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These feelings are normal I'm afraid :( I didn't sleep much the night before. Good luck hope it goes well and keep me posted thinking of you.
 
ooo turns out u cant get the special cushion from ur stoma nurse, the company that supplies ur bags etc can supply u with the cushion, if you get free prescription,
 
Ok surgery was on 23rd. Came to hospital at 07.00.
Went for surgery at 09.00
They put a countinus eppi. Operation took 3 hours. From surgery they sent me to recovery then back to my ward. Epi had to be cranked up. My god the pain.
Day 2 oh dear. Eppi has made me loose all sensation on my left side. So a lovely junior doc. Switched off epi machine. Left me in sooooo much pain for two hours untill a pac machine with oxynol was put in. .
Day 3-5 no out put from stoma. Hence they do nasal gastric tube to asphiate drain fluid from my stomach. Total removed 3litters.

Oh also my man bit have swolen to the size of mangoes

So cather cannot come out.

Day 6-7.

Pain arrghhhhhhh ac is turned up.

Day 8. God it feels good to shower. Pac is taken. But night staff forget to give oral oxy pain killers.

Oh also have bladder infection.
So catheter has to stay in for 1-2 weeks.

Day 9 the pain fuckin hell.but will be going home today. Cather has to stay in place for 1-2 weeks





Xd
 
Omg sounds like a right nightmare but glad your going home take care and take it easy surely if you have bladder infection your better off staying in hospital? Good to hear from you keep me informed. Hoping the pain doesn't last as long for you as it has for me.
 
Blader infection is ok. No pain there but catheter still in place till friday. Have a leg bag. The pain is from the op. And from were my back passage use to be.

Im gonna try a tense machine tonight.
 
Catherter bag that is secucured to one of ur legs with straps. Tense machine well ut zapps u with mild electric schocks. Also used for labour pains. Just like to say tense machine did no work me. :pika::pika:
 
Sorry to hear that it's not worked I just found painkillers the solution every 4 hrs but had to rest all the time coz didn't want to move coz it hurt so much. Still hurts now nobody seems to know how long pain will last for.
 
God i wish they had some decent painkillers for this.

I havent slept since saturday. Plus stoma stoped working lastnight. Zero out put.my stoma nurse came at 8 am and has put hot water bottel on my left side. That has thank fully kick start stoma. I gotta go do bloods today.
 
Oh god can't you go to your doctor and ask for strong painkillers. Why did your stoma stop working? Did you have a blockage? Hope you get some sleep soon. I was sleeping during the day and at night but not very well at night kept waking up coz of pain. Big hugs thinking of you let me know
 
Back home. Ct scan showed i had had a bleed that caused a hemotoma. Docs said best leave body to absorb it. My inflamatory markers have drop. Im in sooo much pain. Also trying a heat pad it helps a bit
 
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Hiya cheerbear. What possition did u find it easy to sleep. I havent slept in 6 days. Pain is not going down. And walking hurts. Wish they had a pain killer that works
 
I have to sleep on my side either my left side or right side but sometimes I wake up on my bum :( have you tried tramadol? Mine hurts as well :( mines been 5 months does it ever go away?! :(
 
Im intolerent to tramadol. So im taking paracetamol solubul., ibuprofin solubul, oralmorph,oxy.

Nothing touches the pain. The cushion thing my stoma nurse ordered for me is a joke. So im gonna order thick firm foam off ebay.
 
I don't use anything just sit on my side but I really struggle to eat it's so uncomfortable and hurts. I go see surgeon in January but don't think he'll be able to do anything. It's still draining fluid and still got a hole so basically nothing has changed since I last went to see him :(
 
I found yogurt helps stoma to work. Also hot water bottle on the side helps stoma to work. Im suving on jam dogers and custard creams. And milk shakes.
 
My stoma is fine it's my bum that's got hole in it it's like it's been sewn up wrong.. :( I'm not sure whether it should be still draining fluid as well. Has your bum got a hole in it as well? Sorry to ask it's just so that I know whether mine is right or not...
 
Mines got no hole in it. But hurts 24/7. Ct scan did show a small amount of fluid.
Ive got a small hole just below my belly button that clear fluid is draing from. Distric nurse dont want to know. So im disinfecting it twice a day and chainging dressing. Im also gonna get some iodine disinfectent. U need to see ur gp. They might pack it. Or seal it for u.
 
Mine got a hole in and hurts 24/7 and also drains fluid. I've not got anything draining from my stomach tho. When I went to see surgeon in July he said it could take 6 months to close up but it's 6 months on 23rd of this month and it still the same so don't think it's gonna change. I'm nervous :(:(
 
Demand a ct scan from ur gp. Jan is 2 months and a half a way. Gp cannot refuse if you put it in writing.
 
Help me!!!! Plz someone when does this pain go away my parents are thinking they might have to go back inside to have a look :(:(:( I'm in agony it's not getting any better :(
 
Have u tried heat pad i find it helps a lil bit. But ain is so bad i cant walk or sleep. Just sooo tired.
 
No haven't tried that one nobody mentioned it so wasn't sure. Might give that a go I can't cope nearly 6 months of agony :(:(:( just had to take painkillers :(
 
Im thank full for my mum. Im round hers for now. But next week i go back. To mine dont know how im gonna cope.
 
Hi Cheerbear

This is the first time I have posted but have reading for a couple of years. I felt I had to write as you are having a terrible time and I went through the same operation as you in May 2012. I feel really bad for not writing to you sooner as I have been reading your posts and things are not getting any better for you.

I got my bum stitched up after surgery but when they took the stitches out I kept complaining of really bad pain but was told it was just things knitting together. However about 3 days after the stitches came out I was in so much pain that I turned round in bed to ring the buzzer for the nurse and as I did so a big gush of blood poured out and soaked me and the bed. I have never seen nurses running so fast and I just screamed. They got me cleaned up and the surgeon came, he thought it had been a clot that burst through so decided to leave it a few days but it happened 3 more times and was terrifying. The pain would build up and then the blood would gush out, once that happened the pain went away. The surgeon gave me a CT scan and it showed a golf ball sized clot. He had to operate again a week after the stitches came out and instead of it being stitch again, it was left as a hole which was packed everyday. The idea of this is so that it heals from the inside out. He said it would take 3 months to all close up but it took 7 months and I saw a nurse everyday.

I'm sorry this was long but I think you may need your bum scooped out like I did and then have it heal from the inside out. Now that mine is fully healed I have no problems at all, no pain and no seepage. Your problems seem so like mine before I had the second surgery but my surgeon knew this might happen and was prepared, he said it is quite common in people who have their rectum removed and stitched up.

I really hope you get some relief soon but I would advise getting a sooner appointment with your surgeon than January.

Lynsey
 
Lynsey, I'm in agony tramadol hasn't kicked in yet :(:( I'm so sorry you had to go through that all the blood didn't sound good luckily mine hasn't done that just absolute agony :(:(:( I'm scared incase he has to operate again your post had me in tears for some reason :(:( what is the average time for pain to go away?? It's 6 months on 23rd of this month surely it isn't normal to go on this long :(:(:( I'm scared but if it needs doing again then it'll have to. We've been through enough as it is don't know how much more I can take of it :(:(:( thanks for your reply tho hope your ok now
 
Oh I really didn't mean to make you cry. I just wanted you to know that I think you need seen to. I didn't mean to scare you either as that surgery was simple, I was in and out in about 30 minutes. All he needed to do was scoop out the area behind the bit that was stitched as it was collecting fluid and was becoming infected. Once it was all scooped out and packed I was so much better. I hated the thought of getting it packed everyday but they let me take tramadol before hand for a few days until I got used to it and after that it became like second nature. I don't think you should be in pain 6 months in but some doctors told me it can take up to a year to heal and in my case it took almost 8 months until my bum healed from the inside out.

Could you maybe see your Crohn's consultant as he checked me as well as my surgeon and made sure everything was going ok.

Please don't give up, it will get better. I am doing so well now, I'm back to work full time which I never thought would be possible and have even been on holidays twice.
 
Don't worry it's just me I get upset easily. Mine is still draining and has still got a hole in bum where not stitched properly. Just didn't expect this much pain when signing consent form just want it to stop hurting now had enough of it. I don't think I have a Crohn's consultant as I don't know whether it's crohn's or colitis that I had mine was bad too tell and had to have emergency life saving op after 4 months of suffering with it. But only had a month of treatment coz left it to late to get it sorted out . Sound like your doing fab now :)
 
Mine was life saving too even though I have had Crohn's for 12 years. I had a big abscess that ended up fistulating into all my internal organs. If they hadn't operated when they did I wouldn't be here today.

I know how you feel and just want to encourage you that things will get better. I was just thinking back to this time last year and I was so upset and cried at the slightest thing. I thought I was never going to get better and couldn't deal with both my ileostomy and my bum at the same time. I was so discouraged with my bum because it just seemed that it would never heal but it did eventually. My doctor also gave me antidepressants which I refused at first but then I had to admit defeat that everything was too much for me. Once I started taking them I started to feel more like my old self and saw light at the end of the tunnel.

Hang in there, maybe get your GP to take a look and see if perhaps the hole you have needs a little packing. I had mine packed with silver gauze which encourages healing and stops infection. Or perhaps yours is just a persistent wee beggar that will heal in its own time. I couldn't cope with all that pain though so I take my hat off to you, I'd be away to hospital :)
 
Thank you don't feel strong tho :( that's what I was like after 1st op wouldn't be here now. 6 days before my 21st birthday!! Had to have my blood replaced in theatre. Took me three and a half months to recover from it and three months for pain to go away. Thought that was bad enough this one even worse pain wise. I was depressed if it weren't for my parents tears everyday and 6 weeks in hospital but was at deaths door. Hopefully tomoz will be better for me but it hurts 24/7 :(:(:(
 
How you feeling chelle. Had blood done tues . My inflation markes is down to 17 from 31. So thats good. I ordered foam for sofas off ebay to make my own cushion. Total cost for 7x layers of 6cm. £9.00 inc &p
So far working great. Having dificulty walking but that becase of damged to the nerve in my groin . Cather comes out friday, yeaaa looking forward to it. The pain is stil bleeeppppppppppppp.
I cleaned the the area were the small discharge. Was. Bought iodine antiseptic online. Been two days and now healing. Distric nurse has not bothered to check.
 
Still hurts :( my district nurse never bothered changing my dressings and never gave me enough to do them myself. She never checked my wound once either so basically a waste of space my parents were nearly gonna complain. Think I'm gonna buy a cushion. Glad your inflammation markers have gone down for you. Bet you can't wait for Friday let me know how it goes :) hope things settle down for you soon keep me posted
 
They have changed my appointment from January 20th to February 10th! Great! Am in pain and have to wait longer:(:( I'm going to get my mam to check it and if it doesn't look ok we are going to move appt forward if it's ok leave it as it is. I think he'll say it just needs time to heal but it's nearly 6 months next week how long is needs more time? I'm hoping he'll do something to it but the only thing he can do is open me up again to have a look at what's going on
 
Hiya cheer . Well thursday had to be rushed to a&e my left testicle was swollen due to the op. And now i. Have been told sweling is due to infection from cather. Stayyed overv night in hospitsl. So im on antibiotics. Pain is really bad. Cant move alot today. Hows u cheer.


Got. The new cushion to perfect for car journeys.

Got it off. Ebay

http://pages.ebay.com/link/?nav=item.view&id=321243395898
 
As an eBay Associate we earn from qualifying purchases.
Don't be afraid, whatever they are trying to do is only to benefit you in the long run, I've had countless endo and colonoscopy sand I hate them but it's just something usage to get through, don't lose your spirit, being a gym instructor I find it quite difficult to gain momentum a lot of the time, which is why I will be running July 2014 Spartan London race in aid of crohns it'll be tough but belief is key, so don't worry keep calm face it head on!! And u can conquer anything :)
 
I'm in absolute agony constantly 24/7 and they've changed my appt from January to February great! :-/ I think I'm gonna have to have another op to see what's going on but we'll see what he says. He might say needs more time... I'm gonna get my mam to check it and if it looks ok leave it till February but if it doesn't bring it forward.. Can't cope ;( sorry to hear hope everything ok soon for you
 
The concert was awesome paying the price now :( bum killing me the car journey I struggled and it was only 40mins drive :eek: :( seemed longer coming home.. I stood all the way through concert apart from the supporting act and I struggled to sit so stood. I had no problems with my stoma thank goodness
 
been a hell of a few days for me.

sunday night catheter malfunctioned and came out balloon still inflated OUCHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH. hurt like !!!!****!!!!!. monday spent al day in a&e doctrs said as im peeing ok like on the hour every hor they wont put a cath back in, as trauma cuzed from the faulty cath, been told blood in urine will stop in abut 4 days, the term hurst when you peee well it ******* !!!!!!! when i do.
 
God i wish i could sleep fed up of the pain. Wish doctor had told me more info. My apetite has dropped.
 
Saw my surgeon today. Sooooo sory ur still in pain he said. All i could think about was asking him which bmw or audi is his. Id see how long his pain would last.
 
Hi cheerbear12 and doom just new to this forum i fully understand what yous have been through. I had the same surgery as you both there on the 12th and by god if id have known the pain id have been left in id have refused to get it done. Iv had continuous probs no1 has looked at my wound at my bottom nor have i been told how to care for it. There has been a considerable amount of oozing iv asked for help but its fallen on deaf ears. If you's have any suggestions id be so greatful. I hope yous are on the mend soon if only they could keep us under sedation untill we are fully recovered :(
 
Hiya mel. I have been using salvon fist aid wash spray it has cetrimide in it. I clean my tummy wound and my bum wound twice a day. I too havent herd from distric nurse. Been nearly a month and no distric nurse. If. Oozing is bad book to see ur gp. Hope this helps. Im trying out germolne anisthetic cream tonight i need sleep. And not a annoying bum.
 
I thought of trying salvon but was afraid as its only been 11days from op thought it might aggravate it, but i shall give it a go thank you. I think there is no thought into aftercare anymore your just shoved out the door clueless. I said i will give it till monday and get on to gp. Oh i know the feeling it seems a lifetime ago from a full nights sleep. Thanks so much for the help. I really hope the cream helps you and you get a good nights sleep :)
 
Hi Mel I'm 6 months post op today and it's still agony and leeking from wound. I've just been told to keep it as try as possible but how can you when it's constantly wet down there. I've not been told how to care for it either. I'm sorry I'm not much help I still can't sit on it for long. The wound is slowly knitting together even the hole I think it's just taking time... I hope you feel better soon and get pain under control soon what you taking for pain? Have you tried using a hot water bottle for it?
 
OMG Its hard to think you have been left in such discomfort and pain that length of time. It is near impossible to keep the wound dry its not like you can get much air around there. Even just talking to someone is a help in a way. I hope you start to heal quicker that is such a long time. Im finishing my last dose of oxycodone tonight then its tramadol and paracetamol which im dreading. i suppose il never know how much pain il b in untill my meds are reduced. I find alternating from side to side when sitting helps slightly didnt even think of a hot water bottle will try anything. Thank you hope you feel better soon there is nothing worse than this pain and being unable to sleep :(
 
Yeah I also find sitting from side to side helps I can't still get comfy. Really hope yours doesn't last as long as mine has. I think it's worse than ileostomy surgery pain wise that lasted 3 and a half months. I've been prescribed tramadol and paracetamol too try not to use tramadol now it makes me sleepy. But at least when I was taking it I'd get some sleep. How long ago was op?
 
Using bucheons patches today. Pain is really bad. Gonna ask gp to refer me to pain clinic.if gp dont im going to a vet.
 
HI! Yes the pain is definitely worse from the illeostomy op Cheerbear, im only down to paracetamol now tramadol have made me sick. I only had my op 12 days ago but wanted info on how to look after my wound as i was never told. I really hope you get sorted soon that seems an awful long time to be in such pain. Oh doom i really feel for you hope you find the right pain relief. At least the germolene helped even if just for a wee while
 
Went to out of hours today. Prescribed lidocane patches. . So far lessssss pain. Id say 30% less. Mel id recomend the lidocaine patches
 
Hi Mel I wasn't told either think they expect you too know.. They just leave you :/ tramadol makes me sick but think it's coz it tastes of aniseed and I don't like aniseed so take it with orange juice it takes taste away and I keep it down. I've got hospital in February lol. Hope you both feel better soon here for you both
 
HI glad you are getting a bit of relief doom. I rang for appointment and was told nothing for 2 weeks so I said I was just out of hospital the earliest now is wed so I will see if they can give me them patches as i struggle swallowing tablets. I had said that to my hubby Rachel its out the door and your just meant to know how to deal with it all. Thats an awfull long wait for hospital all things considered. My doc said id be sent for within 6 weeks I needn't hold my breath lol. Hope you are both are feeling somewhat better today I think if we could all sleep better we would maybe cope with the pain slightly better. Thanks Rachel same here :)
 
hiya mel and cheer. i got a phone call from the pain management as the out of hours gp i saw sent them a message. they strongly recomend lidocaine patches and buchens patches. been 24 hours since i started using lidocane patches, and pain is 30% less. lastnight to sleep i had bucheons and lidcane patches on, I SLEEPT FOR 7 HOURS:eek2:. mel dont yr gp do on the day appointments. i too am allergic to tramadol, plus my stoma nurse told me if you have an ilestmy and you take tabs not all tab is absorbed, its best take soluble paracetamol, or liquid pain killers.
 
Feel so tired today. Havent done anything just feel so tired. My bum feels weird throbing none stop. Really dont feel like eating
 
Hi guys hope yous both feel better soon. Thanks for asking and sorry couldn't reply. Went to gp and was sent to a&e yesterday. Hap a wee op today to remove a fistula that had spread infection from my wound at bk into my pelvis. Wound being left open and to be packed daily dreading this :(. Of for ct in morning to make sure they got everything clear
 
Aw sorry to hear that and hope it good news let me know hope it heals ok I'm in pain but I had a salt water bath for first time see if it helps it heal quicker... Still in pain tho
 
Thanks Rachel so do I, I will do. Awk I really feel for you I cannot believe how long you have been left in this pain. Let me know how the salt baths go! You are probably already doing this but just incase I found if I sleep with a few cushions between my knees it was helping to dry the wound up somewhat. Only tried it out last few nights.
 
Mel and cheer hope u booth feeling better. Think im getting a cold. Just feel so tired. Mel hope ur op went ok. Im gonna try and sleep. If not shop on ebay
 
Hi all hope yous are feeling better today. Im not to bad at the min doom it will be when the packing is took out cleaned and changed il be so sore again. Getting fed up looking at these hospital walls. I need an escape plan lol. You should see if you can get something to help you sleep doom :ghug:
 

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