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Confused! Barbie Butt or J-pouch removal?  

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PrairieGirl
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September 16, 2019 3:01 pm  

Hi All. I am new to the site and this is my first time posting.....I really need some guidance.

I am booked for the Barbie Butt Sx at the end of Oct. I was diagnosed with UC in 2007 and since then it has been an incredibly long, rough and complicated road (I will spare you all the details). When my surgical journey began in 2011 with my first stoma there was no question I would be reconnected - I even was for a while. In 2014, during a life saving emergency surgery while I was over 7 months pregnant I was reverted back to an ostomy and my j-pouch was “preserved”. Since that time I have continued to have numerous complications, recurring divergent pouchitis, anal leakage, constant rectal pressure,  frequent rectal spasms, and very high and acidic output due to how high into my small intestine the stoma now sits (this is my 4th stoma). I recently realized/accepted that reconnection would never be possible SO I booked the Barbie Butt thinking it was my only other option - I figured that they should take it all of it seeing as I don’t need it BUT now I’m not so sure.

During my surgery they will also be moving my stoma and “redoing it” due to its less than ideal current placement, a recurring abscess and a small hernia. So I will have the same vertical abdominal wound as my previous surgeries, a new stoma, a closed up stoma wound, and the Barbie butt wounds.

I have been researching what to expect from the BB surgery and I can honestly say that I did not realize how intense this was going to be - I am absolutely terrified. I now have a 3 year old daughter and the idea of not being able to bend, lift or sit for 3 months is really scaring me. Even though my Mom is coming to help for 4 weeks, at the moment I can’t even fathom how I can live at home or mentally manage with so many surgical wounds.

I guess my question has become ..... do I need to endure so much? Do I have to get everything removed - dormant j-pouch, rectum and anus? Does anyone out there know if I can have a permanent ileostomy and keep my rectum and anus? Why risk the possibility of additional complications?! Wouldn’t taking the j-pouch solve the pain and leakage etc problems? I feel so naive and confused. Please help!


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john68
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September 16, 2019 3:14 pm  

Hi Prairiegirl, Welcome to the forum, wow you have been a quiet a journey. From a  lay persons point of view it does sound like a lot to go through at the same time. It’s even common for a stoma too be formed and the rectum done later to allow for recovery. I still have my rectum which has not given any trouble, I do have to add leaving in for a long while can cause problems.  Maybe start by working through the problems in order of most trouble 

ileostomy 31st August 1994 for Crohns


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SqueakyandLiza
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September 16, 2019 3:42 pm  

Hi Prairiegirl,

I was recently told by my surgeon that they want to remove my rectal stump, so I am seeking a second opinion. I don't know what is going to happen, but I was only diagnosed with Crohn's last year, after my colon was removed. I am still taking Humira, which is the first medication I have been on. So I'm not ready to concede that the Crohn's can't be controlled and allow me to avoid another major surgery, when I am still trying to heal from the colectomy. 

There are a couple topics on here about removal of rectal stump, which definitely made me rethink having that surgery now. It sounds like you already have an idea how awful the surgery and recovery can be. 

All the best to you!!

Liza

-Liza
“May your day be bright and your bag be light.”


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VeganOstomy
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September 16, 2019 4:07 pm  

Welcome to the forums @prairiegirl

Has your surgeon been able to give you any idea what your recovery might be like? You have a complex history, so they would be able to make the best guess. 

However, the Barbie Butt surgery doesn't have to necessarily be hard - I know some people who get sewn up and they are doing all kinds of activities a few weeks later. Unfortunately, no one can predict how successful the surgery might be for you. 

It's great that your mom will be able to help you for a month - that might be more than enough time to heal up with the first two weeks being the most difficult (but again, this will depend on how your wound is left to heal). 

It does sound like you need the surgery, and the outcome of that surgery might be far better than what you're currently going through. 

I wish you all the best! 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Dona
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September 16, 2019 5:03 pm  

Hello Prairiegirl and welcome.

You have had a really complicated and challenging experience so far. As I am not a doctor, I can only give you my experience. Might be a good starting place for questions to your doctors though.

I also had UC, pretty severe. Nothing helped to control it by way of infusions and medications. I got a sub total colectomy with an ileostomy. Meaning they left some rectum. So far, the rectal stump hasn't been a problem. I have no plans to have a reversal, and I probably don't have enough colin/rectum left to make it all work properly anyway. Perhaps if you have Crohn's you might  have more problems with whatever is left, but you had UC. So???  You might ask about that.

It is wonderful your mother can help and you have your 3 year old daughter to enjoy.

Best of luck with all this. It can and is overwhelming at times. As all of us here know, this is a steep learning curve for you. A lot to take in and short amounts of time to come to important decisions.

Keep asking questions. And thanks for joining our ongoing conversation.

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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sjlovestosing
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September 16, 2019 7:43 pm  

Hello Prairie Girl,

Welcome to the forum. I am very sorry to hear about all you've gone through. I have, as you call it a "Barbie Butt". I had colorectal cancer last year and had everything taken out. It took me a month to be able to sit without a cushion. There was very little soreness after that. However, I think my total healing took about 3 months. At this point, I don't have any problems with being sewn up back there and am able to to most everything I did before (no splits, though!!! 😂). 

I do agree with Eric. It sounds like you need to have the surgery. However, this decision is yours to make. I pray that you come to do what is best for you.

God bless,

Stella


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UCtoOstomy
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September 17, 2019 12:20 am  

Welcome to the forum Prairie Girl,

The great thing about this forum is being able to voice a concern about our butts, poo, life, pain, joy and everything inbetween and receive honest advice, answers and support.  We've all been through our struggles, getting beat to the ropes but keep fighting and standing.

I had my subtotal colectomy when my first son was 5 months old.  I think my being sick was worse than the pain of my recovery.  I was carrying him a couple weeks later (against doctors recommendation) and life continued.  I also live with my rectum stump and it can be a pain in the butt... pardon  the pun. I will have to face its removal one of these days.  Fear of j-pouch failure, complications, infection, pouchitis and incontinence are some factors in deciding to keep my ileostomy.   There are many.

I'd like to wish you luck on your upcoming procedures, and hope your stoma placement/formation goes well.  I don't remember much from my surgery, but I do remember the surgeon saying he takes extra care and time in forming the stoma.  I thank him for it everytime I see him.  Keep us posted on your progress.

 


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LK
 LK
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September 17, 2019 3:29 am  

Welcome PrairieGirl...well, if your after information & honesty your in the right place.  You have certainly been thru a rough tough time! I admire your resilience and strength! I wish I could give you a great big hug!  I had the J-pouch (1996)) and when it failed it was big time.  "Pressure"  was due to failing JP.  Those horrid spasms....a rectal suppository prescribed, (O&B Suppositories , 1 in 12 hrs.) worked great for the spasms, considering the drug, I functioned well with that particular med. & I don't recall too many spasms after the JP was removed, just a bit of pressure from swelling that went away, and then still "occasional"  discharge once in a while, but I  am aware of it & I can control it. Ten years down the road, rectum still intact, no problems with it and no more spasms after  JP removed & ileostostomy installed. With Crohns, things can change any time it pleases. 

You have a little princess in your life. Three years old is an fun  & cute age! How wonderful!!!  You sure went thru a lot in your pregnancy! It is so great your Mom can come and help. If she wants to clean or make meals for the freezer hand over your recipes. If someone says "what can I do to help" have them make a meal your family enjoys for the freezer. Make sure you have foil on hand for cooking them. Freeze in the lge. yogurt size containers, they thaw easily in this size overnight, on a cloth top shelf in fridge, cont. will swet.  Church goer or not, talk to the *pastor, not the receptionist of a local  church near you.  My church friends provided us with "3 months" ( I had asked for 2 wks.)  of meals ( they also provided desserts)  that my family loved and I & hubby appreciated so much! I had a list of meals that were in the freezer to choose from. Dishes were labeled and thank you cards filled out after dinner and given to a friend to take to church & put in the mail boxes or the bagged dishes on a table in the back of the foyer, card taped on top, name visible.  Friends often feel helpless & want to help somehow, this is one way they can.  Make a list of friends & family for driving, baby sitting grocery/milk/prescription runs & rotate. If you need help with things like vacuuming and changing bed sheets, some may be willing to help with that too. Check with your pharmacy, most deliver prescriptions weekly at no charge.  Allow me to encourage you to brave the elements and ask for help. The worst they can say is no. Your a young Mom and your time & energy and healing is important here. If this helps make your day easier it is so worth it.  Our church often helps families that do not attend as part of a "reach out" program. They even catered to allergies, health needs, likes & dislikes.  This is a bad time for you and you likely struggle with time, energy & lack of sleep. You can get thru this by asking for help from those you trust.  Depending on my situation, these have been some of my go to resources.

You have medical choices here.  Ask lots of questions and always bring someone with you or ask if you can record your visit for your own information. If in doubt about anything it is very much your right to ask for second, third or fourth opinion even. Under a different situation and insisting, it was the 11th opinion that restored the use of my writing hand!  They can often use the results of your tests to draw a conclusion for you without retesting.  We can encourage you along here, and give all sort so of ideas.  Ask anything you need to ask and do not be shy about it.  Eric has done a fabulous job with all sorts of information and lots of hard work and time.  Your in the right place.   I think you hold the stoma record so far!  All the best to you and your family. Stay in touch please, and if it is okay with you I will pray for you also. Asking for help in a situation you feel out of control in gives you back control.  Don"t make any decision you do not have to make right away but do not jeopardize your health to do so. You can do this, your okay so far. Be as well as you can be. All the best PrairieGirl. 

Linda

Linda


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LK
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September 18, 2019 1:31 pm  

@uctoostomy and PrairieGirl, 

I hate to be the bearer of bad news here, butt puns are not only permitted, they are expected and respected!  Lets us have'em!  I admire you two young Moms coming on and sharing that you are a Mom with little ones at home while going thru these things.  I helped raise 2 others besides mine, 4 days a week 16 hour days, and all within a year of each other.  My kids were so little and my son was 5 months and nursing still when I had been hospitalized for 3 wks.  My Mother, bless her heart came to the hospital for every single feeding, day and night.  My son had such bad food & other allergies, breast milk was all he could tolerate!  I was on a very limited diet for him and it sure paid off.  The saving grace of sanity for my mother  was that she could nap anywhere  and the Nurses saw to it that she had a place to do so.  I was unsuccessful at expressing breast milk due to a whole other issue , or I would have done that instead.  We all knew how sick our little man had been and the changes in my  Pediatrician guided diet thru me for him, and this made all the difference in his little life.  I acknowledge you "Mighty Women Of Motherhood" and applaud you  for the time of difficulty and sheer joy and love that it can be to raise little ones with a bowel disease, thru test preps and pain of all kinds.  Lack of sleep from the guts is one thing but raising  children can create more lack of sleep.   Your support here to  other young Moms can be vial, so do not be shy and share your survival secrets!  I wish you the best of health and the energy required, a good library card, a comfy couch and long arms to wrap around the babies!  

Linda

Linda


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PrairieGirl
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September 18, 2019 7:43 pm  

@veganostomy

Hi Eric. Thank you for taking the time to read and respond to my post. I know you went through this surgery and I truly can’t thank you enough for your detailed documentation of the experience and then being brave enough to share it all with the world  - even if it did scare me half to death lol

I know that I definitely need surgery to remove this angry J-pouch, but I still don’t fully understand why the rectal stump and anus need to be removed with it. Are they contributing to my symptoms? Will they cause problems if left in? I am trying to touch base with my Dr for some answers, but she seems to be away. Hopefully she can put my mind at ease (somewhat) soon. But let’s be honest, talking to other patients is usually so much more helpful LOL


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PrairieGirl
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September 18, 2019 7:47 pm  

@uctoostomy

Hi thank you so much for replying to my post and helping me out. If you don’t mind me asking, why is your rectal stump a ‘pain in the butt’?


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PrairieGirl
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September 18, 2019 7:50 pm  

@dlkfiretruck

Hi Linda. Thank you so very much for your kind words, for taking the time to write such a detailed message, and for providing so much incredible advice / tips!!


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UCtoOstomy
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September 18, 2019 10:08 pm  

@dlkfiretruck

@prairiegirl

Hey Prairie Girl,

I'd like to clarify first that I am the 'father' of two young boys.  So I can't take the credit that mothers deserve in this aspect.   But thanks anyway Linda for the kind words and perspective.

As for the 'pain in the butt' rectal stump...  I suffer from diversion colitis or disuse colitis in this remaining piece of bowel.  It feels almost like having colitis all over again.   And strangely I find it can be affected by what I eat.   I try to treat it with mesalamine suppositiories and was given a prescription for SCFA (short chain fatty acid) solution, but due to waking up and attending to my crying baby, I couldn't retain this for very long.   The SCFA's are supposed to act like food for the angry colon cells. Maybe I'll try again when his sleeping habits get better.  

For now I share some of your views about the removal of the rectum, anus and closure of this part of the body.  My fear is mainly damage to the nerves that affect sexual function.   Whether immediate or long term damage, I don't want either.  Your situation is different in that you went the J-pouch route.   I'd like to keep my parts for as long as possible without surgery.  This means painful annual scopes and continued treatment for inflammation.   

I don't know if this answers your question, but feel free to ask more.  We are a community family here, and we all understand and sympathize with you.  Explaining to someone these issues can be difficult.  My brother was asking me why I don't go for the J-pouch, so I asked him when was the last time he $hit his pants.  I told him I got so good at tearing off my underwear and leaving the waistband that I nearly ran out of underwear and started wearing diapers.   Not a very fun conversation and I still don't feel he understood.   We are Osto-warriors fighting our own battles with our bodies.   Take care and good luck!

 

 


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IleosTony
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September 18, 2019 10:13 pm  

Hi PrarieGirl, and welcome.

 

your anxiety is certainly understandable. I find it a bit surprising that your doctor wants to do All that at once, but she must have a good reason to think it  justifiable in your case. It seems that you are being very proactive in your own health care, which is wonderful for you and which any physician worth her salt will not mind one bit. I suspect that she fears that leaving your rectum and anus in place will cause problems further down the road and perhaps create the need for further surgery. Linda has given  you excellent advice to seek the help of as many friends and family as you can for the little things, which will add up toward easing  your burden.

 

In any case, you've struck gold finding this community. We are glad to have you With us and look forward to accompanying you on your journey.

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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September 19, 2019 1:13 am  

@uctoostomy

I need to apologize to all a fathers out there. I had to end what I had started very quickly earlier, as  my guts did there thing with back to back emptying sessions all afternoon. I am so grateful I do not have to deal with that lovely Ring of fire anymore! When I am already malnourished and badly anemic again, I have to ask, where, when I already have short, short gut issues, WHERE does it all come from!?  I am exhausted tonight and trying not to cry but do not be sad for me I can get thru this too. It will not win or defeat me too horribly...I think. lol.  Checking in tonight,  I wanted to add to what I wrote because FATHERS also play such an important role in raising of children and many are the role of mother as well.  The tears are because as I remembered this afternoon feeling somewhat defeated, and needing a hug too, how my hubby used to help so much with the kids at night, when I felt I could never thank him enough, as he did this all while holding down a job and working 6 days a week.  Our son was up with issues 5-7 times a night for 5 years with Chronic Asthma and those nights that I was sure I would die and my eyes would dry up and wither away if I opened them -one- more-time, he came to the rescue and did what I could not even tho he was up at 5 a.m.  My Sunday after noon naps were vital to my survival, and he always made sure I got them, often being the one to send me to bed, or to say, no, your going to the hospital for fluids!  The world I come from, FATHERS have so much expected of them to begin with. Bringing the bread winner sort of issues and then the issues of others doing so *with* a bowel disease, and others not in our world not understanding why they may not be at work or taking that much needed nap.  So, to those Men of Fatherhood out there, I can not imagine what you deal with when also faced with these gut issues in life.  I realize every day that we are so much more resilient then we give ourselves credit for.  Children, or not!  

I learned to carry scissors and extra undies in purse to get neatly out of the pair of undies I was about to butcher  after my JP started to fail. Always afraid to leave the house or simply bend over to pick up a child let alone clean the toilet again.  Still needing that hug tonight, I want to commend the partners that are *hanging in there* in life to help and support those of us with these wonderful amazing bodies that function so horribly in the worst place possible!  On my hubbies death bed he said, make sure you don't get dehydrated and take those naps!  I do not feel much like surviving right now, but there are grands to meet yet and I think my little tiny boy, now a 6'2"  broad chested strong armed handsome man,  and expectant healthy as ever, FATHER to be of a soon, newborn and step Dad to two, I like to think he still needs me, and just maybe my daughter does also. Lol.

When those closest to us have no understanding or idea what it is like to fill our drawers, or the white porcelain bowl as readily as we do, or how exhausting it can be to turn your head on the pillow because anemia has wiped you out as well as the frequent bathroom trips day and night, I still have to be glad that they really do not need to have a clue of what it is like to live in this world of ostomies and IBD and all the issues that can come with it. God bless them for evening listening tho. Tho some are worse off then others, we can all support each other here and get thru this, just knowing there is someone else out there that is living this life.  Thank you all so much for being here! Thank you Eric, for making it possible and hooking me by telling and showing me your story which now I know why it seemed so much like a part of mine. God Bless you ALL.   

Linda


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LK
 LK
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September 19, 2019 3:17 am  

I hope the info helps if you needed it.  I am not sure if your aware, but also some grocery stores shop for you and deliver to you at home also. Making a list of your fav. and pref. brands & sizes,and even take pics. of them and the size you like to have on hand when you put in your list.  Then you get what you want and need that makes you happy.  Our Grocer charges 5 dollars for this service.  On using the hospital frozen meal program, know they do not flavour the food in or after the cooking process. What you see is what you get, but they are good meals and sometimes size can be ordered.

Check with you doctor and see if they have a drivers volunteer program for those who are sick or with cancer.  As volunteers, I think they get a there gas covered thru the program. I could be wrong, but some have made it sound like that. 

Is there not some way that you can have more time to decide on the stump removal further down the road.  I sure appreciate having mine for reasons of bladder medication in suppository form.   I am huge on second opinions and your allowed to get them. If you think you may be sent to a "like" opinion because of the present doctors choice, go somewhere else for your 2nd opinion referral.  If this is not urgent, or life saving or because of disease, do what you need to do to keep your parts.  This is your rectum and your life, keep it as normal as possible. All the more power to you! Having mine still, If a reason came up that it needed removing, I see no reason why it could not be done still.  Expect explanations.  FYI as n old nurse I know the surgical booking office keeps a list of ready patients for  times of cancellations, Surgery is cancelled if a patient has a cold, and rebooked later. It can mean the waiting game again, but if your not ready, your not ready.    I hope you get the answers you need.  All the best!

Linda


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PrairieGirl
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September 19, 2019 9:11 am  

@uctoostomy


Thank you for sharing. What you have said about your rectum definitely makes sense. I am so thankful for communities like this because, as you say, people really don’t understand. It is all so embarrassing and such a gross topic that it’s pretty hard to explain to people. And I can definitely relate to the diapers. I never leave the house without back up underwear and pants - I’ve even had to spontaneously buy clothes on the go - Not a happy moment.  And like you, this is all while dealing with the “fun” ostomy issues. Maybe this surgery is exactly what I need to get my freedom back. I’m definitely also afraid of the sexual ‘side effects’ but frankly the way things are now isn’t helping either lol I just kept blaming the pouch, but maybe it’s the rectum too. This is a very long battle .... apparently :) and it’s good to know there are others that can relate. Good luck and congratulations about you son!

 

 


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VeganOstomy
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September 19, 2019 9:24 am  
Posted by: @prairiegirl

but I still don’t fully understand why the rectal stump and anus need to be removed with it. Are they contributing to my symptoms? Will they cause problems if left in?

In my case, my disease was quite focused on the rectum and anus, as well as my colon. But even if it wasn't, had those been left intact, they could always potentially be a site of recurrence of my disease and I would rather not have to deal with that. 

Keeping it in with no plans to ever reconnect might also mean that you'll continue to manage it (i.e. it will still produce mucus, even if there's no poop).

There is no easy answer here, unfortunately. Keeping it and removing it both come with a different set of risks. It's great that you're asking these questions. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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PrairieGirl
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September 19, 2019 9:28 am  

@dlkfiretruck

I am sending you a million e-hugs. I am so sorry for what you have been through and for your loss. I  can’t imagine surviving this battle without my husband. He has literally saved my life on more than one occasion: picking me up off the shower floor and driving me to Mount Sinai in the middle of the night countless times, force feeding me water, when we lost our son during the aforementioned emergency surgery he risked his career and began working from home to help me through my crippling depression .... there’s so much more but now I’m ugly crying in my car lol. It sounds like you got one of the good ones too! Hold on to his words, love and memories. I am 36 and I can tell you with 100% confidence that your children still need you and, perhaps more importantly, your grandchildren. xoxo


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SqueakyandLiza
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September 19, 2019 9:44 am  
Posted by: @prairiegirl

@dlkfiretruck

I am sending you a million e-hugs. I am so sorry for what you have been through and for your loss. I  can’t imagine surviving this battle without my husband. He has literally saved my life on more than one occasion: picking me up off the shower floor and driving me to Mount Sinai in the middle of the night countless times, force feeding me water, when we lost our son during the aforementioned emergency surgery he risked his career and began working from home to help me through my crippling depression .... there’s so much more but now I’m ugly crying in my car lol. 

Prairiegirl—

Sounds like you could use some e-hugs too. Consider them on their way. 🙂

Liza

-Liza
“May your day be bright and your bag be light.”


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