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Our Surgery Journey
- Thread starter Crohn's Mom
- Start date
Hope everything is going well!!
Thinking of you and hoping all is going well.
- Location
- London, UK
Crossing my fingers for Gabs, hope everything goes without a hitch! Looking forward to your next update 
x
x
Crohn's Mom
Moderator
Did I confuse everyone ? Or did Dusty with her Australian time ? LOL
We have to be at Mayo at 5:30 tomorrow (Tuesday) and surgery is at 7:30
Today she has just slept, and slept and slept some more and is still sleeping
The only prep she had to do was to take a ton of antibiotics 3 different times today.
I'm glad they prescribed some nausea meds as well, because she sure needed them!
I finally got her to wake up long enough to shower with her disinfectant scrub that is required.
Poor girl, but it will be sooo worth it !
We have to be up around 3:30 a.m. and leave our house by 4 ! Wowza ! (It's 11 here right now...guess who's not sleeping but a wink ) My pulse is 106 resting right now...I had to check it because it feels like it's pounding out of my chest ! arrggh...I think I must be a little stressed even tho I pretend I'm not LOL
Thanks for checking in on us! Hope I didn't confuse everyone
Tomorrow is the big day!
We have to be at Mayo at 5:30 tomorrow (Tuesday) and surgery is at 7:30
Today she has just slept, and slept and slept some more and is still sleeping
The only prep she had to do was to take a ton of antibiotics 3 different times today.
I'm glad they prescribed some nausea meds as well, because she sure needed them!
I finally got her to wake up long enough to shower with her disinfectant scrub that is required.
Poor girl, but it will be sooo worth it !
We have to be up around 3:30 a.m. and leave our house by 4 ! Wowza ! (It's 11 here right now...guess who's not sleeping but a wink ) My pulse is 106 resting right now...I had to check it because it feels like it's pounding out of my chest ! arrggh...I think I must be a little stressed even tho I pretend I'm not LOL
Thanks for checking in on us! Hope I didn't confuse everyone
Tomorrow is the big day!
DustyKat
Super Moderator
F***, that was probably me that confused everyone! I was up and down like a honeymooners nightie! :eek2:
Aha, no prep girl! Makes a nice change T,
Yikes! Just about check in time for you guys! Thinking about you and sending loads and loads and loads of love!
Dusty. :heart::heart::heart:
xxxxxxxx
Aha, no prep girl! Makes a nice change T,
Yikes! Just about check in time for you guys! Thinking about you and sending loads and loads and loads of love!
Dusty. :heart::heart::heart:
xxxxxxxx
Crohn's Mom
Moderator
We just checked in!
Just thought I'd tell y'all we've at least made it to the hospital, and only 4 mins late! Not bad for less than 2 hours sleep. Thank goodness for adrenaline ! LOL
Will update soon- thanks everyone for all the love !
Just thought I'd tell y'all we've at least made it to the hospital, and only 4 mins late! Not bad for less than 2 hours sleep. Thank goodness for adrenaline ! LOL
Will update soon- thanks everyone for all the love !
Crohn's Mom
Moderator
They took her in
Said the operating room is reserved for 2 1/2 hours ... I liked hearing that soo much more than compared to the last 6 hour one!!
She was sooo excited and giggly as they wheeled her away!
Man I love that girl more than life itself !
Said the operating room is reserved for 2 1/2 hours ... I liked hearing that soo much more than compared to the last 6 hour one!!
She was sooo excited and giggly as they wheeled her away!
Man I love that girl more than life itself !
Crohn's Mom
Moderator
Ding dong Ozzies dead, Ozzies dead,
Ding dong Ozzies dead, the wicked stomas dead!!
Whoo hoo it's over and she did amazing he said!! I get to see in in about 2 1/2 hours!!!
I'm sooo happy !!
Ding dong Ozzies dead, the wicked stomas dead!!
Whoo hoo it's over and she did amazing he said!! I get to see in in about 2 1/2 hours!!!
I'm sooo happy !!
:thumright:Yay! Glad to hear it!
Crohn's Mom - Being new to this site, I just read your surgery journey from beginning to today - and was so moved by everything you have been through. When I read what Gab wrote about you in that competition it brought tears to my eyes. I just wanted to say that I wish you and Gab all the best with the reversal surgery. I can totally relate to everything. My daughter was diagnosed at age 12 with crohns and went through a period when it became severe and stopped responding to meds. We too went through an almost identical journey like you did - with the ileostomy and all the challenges and relief it brings - to the reversal. If you need any advice or have any questions, just know that you are not alone - we are all here for you. Take care.
DustyKat
Super Moderator
This is just the best news to wake to!!! You have really made my day T!!!
It seems like only yesterday that Gabs was last in surgery and yet from that day, all those months ago, you have both remained so strong, determined and focused. I will never forget how steadfast, positive and reassuring you were to me when Matt had his surgery, only a matter of 2 weeks later, and for you and Gabs it was all still so new and frightening. This wonderful outcome is so deserved for Gabs and you too T. I wish more than anything that her recovery is speedy and uneventful.
Now give that girl a humungous squishy but gentle hug from me and tell her well done! :hug::hug::hug:
:mademyday:
Dusty. xxxxxxxx
Yay! So glad to hear the good news. Wishing her all the best!
- Location
- Midwest
Awesome awesome awesome!!!!!!!!!!
Crohn's Mom
Moderator
I am so truly touched by all of the support from everyone here, It means the absolute world to me; more than you will ever know. :heart::heart:
Kelly2, thank you so much for your thoughtfulness After I've hopefully had a bit of sleep tonight, than I will try and find your story to read. Ours do sound very similar.
Gab had a pretty good day considering. She is in pain of course, it's to be expected. However, it's nothing compared to the pain she had post surgery in March. I am pleased with that.
Also, she didn't wake up with any extra tubes this time! No catheter, No JP drains, and especially NO OZZIE ! :ylol: she's already been up and to the restroom to pee a few times ! Also, We can already here grumbling sounds in her bowels! All good stuff
I had a talk with her the other day and was trying to explain to her that she will most likely experience some phantom Ozzie moments since he was around for nine months, and was definitely a part of her every experience. Well, I have lost count at how many times she has told me that she keeps thinking he's still there and reaches down to "quiet" him and realizes it's gone. that and she keeps asking why they are taking so long to take her back and do the surgery and how she just knew it wasn't going to happen Poor girl, I can't wait till her pain meds are lowered and she can remember that she's had the surgery and it IS REAL AND GONE :ywow:
I am beyond tired, but I'll catch up when I get home LOL.
It's ironic that we are on the same floor, with the same favorite nurse, and the same room as the March surgery !! And we were pleasantly surprised that they remembered her and I the moment we came in
In fact the only negative experience that's happened so far was nothing to do with Gab. I went to the nurses station and politely requested a cup of coffee. the tech lady on duty says "Sure you can have coffee, but would you like some crackers, or a snack bar, or something to eat?" I simply said, no thank you just coffee please. So as I start to walk back to her room, this tech follows me a bit and says..."but you're sooooo skinny, are you sure you won't eat some crackers?? Please??"
WTF ?? Seriously, people do this ? I mean, does she think I'm not aware of what size I am ??? I'm quite offended, even tho I'm sure in her mind she meant well. Still, no excuse ! :mad2:
Other than that...It has been one hell of a well deserved amazing day for both my daughter and myself !! :rosette2:
:dance::dance::dance:
Kelly2, thank you so much for your thoughtfulness
After I've hopefully had a bit of sleep tonight, than I will try and find your story to read. Ours do sound very similar.Gab had a pretty good day considering. She is in pain of course, it's to be expected. However, it's nothing compared to the pain she had post surgery in March. I am pleased with that.
Also, she didn't wake up with any extra tubes this time! No catheter, No JP drains, and especially NO OZZIE ! :ylol: she's already been up and to the restroom to pee a few times ! Also, We can already here grumbling sounds in her bowels! All good stuff
I had a talk with her the other day and was trying to explain to her that she will most likely experience some phantom Ozzie moments since he was around for nine months, and was definitely a part of her every experience. Well, I have lost count at how many times she has told me that she keeps thinking he's still there and reaches down to "quiet" him and realizes it's gone. that and she keeps asking why they are taking so long to take her back and do the surgery and how she just knew it wasn't going to happen
Poor girl, I can't wait till her pain meds are lowered and she can remember that she's had the surgery and it IS REAL AND GONE :ywow:I am beyond tired, but I'll catch up when I get home LOL.
It's ironic that we are on the same floor, with the same favorite nurse, and the same room as the March surgery !! And we were pleasantly surprised that they remembered her and I the moment we came in
In fact the only negative experience that's happened so far was nothing to do with Gab. I went to the nurses station and politely requested a cup of coffee. the tech lady on duty says "Sure you can have coffee, but would you like some crackers, or a snack bar, or something to eat?" I simply said, no thank you just coffee please. So as I start to walk back to her room, this tech follows me a bit and says..."but you're sooooo skinny, are you sure you won't eat some crackers?? Please??"
WTF ?? Seriously, people do this ? I mean, does she think I'm not aware of what size I am ??? I'm quite offended, even tho I'm sure in her mind she meant well. Still, no excuse ! :mad2:
Other than that...It has been one hell of a well deserved amazing day for both my daughter and myself !! :rosette2:
:dance::dance::dance:
I have to agree with AZMOM! Keep us posted on how Gabs is doing. I am glad she is doing so well!
Crohn's Mom
Moderator
Coffee in hand 24/7 and my eyes are being held open with toothpicks...pink ones for style of course !
Oh...you meant the surgery patient ?? :ylol2:
She's doing great for the most part. Little spikes of a fever here and there, pain is up and down, and the biggest problem until today was her heart rate. The nurse came in the night before last and woke her because her heart rate was 139 while sleeping. They called up an emergency EKG because she seemed to be a bit short of breath and was complaining of chest pain; they also quickly drew some bloods. Everything was "normal", Thank God!, but it took a day and a half for it to lower to normal ranges. :shifty: It was definitely scary for a bit, especially for Gab as this sent her into major anxiety and panic attack. Which in turn didn't help in trying to lower the heart rate. :ywow:
But, all seems well with that now ! :kiss:
Her bowels are making all the noises they are supposed to, but no movement just yet. Its causing her some discomfort, but I expect this is normal while it's moving through for the first time.
We're hoping it happens today so we can possible go home tomorrow ! :smile:
Oh ya, and she went off the of pca pain pump yesterday already, and is now just taking percocet every 4 hours as needed, with Torradol in between for any breakthrough pain if needed
I'll update more later, after I change my toothpick attire of course !
Oh...you meant the surgery patient ?? :ylol2:
She's doing great for the most part. Little spikes of a fever here and there, pain is up and down, and the biggest problem until today was her heart rate. The nurse came in the night before last and woke her because her heart rate was 139 while sleeping. They called up an emergency EKG because she seemed to be a bit short of breath and was complaining of chest pain; they also quickly drew some bloods. Everything was "normal", Thank God!, but it took a day and a half for it to lower to normal ranges. :shifty: It was definitely scary for a bit, especially for Gab as this sent her into major anxiety and panic attack. Which in turn didn't help in trying to lower the heart rate. :ywow:
But, all seems well with that now ! :kiss:
Her bowels are making all the noises they are supposed to, but no movement just yet. Its causing her some discomfort, but I expect this is normal while it's moving through for the first time.
We're hoping it happens today so we can possible go home tomorrow ! :smile:
Oh ya, and she went off the of pca pain pump yesterday already, and is now just taking percocet every 4 hours as needed, with Torradol in between for any breakthrough pain if needed
I'll update more later, after I change my toothpick attire of course !
DustyKat
Super Moderator
Oh no! poor Gabs, bless her...:hug:...I hope things now stay settled T. She so deserves to have things go her way.
Patience Mama!, she only had her op Tuesday! Give them tha bowels a chance to wake up and realise they have a job to do again! :lol:
:hang:...Mum! You do know you are doing an absolutely fabulous job don't you? Of course you are!
Thinking of you both, always. Sending loads of love, luck and wishes across the pond! :Karl:
Dusty. xxxxxxxx
Patience Mama!, she only had her op Tuesday! Give them tha bowels a chance to wake up and realise they have a job to do again! :lol:
:hang:...Mum! You do know you are doing an absolutely fabulous job don't you? Of course you are!
Thinking of you both, always. Sending loads of love, luck and wishes across the pond! :Karl:
Dusty. xxxxxxxx
Crohn's Mom
Moderator
I think I need to read some other resection threads on here so I can have a realistic idea of how this waking up of the bowels really works... And not just the dear surgeons day to day well maybe's lol. He came in today and backed her off of the clear liquids only and told her she's only allowed to sip a little now. Her belly is hard and distended. I'm not worried per say... Just uneducated in this particular department at the moment not for
Long tho! Lol
not forLong tho! Lol
DustyKat
Super Moderator
You're doing fine T, you really are! :hug:
To be honest I wouldn't be looking at anything before Saturday or Sunday and generally the farting will start a day or two before the bowels work.
Is she chewing gum and/or sucking on barley sugar?
Much love, :heart:
Dusty. xxxxxxxx
To be honest I wouldn't be looking at anything before Saturday or Sunday and generally the farting will start a day or two before the bowels work.
Is she chewing gum and/or sucking on barley sugar?
Much love, :heart:
Dusty. xxxxxxxx
- Location
- Midwest
T- does the heart rate episode have anything to do with the adrenal gland thing you talked of earlier?
Crohn's Mom
Moderator
I'm not sure of that, but trust me..while it was happening..I was on my handy dandy iPhone looking up adrenal crisis and comparing ! She did seem to have quite a few of the symptoms on the list. Maybe it was a small episode that her body resolved itself ? I don't know..but if It was, I see it as a good sign that her body took over the fight!
All speculation on my part of course lol.
All speculation on my part of course lol.
Glad to hear she is doing better. It does indeed take the bowels time to wake up. Give it time. You don't want to rush things. I know being in the hospital stinks and I am sure Gabs can't wait to get home. Tell her we are all thinking of her and rooting for a fast recovery!
Crohn's Mom
Moderator
Toot-toot! Toot-toot!
The trains beginning to pull out of the station!
Sent from my iPhone using Tapatalk
The trains beginning to pull out of the station!
Sent from my iPhone using Tapatalk
Crohn's Mom
Moderator
Well I guess I better put on my patience pants cause her surgeon is in absolutely no hurry to have her leave. Lol. He still won't move her past sipping clear, uncarbonated, liquids. He said "you're a special, special case- lets just leave it at that" after he told
Us again how very slow we need to take this.
Well- you don't just "leave it at that" with this momma bear lol. The nurse is going to go read over his notes when she gets a few minutes and see what his thinking is, (shes intrigued as well) and why she's a "special case" - besides her obvious specialness!
Sent from my iPhone using Tapatalk
Us again how very slow we need to take this.
Well- you don't just "leave it at that" with this momma bear lol. The nurse is going to go read over his notes when she gets a few minutes and see what his thinking is, (shes intrigued as well) and why she's a "special case" - besides her obvious specialness!
Sent from my iPhone using Tapatalk
DustyKat
Super Moderator
Ahahaha, go T!
They love you guys and just don't want you to leave, don't cha know! I doubt the surgeon will put that in the notes though!
Ahhhh T, Gabs has been through so much and aside from being very special I wonder if your surgeon is like Matt's. I know he kept us longer with both hospital admissions than was probably necessary because deep down I think he just hated the thought of what Matt was going through, perhaps he still had children around Matt's age, I don't know, and just wanted the best possible outcome for him. (((shrug))) The Crohn's specialist we saw before surgery said to me...You know Tony (the surgeon) is going to hate doing this (the resection). I think that pretty much summed things up...he took extra special care of him.
Hell that was rambling! Good luck T and let us know how you get on!
Loads of love, :Karl:
Dusty. xxxxxxxx
They love you guys and just don't want you to leave, don't cha know! I doubt the surgeon will put that in the notes though!
Ahhhh T, Gabs has been through so much and aside from being very special I wonder if your surgeon is like Matt's. I know he kept us longer with both hospital admissions than was probably necessary because deep down I think he just hated the thought of what Matt was going through, perhaps he still had children around Matt's age, I don't know, and just wanted the best possible outcome for him. (((shrug))) The Crohn's specialist we saw before surgery said to me...You know Tony (the surgeon) is going to hate doing this (the resection). I think that pretty much summed things up...he took extra special care of him.
Hell that was rambling! Good luck T and let us know how you get on!
Loads of love, :Karl:
Dusty. xxxxxxxx
I am in the hospital myself, so I just caught up with everything that has been happening the past few days. They found a mass in my colon - can you believe that! My daughter is the one with Crohns and I am just like all of you - always taking care of our kids and not really paying attention to ourselves. I guess I let it go too long.
So happy to hear everything is going smoothly allbeit at a slow pace - nothing wrong with that Its so nice that you have a surgeon who truly cares about Gab. Sending you my best wishes, and really pray for Gab's recovery.
Kimmidwife- How is Caitlyn doing? I was hoping for her to respond to the Remicade by now, but did some reading and it looks like it can take a while sometimes. Has the Entocort kicked in yet? I so hope things are going better for you too.
So happy to hear everything is going smoothly allbeit at a slow pace - nothing wrong with that
Its so nice that you have a surgeon who truly cares about Gab. Sending you my best wishes, and really pray for Gab's recovery.Kimmidwife- How is Caitlyn doing? I was hoping for her to respond to the Remicade by now, but did some reading and it looks like it can take a while sometimes. Has the Entocort kicked in yet? I so hope things are going better for you too.
No!!! He was afraid you'd emasculate him in his sleep!
T! Patience dear
....this from someone who hates hospitals! Of course Gabs is special. Exceptional parents have exceptional children!
Crohn's Mom
Moderator
Gab gets to try soft foods today and.... If they settle ok with her ... We're going home !!!
Kelly2, I'm soo sorry to hear you are hospitalized! That must be awful for you! ;(
Dex: thank you I really needed to hear that , more than you know! <3
Sent from my iPhone using Tapatalk
Kelly2, I'm soo sorry to hear you are hospitalized! That must be awful for you! ;(
Dex: thank you
I really needed to hear that , more than you know! <3 Sent from my iPhone using Tapatalk
How is Gab doing with the soft food diet today? Hopefully, all is well and you guys will be on your way home in no time. Are you going to follow a specific diet now that Gab has had her reversal done? After my daughter's reversal, we decided not to feed her any meat as it is so hard to digest, and also avoided all dairy and spicy food. It may take a while for her BM to regulate once they get going. If this happens, try not to worry. I remember in the beginning when we got home it took a while for everything to settle down - almost as if the colon was "waking up" and remembering what it is supposed to do. We used Metamucil and still do - as her ascending and 1/2 transverse colon was removed and she does just fine on that. Right after surgery the doctor prescribed some Lomotil which we used for a little while.
Thanks for your well wishes - I appreciate them. I also wish I could get out of this hospital and go home
Thanks for your well wishes - I appreciate them. I also wish I could get out of this hospital and go home
DustyKat
Super Moderator
Well I never! As if I would do such things! :tongue:
Yicketty yikes! I answered this a while ago and now it's gooooooooooooone! Hmph, Dex probably deleted me. :emot-cop:
This is sooooooooooooooooo fab to hear T! Bet you two couldn't wait to bust outta there! I hope all goes well for Gabs T. She is well overdue for things to go her way, bless her. :hug:
Just gotta ask though T, did they discharge her before she had her bowels open?
So happy, happy, happy!
:mademyday:
Dusty. xxxxxxxx
Crohn's Mom
Moderator
Thanks, and No Dusty they didn't...the train left the station yesterday! LOL
Kelly, Gab has been on a very restricted diet for nearly two years now, self imposed to help with her digestion. I'm quite sure she will continue it for sometime because she is afraid of doing any possible, preventable, damage to herself again. I can't remember the last time she ate red meat, dairy, vegetables, or pretty much anything except noodles and turkey paninis LOL. She's very particular
Ahh...we're both so happy to be home! I think myself more than she. She tends to like the safety of the hospital for a bit
Kelly, Gab has been on a very restricted diet for nearly two years now, self imposed to help with her digestion. I'm quite sure she will continue it for sometime because she is afraid of doing any possible, preventable, damage to herself again. I can't remember the last time she ate red meat, dairy, vegetables, or pretty much anything except noodles and turkey paninis LOL. She's very particular
Ahh...we're both so happy to be home! I think myself more than she. She tends to like the safety of the hospital for a bit
I'd be afraid to move a muscle for a week! I'd just know I was going to rip something openShe tends to like the safety of the hospital for a bit
Glad you're home!!
Crohn's Mom
Moderator
Speaking of "open" ... Does any one want to see what it looks like when an ileostomy is reversed through the stoma itself and NO other incisions?
(yes ... We're happy about less scars! Lol)
I'm asking first because of the weak stomachs for this kind of
Thing out there... Even tho it's really not so bad ... Just a hole
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(yes ... We're happy about less scars! Lol)
I'm asking first because of the weak stomachs for this kind of
Thing out there... Even tho it's really not so bad ... Just a hole
Sent from my iPhone using Tapatalk
So Glad you guys are home Yay!!!!. All good things and very happy holidays!!!
DustyKat
Super Moderator
Would I be stating the obvious if I said...yes?Speaking of "open" ... Does any one want to see what it looks like when an ileostomy is reversed through the stoma itself and NO other incisions?
(yes ... We're happy about less scars! Lol)
I'm asking first because of the weak stomachs for this kind of
Thing out there... Even tho it's really not so bad ... Just a hole
Sent from my iPhone using Tapatalk
Dusty. :ybiggrin:
Crohn's Mom
Moderator
If anyone is bothered ... Blame it on Dusty, and make her remove it! Hahahah
By the way... The irritated skin around the hole is from the wafer pre-surgery. If you remember,
I was explaining how Ozzie wasn't being very nice for a while. This actually looks good compared
To a week ago
Sent from my iPhone using Tapatalk
By the way... The irritated skin around the hole is from the wafer pre-surgery. If you remember,
I was explaining how Ozzie wasn't being very nice for a while. This actually looks good compared
To a week ago
Sent from my iPhone using Tapatalk
Attachments
DustyKat
Super Moderator
Thanks T! You've made my day! :lol:
Oooooo, nice. The wound that is, but my oh my poor Gabs. I well remember you talking of the problems she was having with her skin, thank goodness it is on the mend. What a relief it must be not to have the wafer on it!
Onwards and Upwards T!
Dusty. xxxxxxxx
Oooooo, nice. The wound that is, but my oh my poor Gabs. I well remember you talking of the problems she was having with her skin, thank goodness it is on the mend. What a relief it must be not to have the wafer on it!
Onwards and Upwards T!
Dusty. xxxxxxxx
Crohn's Mom
Moderator
I know..it's hard to believe that looks "good" right ?
Poor girl...you should have seen it a couple of weeks a go...it was kinda horrific
:ywow:
Poor girl...you should have seen it a couple of weeks a go...it was kinda horrific
:ywow:
I am so glad she is improving. Once the hole is closed you can try mederma on it to help it heal.
Crohn's Mom
Moderator
Just stopping by to tell everyone that Gab is doing really good !
I am amazed at how uneventful things post-surgery are this time around. What a difference it makes when you're body's not knocking on deaths door before surgery :ybiggrin:
Her incision is healing nicely, and the skin around it is looking really good too. I think the skin is actually going to take longer to heal than the incision.
It's strange.. I considered Gab "healthy" (well pretty much) before this surgery and thought she looked good in weight as well. However, she kept saying that having Ozzie was making her "fat" because she felt bloated all the time. Now, its just 9 days past surgery and she is so tiny again. She is eating, but not much because she is not happy with just how awake her bowels are now. If you all remember, Gab never had a problem with diarrhea as a symptom of Crohn's; she always had the opposite problem and was lucky to go once every couple of weeks. So this is VERY new to her and upsetting. Hopefully it will slow down after a few weeks. The surgeon still thinks that she will not have to worry about Small Bowel Syndrome, but I'm not so positive yet. Time will tell. I've convinced her to drink at least 2 boost drinks per day to supplement the nutrition she's not getting right now, so at least she's cooperating with that.
So, other than her losing weight rapidly she's doing wonderful and couldn't be happier ! She's so deserving of this :heart:
I am amazed at how uneventful things post-surgery are this time around. What a difference it makes when you're body's not knocking on deaths door before surgery :ybiggrin:
Her incision is healing nicely, and the skin around it is looking really good too. I think the skin is actually going to take longer to heal than the incision.
It's strange.. I considered Gab "healthy" (well pretty much) before this surgery and thought she looked good in weight as well. However, she kept saying that having Ozzie was making her "fat" because she felt bloated all the time. Now, its just 9 days past surgery and she is so tiny again. She is eating, but not much because she is not happy with just how awake her bowels are now. If you all remember, Gab never had a problem with diarrhea as a symptom of Crohn's; she always had the opposite problem and was lucky to go once every couple of weeks. So this is VERY new to her and upsetting. Hopefully it will slow down after a few weeks. The surgeon still thinks that she will not have to worry about Small Bowel Syndrome, but I'm not so positive yet. Time will tell. I've convinced her to drink at least 2 boost drinks per day to supplement the nutrition she's not getting right now, so at least she's cooperating with that.
So, other than her losing weight rapidly she's doing wonderful and couldn't be happier ! She's so deserving of this :heart:
DustyKat
Super Moderator
Woohoo! Doing the happy dance big time here! anda:anda:anda:
She surely is so very deserving of a positive outcome T! :heart:
Hmmmm, well you know the issues Sarah has had with the diarrhoea over the years and honestly T I would be inclined to get Questran prescribed now. Sarah's GI prescribed it at this point post op but as you know, after a couple of doses she refused to take it, it did work though. It goes without saying that Gabs is older and more mature than Sarah was and she has had to endure far more than she so for her Questran may only a minor glitch.
I hate to say it T, and I see you have your doubts, but I would be hard pushed to believe that Gabs isn't going suffer with some degree of bile salt malabsorption. I know Gabs had 100cm plus of bowel removed??? but I can't remember how much of that was small bowel. I'm not suggesting it won't take up over time but I don't think it is something that will happen in the short term, hence why i think she should maybe start taking something for it now. Psychologically, and confidence wise, it can make the world of difference.
:mademyday:
Dusty. xxxxxxxx
anda:anda:anda:She surely is so very deserving of a positive outcome T! :heart:
Hmmmm, well you know the issues Sarah has had with the diarrhoea over the years and honestly T I would be inclined to get Questran prescribed now. Sarah's GI prescribed it at this point post op but as you know, after a couple of doses she refused to take it, it did work though. It goes without saying that Gabs is older and more mature than Sarah was and she has had to endure far more than she so for her Questran may only a minor glitch.
I hate to say it T, and I see you have your doubts, but I would be hard pushed to believe that Gabs isn't going suffer with some degree of bile salt malabsorption. I know Gabs had 100cm plus of bowel removed??? but I can't remember how much of that was small bowel. I'm not suggesting it won't take up over time but I don't think it is something that will happen in the short term, hence why i think she should maybe start taking something for it now. Psychologically, and confidence wise, it can make the world of difference.
:mademyday:
Dusty. xxxxxxxx
Crohn's Mom
Moderator
I just dug out her surgeon's notes from the first surgery, and it says that she has approximately 240-250 cm (so between 7-8 feet) of small bowel left. Hmm...correct me if I'm wrong, or confused, but there are 21 feet of small intestines and 7 feet of large. If she only has 7-8 feet of small bowel left, then that means she had around 14 feet removed ? that's like 400+ cm right ? He told me she had approx. 100 + cm removed, so that would be around 4 feet, not 14 ??? What am I screwing up here ?? LOL I'm really confused now, and maybe even a little pi***ed off as well because I'm feeling like we were not informed correctly.
I know her surgeon kept saying after this surgery that things were "really, really tight in there" and that's why she has to go very, very slowly introducing foods.
Dear Dusty....help me out here would ya ?? LOL
I know her surgeon kept saying after this surgery that things were "really, really tight in there" and that's why she has to go very, very slowly introducing foods.
Dear Dusty....help me out here would ya ?? LOL
DustyKat
Super Moderator
Right, the small bowel, on average, is twenty one and half feet long. The Duodenum is about 15 inches in length, the Jejunum is 8 feet in length and the Ileum 12 feet long.
Your conversions, feet/centimetres, are correct T. If she has 240-250cm left then Gabs has had all of her ileum and perhaps even a little of her jejunum removed. So yes, most likely 12-13 (350-400cm) feet of small bowel.
You haven't screwed up anything based on what you written, the critical point here what is left as opposed to what is removed, by that I mean...it does say left. I'm in no saying you have read it wrong T, I'm just double checking. I can well imagine your shock if this is indeed the case because there is a vast difference between 100cm + and 350-400cm!
It can also change the treatment for the resulting diarrhoea as fat in the stool may well becomes an issue and Questran then becomes ineffective...
I don't know if psyllium is useful in these cases either.
I don't like the sound of the surgeon saying it was tight in there because it adds weight the amount being left as opposed to taken out.
I think I would be getting in contact with the surgeon T and having a chat with him. Hmmm, probably what you are already thinking!
Much love, :heart:
Dusty. xxxxxxxx
Your conversions, feet/centimetres, are correct T. If she has 240-250cm left then Gabs has had all of her ileum and perhaps even a little of her jejunum removed. So yes, most likely 12-13 (350-400cm) feet of small bowel.
You haven't screwed up anything based on what you written, the critical point here what is left as opposed to what is removed, by that I mean...it does say left. I'm in no saying you have read it wrong T, I'm just double checking. I can well imagine your shock if this is indeed the case because there is a vast difference between 100cm + and 350-400cm!
It can also change the treatment for the resulting diarrhoea as fat in the stool may well becomes an issue and Questran then becomes ineffective...
Reference: http://www.bcm.edu/gastro/VGICC/GI-M0068/09-DISC.HTM
I don't know if psyllium is useful in these cases either.
I don't like the sound of the surgeon saying it was tight in there because it adds weight the amount being left as opposed to taken out.
I think I would be getting in contact with the surgeon T and having a chat with him. Hmmm, probably what you are already thinking!
Much love, :heart:
Dusty. xxxxxxxx
Crohn's Mom
Moderator
I checked and rechecked the report and it definitely states, in two different places, that she has 240-250 cm of healthy small bowel left
Ughhh I'm mad as hell!
There is a chance, in my distress at the time, that he did say 400 and not 100
Ughhh I'm mad as hell!
There is a chance, in my distress at the time, that he did say 400 and not 100
Hi T, just wanted to send wishes that Gab continues to improve and is able to enjoy all the holiday festivities! :dance:
Not sure what the implications are from the above discussion :confused2: , but hope it doesn't bring any complications to Gab :queen:!
:rosette2:
Not sure what the implications are from the above discussion :confused2: , but hope it doesn't bring any complications to Gab :queen:!
:rosette2:
DustyKat
Super Moderator
Oh T...:hug:
I will gladly grab with both hands being wrong here mate.
When you get the chance clarify with the surgeon how much small bowel is left.
Did they just say small bowel in the report or did they break it down into the sections, ileum and jejunum. I would have to lean toward them meaning the whole small bowel as I don't imagine, as professionals, they would only call the ileum small bowel. The reason I raise this is...if they are only talking of the ileum then 240cm of ileum left fits in with 100cm + being removed, these amounts fit neatly with 12 feet of ileum.
God I hope I'm not confusing you T and making things worse for you.
Much love, always. :heart:
Dusty. xxxxxxxx
I will gladly grab with both hands being wrong here mate.
When you get the chance clarify with the surgeon how much small bowel is left.
Did they just say small bowel in the report or did they break it down into the sections, ileum and jejunum. I would have to lean toward them meaning the whole small bowel as I don't imagine, as professionals, they would only call the ileum small bowel. The reason I raise this is...if they are only talking of the ileum then 240cm of ileum left fits in with 100cm + being removed, these amounts fit neatly with 12 feet of ileum.
God I hope I'm not confusing you T and making things worse for you.
Much love, always. :heart:
Dusty. xxxxxxxx
I have to agree with display about the questran it helped Caitlyn after her surgery last year though is she going to be on remicade I an not sure you can take I with remicade Caitlyn is n trying lomotil 3 times per day.
Crohn's Mom
Moderator
Now THAT would make sense to me! Having 240 cm left of the ileum!
Okay that is weird. I sent my reply back when quest ran was mentioned by Tess and it just showed up at the bottom here? I don't know what happened. Crazy phone probably messed it up again. These smart phones are just not as smart as they are supposed to be.
Crohn's Mom
Moderator
Checking in with my moment to spare
Gab is doing really well - I am amazed at how well she's healing this time around.
The only "issue" we have is our weekly weigh in together and our jokes of which one of us is withering away the fastest lol. I beat her this week w 4 lbs lost to her 3 lbs!
Seriously we eat (well she does), but I'd rather laugh w her right now while I play the watch and wait game, than stress over it. I mean , it could slow down and she will stop losing so quickly?? Right?? ( that's my story and I'm sticking to it ... For now) hehe.
I only have space in my mind to force the positives right now... Oh how I wish sometimes that this was a "Hey parents, give us all you got" board, cause man o man do I have some "raising kids" stories! Lol
Gab is doing really well - I am amazed at how well she's healing this time around.
The only "issue" we have is our weekly weigh in together and our jokes of which one of us is withering away the fastest lol. I beat her this week w 4 lbs lost to her 3 lbs!
Seriously we eat (well she does), but I'd rather laugh w her right now while I play the watch and wait game, than stress over it. I mean , it could slow down and she will stop losing so quickly?? Right?? ( that's my story and I'm sticking to it ... For now) hehe.
I only have space in my mind to force the positives right now... Oh how I wish sometimes that this was a "Hey parents, give us all you got" board, cause man o man do I have some "raising kids" stories! Lol
DustyKat
Super Moderator
Hey T,
I know you are watching like a hawk but what do you think about the weight loss? By that I mean, is she returning to a size she may have been pre pred/surgery?
My kids were the opposite but they were anorexic, in the sense of little appetite, and very low weight before surgery so had gradual weight gain.
Yes T, what are you down to? :hug:
Dusty. xxx
I know you are watching like a hawk but what do you think about the weight loss? By that I mean, is she returning to a size she may have been pre pred/surgery?
My kids were the opposite but they were anorexic, in the sense of little appetite, and very low weight before surgery so had gradual weight gain.
Yes T, what are you down to? :hug:
Dusty. xxx
Hi T ... worried about you a bit. Is your resting heart rate still high? (Hoping you say no)
Earlier this year, when I was super stressed because of Danny's Cystic Fibrosis dx and lack of treatment, I came down with hyperthyroid/Grave's disease. My main symptoms were elevated heart rate and weight loss. (Grave's is something super easy to diagnose and control compared to Crohn's!)
OK ...that was not positive ...
So happy Gab is healing well and she starts to gain soon!!
Earlier this year, when I was super stressed because of Danny's Cystic Fibrosis dx and lack of treatment, I came down with hyperthyroid/Grave's disease. My main symptoms were elevated heart rate and weight loss. (Grave's is something super easy to diagnose and control compared to Crohn's!)
OK ...that was not positive ...
So happy Gab is healing well and she starts to gain soon!!
Hi T,
Just wanted to see how you guys are doing. Hope you have a happy new year wishing you all good things in the new year.
Just wanted to see how you guys are doing. Hope you have a happy new year wishing you all good things in the new year.
- Location
- Midwest
The weight loss for you can snowball T. The stress can cause you to start losing weight, then it could plummet. No appetite from stress, and not sleeping...all burns calories. I'm worried about you too, along with Gab. Last January, Brian started doing better and that's when my issues set in...I'm way to embarrassed to say how low my weight got. I want you to catch it before it happens to you And please don't think I'm trying to stress you. I just want you to keep your body healthy too.
And please don't think I'm trying to stress you. I just want you to keep your body healthy too.
Crohn's Mom
Moderator
Hi everyone
I'm sorry, I didn't mean to make anyone worry about me ~ I'm still visible to the eye, so I'm ok! LOL. Really, tho..this does happen to me. I had finally managed to put around 10 lbs on a couple of months a go, and since my dear stomach can not handle more than a few bites of food about once a day, it is disappearing quickly; and the stress of life on top of it doesn't help much either because that always makes me lose weight quickly. I've lost about 12 pounds in the last 2 weeks, but I'm hoping to wake up and be starving here soon because I sure do miss my food! I am a woman who loves her food ! I would also love to fit back into my clothes as well LOL.
As for Gab, she is now at her weight (minus around 2-3 lbs) pre-prednisone. She is eating better and better each day, so I am really hoping that her weight loss settles and stays where it's at because she is a naturally tiny person as it is. She is eating more and more each day, certainly 10 times the food I am, so yes, I am a bit concerned with the rapid weight loss, but not overly. I think she still needs time to heal.
Her skin tone is wonderful again tho! She's always had this beautiful olive skin, but after she began getting sick she has looked very pale for a couple of years. For some reason now since this surgery tho she is getting her color back.
Other things like her energy are soaring as well! We're thinking that she was right all this time when she kept saying that Ozzie was making her sick. It's strange how it helped her colon heal but seemed to have stopped other things from going back to "normal". Or maybe we're both nuts and it's our imagination! LOL
Time will tell.
Thanks everyone. My life is rather crazy right now so I haven't had much time for anything except the family issues. I hope you're all doing well, and I will try and catch up with all of your updates on your threads soon.
Much love !
I'm sorry, I didn't mean to make anyone worry about me ~ I'm still visible to the eye, so I'm ok! LOL. Really, tho..this does happen to me. I had finally managed to put around 10 lbs on a couple of months a go, and since my dear stomach can not handle more than a few bites of food about once a day, it is disappearing quickly; and the stress of life on top of it doesn't help much either because that always makes me lose weight quickly. I've lost about 12 pounds in the last 2 weeks, but I'm hoping to wake up and be starving here soon because I sure do miss my food! I am a woman who loves her food !
I would also love to fit back into my clothes as well LOL.As for Gab, she is now at her weight (minus around 2-3 lbs) pre-prednisone. She is eating better and better each day, so I am really hoping that her weight loss settles and stays where it's at because she is a naturally tiny person as it is. She is eating more and more each day, certainly 10 times the food I am, so yes, I am a bit concerned with the rapid weight loss, but not overly. I think she still needs time to heal.
Her skin tone is wonderful again tho! She's always had this beautiful olive skin, but after she began getting sick she has looked very pale for a couple of years. For some reason now since this surgery tho she is getting her color back.
Other things like her energy are soaring as well! We're thinking that she was right all this time when she kept saying that Ozzie was making her sick. It's strange how it helped her colon heal but seemed to have stopped other things from going back to "normal". Or maybe we're both nuts and it's our imagination! LOL
Time will tell.
Thanks everyone. My life is rather crazy right now so I haven't had much time for anything except the family issues. I hope you're all doing well, and I will try and catch up with all of your updates on your threads soon.
Much love !
Crohn's Mom
Moderator
Doesn't she look just amazing
Bring on a happy new year! We all deserve some good luck here!
Bring on a happy new year! We all deserve some good luck here!
Attachments
She looks fantastic! I am glad she is doing well. Happy New Year!
- Location
- Midwest
She's beautiful!! And looks so healthy What a strong young woman.
What a strong young woman.
Crohn's Mom
Moderator
Hi everyone !
Hopefully we have come to the end of the "Our Surgery Journey" !
Gab went this morning for her post op appointment with the surgeon ~
She looks great and is healing nicely! She is a slow healer so her incision still has a way to go yet, but it looks good none the less.
It's odd, she has a literal dent in her abdomen where Ozzie used to be ! She doesn't mind tho ~ she's just thrilled to be rid of it! :ylol:
She is trying to get over a couple of infections right now (Cellulitis on her feet, and a bad sinus infection) and then she can begin her Cimzia again and hopefully stay in this beautiful thing called REMISSION for ever! :rosette1:
Her surgeons parting words as we were walking out the door...
"It's been a pleasure Gabrielle. I'm terribly sorry you had to go through everything you did in the last year, but you're going to do great now. And...I hope to never see you again!"
:ylol::ylol::ylol:
Today was a good day Thanks everyone for all the continued support and sharing in the last year of our roller coaster ride of a journey! Now bring on that lifetime of remission ~ she deserves it! :thumleft:
Hopefully we have come to the end of the "Our Surgery Journey" !
Gab went this morning for her post op appointment with the surgeon ~
She looks great and is healing nicely! She is a slow healer so her incision still has a way to go yet, but it looks good none the less.
It's odd, she has a literal dent in her abdomen where Ozzie used to be ! She doesn't mind tho ~ she's just thrilled to be rid of it! :ylol:
She is trying to get over a couple of infections right now (Cellulitis on her feet, and a bad sinus infection) and then she can begin her Cimzia again and hopefully stay in this beautiful thing called REMISSION for ever! :rosette1:
Her surgeons parting words as we were walking out the door...
"It's been a pleasure Gabrielle. I'm terribly sorry you had to go through everything you did in the last year, but you're going to do great now. And...I hope to never see you again!"
:ylol::ylol::ylol:
Today was a good day
Thanks everyone for all the continued support and sharing in the last year of our roller coaster ride of a journey! Now bring on that lifetime of remission ~ she deserves it! :thumleft: