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Pseudo Blockages, malabsorption and severe anemia...am I having fun yet?  

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sjlovestosing
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October 11, 2019 7:31 am  

Linda,

I think it's safe to say that we are all proud of you! I guess I tend to be up front with people - must be my age! lol. If something hurts, the doctors knows right away. I have always been a baby about pain, I guess. 

Regarding our dishwasher, my hubby and I usually wash and dry the dishes together, so we don't usually use one. We plan on keeping the plumbing for it, in case we ever sell our home, but will remove the dishwasher and make a removable cabinet in its place for my extra pots and pans, etc. 

Stella


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LK
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October 11, 2019 5:12 pm  

Thank you everyone! I was not even nervous! I really was not sure he would listen the way he did, so it was a nice surprise. Your encouragements to talk to him about it, helped a lot!!! When raising our kids, we have practiced to not ever respond with anger no matter how shocked we may be, and to tell them we would get back to them later to respond from whatever shocked us. Everyone makes mistakes right! His willingness to sit back, listen and then respond helped a lot too. I had not yet eaten at that time so not having to struggle thru the pain helped a lot too. 

Stella it is so nice you have a standing date with your hubby every evening! Way to go honeymooners! Lol  How many years have you logged? 

My eyes have been inflamed again nd the right one wanders more these days. I just don't  get all of this sometimes, but knowing g there  others out there has helped a lot. 

Thank you all and have a great weekend. Thanksgiving here is this weekend, Monday.  Making the pies tomorrow. Lol!


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john68
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October 11, 2019 5:28 pm  

Hi Linda, You have a great weekend enjoy your baking and Happy thanks giving to you and fellow Canadians 👍🇨🇦


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LK
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October 11, 2019 5:54 pm  

Thank you John!  I have  always loved big family dinners and tho we are having a smaller one here avd nof travelling, I still enjoy it just as much. Being together as a family is important to me.


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Dona
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October 12, 2019 1:42 pm  

Linda,

I commend you for speaking to your doctor, AND getting him to listen to you as an individual and not just 'The 8:15 appointment". Way to go!


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LK
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October 13, 2019 1:38 am  

@dona

Thank you Dona. It was not easy by any means, and I have no regrets. The look on his face told me it struck an important cord.

Linda

 

 


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SqueakyandLiza
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October 22, 2019 2:48 am  

@dlkfiretruck

Linda,

All the best for you tomorrow as you see your new GI doctor!!  May you have a safe trip to Kelowna and back, and may you get all the answers you are looking for!  I think it is safe to say we are all pulling for you and hoping there is something that can be done to help with your tummy problems. ❤️😀👍


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LK
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October 26, 2019 10:05 pm  

Update on GI apt.

Liza, Thank you so much. I saw your post early a.m.  but could not stop to say so.  I know you understand.

Well, after giving my history to the receptionist, I was very quickly  taken to the doctors office.  I met this young smart doctor. She asked several questions & had a look at my body, hair ect. & said I was too boney! I am well aware of this issue but at the same time, it was nice to have it acknowledged.   She was very thorough. I instantly felt comfy with her. It turns out she is  a GI who also specializes in people with malabsorption issues and she helps with planning a good diet suitable to the personal needs of my blood work. She has tested for every vitamin I am to have  in  me in order  to function. She gave me a few recipes for treating dehydration at home,  and a web address for people dealing with short gut syndrome and malabsorption from it. I have only used the recipes so  far and not checked out the website yet. I will explain why,  in a bit here.  

She  talked about  home TPN and what is involved to some degree & in hospital TPN as well.  She  does not think I am there yet either. We talked  a bit about intestinal transplants and that because there is likely so  much scar tissue, if that were to happen & we are so not there yet again, thank Heaven,  I would require that gift from a child. The thought of this  saddens me deeply. But even having this conversation makes the reality of all of this on the horrid side.

At any rate, because of distance, she is going to work with me over the phone so I don't have to drive all the way there & back. I appreciate that so much! She had the opportunity to view my blood work  from back in June and admitted she was surprised I actually made it into the office, due to the recent blood work as well. She said I must be very determined. Truly, I am desperate to not let this thing get the best of me! The biggy  to me here, she does not believe it is crohns disease at all, but damage done over the years of an abusive bowel!

She wants me to keep eating as I am & more if I can...I can't. Deep sigh. She thinks its appalling that we have to pay for iron infusions here when if I lived there, I would be covered,  different town, same country! So she is going to fight for me, because I just don't  have the energy for it anymore. She is also going to do her best to get the other lacking vitamins I need covered as well. We will see I guess....I hope pray  she succeeds. Lol. I really like her and am pleased with the outcome so far.

I have  been very tired since Tuesday and for once, things finally feel like they are under control. 

Now, last week, my sister called and asked if I wanted the new puppy they had  for 10 days. It is a lot of work for her and not something she expected would take so much time and energy, her anxieties were very high.  I had  been praying about one for 6 mths. Plus, the biggy here, I wanted a sign from Heaven that I was doing the right thing.  I thought for sure my sister was going to succeed at the puppy training so I never thought a second about the fact that I might get Misty if she did  not work out. I was so shocked when she called me afterc10 days, and said I was getting a puppy Thursday. Really, at this point in my life,  I was thinking a puppy, realistically, a year down the road if at all, but I kept praying.

It turns out (aka Misty) Missy as I now call her, is everything I ordered. The approval from Heaven  I asked for, well, Missy was born ten years to the day my husband had died. Can you imagine that?! She is an adorable little girl dog & has been fully paper trained for a four days already. I just love  her & my senior dog, Romeo, has had no beef with the sudden intruder on our life.   She sleeps well in her kennel at night and is just so much fun to play with & watch & the grands in the basement all just love her. They take her down in the evenings  to help tire her out because like my car, she has more energy then I do!!! She already climbs over the board I keep her in this uncarpeted end of the house with, and her tiny ribs are now padded a bit.

She seems to be growing overnight and has the sharpest little teeth I have ever met! Teething for sure! She knows  "no Missy " and loves to cuddle. I Can't ask for more then that!

Thank you all for caring and for reading. I will update as need be.

Linda


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Dona
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October 27, 2019 5:22 pm  

Linda, It really sounds like you have made a good connection with the new doctor. And she seems to be listening to what you have to say.  This sounds very promising.

And, YEAH! Puppy. Nothing wrong with some more love at home. We have always gotten cats that way, strays or ones that nobody wants. Its always been a great reason! We only have three right now. I am happy that your older dog is O.K. with her too. Nice.


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Tony
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October 27, 2019 7:51 pm  

Hi Linda,

 

So, so very glad to know you're off to such a great start with the new doc! Looking forward to more and more great news concerning your health.

 

When you discussed your new puppy, I actually felt a pang thinking Romeo had passed away, such a relief that the new pup is an addition and not a successor. May they both bring you years of companionship and joy.


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LK
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October 27, 2019 8:07 pm  

Thank you Dona and Tony.  Stella and John too, I should have said about Romy,  right off the bat I guess, stoma sight!  (hind sight) Haha. Yes, Romeo is up and kicking still. He is being so good about the kid even when he was sleeping and she tried to nurse his tummy and could not get anything then nipped him with her sharp little teeth. She left marks to! He is very much top dog still and she knows it. Today Missy waited till she was outside to do her business in the morning. I only started that today too.  She hits the paper every time other wise. 

Yes, it was a good apt. And  it does feel like that light at the end of the tunnel is being held by someone who knows what they are doing! I was so impressed by Dr. ROBBINS and DR. SIMPSON, my internest. It is a relief really.  I am still so tired and having a puppy is not what I would do at this time, but she needed a home with patience and she got it.  I'm just glad I did not have to pay for her. Now for  the rest of her puppy shots?!? Yikes, $ major changes to happen.

Thank you for  your thoughts regarding this apt. It means so much to me to have  such great support and friends here. Hugs to you all!


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SqueakyandLiza
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January 9, 2020 9:33 pm  

Hi Linda,

I was just thinking about you today, so thought I would find this thread and see how things are going?  I hope you are well and that the dogs are behaving themselves for you.  😀


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LK
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January 12, 2020 7:49 pm  

@squeakyandliza

And Tony too, yes it is time for an up date,  and now that I know more,  I will  get on it ASAP. I may need two or three days first,  as I am badly anemic again and just  need to gather enough energy to get this done. 

Thank you for asking Liza and Tony.


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LK
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January 20, 2020 12:54 am  

Hi there...yes, it is time for an update.  Things have been slowly going  further down hill and, at last action is going to be taken. 

About three days before Christmas I got a call from my new GI specialist.  She deals mainly with people who have short gut syndrome and malabsorption issues.  I am still amazed to some degree that my GP was not the one who referred me to her but, a replacement doctor when he was on holiday. I have waited a long for this, maybe too long. 

Before I continue, please, anyone experiencing like symptoms,  know that I have a rare situation and this is not the normal for anyone.  If you have questions about something happening to you please be encouraged to continue looking for answers and even maybe taking a bit advantage of a visiting  holiday, replacement doctor! lol!

My  GI doctor is in a town about two hours from where I live and has decided that due to the results of the latest blood work and the fact that our little hospital has decided, sadly, still, not to cover the cost of the Iron Infusions when other hospitals in  British Columbia, Canada  do.  My GI  has decided that she will look after this issue as well.  Apparently it is the choice of the individual hospitals, shame on them for not recognizing that not everyone can afford six hundred dollars or more a month and a whole day to pay for and receive a needed infusion of Iron in this form.  Like this is my choice to be anemic.  If I were a person who wanted to wish awful things on certain people,  you can only guess what I want to wish on the powers that be.   

So, getting to the point of the update here.  My GI doctor has told me that she is going to admit me to the out of town Hospital she has privileges in.  I will be in for  several weeks and she will  start TPN and Iron Infusions.  Because I am badly malnourished still, with no sign of change, it is time to do something, and  probably overdue. Once things have improved thru the TPN and infusions,  she also wants to start Tube Feedings.  If you have read anything I have written about NG Tubes you can imagine what I think of that idea.  The first few weeks of tube feedings are issued thru an NG tube! What fun!  After that, because her intentions are to try to "fatten" me up and because of the state of what is left of my small intestine, restore some nutritional value.  If my body accepts the onslaught of nutrition, she will transfer me down to a hospital on the  Coast and a permanent G Tube that will be surgically placed and I will receive my nutrition thru my abdominal wall into my stomach or intestines, depending on the surgeons choice.                   

I simply dread being away from my family and my dogs for any length of time, but if it means I can walk my dogs again and cuddle the little Grands longer, then I guess I am going to go along with this plan!  The last Hospital is a good 6 hour drive from my home, so I have told my family they are not expected to make the drive or deal with the extra expenses. With the use of cell phones and as I recently learned about, Messenger, there is NO need for this to happen.  It seems that my body was trying to make its point of needing further help and has convinced me to accept the coming treatment.  About ten days ago, and, yes I talk about my body in a third party way,  it started collapsing on me and letting me hit the floor a few times! I did not pass out and nothing was broken other then my pride...as there were...witnesses!  Ouch! No harm other then bruises, but okay already, point made! lol!  

My new puppy has been a huge distraction for me and drove me to outdoor train her, with great success I might add,  much earlier then I was wanting to.  There is a reason you get a puppy in the spring and not the fall!  I would have preferred to wait to do the job in much better whether! Minus twenty two is not too friendly to stand in waiting for an easily distracted  puppy to pay attention to the fact that she needs to poop!!!  She is like a magnet for collecting snow in her hair and needs a melt down session in the sink after a new snowfall.  My son actually shoveled an area in the front yard and compacted the area so she can  be outside without becoming a live snowball!  She is a smart little girl dog and just adorable  I might and  add even on the pretty side for a dog! lol!   She still loves to try, and has succeeded, in pulling  my senior dog around the room by his tail and recently discovered his ears look like fun too!  This is hard to catch as she mostly does it when I am out of the room, but it explains the distressed barking from the ever patient and kind Romeo! I now lift Romeo over the gates keeping her off carpeted areas she has not yet earned the right to be on without supervision, this way, Romy can follow me when I leave the house as usual.  This seems to have mostly put a stop to her tail/ear antics, tho when I am not looking,  she will at times still try. 

My son and his wife have said that they will live upstairs when I am away and then they have access to  the  lawn as needed which will be easier on them and the teens all around. I am so grateful for the TLC that this little family has been showing towards me, and  even the patience required for a puppy and a senior dog. Romeo is very sweet, but set in his ways, he is so easy to care for and will let you know what the time of day is! Fortunately he likes to sleep in too! Big bonus when your anemic.  Puppy is kennel trained but when it is eight in the morning she too lets me know and she is shown the front lawn without argument!  This really is great all around!  Any issues will be with continued puppy  training.  But I am now sure they can pull this off!      

My hair loss has continued and  ofcourse the fat loss has been troubling to me as I find sitting and laying down are very boney experiences and worse yet is getting into the bath tub.  I need to take baths because I really do not have the strength to stand long enough to shower and tho there are seats in the shower stall, they are like sitting on cement to me.  I am much warmer in a bath too, tho lately even that is becoming more painful.  Does anyone know if they make such a thing as a waterproof padding for in the bath tub? 

I am still dealing with bad anemia and when I spoke to my specialist before Christmas she said that my Iron is basically non existent and other vitamins and such are very  low in the bucket.   I knew this already as the human body is an amazing communicator when it needs to be.  I like to be as active as I can and am still looking after myself, and my home  fairly well, but there are times I need the help of my son and his wife to get me some dinner. Morning is my best time of day and I do as much as I can then.   The kids live in my basement suite, so it is easier for them to help with a few meals once in a while, and I contribute  by supplying a part of it.  Someone taught my son to cook amazingly well! lol!   These two are a real blessing to me and I thank God that they live so close.   At the same time, with the brand new little baby girl, I try to stay out of the way and not be a problem while they are adjusting with  two teenagers and this new baby.  I am so loving all the snuggle times I get to have with our little blessing!                                                         

A most recent change in things with my body has been my feet.  They were the first things that told me I was in a bit of trouble here.  Years ago, I learned all about Plantar Faciitis the hard way.  It was a sneak attack then and was again last week.   With my feet suffering the most boney issues, this has been a real challenge to try and get thru.  The burning has been insane and the pain more so.  Thankyou Tony (ileosTony) for suggesting I have this looked into when I am in the bigger city, I will do that without a doubt!  The numbness in them has increased but the pain still gets thru.  If this is Tarpal Tunnel Syndrome, like carpal tunnel, only of the feet, then I can find that out in May when I go to the appointment for nerve conduction testing. here's hoping I do not have to re-book.  

Other then obvious changes all around and  more fat loss, and hair loss, at this point things have kind of balanced off as I seem to be holding a steady weight now for about 6 weeks.  I have learned a nifty way off adding elastic to pull my pants tighter around my waist line thru the knowledge of youtube! lol!  I am holding my ground and my sense of humor I have been told, so this is a good thing.  I expect to hear from the hospital to be booked in before the end of January, but anyone who has waited for a bed on a non-emergency basis knows that can change in a matter of  minutes. I have struggled with and  finally come to grips with this plan and am okay with being away from my family and friends...and my dogs, as it is obvious something really needs to change.  

Anyways, there you have it.  Thank you all for reading this and for the patience with its length...again.  lol!  Liza, thank you for finding this forum for  me when I could not.  That was very helpful all around and Tony, your advice and kindness are equally appreciated. John, your support is wonderful too.  Eric, I was thinking about this again the other night and want to thank you again, for this site  that you kindly  created and saw as important.  You have provided such a wonderful place to vent, ask questions and not feel alone!  People, because of the support we receive here from all of Erics hard work and continuing work, please make sure when you order something from Amazon that you include the link to VeganOstomy to help support Eric in his hard work here. Thank you to all who took the time to read this.  I will do my best to keep it up to date when I can or thru the help of friends I have made here.  All the best to everyone!

Linda 


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SqueakyandLiza
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January 20, 2020 2:48 am  

Linda, I am so happy you will finally be getting the help you need and that you now have a doctor who specializes in the specific issues you are dealing with. I’m sure it will be hard to be away from home that long, but it sounds like your son and his family will take good care of the dogs and the house. 

Thanks for updating us. You have a lot of people here who care about how you are doing. 


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Tony
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January 20, 2020 6:54 am  

Linda,

 

I have to echo Liza's sentiment here. It's a relief that you have everything in place for when you finally get a bed, and surely none of us is as relieved as you are about that. The things you push yourself to do in such a state never cease to impress me. You put me to shame with your determination and stamina.

 

I've transcribed many a report about plantar fasciitis, and I can only guess at the pain from those descriptions and yours as well. Also, I'm glad that there's a consideration of ruling out tarsal tunnel. There are few things as painful and even fewer more so than entrapped nerve tissue.

 

I look forward to the days when you've got your nutrition, energy, and pain all under control.


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LK
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January 20, 2020 9:37 pm  

Thank you Liza and Tony.  It has been a long haul for sure.  I am beyond tired in many ways and my energy and determination seems to come from the good Lord.  I think I am really in survival mode now.  If anyone here has experience with Tube Feeding and the installations of it and what it was like, and the changing of the tube,  I would sure appreciate it. 

Also, after one of what we thought was a final and actual diagnoses, it looks like we can cross Crohns Disease off the list too now.  I think this  is a good thing.   My GI has told me that my guts are just not normal,  But I think I already new that.  lol!   Some type of  mess up Genetically she believes...honestly, of all things.  It only took fifty plus years to hear that.   I find this interesting as I had already decided that when I  die, and we all will at some point,  I am going to donate a few of my innards to Science.  They can fully eviscerate me then.  lol!

Thanks again everyone! I sure appreciate the kind words and support. 

Linda


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Dona
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January 20, 2020 10:08 pm  

Hi Linda,

Thanks so much for posting this update. We are all pulling for you. I am happy to learn you have finally found some caring and competent doctors. Thats a real step in the right direction. Too bad you have to travel so far to get the care, you need. Hopefully you are on the right track now. And so lucky to have family care ( and the love of dogs!).

So sorry to hear of NG tube in your future ... I am sure we ALL hate them.

As to the pain you feel laying in the bathtub,  You might try to line the tub with several layers of exercise mats. They are usually closed cell foam, and do not absorb water. Yoga mats seem thin, but maybe  something thicker would work. Try searching under sporting ( ha!) goods at Amazon to see what might be available.

Keep you sense of humor, its wonderful.


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SqueakyandLiza
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January 21, 2020 3:42 am  
Posted by: @dlkfiretruck

Also, after one of what we thought was a final and actual diagnoses, it looks like we can cross Crohns Disease off the list too now.  I think this  is a good thing.  

It is definitely a good thing. The Crohn’s club is one you don’t want to join!  I’d like out, but apparently it is a lifetime membership. 😕


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JTVT
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January 21, 2020 4:55 pm  

@dlkfiretruck

I wish you the best, Linda, with speedy healing. 
It sounds like you have a plan in place. Can I ask why the NG then G tube? Is there an issue with your esophagus? Or pain with eating or a lack of appetite? Both an NGT and G tube still rely on your small intestine and it sounds like this is where the issues are. I always worry a bit when I hear about permanent G tubes as your GI tract likes to be used and digestion starts in the mouth. By no means do I want to make you more worried than you already likely are! I too have had issues gaining weight and needed iron supplementation. It’s exhausting for sure. BTW, Fe infusions are pretty much standard of care for IBD patients so I’m glad you’re going to a facility that can provide them.  PO iron is useless in most patients, particularly those with absorption issues. 

Again, I hope you get the care you need and you feel better quickly. 


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