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11-20-2013, 08:54 AM   #1
Ki3
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Surgery in two days-nervous!

I'm having my surgery on Friday morning and going to the hospital tomorrow at 2pm for the prep. I'm pretty sure I will be given the same laxatives as I had for my colonoscopy-which I hated. The surgery is either to remove a 12cm stricture or to fix or repair it, and I may or may not need a temporary ileostomy.

I am really nervous, which is unusual for me. Up until now I've been nothing but excited but I'm so so nervous now. I'm actually dreading the bowel prep more than the surgery itself. I would be 100% ok with having a stoma, I would enjoy the experience and im looking forward to showing off my first surgery scars but that drink is giving me nightmares. The thing is, for some reason with me and my brother(he doesn't have crohns) laxatives take 10x longer to work than usual. I seriously don't know why, I'm not blocked at all, I don't do anything differently, but with most people they will spend the night on the toilet, I will be fine and three days later will have terrible diarrhoea. So when I had my colonoscopy and they expected me to clear in one night (which obviously didn't happen) they came in with a tube while I was asleep and gave me an enema. Not the best thing to wake up to.

I'm only 13 and the whole surgery and possible stoma doesn't bother me but I don't want to drink all of that to be told it didn't work and I have to have an enema. Its making me very nervous I'm really scared. My dad can't be there on the day of my surgery and my mum can't stand watching me be put to sleep before surgery or she cries her eyes out so I'm going to ask the play specialist from the kids ward (as I'm used to the children ward, but ill be on the surgery ward) to come down with me as I don't want to go alone, but I don't want my mum to come, and I'm good friends with the play specialist so at least she will be there for me and when I wake up my mum will be there and my Nan. I'm just so scared for tomorrow.
11-20-2013, 09:53 AM   #2
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Good luck with your prep! It is definitely one of my least favorite things. I had my first surgery at 15. I admire your confidence and strength going into the surgery. Remember to have it afterwards too! You will probably be in pain. One thing I have learned about prep is you just need to do your best with it. I try not to stress over it and it usually works out. Let us know how your surgery goes!
11-20-2013, 10:32 AM   #3
valleysangel92
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Good luck! As said above, try not to stress out about the prep too much, if you're really worried you can ask the nurses or the doctor for advice and they will do their best to help you. I was really worried about having to do an oral prep since I reacted badly to the ones I had for my colonoscopy, but I didn't need to do one, I had enemas. To be honest, I actually prefered them, they took literally a minute and then it was done, then you just go to the bathroom. I did have some stomach cramps but the nurse gave me something to help with that. So if you do need an enema (I had 2 but I'm 20) then don't worry, they aren't as bad as they seem.

Also, being an nhs hospital, you might not be admitted at the time you expect, my advice would be to call the ward before you go to the hospital... We were told to call ours at 8 - 10am then I'd be admitted at 2pm, and when we did call they said call back at 2pm, then eventually they said they would call me, then I finally went to the hospital and was admitted about 6-7 pm.
If this happens to you, try not to get stressed about it, they just need to wait for a bed for you.
Generally with nhs hospitals you are admitted early to guarantee a bed and not because of preping, since they only need to do some bloods and I had an ECG ( I have a fast heart) , I didn't have the enema until the night time drugs round.

Just a little word if warning, if you are changing wards after your surgery (say for example you get admitted to a different ward to the one planned because of a lack of bed) you will be kept in recovery until a bed is available for the correct ward. For me that meant being in recovery from around 11am -3.30 pm. They may allow your mum in though because you're younger.

I hope it all goes well for you, try not to over think what could happen, especially with the prep, relax tomorrow morning, get your packing done tonight and have a nice relaxing bath, watch a movie with your family and just chill.
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11-20-2013, 12:01 PM   #4
Ki3
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Thank you,
I had a bath and washed my hair in hope I wont need one for a few days as im not going to want one the day after surgery. The prep really is worrying me though because I hated having an enema for my colonoscopy and the fact I had to have oral meds too it made me feel pretty shitty, I cried for like 4 hours at night trying to drink it :/

Im hoping I am changed to my normal ward after surgery, I know all the nurses there and where everything is and if im going to be in for a few days I just think I will feel more at home in the ward im used to.
I will probably post here each day and keep you all updated
11-20-2013, 12:18 PM   #5
valleysangel92
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They will probably ask you to have a shower the morning of your operation, because they need the skin as clean as possible, plus it helps to relax you. If you have long hair you might want to take some hair ties if you don't want to wash it that morning, but most hospitals have hair dryers for the patients to use.

I know the preps are horrid, I honestly felt exactly the same, but the enema I had to prep for surgery was really easy, it was something called a fleet enema which is just a tube with a nozzle, they squeeze it and that's it. You might be able to ask them if you can have a different oral prep to last time, explain how horrible it made you feel. They are usually very accommodating and will try to help you as much as they can.

Just remember, that however horrible it seems, it's temporary, it won't be forever, just remind yourself that in say 24 hours from starting the prep, the op will be over, the stricture will be widened or gone completely, you'll be able to just rest and recover and all the nurses will be making a good fuss of you ( the nurses in my hospital make a huge fuss of me and the other patients my age) . Keep focused on the end goal and the end outcome. It's just one step on the road to getting into remission and getting back to being a teenager.

Keep positive, you can do this! You're clearly a brave, strong girl and you have the world ahead of you , you just have to jump a few hurdles.

As you know you are more than welcome to inbox me and I will always get back to you as soon as I can and answer any questions. If you have a Facebook account you are welcome to have mine and if you needed someone to just chat to you would be more than welcome to contact me there as well.
11-20-2013, 01:02 PM   #6
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Hi my son had 35cm of small bowel 10cm of colon and his apendix removed 4weeks ago he did not need to be preped he was a bit sore after but his pain was kept at bay with morphine pump iv pain relief. He is doing great now even went back tp school yesterday hope you have a speedy recovery by the way my son is 14.
11-20-2013, 01:24 PM   #7
Ki3
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Thanks everyone but I have bad news

Just got a phone call from my dad, the surgeon had an emergency patient come in and the Friday slot was the soonest one they could do so they took mine My surgery has been put back to Tuesday, going in on Monday for Prep I'm in so much pain though even with Codeine, and I'm not sure I can wait until Tuesday. My pains are getting worse every day I cannot imagine surviving the weekend.
Put a huge downer on me.
11-20-2013, 01:27 PM   #8
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Sorry to hear that hun, but you will get there, it's only a few more days, and really it's better having surgery toward the start of the week since the surgeons are on hand if you have questions in the few days following. Try and keep your chin up, I know youre in pain but it's not much longer now.
11-20-2013, 01:40 PM   #9
Ki3
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Thanks, I just am so annoyed that Ive been telling myself all day every time I get this unbearable pain "just got tomorrow and then its happening" when now its like "just got tomorrow..and Friday..and Saturday,sunday and Monday... then they might ring and put it back again..."

I'm starting to think I'm not going to last that long without either emotionally breaking down or passing out from the pain.
11-20-2013, 02:23 PM   #10
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I don't have much more support to offer - all that's been said is really brilliant, here! - but I wanted to wish you good luck and offer some sympathy about the date being changed. It's awful! When I had my resection when I was 11, on the day of the surgery (we were on our way driving to the hospital already) they called and said there weren't any beds. I wish things weren't so unpredictable... but then, if I was an emergency patient, I guess I'd want urgent care.

I know what you mean about the enemas. I had two before my surgery - one at midnight and one at 6am - and they're utterly awful. That said, I didn't need an oral prep before my surgery, just the enemas. Having both must be horrible!!

But I just wanted to pop in to wish you luck and keep your chin up! You're so close to (hopefully) getting some relief. And I read what you said about not wanting your mum to see you go under and I nearly cried - you're so thoughtful!

Long story short, keep going, because we're all rooting for you!
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11-20-2013, 02:58 PM   #11
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So sorry you have to wait longer! I think the health system is different in the UK, than the US. I can't imagine that happening! I would be disappointed too! Hang in there.
11-20-2013, 04:19 PM   #12
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Thanks,

One thing that's good is that my dad booked ages ago to go to this Dr who expedition thing on Friday, so he is happy as now I can go, where as before he was going to just take my brother while I was in surgery, now I'm coming too. And the Xbox one comes out Friday which we pre ordered so I get to see that. The annoying thing is though, my Nan is forcing me to take my wheelchair to the Dr who thing as she says so violently it would be stupid to go without it as its lots of walking and I'm in pain. She isn't the one who has to sit in it, deal with everyone staring at her and the little kids asking loudly why I'm not walking. We have to go on trains to get there and I don't want to be the one to cause a scene having to get out and lift up the wheelchair onto the train and then people get all sympathetic like "ooh must help the disabled one" I mean seriously yeah I sometimes need a wheelchair, mostly when I'm in hospital, yet everyone is so over protective I'm not actually allowed to go without it. I feel so self conscious all the time and you stand out a lot when your on wheels. Sometimes I really want to run away from my family. If they keep bugging me I'm going to go down to theatre with the play specialist even if every family member is in the hospital. I really just want them to leave me alone. Earlier on my Nan wanted to wash my hair for me, she wanted to help me walk when we went to McDonald's. Seriously. I have a stomach ache, that doesn't stop my legs working. This kinda turned into a rant sorry but they are pissing me off.
11-20-2013, 05:07 PM   #13
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Hi Ki

Sorry to hear you're in so much pain and you've been delayed with your surgery. At least it's not months. Have they told you what the prep involves. The night before stricture removal surgery and getting stoma'd I was able to eat a full meal. The only prep I had was drinking a couple of carb loading drinks early in the morning. Maybe other hospitals do things differently.

Good luck. Hope you can enjoy the Dr.Who
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11-20-2013, 05:17 PM   #14
Ki3
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Thank you,
They havnt actually told me anything about the prep except I have to clear my bowels, apart from that im clueless. They have asked I still get there for 2pm monday so I think some early fasting is involved but im really not too sure.
11-21-2013, 09:58 AM   #15
Ki3
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OMG- GREAT NEWS (well, for me)

The emergency patient is apparently no longer an emergency (Im hoping they suddenly recovered, and not, well you know...) so they might be able to do surgery tomorrow! Just waiting for a confirmation that I have a bed and then going to the hospital to begin fasting and prep (when they tell me what prep it is) SO I should be having my surgery tomorrow morning eeeeeeeee :P

Excited and nervous, happy and anxious, I will miss the Dr Who thing and the xbox one day one, but I think I would be in too much pain to enjoyit anyway.

IM SO EXCITE
11-21-2013, 12:30 PM   #16
Ki3
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omg, bad news.

The reason I got my surgery back was because the old man had a heart attack. They are now saying if he doesn't get surgery ASAP he will die. So he was given back my slot to save his life. I have put back to Tuesday. Its not even a secure place so I could be put back further. I'm fuckin passed off, yeah its not there fault an old mans dying but why is only my place not secured when they said my surgery is an emergency. Every other surgery isn't being moved, only mine. My Tuesday surgery isn't secure. If another oldie has a heart attack do I get put back another 4 days? Its not fair. I'm in pain and I want my surgery
11-21-2013, 12:45 PM   #17
valleysangel92
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omg, bad news.

The reason I got my surgery back was because the old man had a heart attack. They are now saying if he doesn't get surgery ASAP he will die. So he was given back my slot to save his life. I have put back to Tuesday. Its not even a secure place so I could be put back further. I'm fuckin passed off, yeah its not there fault an old mans dying but why is only my place not secured when they said my surgery is an emergency. Every other surgery isn't being moved, only mine. My Tuesday surgery isn't secure. If another oldie has a heart attack do I get put back another 4 days? Its not fair. I'm in pain and I want my surgery

Hun, believe me, I know this is stressful and horrible and I know you just want it over, but this is just the way the nhs works. I was told I'd get my surgery within a month and ended up waiting a lot more, because my surgeons list was full of cancer patients.

I know it feels unfair, but honestly you are still having a shorter wait than most of us do, try and see the positive. I know they said your op is urgent but that's because your young and they try not to let teens and children wait too long, but if they thought you were in danger they wouldn't mess about, trust me.

Maybe they are moving your slot because they aren't sure how long your op will take because they don't really know what they'll be doing yet, can't guarantee they'll fit the emergencies around yours. They need to know they have time to do what they need to and not have the pressure of time from an emergency, try not to give up, think about the positives, you can do this x
11-23-2013, 09:26 AM   #18
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I once had a surgery cancelled on the day it was supposed to happen - after they'd given me an enema. But my recent surgeries (I just had my sixth) have gone smoothly and on time. Beds can always be an issue. You just have to go with the flow. It's the downside of the NHS - but I much prefer the fact that the NHS does not cost us financially. Getting messed around with dates and times (and believe me, I know how it is when you've mentally prepared yourself for surgery only to have it delayed) I feel is preferable to having to pay for our healthcare. It's not just you - I and so many people I know have had surgeries and appointments moved around. Anyone who uses the NHS for any length of time with get landed with having their appointments delayed or cancelled eventually.

Your surgery will go ahead soon. Hang in there.

Thanks,

One thing that's good is that my dad booked ages ago to go to this Dr who expedition thing on Friday, so he is happy as now I can go, where as before he was going to just take my brother while I was in surgery, now I'm coming too. And the Xbox one comes out Friday which we pre ordered so I get to see that. The annoying thing is though, my Nan is forcing me to take my wheelchair to the Dr who thing as she says so violently it would be stupid to go without it as its lots of walking and I'm in pain. She isn't the one who has to sit in it, deal with everyone staring at her and the little kids asking loudly why I'm not walking. We have to go on trains to get there and I don't want to be the one to cause a scene having to get out and lift up the wheelchair onto the train and then people get all sympathetic like "ooh must help the disabled one" I mean seriously yeah I sometimes need a wheelchair, mostly when I'm in hospital, yet everyone is so over protective I'm not actually allowed to go without it. I feel so self conscious all the time and you stand out a lot when your on wheels. Sometimes I really want to run away from my family. If they keep bugging me I'm going to go down to theatre with the play specialist even if every family member is in the hospital. I really just want them to leave me alone. Earlier on my Nan wanted to wash my hair for me, she wanted to help me walk when we went to McDonald's. Seriously. I have a stomach ache, that doesn't stop my legs working. This kinda turned into a rant sorry but they are pissing me off.
I can understand why you'd feel this way, but when I've been sick and needed a wheelchair, wondering what people may think of me has been the last thing on my mind. I was too sick to even think of doing anything for myself. During my last hospital stay, I had to have nurses help me shower and use the toilet, and when people came to visit me they took me round the hospital in a wheelchair (once I was well enough to get out of bed at all). I felt so awful I was scared to even try to get out of bed without a nurse helping me. If you're feeling that people are fussing over you too much - I think this is a good sign! You know your body, and you feel well enough to be independent despite the pain you're in. You must be very strong. But don't feel bad if for a bit after the surgery you have to rely on other people more - it's better that they care too much than if you were left to manage on your own when you really need help.

I hope your surgery goes ahead as soon as possible. You've made it through the pain this far. Keep going, it will be alright.
11-23-2013, 09:38 AM   #19
Ki3
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Thank you,

I get that that's the way the NHS goes and I'm probably being ungrateful considering I don't know what everyone else is having done. I don't get why they can't secure me a place though? They basically keep telling me I don't actually have a surgery date, they will just see if they can fit me in on Tuesday morning, like there is definitely a free slot that nobody wants, but they wont give it to me in case someone else needs it in future. So everyone else has a date and time booked, where as I'm just a "if you have time, try slot her in somewhere". So I'm not even thinking about getting the slightest bit of hope for Tuesday because they could easily give it away to someone else again. I think I'll be lucky if I get my surgery this month :/
11-23-2013, 10:00 AM   #20
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The NHS is badly organised, but it is difficult for them to predict what beds will be available. Emergencies will come up, people who should be being discharged will develop complications, surgeries that should have been completed in an hour will bring up unexpected problems that mean the surgery ends up taking half a day.

I know it feels that way, but it's really not the case that everyone has a set surgery time except you. Only people who could suffer real harm by being made to wait (e.g. someone with a spreading cancer) can be assured of their places, and only people who get brought in as a totally unplanned emergency will get operated on and get a bed right away. Every other non-emergency patient will be being told the same as you.

It's likely that they have allocated you a space on Tuesday but they don't want to commit themselves to that because they can't guarantee that too many emergencies won't occur. I think it's sensible not to get your hopes up too much, but at the same time remember that your surgery will happen.

You're not being ungrateful. I felt just as mad when I had a surgery delayed at the last minute - it's horrible having your life and your emotions messed around like this. But it's just the result of a badly organised NHS and the bad luck of being booked for surgery at the same time as other people are requiring surgery and hospital beds more urgently. Don't take it personally.

It will happen. Try and relax and make the most of a few more days outside of hospital.
11-26-2013, 07:45 AM   #21
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Just checking in to see what's happening, I'm hoping that the lack of response otherwise means that surgery is going ahead today, if so I hope it's successful and you have a steady, uneventful recovery. If it hasn't then I hope you get a date soon, keep your chin up.

11-26-2013, 10:51 AM   #22
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Hi Ki,
My 5 year old DD will be having her 7th surgery on Tuesday as well. She never cleaned out very well the normal way most people do it. When the did her first surgery to remove her colon is was much easier for her because she got a ton of fluids and the prep all went through her IV. I believe they used an antibiotic and lots of fluids but it cleaned her out good. Sorry they are putting the surgery off until next week. It totally sucks! I hear you there. Now my DD doesn't need to prep anymore apparently it is easy peezy to clean out the small when there is no large left. She will have a permanent ostomy placed. We are looking forward to it because there will be way less issues. Her bum always gave her so much trouble anyway. Best of luck to you hoping Tuesday stays your day, I will be thinking of you.
11-29-2013, 08:38 AM   #23
Ki3
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Thank you all, surgery was done, they found a fistula they didn't know I had so they removed that. I have a temporary ileostomy and I woke up with a Ng tube, catheter and drain, none of which they even mentioned. They removed the Ng tube and the drain just waiting for the catheter.
11-29-2013, 08:41 AM   #24
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Thankyou for the update, I'm glad surgery went ahead! I had a catheter after my surgery which wasn't mentioned before hand but it's standard practice since you dont want to be getting up for the bathroom just after major surgery. How are you doing? Have you managed to get up and about at all? Take it slowly and steadily and make sure your not pushing yourself too much, this goes for eating as well, small portions of light meals that are easy to eat are a good way to go for the first few days. *hugs*
11-29-2013, 09:14 AM   #25
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Hey Ki,

Glad your surgery is now done n over! Hope your recovery goes ok
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11-29-2013, 07:38 PM   #26
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Hi Ki, thats good news your surgery went okay!

I after my surgery I got told about this young girl Thaila Sky who has a Ileostomy and has a youtube channel. She talks about her Ileostomy and how she lives a normal life, socialising and working.

I found it interesting and reassuring to see.

Thought you might be interested. Her channel is http://www.youtube.com/user/thailainthesky

All the best for your recovery!
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11-30-2013, 05:46 AM   #27
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Thank you all, surgery was done, they found a fistula they didn't know I had so they removed that. I have a temporary ileostomy and I woke up with a Ng tube, catheter and drain, none of which they even mentioned. They removed the Ng tube and the drain just waiting for the catheter.
Hi, I've just got a new ileostomy too, and I'm so glad I've got it. Let me know if you have any questions - I'm still figuring things out but I know a lot more now than a month ago when my surgery was done.

Doctors can't always predict what will happen in surgery, so unfortunately it's not uncommon to wake up with tubes coming out of you that you didn't expect. Having the various things removed is a good way to tell how close you are to going home. I had a catheter removed, then an NG tube removed, and when I finally got my IV removed I was recovered enough to leave the hospital.
12-01-2013, 11:29 AM   #28
Ki3
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Thank you all,
Walking is still hard and painful but im getting better at it. Im nibbling on different foods so im hoping they will release me tomorrow. The tubes are all out just got two IV's in now. Having lots of trouble with my ileostomy, yesterday it leaked like 7 times until 3am bjt because its a weekend theres no stoma nurse. A really good nurse who used to have a stoma tried changing my bag and said it should definatley last till monday but a few hours later it leaked. Im hoping only one or two changes tonight and then tomorrow the stoma njrse will help. I'll keep ypu updated.
12-02-2013, 09:09 AM   #29
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Glad to hear you're doing ok.

I was lucky with my stoma when it comes to leaks, but from speaking to other patients on the ward (we were on a gastro. surgery ward so nearly everyone had a new stoma) leaks are very common at first as it can take a while to find the right fit for the bag. At this stage your stoma is very swollen, and it will shrink over the coming weeks. As you begin to eat more the output should thicken and become less watery, which will help with leaks also and should mean your bag fills up more slowly.

Hope you'll be home soon.
12-04-2013, 07:37 AM   #30
Ki3
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Hi all, I'm home now

We have got the hang of the bags and Lily (named the stoma haha)
We realised the hole where the output comes from is at the edge and then part of lily flops over, so we have to literally pick up Lily, tuck the flange underneath, and put her down again. We also have decided we hate one piece bags, all the nurses prefer them and say they are easier but with lily it was impossible, as we put on the flange and bag together, we couldn't tell if she was properly over the flange or not as the bag was in the way, so we put on a bad fit once but didn't realise as the bag was in the way and we left it on :/ it leaked and burnt my skin. Two piece bags are so much easier as we can make sure she is over the flange ring and not outputting under it before we attach the bag, its just so much easier.

The stoma nurse at St Georges was lovely, really nice, just wasn't allowed to work at the weekend when we had our leak crisis but she came on Monday and gave me some powder for my tiny sore spot from the leaks, and she thought I had taken amazing care of my skin. We had lots of supplies delivered today so we have bags you can't see through which I'm terribly excited for, as I don't like seeing all the gross stuff inside :/

Walking is hard and I'm all hunched over, and I can't sit up by myself as obviously using stomach muscles is painful. I can't laugh cough sneeze or hiccup without terrible stomach pains so I'm trying everything to avoid it.
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