Proctectomy a week on Thursday

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Omg how loong they gonna keep u in for mel. My hemotomas are just not going away. And gp called me friday. My hb is down to 7'4. He said i should go for a blood transfution. Im not going to. My hb fluctuates alot. So far this year i have been admited to hosputal 47 times. And ive had enough. Ive had to cut the lidocaine patches in half. Because they was making my stoma lazy. Was making it work only for 4 hours a day. Still i do have to say thoes patches works in pain management. Knees ive been told i may have arthritis. My bum wound is swollen as day 1. Alot of things hospitals dont tell u. Like if u have a hemotoma dont take ibuprofin because it makes ur body white cells go nuts with the hemotoma. And can cause more bleeding. My erm well shall we say man bits from the catheter problem,injury i have well my bits are not healing too good. Got a appointment to see urology end of dec.to discuss if having a tempory urostomy will alow my bits to heal. I do not want this. Tempory as in one year. Im definately not gonna have it . Mel and cheer since i started drinking loads of pomegranete and also cranbery juice. It helps to remove alot of the bacterial and oxidants from my system. My stoma nurse recomended it. Kinda gives urbody a natural boost to fight
. Infections. Im gonna try and get up out of bed. Hurts to walk still. Wishing u all a nice day.
 
Mel hope they let you out soon get better soon and Dooom I'd go for the blood transfusion will make you feel better hope you get better soon too. I had to have a blood transfusion during my first op it was too save my life wouldn't be here without the surgeons. I'm still in pain but that's probs coz I sat on it for long time yesterday I went to cinema I struggled couldn't sit still
 
Cheers cheerbear. I did have blood transfu after my op. But its my liver that doesnt roduce enough red blood cells sometimes. Having had crohns for 30 years my liver is over worked from blood loss. So at times it only funtions at 50%. Im having another blood test on monday then doctors will decide. Im annoyed at sainsburys. I asked a staff member to put the cat litter in the trolley. As to heavy for me to lift. The lil ##### told me stop being lazy. Im filling a complaint.. hope ur sore nuss eases today cheer.
 
Omg didn't know that let me know what they decide and stupid woman I'd complain too good luck and hope so just had another salt bath hoping it works...
 
Hiya cheerbear i got a reply back from sains . There customer service said they want medical proof that im not able to lift heavy things. No frigin problem ive got doctors letters etc. Im not dropping this. Imean i was using my crocthes as my parents could not get wheel chair out of car because car park was too busy. Im also not droping this as how dare a storemanager say to my mum cant she pick it up for me. My mum has spondeliosis. Ms,addisons. Sainsbury staff are suppose to help. Not give u attitude. Just because some one is unwell or disable does not give anyone the right to be talk down too or to be made to feel low. Health is something that can change. Im not letting this go.
 
Good luck just like what my manageress but I'll just let it go for now I'm ignoring her coz they was no need...let me know
 
Well another night no sleep. Weighed my self today ive lost 4kg in 5 weeks. Need to gain weight not loose. Since the op nothing taste right for some reason. Cept for jammy dogers biscuits lol. Hope u all sleep ok. Xx
 
been to hospital, for repeat blood test, went there at 8am. got blood result at 9.30am

ive had two units of blood. saw my stoma nurse again while i was having transfutions, she said it sounds like i may have a partial blokage from this last operation due to adhertions. so she is gona ask my upeer gastro consultant to check things out.

hoping you are ok cheerbear and you to mel.
 
hope you all had a good day, her cheerbear , the gift from sains was box of choc and flowers. mel they let you out yet, im hoping that my stoma output picks up, as it seems like i may be getting a partial blockage. feeling sore still. and agitated grrrr.
 
Hi guys I just got home last night. Hope you both are doing bit better today. I can't believe how much you both are going through. My stoma stopped working last year doom swol up it had prolapsed I really hope that isn't the case for you as its so painful after antibiotics fixed it. How long is it from your protectomy doom? Im terrified of mine opening more as they have opened it abit to drain sone infection away. Green tea is very good for flushing toxins out in always drinkn it. Really hope you both get better soon :)
 
At least you got them I was gonna say might be a voucher to spend. I had to take tramadol last night was in agony and had 2 and a half hrs sleep which shocked me as tramadol normally makes me very sleepy but not this time. So am absolutely shattered could sleep for a week lol and am in pain too. Glad your out Mel and I don't drink any hot drinks as I don't like hot drinks there too hot lmao don't laugh lol :p :)
 
We need our own supplies of gas and air it helped me wonders in the ambulance. Really hope you get sorted with the pain and not sleeping. Rachel if u make the green tea and put it in the fridge over night and put a bit of diluted juice in it its nice thats how I drink it.
 
i definatly recomend the patches, lidocaine, bucheons patch, better effect. spent day in a and e. my bottom woUnd has opened up , and a new small hole on my tummy wound, stoma nurse said i should clean the small hole with iodine. all my tabs has now been changed to soluble ones. my stoma still aint working right. hemotomas still same size. I AM FED UP
 
Now that sounds good Rachel morphine would be great about now. Gas and air is brill though can make you feel bit sick. Awk no way doom i know they dont like to re stitch my wound from fistula has been left open. Its about the size of a 5p and boy is it sore was just told to keep cleaning with warm water. I tried to get the patches today in gps but were having none of it up my dose of codipar frm 15/500 to 30/500 not much use really. Does anyone know if its ok to get into a bath with an open wound or is a shower best?
 
Gp might refuse . Because they are pricey. I presisted. In the end a out of hours gp wrote me prescription. No ?. No try these tabs. No ooo ill increase ur oral morph
 
Hi Mel, my bum was stitched up but when they were taken out my whole wound opened and there was blood everywhere. They took me back to theatre and scooped it all out and I was left with an open wound which they packed every day for about 7-8 months. I was encouraged to take baths which had 2 cupfuls of salt in it. I was very wary as my bum was sore but to be honest I think that was the thing which started everything healing. My bum is now all closed up and absolutely fine :)
 
I wish they'd even give me oral morphine doom they seem to think co-codamol will help vut atm its not even taking a headache away :(. Hi Lyndsey omg that sounds awful they paxked mine for 3 days then it kept falling out so told me to just keep it clean. I had my very 1st surgery in the royal and all was fine. Had my proctectomy in city and experience in there was dreadful just out of royal for the fistula and again given no aftercare advice. Thanks for the advice I will definitely try it glad to hear that you have healed up :)
 
Mel. Stoma nurse told me its best the patient chases up the district nurse. Make note of date snd time u called . Also who u spoke to. This way they cant say y did u not seek advice. Also im taking soluble presisodolne to help with my internal inflamation. Ur gp needs his or her bum sowed up. Then he or she can be given pain meds that dont work. I currently get 2-3 hours sleep a night. O and ty to this op. I may now for sure need a urostomy for a year or more. Because my uretha and bladder is dammaged.
 
I had my surgery in Antrim Area and my GI consultant and surgeon were brilliant. They kept me for 8 weeks to make sure I was ok as I had complications. I also had 2 stoma nurses who were great and I still see them. I had district nurses come to my house every day for 4 months and they then decided I was getting depressed and it would be better for me to get out and go to the GP's surgery.

I can honestly say I was looked after really well and feel so sorry for everyone here who seem to have been left on their own with no aftercare, that should not happen after such serious surgery.
 
Thanks doom I will get onto that tomorrow its a joke they just leave us like this. See your inflammation is that a result of the surgery? Iv been left with fluid in my pelvis which they won't drain until they see if it comes away on its own after a few weeks they said it is from the surgery. Oh god dont fet ne started they have no idea what its like iv been close to cracking up with them. That is awful hopefully you won't have to have it for to long. When will you find out if you will need it. Im always here if any of yous need a bit of support or to let of some steam :)
 
Im glad to hear there is a decent hospital here Lyndsey and that you have got the care all patients deserve. My proper consultant was brilliant and my stoma nurse also, but the wards change docs every week so I got a different story each time. I had just got over my depression but have felt it coming back gp has referred me to mental health team today hopefully get on top of it asap and maybe I will heal bit quicker also. I stumbled across this forum by sheer luck but im so greatful to have found it. The people here have give me more help and advice than the docs
 
Ill find out eithet 20 dec or 8 jan. Im just fed up. I was 65 kg in oct . Im now down to 50kg. My inflamation is internal. And external ie my barbie bum.
 
I really hope it clears up for you before then and you don't need it done. Im sure you are fed up im only 3 weeks into this and fed up feel bad for complaining so much when I hear how much and how long you have all been going through this. I definitely didn't realise just how much could go wrong. That is some drop in your weight :ghug:
 
what do you call a dinosaur with a sore bum!
answer: a stegasore-ass
a tyranosore-ass
a megesore-ass

All 3 above answers is also what i call a protectomy
 
Megasore ass would be the most likely lol. How u all doing today? I thought I would do a bit of Xmas shopping bad idea standing in que ready to pass out in pain as forgot to bring painkillers to take at the right time feel somewhat like iv a hot poker where the sun don't shine :(
 
Im Feeling sick today. Mel im doing all shopping online. Its good when you get other things delivered thats not bills. Hows u cheerbear.
 
Full of cold and in pain with my bum so basically feel like shit lol blocked nose and cold affecting my chest which isn't good as I have asthma :(:(
 
im ok had a sizzure, so usual, head ache, dizzy, and sore bum. hope ur flu is gone morow cheerbear.
 
Me too but think it will be worse tomoz as I went to Whitby and it was awful weather so windy on the plus side I'm done for Xmas. Hope you feel better tomoz
 
hows every one, im home just out of hospital, AGAIN. INFECTION FROM MY TUMMY WOUND, HAD GONE TO MY NERVES , ty distric nurses for not bothring. i now cant walk, its now a othopedic surgeon thing because the nerves are swollen, been told leg use may return in time, depending on nerve damage. and what or if the orthopedic surgeon has to operate. so im using crotches and a wheel chair, im fed up.
 
Thinking of you :( big hugs here if you need me :( let me know how it all goes keep me posted hope it goes well. I'm still in pain
 
ty cheerbear, im at the point now that im gonna start saying no no noooooooooooo to doctors. they need to invent one of thoes star trek gizmos that takes away pain.
 
Hi guys. Sorry to hear you both having a bad time. Doom they should give you some options. Haven't been on much back on antibiotics and antidepressants which are knocking me out. Hope you both get well soon
 
Hows you both cheerbear and mel. Hows ur weekend been. Im just doing whst i can. And trying to stay positive.
 
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Cheerbear and mel hows you both. Im well still cant use my legs. Hoping they start working soon. Hope u both ok.
 
infection from eppi, plus side effect of my sizzures. I NEED A NEW BODY. OR A FULL MANUFACTURES SERVICE.
 
hope you all have a nice christmass , less pain, and good times, me hoping santa brings me some DECENT PAIN KILLERS,
 
Hi how are you both hopefully doing better. Iv just been informed that im going back for another op. Apparently surgeon wants to open bum wound to look inside for some strange reason and to let some fluid drain. Im in two minds as whether to go or not as the wound won't be stiched up again and will need packin until healed :'(. Feel so frustrated as though the wound was just starting to heal over
 
That's what I had to get done Mel, it wasn't very nice or dignified when it was being packed but my nurses were all lovely and mine is all healed now. It may be the best thing, it may never heal the way it is now whereas will heal if it is being packed. I wish you all the best :)
 
I'm going to see surgeon next month see what they say... I'm hoping I don't have to have same thing :( when they going to do it? Here for you sending you positive vibes
 
Should I still have pain and problems sitting 8 months after surgery? :( apparently it's healing fine so why am I still in pain
 
Hi been to hospital need a MRI scan and then go from there. Probs need more surgery he said it's not normal after this amount of time. I'm just glad it's going to get sorted. Am in agony the longest I can sit for is 10mins
 
Hello Cheerbeer,

I am about to undergo a proctocolectomy. I am very nervous about it. I'm unsure if this is the best thing for me.

How are you doing now? Do you have any regrets? Have you healed well? Any advice for me?

Thank you,
Micah
 
Hi sorry I'm not the best person to ask about it as I'm having a lot of problems with it I had mine 9 months ago today and am still in agony. It's affecting me so much can't sit for long, can't stand for long, can't lay and can't sleep. I'm not healing very well it's still partly open and still leaking. I need another op to sort it out but before that I need a MRI scan. Sorry to have to tell you this coz it'll worry you more but my surgeon said it's not normal so might not happen to you. I might just be one of unlucky ones:( he squeezed and prodded at it I screamed :( but puss came out he said. At the moment it's the worst decision I've ever made but hopefully will get sorted soon. Just want to be pain free and want it over and done with might not say this afterwards:( I'm sorry it's not better news for you and I'm sorry to scare you even more. I hope you don't have as much problems as me. Hope it's goes smoothly and well keep me posted. Get well soon
 
What I can say tho it takes time to heal shouldn't take as long as mine has but mine isn't normal so don't worry it might not happen to you there are a lot of people on this forum that have had this op without any further problems I hope your one of them. Go easy on your body as it's major surgery and just rest, rest, rest. It'll take it out of your body and will take months to recover from it as does any op. Have you got a date yet?
 
Cheerbear,

Sorry to hear about the issues you are having with this surgery. I truly hope and pray you get better soon. I'm scheduled for 3/2. However, I'm not sure if I will go through with it. I'm more hesitant because I fear that even after recovery, this may not be the end of the pain I am dealing with.

Thanks for the feedback.
 
Keep me posted and I'd speak to the surgeon or stoma nurse about it. Keep me posted if you do go through with it I hope it all goes well for you and thanks a lot
 
Just got my appointment through for MRI scan 21st march absolutely petrified :(:( I've got worse to come after this I'm scared of it all :( feeling emotional and keep breaking down into tears :(:( I'm stressed
 
Please try not to stress Cheerbear. The pain you have been through will have been much worse than what you will go through soon. I suspect they may take you back into surgery and scoop out your 'tailend', it will then be packed. That's what happened me, yes it wasn't nice and it was humiliating to get packed everyday but it wasn't as sore as the pain before it was done and you get used to showing your bum to half the hospital! Just be thankful that finally something is being done to help you :)
 
I don't think so, I wasn't cut open again. They just took me into surgery for about 30 minutes and scooped out what had been my bum hole (sorry maybe too much info). I was basically left with a big hole which instead of being stitched closed as it had been in the first place was packed with gauze type stuff. This meant it would heal from the inside out and there would be no room left behind for clots to gather as that's what happened when I had been stitched. The pain from that was awful and it caused infection. Once the packing was in place it was changed everyday. I won't lie to you, it did take ages to close in and I thought it never would and got very down but it did get better and the pain was nothing compared to what I gad before. I know it's easy for me to say you will be fine as I didn't believe anyone when I was told I would get better, but you will, you just have been through an awful time just to even get an MRI and have been in pain for so long. I was lucky that my surgeon knew what had happened and got it sorted quickly.
 
Sounds awful and it has been far too long mine hasn't healed at all in a few places and is still open. How long did it take to close? I'm currently in agony and painkillers haven't worked so won't be able to sleep. I'll find out exactly what they'll do after MRI scan :( does it take you long to recover after op:( he said it won't be as bad as first two but I beg to differ. Still will feel weak for ages and knackered
 
It does sound awful and when they told me what they were going to do I was devastated. It took 8 months for mine to heal but I was so ill from the whole operation and so underweight and not able to eat that it took longer than normal. You should be ok after surgery in a few days as you will already have healed from your tummy wound. Everything happened for me all within a few weeks and I still had 57 staples down my front when they took me back for the second surgery!

You will probably not need too much scooped out as it will maybe have healed a good bit over the past months.

After surgery you will be sore but more comfortable than now. You should be able to manage with pain killers unlike now.

This may all just be talk though, you could have your MRI and only need a small procedure, I hope I haven't scared you, I just want you to know that you are not alone and that things really will improve. My experience was worst case scenario and I am still here to tell the tale :)
 
Known my luck it won't have healed always have bad luck. Feel like the unluckiest person on earth :(:( oh god they won't go through my belly again will they I'll be in agony with stomach and bum then :( urgh will I have morphine lol I'll need it. I'll keep you all posted
 
I am almost sure they will not go through your tummy wound. I wasn't given morphine after my bum surgery because honestly you will not need it. I think you will feel so much better after they do it and while it will be a bit sore and uncomfortable it won't be anything like you are experiencing now. Your surgeon has told you this operation won't be so bad and please believe him. I was terrified but it wasn't as bad as I expected but after all our experiences it's hard to believe that.

Do you have an IBD nurse that you could ring to explain how sore and scared you are? I have a nurse who I can just ring and she then consults with the surgeon or consultant and gets me sorted out ASAP and sets my mind at rest.
 
Cheerbear,

We will be here for you. You have already been through ****. It does sound awful, but hopefully this will end it.
Like I said before; make sure you have a driver, and tell them to give you morphine before they even start. That will give you much needed peace of mind to get through that part of it. THEY BETTER LISTEN!!!
thinking of you
 
Thank you hoping it all goes well this time around :( they said two weeks after scan they will do it :( I'm hoping I get knocked out for it and I will ask for morphine if they don't give me a pca thing. Expecting to stay in a few days to be treated with antibiotics afterwards. I'm so dreading it all. Argh I broke down into tears last night thinking of it all. I'm the unluckiest person :( Known my luck it'll be more complicated coz all of it hurts :(:(
 
this sucks, last sunday i found two fistulas in the priniual area, great more complication, spent monday in a&e , only to be told, that its a complication of the surgery and also crohns. got annother scan on the 10th, only after scan will they decide what meds to put on for the fistulas, just sick and tired of this. hopping every one is ok .xxxx
 
I'm not ok I'm worried, stressed and emotional etc I've got op on 25th April as a day case I've got a 3cm blind opening sinus I don't know what that means but they going to have to open it to clean it out and try to get it to heal. I don't want this it shouldn't be like this my last one should of been my last one. But I'm such a unlucky person I need another.. I'm absolutely dreading it maybe it's coz of the last two ops. I've done this twice before and it never gets any easier. I don't want this but don't have a choice again. I can't live like this anymore. Hopefully it'll be worth it in the end and I'm hoping I'll get plenty of painkillers
 
Developed a cold 12 days before surgery :( urgh this all I need hopefully it'll still go ahead and hopefully cold won't last long... I need to go for a pre anaesthetic assessment sometime haven't got appt yet so hopefully I'll be ok by this time.. It happened last time as well I developed a cold before surgery why does it keep happening? Is it coz I'm stressing or just run down?
 
CheerBear, after my proctocolectomy they sewed me up underneath but it just gathered blood, which then burst out, giving me a terrible fright. They then put me back into hospital, opened me up underneath again, cleaned it out and decided to leave it open to heal from the inside out.

It was a very large hole and took about 7 months to heal completely, with the district nurses coming every day to wash it out with saline and pack it with alginate (seaweed) ribbon dressing. This worked extremely well and I didn't have any infection at all - nor any antibiotics. It was a bit sore, especially at the beginning, but the nurses rang 40 minutes before they were coming and I took a painkiller so that it wasn't painful while they were working.

It healed very cleanly and, although it's still a bit tender (14 years later) when I'm riding a bicycle or sitting for a long time on something like a flat wooden seat, I have had no infection or other trouble with my butt end since then.

Try not to worry too much. I know that's easy to say but I have been through it - and come out the other end! :hug:
 
Sounds like a nightmare maybe that's what they will do to me :( dreading it all was it day surgery? I'll let you know how I get on when I can :(
 
No, not a nightmare. Just a long process of healing - I did have to learn patience. :)

I was in hospital for a couple of days. I was still recovering from the proctocolectomy, too.
 
Oh that's not still recovering from the first one. I don't have patience :( and I have recovered from proctectomy it might not be as bad as yours then if I don't need to stay in but that could change.. Think I'm dreading it all coz of the last two ops all I have are bad memories. Dreading pain
 
I am meant to be having a proctectomy this Summer but hadn't realised the full implications until I read this thread. Rather than scared I am now horrified! I hate that you all are having such awful problems.
 
Daisy- sorry to hear we have made you petrified :( good luck hopefully yours will go without any major hiccups or complications. It's not easy and you have to give your body time to heal. It's major surgery. Hope your ok
 
Hi Daisy, sorry we have made you scared. It isn't nice by any stretch of the imagination but you will get through it. Most people do not have these problems, we are just the unlucky ones. Even so, we are still here to tell the tale. I am doing so swell now and am going to Spain in 2 weeks! Although I have to wear a swimsuit instead of a bikini, but that's a small price to pay for my health :)

It does get better, even if you think it never will, I have been there and came out the other side :)
 
I think I hadn't really thought about the full implications of the operation regarding the bottom closure. I only panicked because I had fistula surgery when I was young and it took a year to heal, and the pain was hideous. The ileostomy side of things I am fine about it as I know that there is no other choice. I told my dr I wanted a curry and we had a laugh.
 
When my surgeon told me what surgery I was getting, all I could see was that I was having a bag. I was devastated, the bum thing didn't even seem to enter my head. It was as if I couldn't deal with the 2 things at once and I blocked one out.

I have to say the rectum removal was horrible, but only because I developed a large clot in behind where I was sewen up. If that hadn't happened I would have been ok. Instead I had to go back to surgery and have it all scoped out and then packed for 8 months. I thought it would never heal and got very depressed, but it did heal and I am doing great.

You could be totally fine and just need stitches and once they are out you will be great!
 

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