a surprise rush problem...especially at night...and a way of saying hey you...stoma owner...change the bag eh!!!  I do appreciate the C shape tapes for leak prevention and especially on clothing.  As far as clothing goes...I use a produst called spray  kleen on anything and everything around here.  It has never bleached clothing and has even removed  old stains,  it dissinfects and is enviromentally friendly.  I have used it for years and found it when we started camping with the children.   It even took blood stains out of a matress when my nieces nose bled all over the place in a hurry one morning.   The trailer was borrowed by my sister inlaw and she was mortified by the stains.  I was told about it four hours later and it had dried.  It worked like a charm.  They were all amazed.  I was also  to some degree,  as I had not used it much before then...so this was a great surprise.  When we moved five hours away from my favorite store...I asked if they could bring it in to the new store for me and they did.  I find that most managers are willing to do that for a customer if you ask nice.  Thank you for saying your stooma size.  I really hopr it answers some questions for you.  I also think Marcie is right about the size of the intestine depending on what it has to pass...thank God it can stretch,  as one that will not is a royal pain in the stoma.   I hope you had a good night...it is now 10:44...I think I fell asleep here a bit.  

Linda

Linda


   
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FelicityG
(@felicityg)
Joined: 7 years ago
Posts: 257
 

So that motion to push is called peristalsis, it works like a wave to squeeze matter along our intestines. If you ever do any stoma watching you can see it wiggle some, sometimes it retracts back tightly to our skin with these movements.

Oscar is 7/8ths of an inch (22 mm) and compact currently, after surgery this round Oscar was 1.5 inches (38.1 mm) and was kind of flabby from the swelling. The actual area Oscar comes out of is not much bigger than he is currently.

Found an article on peristalsis, keep in mind the dietary stuff might need to be tweaked depending on your health status. https://www.livestrong.com/article/517213-foods-that-stimulate-peristaltic-motion/

I drink lots of soda, need to cut that back. I also drink Gatorades for hydration help.

Crohn's Colitis, Ilieostomy, Proctocolectomy November 2017


   
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(@zvitusk)
Joined: 7 years ago
Posts: 396
 

This brings me back to my high school days when we studied biology. 


   
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Robert
(@njewell1)
Joined: 7 years ago
Posts: 699
 

Hey Marcie I think everybody here has some good ideas like second opinions on the Gattex sounds like a lot of bad side effects . A second opinion never hurts . Especially when it has you scared . I know you have been thinking about it but still don't just jump into it . I thank you for asking your Doc about my question  that is another good explanation . Felicity has some good info on the site she found and Z and Linda have some good points .  Marcie I know your scared take a deep breath and relax and think about things before making a big decision to do the Gattex .  Of course we will all be thinking about you and backing you what ever you decide  . Just please give it plenty of consideration first . I know you are scared Marcie but for what its worth we are all here for you in what ever way we can be .....

Linda I guess this might be a weird comparison but I guess our intestine works much like a snake when he is eating and digesting his food in the way it moves thru his body buy muscles pushing it along .

Proctectomy , Ileostomy , Ulcerative Colitis


   
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Marcie
(@shulmjs)
Joined: 6 years ago
Posts: 1510
 

Thanks Robert.  Yes The snake thing is what the dr. told me also--  IF you go and eat a coco nut Easter egg- as a total solid-you will see this bump going on its way-- be careful of how you eat such an hard eating object.  Just an example if the food is large, solid, sticky,  and you eat the whole thing? Interesting results..  :-( Sooner than later things will pass one way or the other.. FLUIDS...

Primary Dr. said go for it.. (gattex)May help with fluids.  Still dragging my feet.. More Dr. to hear from.. 

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


   
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 LK
(@dlkfiretruck)
Joined: 7 years ago
Posts: 1450
 

Marcie...I  had Vit. B12 shots for a few years to help stabilize some of the issues I was having.  I gave them to myself.  Once a week sometimes twice.  I had been dragging my stoma way to long.  My hair was falling out and I was,  simply put...way too exhausted to even move from  chair to bed.  I got my doctor to check my levels and he said I needed the B12.  It took a few months but gradually I began to feel better and eventually my hair grew in,  in the thin spots.  I also learned to not drink too much water as my body did not know what to do with the extra, and expelled it quickly,  but I did drink my 8 glasses of water a day and 3 of milk.  Milk had helped me to feel full when I so often felt hungry.  Just thought it might help in case they have not checked your levels.  Vit B12 is very important for a lot of things.  See what the doc. says.  They are inexpensive and lasts a good amount of time depending on what amount you need.  He let me stay on them until I had stablized energy levels.  They are certinly not normal by any means as I tire  way too easily some days.  Today I had to go grocery shopping.  I had had five days of conatant bathroom time and I needed food.  I had to go by myself,  Daniel was not available but I have to eat right.  He is going to Silver Star mountain to my sisters cabin for a few days with the guys from his work and there boss.  They always have a fabulous time.   Anyways,  by  the tiime I was at the till I coud hardly unpack my buggy.  I asked and recieved the help I needed.  They got me out to the car groceries and all, and then once at home Daniel came and to take the groceries in for me.  I was shaking, and ready to cry because I was so tired.  I always have a bottle of Gingerale when I grocery shop it helps with the thirst.  But I had not eaten anything until I got home.  I sort of deserved the fatigue.  Anyways I know now that something is not right with my  levels of anything right now and I do look forward to my doctor apt. next week.  I have also had a lot of hair loss again and dread brushing my hair.  I plan to ask about the B 12 again.  I think it is time.  I know that my energy level was way improved on the shots.  So, I think it is important.  Sometimes our bodies just can not keep up and if we can't eat before we go out that can create a problem.  The last time I left my buggy to visit the restroom, someone put my groceries back on the shelf for me!  That will never happen again.  I think I will also tape a prepared note to my buggy next time giving them my destination but I sure did not have time last time to do that.  I ended up just going home.  Check with your doctor if you think thisma be a problem.   

Linda

Linda


   
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Marcie
(@shulmjs)
Joined: 6 years ago
Posts: 1510
 

I have pernicious anemia. From the Swedish side I am 1/2 Swedish mom - French Canada.. I have been giving myself B-12 shots for over 40 years..  1 cc monthly.  This disease cannot accept any oral forms of B-12.. Your may have this issue or another issue of this B-12 level.. Check it out.. You can loose an arm, leg, etc.. if not noted. A very important vititam. -sp- 

This can cause intestine issues as well-you may need more.. if your body can absorb it. Mine cant.. Knocks it right out. GONE!! 

Blockages/diharriea-sp- can be an issue if this B-12 is not present on a normal basic.. Like any functioning body, must have a happy level.. As we r special now, it is important to have more blood work than the normal.. how r u going to water ski this summer if grocery is a issue ??  GEt in shape now and go for it!! 

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


   
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 LK
(@dlkfiretruck)
Joined: 7 years ago
Posts: 1450
 

Marcie...well, consider me re-educated on anemia,  and now newly on pernicious anemia.   Interesting stuff.  I did not know a thing about pernicous anemia before, but I did know that some people have a  misformed blood cell, I just did not know what it is called...now I do.  I learned a lot.  I also learned today that a test I had a few weeks ago came back and I have low oxygen levels when I sleep at night.  Bending over to hook the dog into his walking vest is another time I get short winded.  Interesting to learn that it is a sighn of anemia.  Very intersting to me actually.  I see my GP on Monday and now I am really looking forward to it. 

I really look forward to trying to ski again. It should be a lot of fun.  I want my son to come along and his family ofcourse.  I have been the same size all my  adult life.  I have also excercised on a very regular basis thus allowing me to stay in shape.  My muscles are strong and I appreciate that a whole lot.  In my surgical area, I have very little tummy on me and my only concern for skiing might be the incision area as they never sewed it together.  But...they did put my bellybutton back. God bless our bellybuttons!  Like the useless tonsils...they too are there for a reason.  I made a huge pot of chilli today and put 12 containers  in the freezer.  It was very good for an early dinner and will likely digest beofre 8 pm.   Groceries...aka...food does that to me.  I eat it it goes within 6 hours, but always the same day.  does anyone else deal with this issue???   I did three loads of laudndry while cooking and chopping.  When ever I buy garlic heads, I always peel the whole lot and place them in a jar in the fridge so they are ready to use in a snap.  I was so glad they were ready for me to use today as I am vey tired...just not sleeping well again.  Thank you for clueing me in to the pernicious anemia.  I will bring the anemia thing up with my doctor again.  He is always running tests of one kind or another, but I really only see him if things have changed like lately or if I need repeats.

Have good evening Marcie.....................Linda...PS...I think we only have my  "Rose"  right now for names, I have not heard of another one yet.  But.....you may know of one I do not.

Linda


   
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