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

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LK
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August 3, 2019 2:48 am  

Hello everyone. Thank you all so much for your kindness, thoughts and prayers. It has been 3 rough months, with July being the worst. My Dad had been fighting cancer for 8 yrs. Starting in his bowel, then lungs, liver, and at Easter this year bone cancer moving very quickly from there. I admired my Dad something fierce. We were raised with lots of love, a gently strict but fun guidance. adults. We were given more opportunities then most kids could hope for. His strong determination was obvious to me from an early age and I lived that man very much. We will alm miss him but my Mom will be so lost without in many ways. Her dimentia has progressed greatly in the time and stresses of Dad illness. She new she was loosing the man she spent 66 years loving and supporting, and maybe because I had lost my own special love,  I think it was hardest for me to see her trying to deal with the times she was "present" and the times she was not, fading in and out of the wicked reality. Her confusion must be none less then truly frightening to her. Thank you all  for every ounce of support I nabbed from your messages. They were all heart felt and welcomed into mine.

It's getting late but I also want to update on my health here too. This week I had a GP apt. and a one with my internist. She wants me to see the gastroguy again. I am anemic again tho it did change in time for me to pull out some energy to look after Mom for 8 days. My hemoglobin is up some, so this helped tremendously! I am to go for more Iron Infusions and  the one ordered, is not covered. So the letters have been in progress from my doctors to get this somehow covered. The bladder and sinus infection set me back some and I feel it.

My heart is behaving, and she says surgery because of the bad bowel situation is not an option at this point because of the high risks involved and the shortness of bowel available. She asked if I can somehow live with the pain? I have been living with pain in my gut for so many years that sometimes I forget it is NOT normal. I am somehow oddly okay with this. It frightened me to be told of the psuedo obstruction disease, and the end results, but honestly  unless it us 110% necessary, I do not even want to entertain the end result. The other pain, bladder, spine and muscles are in check if I behave. I maintain my living quarters. I like to think I am sane enough to deal with these things and do frequently take it to the Lord in prayer. Tho some may think that is not sane. Lol. Can't please them all. I distract myself with my hobbies and crafts and a good book. 

I was taking sneak peeks at VO, while away and have missed the internet. Never thought I would say that! Thank you all again and special mention to Liza for updating for me. I appreciated it very much. Good job!

 

 

 

 

 

Linda


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LK
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August 11, 2019 4:31 pm  

What a week! I spent about 7 hours on the computer adding 1 response to a forum and due to "anemia", I fell asleep about 7 or so times for 5 to 20+ min. each time. I had to repeatedly re-read what I wrote and try to figure out what words like this meant  "Jfvrdhgszghx." It seems my fingers type when I fall asleep. Loosing my train of thought editing & re-reading each time. The scary thing is, I was not aware I was in need of a cat nap like that. It made me wonder if this is the kind of thing that happens when one falls asleep at the wheel of a car. Now your here, now your waking up! What the heck? 

Its been a particularly noisy week. Our forest fire has planes and helicopters flying over my house from dawn to dusk. Considering the fire size, the smoke is not bad at all. In 2015, we had to evacuate when a fast wind threw a fire up and over a mountain, dropping chunks of burning debris  down into the nieghbours yard across the street from us. Watching it travel thru the day, we suspected it'd move our direction, so we packed the important stuff ahead of time.

When they knocked about 12:30 am, we grabbed what was at the door at left. We were told we were efficient and cooperative, but  really, we new to be ready and scared! The fires heat was bad. We were allowed back the next afternoon. We keep a list of what to pack for times like that, devided it, making it easier to gather and go.

I heard from my internist again this week after blood work. She has contacted my GP to set up repeat iron infusions. The ones I need are still not covered. Because she is a Kelowna doctor, she has no hospital rights here,  my GP has to order them. He is out of town for 2 weeks. His receptionist tells me the special request went out weeks ago and they have not heard back yet. I wonder if I showed up in an ambulance in the ER if they may wake up then?

I feel like I am treading water in a mud bath! Pain seems worse at these times as well as my level of patience. But, l can still laugh at myself or Romeo when he or l do silly things, my dog is such a great buddy and listener, he never argues, and if I had the proverbial million dollars, he would be worth it! I love him!

She also wants me to see the gastroguy again (I want to make Salsa...ha!) and would like him to reconsider surgery when I am well enough and gained some weight. Tho l am eating well, I have lost 4 more pounds.

Thank you all again for the kind thoughts, wishes and prayers over the time of my Dads passing and the travel I have had to do. I was so glad my son was able to have some time off work and drive me. The 1st morning we left, we were half way there and suddenly this bad smell was in the car. No, not that smell guys! The battery light had come on. Pulling off  of the highway, the car died! Two hours from home, two hours from the coast. It took 1 1/2 hours for a tow truck. Watch what you buy for a vehicle. Our non mechanical brains thought we just needed a jump. Reading on how to access the battery we found we had to remove the bumper and 1 head light to get at it! Go figure. Unable to do so, once at the mechanics, he told us it was likely the alternator. So, arrangements were made for my son to get a ride back home, as it was a day trip for him, the car stayed there, due to further towing costs and no safety road package.

My sister drove up to get me, and about 7 hours later we were at my  parents place . Ofcourse, I had my dog with me  so I had no place to wait but in the heat in front of a Dairy Queen. They were kind enough to put an umbrella up for me, we had lots of water, snacks, and a collapsible dog bowel along...and my luggage. I was going no where fast!

 For my son, almost $900.00  later, 1 week, another bummed ride, and the best tow package one could own, he came back to the coast for one last chance to say goodbye to his Papa. My Dad died peacefully the next night.

Dealing with a sluggish memory bank, I am also still dealing with hangover allergy congestion and the rash on my legs from the antibiotics is almost all gone!!! When it rains it pours!

Another trip, a hotel stay compliments of my sister, and a funeral, has left me somewhat exhausted. Not to mention another blow from my friend, Anemia! Its been real if it's been anything. When theres more, I'll let you know...if I remember. 

 

Linda


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SqueakyandLiza
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August 11, 2019 9:22 pm  

Linda,

Boy, when it rains, it pours. But you handle it all with such grace and a great sense of humor!!

I had a follow up with my kidney doctor last week and this is the first time he hasn't ordered iron infusions. I was low, but not quite so low to need the infusions. Instead I am just going to double up my daily iron pills. Can you do your infusions locally, or do you have to travel somewhere to do them?

A couple times, there has been a faint smoky smell in the air, and I've wondered if it was your fire. I haven't heard about too many others close by. 

Hang in there!!  Let me know if you need anything. Technically if I needed to, we could do a 6am wound dressing change, I could be there by noon, stay for a while and still be home for a before-bed wound dressing change. 🙂

Liza


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IleosTony
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August 12, 2019 9:18 am  

Linda,

 

I won't soon forget how solemnly I was reading your post. The look on my face must have been grave indeed. Then you came out with the joke about the Smell, and I had to laugh out loud. I read the word smell and thought exactly what you knew most or all of us reading the post would think. You have an inner strength that you yourself frequently downplay or deny altogether, and your story coupled with your reaction to your own plight is an inspiration. I thinhk of you when I feel tempted to feel sorry for myself over the piddly inconvenience and awkwardness surrounding my ostomy, not because you have it harder than I do but because of how you press forward with no shortage of equal parts humility, stamina, and kindness toward others through it all. Thank you for your willingness to make yourself vulnerable by working so hard to tell your story.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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sjlovestosing
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August 13, 2019 7:34 am  

Hello Linda,

It sure looks like you've had more than your share! But as Tony said, you have a fortitude that is amazing. God certainly is with you through it all and giving you the strength, courage, and all that you need to get through this. 

Stella


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LK
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August 13, 2019 12:15 pm  

Liza, attach the app  for the nearest washrooms and I'll put on the kettle!  However, you should pack a bag, we seem to have the gift of gab! Lol, So Sorry Eric. I do try.

Tony and Dona, Stella, John, Eric ,all of you really, the amount of support I feel from everyone of you does not fall thru the cracks! You see, there are none where I'm coming from! Lol, sorry.  My plate may be full, but as my folks always said, eat your dinner, you only live once, there are children in a far away places, that would gladly be you, change your underwear everyday in case your in an accident,  it could be so much worse, suck it up and get on with life, your fine right now, go and play! Used in the correct places these comments made a lot of sense.

The importance of moving forward is not lost with me. I can sink,  but I choose to swim, Lol, Learn a craft or take up a  hobby. Sure the occasional pity party and  good cry may be required, but set a timer, as is the significance of not dweling on a bad time in life. Most may have heard the phrase, "Go, with God", tho this is not the plan I had for my life, right down to being a young widow, well, fairly young, in terms of marriage years, not age, lol, I can work with what I have been given. I am still kicking,  I can't scream anymore from a wrongly placed NG Tube,  but I can fight my way thru a bad situation, after all, I took 1 Karate class. Do to experience, I can & do try to move forward. I find the best way to do so is to take one day at a time, roll with the punches, duck the curve balls, stretch the way a baby does, nap like a cat, get a puppy, and Go with God before me, and, as the kids say, and, "with my crew", only mine is on computer of all things and from the VO site. You are all such gems and so worth a million bucks. Thank you all so much for caring, I can feel it in your words and likes and PM's. Your the best support a gal could ever have. :-)  Thankyou.     

Linda


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LK
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August 17, 2019 11:53 am  

WILL THE REAL GASTROENTEROLOGIST PLEASE... STAND UP!

  Hi again...I discovered something rather unsettling this week that really rightfully ticked me off.

My GP is out of town for a few weeks and the visiting GP, after 5 min. looking at my file,  asked me why I was not being  seen by  a gastroenterologist? On giving the name of the one I have  been seeing, insisting I was, he informed me I was NOT seeing one at all. 

Turns out the guy I see is a surgeon and may well  specialize in intestinal surgery, but he is not by any means a gastroenterologist!!! 

The visiting GP has since made a referral for me to see a very real  gastroguy, and he's  about 4 hours away from me.  So many pieces of the puzzle fell into place from that one appointment. 

I was awake all night again with  bowel pain and so exhausted and uncomfortable from head to toe, I could not even sleep, again. The visiting GP tells me insomnia and anemia for some reason go hand in hand.  He spent 1/2 an hour with me asking questions to make a clear imformed referral. I feel like I have hit a brick wall. WHAT??? was my GP THINKING? He always referred to this doctor as a gastroenterologist, and because of that, I have too.

This new guy was going to dig thru my file and send all relevant info and tests on to the Real gastroguy.   I'm not sure if I should laugh or cry at this information!  

I will let you know when I get my apt. for a this real gastroenterologist. Thank you for being here. 

Linda


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SqueakyandLiza
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August 17, 2019 12:10 pm  

Oh Linda, I am so sorry this mixup happened to you, but very glad that they caught it and you are being referred to a proper GI dr. I wish you were close enough to see mine. I really like him. We have noticed a big difference in the GI's knowledge about Crohn's vs the colo-rectal surgeon. I hope you experience the same thing and finally get the help you need! 


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Dona
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August 17, 2019 3:53 pm  

I am so sorry to hear that you haven't been seeing the right doctor. It feels like  a brick wall right now for sure, but at least there is now a way forward.

I think this experience is all too common. It took me many months to get a referral from my GP to see a gastroenterologist. I practically begged him for a referral  each time I saw him. He never did diagnose me correctly and never ordered a scope. Things got better after  I got to see the right specialist ( gastroguy)  and then the right one of those ( doctor #2). It takes so long to work through the system, while at the same time we just get sicker and sicker.

I no longer have the same GP!

Good luck and best wishes going forward.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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LK
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August 17, 2019 7:53 pm  

Thank you Liza and Dona, and our Tony, I know, I almost don't know what to think either, let alone feel. The thing is, this is not my first rodeo with doctors. Tho I realized something was not right, I couldn't put my finger on exactly what it was...until Thursday!  Then, I just sort of felt numb. 

It is somewhat of a relief to know that my friend who is disabled by way of Diabetes, a recent leg amputation, and bowel disease, Jim tells me this is his gastroguy. He has had nothing but praise for the man, even before I knew  his name. I sure appreciate the experiences shared here  This kind of thing does happen, and I have to wonder why doctors do not listen to a patient about such things as gut issues! Rediculous really.

LOL....Things are looking up....?

Linda


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john68
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August 18, 2019 6:44 am  

Linda that’s a real bummer!! But it’s been a lucky break that the new guy spotted it. 

ileostomy 31st August 1994 for Crohns


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IleosTony
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August 18, 2019 8:26 am  

Linda,

 

What an outrage! Still, now there is a bit of hope that your difficulty getting better has a lot to do with receiving care from a doctor who really had no business giving you that care as a practitioner of the wrong specialty for your needs. I'm very glad that your substitute GP found this error. Is there a way for you to switch GPs when your regular one comes back? This really fries me crispy! If there's anything I learned in my work as a medical language specialist, it's that doctors make mistakes all the time, but they usually try not to. This doesn't even fall within the realm of try not to; it seems like such a basic thing to know which specialty is appropriate for which system and constellation of symptoms.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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LK
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August 18, 2019 12:08 pm  

John,  Thankyou.  It was such a last min. apt. Too.  The pharmacy called early afternoon and said a repeat triple was required so I had to go in. It was a lucky break to get the apt. for the next day about 10 am, and the same that I was able to even get a ride in. I have to call it an answer to prayer.

Tony,   Thank you.  Lol.  I think I am too exhausted to be upset about anything these days, but, if I could put my thoughts down without 1st making notes, they would have been very similar to yours both here, and in the pm to me the other day...another TQ.

There is such a shortage of doctors in our area right now that I am lucky to have the one I do have.   

Please, if anyone has dealt with anemia at any level and experienced these spontaneous cat naps and or side effects to iron infusions ( not yet started again) I would appreciate hearing your stories of what you have experienced and how you dealt with them. 

These drop of the dime cat naps, at rest,  or just sitting down cause  me to drift off suddenly, drop the phone in my lap, and jerk awake. Often having to re-read or redo a response and log in again, starting over. So glad I choose not to drive at this time... 

Linda


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Dona
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August 18, 2019 5:00 pm  

Hi Linda,

I had anemia on and off I think, before my surgery. It was when I was getting all the infusions of immune suppressants and was having constant diarrhea and bleeding. I don't remember having cat nap type episodes, but I was sleeping every chance I could ( not easy with diarrhea as well we all know).

I did have several infusions of Iron. What I remember is that they were just fine, but took a really long time. Like 4 hours or more. I napped then, for sure. I used to get them right after whatever  infusion I was getting.  The only one that really hurt was potassium. Watch out for that one ... they can thin it out if you cry enough.

Good luck.  I do think you will be on a better path now.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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VeganOstomy
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August 19, 2019 11:37 am  
Posted by: @squeakyandliza

We have noticed a big difference in the GI's knowledge about Crohn's vs the colo-rectal surgeon.

This is a concern. There are GI's and there are GI's who specialize in IBD - you always want the latter if you have Crohn's or Ulcerative Colitis.

With surgeons, a colorectal surgeon will almost always be better for someone with IBD vs. a general surgeon. 

Posted by: @dlkfiretruck

Please, if anyone has dealt with anemia at any level and experienced these spontaneous cat naps and or side effects to iron infusions ( not yet started again) I would appreciate hearing your stories of what you have experienced and how you dealt with them. 

I've had anemia due to chronic bleeding and not being able to eat anything, and fatigue plagued me non-stop. I did not have an infusion or blood transfusion because of it, but I was close and probably should have. I'm afraid I can't offer up any experiences that would help you in that case. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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john68
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August 19, 2019 11:59 am  

Hi Linda, Like Eric I was having a lot of bleeding before my surgery, I was given blood transfusions and the difference in energy levels in a short space of time was amazing. 

ileostomy 31st August 1994 for Crohns


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SqueakyandLiza
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August 19, 2019 12:56 pm  

Hi Linda, 

I can't remember if I've told you this or not. I have always been borderline anemic. Nine years ago it got so bad I could hardly walk down the hall at work without getting out of breath, so went to my GP and she did blood work. She called me 3 times the next evening after getting the results (I was in a class). The third message said I scheduled you an appt for tomorrow morning. See you then. When I got there, she told me I had basically lost about half my blood on the 3 months since my last appt and I needed to get to the emergency room for a transfusion right away.  It was amazing the difference the extra blood made.  I started taking iron supplements daily and was out on progesterone to help with the female problems that were causing the blood loss.

I also have been more anemic since my surgery last year. I have had 8 iron infusions since November. My last visit to the kidney dr, I was borderline so he didn't order any more. They are annoying since they take so long, but I don't have any side effects from them. I don't notice the difference in energy, like I did with the transfusion.


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LK
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August 24, 2019 5:17 pm  

That darned Anemia eh!!!  Thank you ll for sharing your anemia issues.  I wonder  what it is about infusions that give such side affects?  I was told if my hemoglobin dropped 2 more points that I would require a blood transfusion.  I felt just as horrible from the anemia as from Iron Infusions,  and noticed the affects about 2 1/2 days after the 1st infusion which continued for the duration and a long week after the last one. We are lucky to be able to get blood transfusions, and I so appreciate the need of them.  My hubby was  blood donor for years, 26,  and my son is a blood donor.  Heroes come in many forms and forums!  I appreciate you all sharing your story here.   

 Also, it may look like I am always logged in here, but when I logged in from my phone last week I was, and still am unable to log off from it.  Eric is aware of this issue but I think it really is just my phone issue more then anything now. I was too busy napping to be on so much! Eric your a champ and thank you for your time in this matter. 

And now this...Anemia, is no picnic.  One of my worst days last week, I was unable to even muster up the energy to change my pouch in border line need of changing.  I had layed relatively still all day and impromptu insistent naps were worse then ever.  While apologizing for a wrong like a child begging for a candy, I have learned insistent naps are forgivable to my GPs receptionist, if it is a medical reason and you tell them your Iron score! Wasting a 20 min. apt. was unforgivable to me, but the anemia made it forgivable. Bless her heart!

That same evening, after a day of a very quiet stoma  and after laying on my back snoozing on and off all day, I slightly shifted to my right side in the evening, it was enough to put my guts into full on action.  I woke yet again to realize my pouch suddenly filled to the max and needed desperately to be emptied.  Making my way to the bathroom holding the weight close to my body, safe on the throne, I began to plot how to open such a full pouch safely without making a mess.

Aware I was in a bit of trouble, with the velcro unrolled I decided a little prayer was in order. However, I made the mistake of closing my eyes to do so!  I promptly fell asleep then and there on the toilet.  Unrolled opening in hand...when I woke up to a quick movement, it was to the sound of a gently but warm swish and a splatt splatt or six! Yup, you guessed it! Lol. I did not even have energy to get upset. Surveying the damage, I looked at my dog who was sitting back a few feet brave feet away with this look of dismay as if to say... "human, what have you done???" all over his adorable face.  As I surveyed the toxic waste spill, I realized I had not yet moved the paper towels, toilet paper or the garbage bags and spray cleanser to my bathroom.  Eyeing the only roll of TP, about a 1/4 full, I new I had to figure out something. 

It was late and my phone was in the other room. I new I would be in worse trouble if I woke my son to come upstairs and rescue me. Pondering where to start I noticed my dog, Romeo gingerly making his way around me & out the room to sit back further, but with full view to watch the antics of his human and how she intended to get out of this one. He seemed so wise at that moment. About 45 min. into the cleanup I noticed him place his nose and eyes under his paws, shake his head a bit & make this sort of  grunting noise, that  sounded a lot like laughter. An hour later, garbage was taken out, laundry in process, I was headed to the shower.  Exhausted, sterized, fresh PJs and thermal socks warming my feet, both butts in bed, 1:57 a.m.,I swore I would never confess this blunder to any one!  Yet, here I am, another one down! Lol!

I have to ask, how do you all get your pouch opened and drained safely with out such a disaster?  I am open to jokes now, butt please avoid the ones about doing it with your eyes wide open and your brain turned on, tongue in facial cheeks, jokes are welcome. There was no room for even a smallest puff of air in the bag, full to the max with the product from watery ileostomy!  Once unrolled, how do you safely get the contents in the correct place without making such a mess? Lol...ugh. Care to share your too tired story too?    

Linda


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john68
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August 24, 2019 5:45 pm  

Oh Linda you poor dear! I am so sorry but I did smile reading that.. I have like many been sound asleep and woken to an over full bag and yes  have done the very dodgy walk to the bathroom. The next time your canine friend has an accident you’re going to have to look the other way. Your a trooper Linda 👍🚽

ileostomy 31st August 1994 for Crohns


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sjlovestosing
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August 24, 2019 7:06 pm  

Linda, 

You certainly are a trooper! What a remarkable attitude you have. I do hope that the doctor can figure out how to correct your anemia. Falling asleep in a sitting position - especially on the loo - can certainly lead to trouble. Personally, I kneel before the throne when I empty my bag for sure. It's a little hard on the knees, but then again, I don't have far to fall if I happen to fall asleep! lol

Stella

PS John, how do you get the emojis to appear in you replies? I tried doing it via the image in the upper right hand corner of the reply box, but I end up with symbols! This girl is missing the mark somewhere!


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