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

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LLNorth
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January 21, 2020 8:48 pm  

Linda, have you ever seen this movie, Silence of the North, which takes place  in Alberta?  If you have online access (in the hospital, I mean) I think you can watch it on YouTube. While you are laid up you might enjoy watching it - I have seen it a few times and really liked it. Thinking of you. Take care.  LL

here is a link to a description - 

https://www.imdb.com/title/tt0083079/plotsummary?ref_=tt_ov_pl


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sjlovestosing
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January 22, 2020 8:07 am  

Hi Linda,

I am sorry to hear about all your difficulties, but am glad that you finally found a doctor who actually listened to you and is trying to give you the help you need. My prayers are with you.

God bless 🙏

Stella


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 LK
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February 4, 2020 10:46 am  

Hello all....well, it seems I have a date to be admitted to the hospital. I have been told that Feb. 10th is the day! Tho I dread being away from family and my two  puppies, the need to be is more  evident every single day.   

Yesterday when  I crossed  my yard and the yard of the elderly twin sisters next door to go for a visit, my knees began feeling like sponges and my legs  very heavy. These are not big yards by any means! Getting up the two  steps proved a challenge, and once in the house I quickly removed my coat and practically fell on their  couch to avoid hitting the floor! Floors cause bruises these days! 

It was the first time I saw their "Twin" thing in action, as they both at once said, "it's like that  eh, muscle weakness!" Lol! The looks on their faces as I dragged  my left leg where it belonged was none less then a  scrutinizing mother thing! I am 61 and they are 98. There is a fountain of intelligence and experience there most of us lack times two! Lol! You can not pull anything  past  these ladies! They have raised  six adopted  children  together  with one handicapped and blind! There mother  lived to 104 years of age! 

So, plans are made, I am as ready as need be and have been abscent from here learning about tube feedings.  Tho I have read your replies, my eyes are causing enough issues to prevent me from responding when I wish,  but,   I have also recently learned this is likely from the Ankylosing Spobdylititis with nerve root damage that I have. Lots of burning  going  on makes it hard to read with a screen in front of me even when darkened to the max.   

Dona, a yoga mat to go in the tub is a great idea. I will certainly look into it further. For now I have been using folded towels drowned beneath me and my boney butt! Someone also told me to see a hot tub store about something like that too. Maybe they will have a weighted one so there will be no floatation experiences to fight with when I have so little energy!  Tho, I admit that could be a fun "splish splash I was taking a bath" time with the right music on!!! Lol! 

JTVT...thank  you  for  replying. I don't mind answering questions at all. They will start with the TPN because my body has lacked full  nutrition  for about two years now.  The malabsorption issues have been interesting to watch the damage it does to my body as a whole but also in separate areas. Hair loss is attributed  to Anemia and absorption issues , fat loss along with many other things to the malabsorption. I mean this  has even affected the comfort of wearing my glasses and ear plugs at night. Something I did so my chain saw snoring hubby could avoid having his too large Uvala removed! Lol! ( I can tell you this now because he is deceased, but he was a great  big chicken! Lol!)  leaving me with sore ears in the morning where the plugs have always sat without issues. Lack of that bit of fat  put pressure  on  the bones and cartilage of the outer ear canal causing sores.

So the TPN is to get a good dose  of vitamins and minerals into me that  I have not been absorbing for two years. The G tube for the Tube Feedings is more permanent  and will be able  to run thru the  night, trickling in nutrition to  help  me  feel alive again. Once I am home it can  slowly run over 8 or so hours while I am sleeping. Hopefully this can fatten me up to some degree.  This  should allow for  more  of  a time for my guts to hopefully absorb the nutrition  it will bring.  When your body is slowly  starving you to death, you try what is offered to help you survive.  I'm pretty sure I can still eat with this feeding tube in place, but  I have learned most find it is so satisfying that they do not  need to eat. Having a rare disease has added to the complication of abdortion issues. Its been two years and it is very obvious to me  that I need  help. Oxygen does  not always get to all my muscles and it has added to the  weakness I already deal  with. It is exhausting to be malfunctioning like this for so long. Like any new  stoma patient, I want  my old life back, and yesterday is not too soon! 

LLNORTH...I love a good movie  and better yet, a good Book!  So I will be looking for  "Silence  of the  North". Thank you for the suggestion.

Stella, thank you too for your prayers. I sure appreciate them. It has  been some  what of a long  haul for  me and perhaps I needed  it to convince me it was time for help. 

We are only hunan and tho fearfully and wonderfully made by our creator, God,  it is high time to deal with these issues. I look forward to seeing my body hopefully repair itself from the added nutrition it will be recieving.  

Thank you Eric for the opportunity to learn and to share as we go thru   a most interesting turn of events in our lives. Such great insight you had in starting this amazing site! Keep up the great work! 

I will do my best  to continue the updates here. Tho, if I can't, for whatever  reason , I will  be asking a friend to do so for me.  Thank you all for  your support,  good wishes  and prayers. 

Linda

 


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john68
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February 4, 2020 11:03 am  

Hi Linda, it’s hard to have to get up and leave all behind but it’s a means to an end. The very best 


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SqueakyandLiza
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February 4, 2020 1:26 pm  

Linda,

I can only imagine how difficult it was to type that update with your eyes bothering you so much. But I am so glad that you did. I’m sure that many people here have been worried about you, and are as relieved as I am that you will finally be getting the help you need. 

Two years of suffering getting progressively worse is awful!!  It is about time that you finally have a doctor who recognizes what the problem is and has a plan to fix it. 

I am looking forward to hearing how the planned course of action is going. You deserve to feel normal again and I’m hopeful that this will work for you!!  All the best. 😀


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LK
 LK
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February 7, 2020 5:23 am  

John and Liza 

Thank you for your kind words. Tho it is hard  to leave home and my little dogs and family, the events of the last few  weeks make me very aware it is time to accept the help if offered. Anemia alone has me taking so many sudden naps a day  its crazy.  I am so thankful to my new GI for recognizing my need here, same for the needed support I can get here thru VO.  The opportunity to talk about what is happening does help a lot. 

Thank you everyone! 

Linda


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sjlovestosing
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February 7, 2020 8:35 am  

Linda,

My prayers are with you and so is God. He has never left you for a second. Think of Him as enveloping you in His love, mercy, and peace. "Cast your cares upon Him for He cares for you."(from 1 Peter. I can't remember the exact verse - but you probably are ahead of me on that one!)

Take care and God bless,

Stella


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LK
 LK
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February 7, 2020 2:49 pm  

@sjlovestosing

Hi Stella.  Thank you for your prayers, I rely on them too. Tho I have God before me, beside me and behind me, my faith in him can not fall. Ever the omnipresent God, I know he's got this as I am in his hands. Should my body fail me, I have no worries or fear. 

Thank you....

Linda


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SqueakyandLiza
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February 14, 2020 3:39 pm  

Hi everyone,

Linda asked me if I would come and post an update here. 

She finally got the call yesterday afternoon that they have a bed ready for her at the hospital in Kelowna, so her son was going to be driving her up there this morning. 

She hasn’t been complaining here, but she has been going through a really tough time. She has been so weak and malnourished that I don’t even know how she has been taking care of herself. Her son and his family have been a godsend helping her out. 

She will be in the hospital for several weeks from the sound of it. I know she will be checking in here and posting updates when she can. It will probably be easier as her strength starts to come back. 

I’m sure she would appreciate prayers, from those inclined to do so. And good wishes and encouraging messages undoubtedly mean a lot to her.  Let’s show our Linda our support and how much we appreciate her here on VeganOstomy. 😀👍


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Dona
 Dona
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February 14, 2020 3:56 pm  

Thanks for posting the update Liza.

Linda... sending you all the best. Please let us know how you are doing when you are able to.  Hopefully you will get the care you need and get stronger soon.


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john68
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February 14, 2020 4:40 pm  

Yes thanks Liza, Linda is a real lady the World could do with more like her! Best wishes Linda 💪🇨🇦👍


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LLNorth
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February 15, 2020 1:46 pm  

Best wishes, Linda 💐


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SqueakyandLiza
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February 17, 2020 4:52 am  

Hi guys,

I have another update from Linda. After getting to the hospital Friday, her room was not vacated, so she had to spend some time in a hallway alcove with a curtain around it. She has been through the ringer already in the 2 days she has been there. An iron infusion, super low blood pressure, several blood draws, a couple transfusions, lots of tests, something that made her really loopy, and a stretch where they teeter-tottered her bed so her head was low. She said she had the giggles yesterday, so she is in good spirits, but very tired. It sounds like she is getting good care and the nurses are very nice and it sounds like they are enjoying having her there. 

She is in a room now, and sent me a picture to attach. I know she is reading posts, even when she doesn’t have the energy to reply. I’ll post more updates as I get them. 😀

1581933128-C233BFC2-1024-45A6-998E-9D47D6F492BA.jpeg

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john68
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February 17, 2020 5:28 am  

Cheers Liza, Linda the very best wishes🙏


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sjlovestosing
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February 17, 2020 7:26 am  

Thanks, Liza for the updates. Linda, wishing you all the best and God's blessings.

Stella


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Dona
 Dona
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February 17, 2020 12:47 pm  

Wishing you well, Linda. Looks like you are in  a place with good care. And looks like you have a lot of good stuff dripping into you. Sending good wishes.

 

 


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LK
 LK
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March 10, 2020 12:49 am  

Hello Everyone...Time for me to make an update myself.  Liza, I can not thank you enough for taking the role for me when I could not. I appreciate you so very much my friend! Honorable mention to Tony and John for your kindness and support thru pms also. 

However, Liza, you were way too kind over my giddy episode! LOL!!! I would try and sum things up without being too long but,  Eric will have to create another Lounge area! lol!  I will leave it at what Liza has said and simply tell you she made it sound way more dignified then it actually was! lol! Bless your heart Liza!! lol.

I was in for one whole week only but have been home trying to recuperate before the next Iron Infusion.  During my week in the hospital, I have never had so many tests done in one stay as this stay included.  Blood work galore, sometimes twice a day and twice four times a day,  X-rays, an MRI, and ECG,  an Ileoscope with some of the best drugs I have ever experienced. I learned a whole new terminology for LIGHTS OUT!!! lol! By the end of the week I was told that I had a sensitivity to IRON of all things.  Thru this and the scope which told the GI that I have a "kink" in my bowel attached to my abdominal wall right where my stoma is formed, and before that, a lovely narrowing, and before that a ballooned section of bowel. All this is causing many of the issues I have with the severe pain every time my guts decide to process foods. I also have and I already knew I have an extremely short gut.  So short  I  was told it was abnormal to be doing as well as I manage to do and live with, and to carry on with what I am doing food and fluid wise. Weight loss being credited to the Liver issues with the iron and all sorts of stuff I do not really understand and don't feel a need too.  What the heck, I'm 62 now, we all die sometime from something. I'm not dieing any time soon as far as I know, but I am okay with not having everything tickittyboo if you know what I mean.  Things could be a a lot worse and the iron infusions seem to have given me back a some sort of a life like I like to live, so I'll take it rather then leave it. 

The iron sensitivity makes a lot of sense based on how I reacted to the Infusions back before my Dad died in June and July.  The Iron infusions I was given in the hospital that did not give me any reactions is one they give to patients on Dialysis. It is very expensive and covered by the Federal Gov. and I just found out on Friday that the coverage of it was approved!!!

Next step is my doctor will have to arrange for the local hospital to infuse them for me.  The only issue with this infusion was two days later, the arm the infusion was in swelled hugely and became very red, painful, and HOT!  When I stretched my arm out in front in me it felt as tho the vein was going to shatter into a million pieces. Phlebitis I was told by my GP. I had waited to see him because I was still so exhausted and could not arrange a ride, so at home I was icing the arm almost every two hours for 15 min. or so.  This seemed to tame the beast some until it healed up and settled down.  There was a nice obvious bruise for my GP to see in the end. If this continues...it coud be an issue. 

Once I had been in the hospital and had three iron Infusions and that whack of tests, I was told that there was really nothing more they could do for me and certainly no more infusions at that point but will likely always need them, so I had the choice to stay there or come home to the quiet, family and my dogs....my choice was obvious. Plus, why rake up a bed when I could manage at home and someone else was waiting. The next Iron infusion is to be in the next two weeks depending on my Iron levels, but they want to get my Iron up to 116 or so.  Last count was 87 and I am thrilled to report I have been housecleaning, cooking up a storm and even yesterday prepared a full three course meal for my family members that took such great care of me when my Iron was 2. This includes the dedicated grands who took the dogs outside for me with little to no warning. When one is Autistic  and sudden change does not come easy, this was a task she tackled with courage, but always did willingly and lovingly,  even towards the dogs.  I have nicknamed this particular grand the newest "Dog Whisperer"!  She did awesome and even made room on her bed for my old dog to sleep beside her! Thank you darling Grands! My G.son was equally as heroic if you ask me. I could hardly stand at that time let alone having enough energy to hold myself up while sitting. I had to lay down. Not much choice there or my body simply collapsed under me. My meals were brought upstairs to me every night for a few weeks until I was admitted for treatment.  

During this time, my Eczema also flared and my fingers and tips especially have been the victim of repeated nasty long splits in them.  They are painful, they swell and bleed.  This made texting an issue let alone holding a pen.  I like to write but could not do so. Emptying and changing my pouch became a huge issue for me and I started wearing plastic exam gloves that I washed while on my hands...for the environment, to avoid having to wash my hands every  time I went to the bathroom, as this only made the eczema worse.  Yes, I've tried different soaps and lotions....its all so frustrating! Only the prescription cream really works...eventually.

Being that there is not enough gut left for surgery to repair and remove the bad areas, I will carry on as usual doing what I can trying my best to not let this gut get the best of me! Not always easy, but totally possible.  If I can manage to put some weight back on, I will be happy with that. 

They papers I was given from my GI about the homemade re-hydration recipes really paid off and even my eyes have benefited because of her knowledge.  I think I am in Love with this young woman.  I feel like she saved my sanity!!! If your interested I will be glad to write them out for you here, or feel free to PM me. But, this is not what Eric or the site recommends. This is from my GI doctor. most ingredients you will have in your home. 

My dogs are a wonderful distraction and we have actually gone for a walk every third day for now, but this is a huge improvement over anemia at 2!!!  I loved walking my dogs about three times a day and hope to get right back to that in a few weeks or so. It has been over a year since I could do that regularly let alone a simple walk to the culdasac.  I also went grocery shipping by myself this week but needed help getting them in the car and the house. 

My dogs are so much fun and my little puppy is not so little anymore. Missy is in her 7th month and how I managed to paper then outdoor train a puppy during this time, I am not sure I will know.  She can be a challenge and has energy to burn, she must have a good iron count! LOL!!!   However one day I noticed a wee pee puddle that had dried on the floor and appeared all glittery in the sun shining thru the window. On closer examination I took a picture and because we had a shot booked for her and Romeo, I showed the vet the picture and told him she had been hard to train because she was peeing a lot in one day.   I thought this was a learned behavior because she liked the bacon reward treats so much, but it turns our my puppy has a bit of a kidney issue common to this breed, I still need to learn about and requires a special food.  This food was about 40 bucks a bag...YIKES....but it was worth it because she is now peeing right on schedule with Romeo so no extra trips taking dogs outside 30 times a day.  I was so pushing myself that I had to actually sit down on the driveway to be out with them.  If Missy went out Romeo had to follow to make sure she did her business!  When this got the best of me and I had started collapsing, my basement dwellers took over for me after about 11 a.m. I could handle the mornings but any time after that I was toast!

I will see if Liza has time to post a picture of my pups for you all. but she is having a bit of a time herself and I know she is busy.  Thinking of you my friend! 

I want to thank all of you for caring and for your kind comments and communicating with me.  It is a privileged to be a part of such an  open, kind, encouraging and caring group of people.  In my fifty some years of dealing with bowel disease, I have never had such  a support system.  I feel so happy for those that are new and finding this site right off the bat, you all are light years ahead of where I ever was ten years ago when my ostomy journey started. 

Thank you Eric, you deserve a medal!  

Thank you all again for all you mean to me. It was encouraging to read your replies while I was unable to reply for myself. 

Linda 


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SqueakyandLiza
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March 10, 2020 1:24 am  

Linda,

I am always happy to post a picture for you. 😀

I hope this one is okay. 

1583817862-8E8D3ED7-8DF1-461E-BB55-3D635FFD8AA7.jpeg

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john68
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March 10, 2020 3:15 am  

Hi Linda, You really have been through the mill and back out, life’s journey can have bumps but you’re had a few too many, good to see you post again and loved the picture of the wee doggies. Take care 🙏


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LK
 LK
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March 10, 2020 4:54 am  

Liza, that's perfect! Thankyou again Liza! Meet my dogs folks...their legs are covered in snowballs that require melting in a sink of warm water.  Missy on the right, Romeo laying down on the left! So much work but so much fun! 

Thank you John. Yup, it is time for some  improvements  over here! I'm glad to be able to think a little more clearly these days! Lol!


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