# Proctectomy a week on Thursday



## CheerBear12

Hi I'm feeling very nervous, scared and emotional. Hoping it won't be postponed again coz I can't take this anymore just want it over with even tho I don't want it all. If I'm like this now can't imagine what I'm going to be like on the day  -.- I know this is normal but I'm trying not too stress as much coz I don't want my hair to fall out again... Do you get put on steroids afterwards to help build your body up again? And are you in intensive care for a few days after? This is all so hard for me  I'm such a worrier


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## Dukeis

I was not put on steroids or put in ICU even though I stopped breathing on them. They were going to send me to ICU, but then my O2 sats raised to normal and they canceled it.


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## Jaano711

Hi Cheerbear,
Waiting is the hardest part. I threw myself into baking to keep myself busy. I also did the whole leg wax, eyebrow shape and colour and eyelash colour at beauticians for a distraction and then had a cut and colour at the hairdressers. This was a two pronged attack, the first, it was a distraction and the second I knew I was going to feel like crap but at least I wouldn't look like it.

I didn't have steroids post op, I haven't heard of this occurring. I went to ICU for 48 hours post op. Itwas the protocol at the hospital I was in, once again this will all depend on your surgeon and his preference. As you already have a Stoma your op will be different to what I had so unsure. I did make sure that there was a nice comfortable cushion for me to sit on for the trip home. Your bottom will be tender for a little while. 

I am hoping that you have no more changes to your surgery date. all I wanted to do as I was wheeled down to theatre was jump up and run, but I knew that was not a good choice! I was also frozen with fear and cried until I went to sleep, not hysterically, but definitely not normal for me.

I am thinking of you and will be checking to see how you are going.
Stay brave
Jano


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## CheerBear12

Thank you I will be working right up until the day before so that will distract me a bit. I broke down into tears the other night coz of it can't imagine what I'm going to be like a week today. I'll be an emotional wreck :/


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## CheerBear12

I think I've got a throat infection now keeping getting sore throats and my throat is really red with white things on it this is all I need think its from a summer cold I had a couple of weeks ago had sore throat ever since  hoping they still go through with op on Thursday?


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## Jennifer

Could be strep throat or tonsillitis (do you still have your tonsils?). Might be best to have a doctor take a look to make sure you're still go for surgery or at least call up your surgeon and GI and let them know just in case. They will decide if its ok to go forward with the surgery as being sick may cause complications with the anesthesia and could result in you being sicker after surgery. 

"If you have a cold or the flu, it is likely that your anesthesia and operation will be postponed. If you have a sore throat with no other symptoms, then your anesthesiologist may consider that you can proceed, although your throat may be very sore afterwards. If the sore throat is an early sign of the development of a cold or the flu (and it isn’t always), then the resulting illness may be hastened and you may feel extremely unwell after the operation. Again, the decision to proceed rests with your anesthesiologist and your surgeon, although if you decide not to proceed your wishes will be respected.

There is an increased probability of respiratory complications when anesthesia is administered to a patient with an established cold or influenza." http://www.allaboutanesthesia.com/index.php?option=com_content&view=article&id=100&Itemid=137

I hope you get better and that you surgery goes as planned and that you have a speedy recovery. Keep us posted.


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## CheerBear12

Yeah I still have my tonsils and I had a cold a couple of weeks ago with a sore throat and the cold has gone but still got the sore throat from a couple of weeks ago ugh but I feel fine apart from that. Hopefully they'll do op and then treat sore throat afterwards... I'm scared and I will keep you posted and thanks


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## CheerBear12

Will they notice it when putting the breathing tube in?


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## Jennifer

My guess is yes.


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## CheerBear12

I was hoping you were going to say that. I'm hoping they don't postpone it cos just want it over with so hoping they still do it but just treat my throat afterwards.


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## CheerBear12

Got my op tomoz wish me luck guys I'll need it  feeling emotional, stressed and nervous


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## 2thFairy

I bet you'll fly right through like it's no big deal.    Well wishes to you!!


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## Dukeis

CheerBear12 said:


> Got my op tomoz wish me luck guys I'll need it  feeling emotional, stressed and nervous


Thinking about you! Hope all goes well for you and your recovery is quick!!


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## CheerBear12

Thank you x x


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## CheerBear12

:--( wish I could sleep its nearly half 11 here need to be up at 6.15am


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## Dukeis

Hopefully you are resting now. I never slept well the night before.


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## Jennifer

Hope it goes well. Keep us posted when you get a chance.


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## nicola30

good luck xx


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## Jimena

Good luck!!!!!


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## Jaano711

Hoping it all went well and that you are currently resting and pain is not an issue.


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## CheerBear12

Hi thanks everyone I'm in absolute agony I'm on morphine still I need it. feel like i've been hit by a truck. I'm feeling very weak, sleepy,dizzy. I'll just take 1 day at a time.


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## Dukeis

Glad to hear from you. Hope you get to feeling better soon!


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## CheerBear12

When does pain go away? In absolute agony with both stomach and bum


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## CheerBear12

Think I'm getting discharged tomoz. Still in agony and sickly :/ not eating much


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## Dukeis

Have you discussed with them that you don't feel like you are ready. They sent me home to early and had to go back to the hospital for 5 more days because of dehydration. Home you'll get to feeling better soon.


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## CheerBear12

Not yet haven't had the round yet but all the team are happy for me to be going home I'm walking about and showered the only thing I struggled with was drying


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## Hope345

Stay where you can get your morphine if you need it!!!
thinking of you my dear.     Hope the pain goes away soon.


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## CheerBear12

It's tomoz now changing me from tramadol to liquid codeine to try and stop sickness and get pain under control before I go


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## Hope345

do you have a fever ?    if so,get antibiotics too
   prayets and hugs for you...


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## CheerBear12

No fever thank goodness


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## Hope345

good.      home soon and on the road to recovery


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## CheerBear12

Hopefully everyone has said I'm looking well 4 days post op.. Don't feel it tho but I'll get there


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## CheerBear12

Feeling weak and tired only realised coz I was speaking to a friend on fb and I was struggling to type for long first time doing it on chat since. Feel awful hopefully Won't be too long.... xx


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## CheerBear12

I'm home but in absolute agony  feeling weak and tired


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## Hope345

Do you have someone with you?  
I am so sorry you are in so much pain.  If that continues, I would think they need to check and see why.

Get some rest as much as possible.   Let someone take care of you as much as possible.

sending hugs and prayers your way.


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## CheerBear12

Yeah I live with my parents and its only been 5 days so its still early days hoping its gets less and less each day hasn't so far tho. Last time it was 3 and a half months before it went away hoping its not going to be the same...


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## Hope345

Glad you have your parents 
I hope it doesnt take that long either.  My heart goes out to you my dear.


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## CheerBear12

Thank you


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## Hope345

Hi,  Just checking in to see how you are doing today?
Please keep us posted... thinking of you.
julie


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## CheerBear12

In agony still wish it would just go away  tired and weak. Am sleeping during the day as well as night


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## CheerBear12

Thanks for asking


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## Hope345

You are such a caring strong person, I hate to see you have to go through this.  I hope the pain is gone soon and this surgery proves to put you in a place that you can find some relief.

I am sure rest is an important part of your recovery.  It will take a while for your body to heal after the surgery.


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## CheerBear12

I seen the stoma nurse on Tuesday she came to see me in hospital and she said you'll have to take it easy for 2-3 months  thanks so do I  still tired and already had a nap.


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## CheerBear12

What does a granulated bum mean after proctectomy? When the doctor checked and said its granulated he said its common but didn't say what to do.


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## Hope345

thinking of you girlie.   How are you?


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## CheerBear12

Still in agony hardly slept last night every time I turned over knocked my bum wound  going docs on Monday for them to check my wounds don't think they healing well and district nurse told me too go to docs.. Need to get another sick note as well. I've also got a rash on my stomach from where the dressings were. Think I'm illergic to them made me really itchy. Changed them on Thursday but still hasn't gone. One of my wounds has also opened up and keeps leaking. My mam blames me scratching for it opening up  the district nurse was useless as well can't believe she has left me like this. My mam has been changing my dressings and cleaning them. Thanks for asking hope your kids are well


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## Hope345

It sounds like there could be some infection and sensitivity to the tape.   
I hope you can find a tape that wont cause you any soreness/itchiness... you DONT need that!!!

I am sure you have all kinds of pillows already in place at night to give you extra support.  If not, maybe a few more would help 

Do they let you use a cold pack for the soreness?

I hope things heal quickly.
hugs
Julie


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## CheerBear12

My mam has put surgical tape on this time and am not scratching so far but it still looks bad but is drying out. Thank you never thought of extra pillows will try it tonight hopefully will be better... Got a bad pain in my bum  wish it would just bugger off  they never mentioned anything about a cold pack so not sure. Sorry for moaning


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## Hope345

You moan away sister.... that is what we are here for


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## CheerBear12

Ha thanks its been 16 days now and it's still as bad as when it was first done  will it ever go away. Getting sick of it not getting better at all. I'm at docs on Monday anyway see what they say.. Probs can't do anything but we'll see. Help me plz can't take it. Was in tears last night coz it was that bad even tramadol didn't work for me  I'm due tablets soon


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## my little penguin

Did they give you any creme for the granulated tissue?
Not sure what available in the uk
But I know there are a few in the us that really help heal things up when the tissue granulates.


> Two Suggestions for Granulation Tissue
> In the March/April LifelineLetter Tube Talk column, I saw the discussion about granulation tissue. You may not be aware of something called Kenalog or Triamcinalon cream. It is a wonderful alternative to silver nitrate, as there is no pain or discomfort involved in the application. When my son, Sean, gets granulation tissue, we apply a very tiny amount of this directly to the tissue, 4x per day, and usually within a day or two it is completely gone. It is a cortizone type cream, so you need to be careful not to apply it for more than a few days running, as it thins the skin surrounding the stoma. It comes in .1% and .5% concentrations.


From:

http://www.oley.org/lifeline/Tissue.html

Hope that helps


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## Nyx

I'm sorry I missed this thread....I'm so sorry that you're feeling poorly.  I have absolutely no advice but know that I'm sending healing thoughts your way!  I didn't even know that you were going in for surgery, but from what I've read from others having the same procedure, it takes a while to heal (I know, not what you want to hear).  Hang in there!  It's bound to get better....


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## CheerBear12

My little penguin loving the name! But on a serious note they never gave me anything for it  didn't even tell me what to do or how to stop it. The doctor didn't tell me what it means either so I don't know what it means. Hope it nothing serious? but when the district nurse had a look she didn't mention it unless she doesn't know what it is or what she is looking for coz she was really rubbish.

Nyx thank you hopefully won't take long.... when I asked my surgeon how long healing would take he said a month!! I'm sure it's gonna take a lot longer than that. But everyone is different and I don't go see him again until 2-3 months. I'm just scared of what he will say is happening down.  Feels weird and still getting bleeding and discharge


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## CheerBear12

My little penguin just read the info very informative thanks a lot wish I'd got given things like unless he's thinking it might go away on its own..... Doesn't feel like it tho feels like I got a tennis ball up my bum  sorry tmi lol. Thanks again not sure the UK does things like that...


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## ShankUVeryMuch

Hi CheerBear,

I'm so sorry you're in such a state of pain.  My surgery was on April 1 and I remember very clearly the pain and agony you're in.  I was at the lowest of low points thinking I cannot live the rest of my life like this.  

What I am SO SO SO excited to share with you, however, is how I'm feeling now.  I am back to work full-time (third week this week) and I feel so amazing, I don't even know how to properly convey it to you.  I had no idea this is what normal felt like.  Never in my all of my 42 years do I recall feeling this good.  Honestly.  My whole body is more relaxed, free of tension and just plain comfortable.  I've gone from 'I can't live like this' to "WOW!" in a matter of weeks.  

One thing that was a fairly big turning point for me was a simple pair of underwear.  I got the one's from Ostomy Secrets and the second I put them on, I felt my confidence increase.  I started to feel like maybe I could do it.  Not sure if you've tried any of the special undies, but the sure helped me.

I know that you're feeling just awful right now, but hang on to that light at the end of the tunnel.  It seems tiny and far away right now, but it's coming...and I promise it's not a train!


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## CheerBear12

Thank you  I've never tried them but I should because I'm not very confident more so since my ileostomy. How long does it take to go away pain wise thought the first one was bad but this ones just as bad especially coz you need to sit on it -.- on average I know everyone is different. I'm still taking tramadol it's this bad and it's been 17 days wwwwwwaaaaaahhhhhhhhh. Thanks for saying it won't last can't wait to be back to normal dunno when that will be tho hopefully sooner rather than later....thank you for advice


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## ShankUVeryMuch

I was still on 10mg hydrocodone pills every six hours probably 5-6 weeks out before weaning off of them.  I would talk to your doc and get something a little better for the pain.  Tramadol is fine for minor pains, but what you've got going on needs a bit more of a bite, I believe.


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## CheerBear12

Thank going docs tomoz for another sick note and for them to check my bum wound -sorry tmi I'll mention tablets as well. I'll let you all know how I get on


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## CheerBear12

Well I've got another sick note for two weeks think I'll need another one after this one ends. She didn't really understand what a permanent ileostomy was when I said can you check my bum she said I'll only give you a external examination coz I don't want to go inside! My mam said you'll have a job it's sealed up! She said oh they useless sometimes! Anyway she said its inflamed and oozing so put me on antibiotics for a week  it's so painful it's unbelievable even tramadol isn't working just making me tired lol


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## Dukeis

Your bum sounds like mine was. It was oozing stuff and was very painful. About 3 weeks after surgery my surgeon opened it back up and packed it for it could drain and heal from the inside outward. He told me if he never opened it I would have more problems if the outside healed and trapped all that stuff inside. I was is agony on the ride to see my surgeon which is a 2 1/2 hour ride. The ride home was much better and a lot less painful. Hope you get to feeling better soon!


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## CheerBear12

I'm scared don't want them to have to go bk in


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## CheerBear12

Dukeis - Do they do it under general anaesthetic and is it another hospital stay?


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## Dukeis

Nope, He opened it back up in his office. Hurt like hell for a minute, but once it was open it felt a whole lot better.


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## CheerBear12

Omg


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## Hope345

thinking of you Cheerbear.   If he has to open it up, it sounds like it will heal faster...   Make sure they do what is best for you to feel better and heal.  sending hugs.


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## CheerBear12

Thank you just started my antibiotics and feeling awful today with sickness as well as pain in bum  one thing after another. Hoping they will do the trick...


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## smallfry

Hi CheerBear!
Just wanted to send my support and hugs.  I have a temp. ileostomy at the moment and have been talking about taking out my rectum at some point with my surgeon.  Reading all the comments helps me know what to expect.  Really hoping the anitbiotic helps and your pain calm soon!!!  Hugs!!


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## CheerBear12

Hi small fry good luck with surgery, hope it goes well keep me informed. Thanks a lot.


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## Dukeis

CheerBear12 said:


> Omg


It really not as bad as you think. My bum was hurting so bad when the doctor opened it up the fact that he cut a few stitches never made it a whole lot more. Like I said once it was open then pain was much better. I did have pain medicine on board when did this.


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## CheerBear12

Thanks I've just started my antibiotics hope they do the trick...


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## Samboi

I'm so sorry to hear you're so unwell and in so much pain CheerBear. 
I hope the antibiotics do the trick for you. 
Hope you're feeling better soon.


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## acc929

My heart goes out to you as well. I so hope you feel better soon and everything works itself out. This is different, but I know that when my (abdominal) wound had to be opened, it hurt a *lot* less for having been drained. I hope you're in less pain today. Sending warm thoughts. xx


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## CheerBear12

I don't I'm afraid  just keep being sick coz of antibiotics  one thing after another


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## acc929

Yes I am on loads of antibiotics too (post-op day 7) after an anastomotic re-do post-leak and stuff. They are nasty! I'm sure I don't feel nearly as bad as you - everyone tells me the badness will be over soon because it has to be, my surgeon told me pre-op that sooner than you think this is all just a bad memory. Sometimes it makes me want to sock them, but they're right. One day soon you *will* feel better, and it will feel so wonderful! - until then I'm so sorry you're going through this and I hope it's short-lived. xx


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## CheerBear12

I'm 20 days post op and still don't feel any better. Tramadol works for a bit but its just getting me to take it coz don't like aniseed so am taking it with blackcurrent dilute lol. If these antibiotics don't work I'm going to have to go see my surgeon sooner than 2-3 months when he wants to see me. Only 5-6 more days of antibiotics hope they go quick lol  hope you feel better soon! Hope it goes quick for you as well you still in hospital? Sorry you had to go through that and get well soon


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## Neko76

Hi Cheerbear, just came across this, sorry you have to go through all of this. I had my rectum removed with my ileostomy and it got infected almost straight away, which was lucky in a way because the wound stayed open (ie, no trapping of infection leading to incredible pain etc...). My docs also packed it from the beginning like Dukeis? And let it heal from the inside out. It takes a while for this to happen. I started with a 3-4 inch deep and 1 inch wide tapping hole but it heal healed over perfectly in about 6 weeks. I would definately get your surgeon on the phone and start demanding a better look, they can do imaging to see if there is a pocket of infection in there before slicing you back open. I know they did with me to observe the track of the wound. Just an FYI, antibiotics don't usually help much if there is bacteria trapped in an area and if they are going to work you will usually start to see improvement with 48-72hrs of taking them. This surgery is painful but you should not still be having. The kind of pain that you are describing. I hope you can get something more done soon. Good luck.....Hugs


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## CheerBear12

Hi I'm still in pain get some days where its really bad and some alright days finished antibiotics on Sunday. I've got my hospital appt through July 22nd so hopefully It'll heal a bit by then. I've tried looking at it and there is a hole like its opened a bit unless its intentional... I'm still taking tramadol and paracetamol but trying to reduce them. I'm getting another sick note for 2 more weeks on Monday and see how I am after that. I'm getting there slowly.


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## CheerBear12

I'm in absolute agony today with my bum  even tablets aren't working very well don't know what to do with myself. It's a month in three days and its still not getting better. Thinking of going bk to work in two weeks I'm fine apart from my pain my bum and slow at walking.


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## ellie

Can you get in to see your surgeon/family dr in the next day or so? Having so much pain a month post op  probably should be checked out... Hope you get some helpful answers 


 HD


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## CheerBear12

I'm going docs on Monday for sick note so will ask then I got them to check it a week and a half ago and got put on antibiotics but finished them on Sunday. Some days it's bare able today it's not.


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## CheerBear12

I'm still getting a lot of pain in my bum a month after surgery when does it go away? My doc can't understand why I'm in so much pain  she said its healing ok just need to keep it dry. It hurts that much to the point where I have to stand to eat my meals. I got another sick note for two more weeks then hopefully bk to work. I just want the pain to go away I'm sick  Help me plz


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## Hope345

Rachel,   
I am so sorry you are in so much pain.   do they have you sitting on the donut or does the ice pack work much?


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## CheerBear12

They told me not to use a donut cushion coz can make it worse I just use my pillow when eating meals but can only sit for 10-20 mins max so have to then stand to eat for rest of it. As for lying down I just lie down on my side and keep swapping sides even that is so uncomfortable  I haven't got an ice pack not heard from anyone else that's used ice pack either.


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## Hope345

wow, you poor thing.  I hope it heals soon.  do you think the antibiotics have helped and it is getting better?    I would sure call the nurse and ask them what all can be done to relieve pain and discomfort after surgery...            

sending hugs your way and lots of prayer.....     I know we cant take away your pain.  It is something that only you must face right now.  But you have my support and concern for you.


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## CheerBear12

I think the antibiotics did work it's just taking time  I'm supposed to keep it as dry as poss but its easier said than done down there. No matter how many times I do it still ends up wet even when I don't shower/bathe :/ it's not much pain right now I haven't taken any tablets so far but I can't go longer than mid day without taking any coz it gets really bad then. It's currently 08:20. I can't sit longer than 10-20 mins directly on my bum which makes it really difficult for meals. I have to stand the rest of my meal. Hoping it'll get less and less...


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## CheerBear12

Yesterday I went without tablets all day until the night wished I hadn't it got unbearable in afternoon I struggled through but still didn't take any big mistake. Today I'm not doing that again just took tramadol with orange juice( don't like aniseed and throw it up with just water) only went without to see how I would be it was awful.


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## Hope345

Rachel,

it sounds like you are doing everything possible.   I hope the meds were able to help you with your pain.    My heart goes out to you my dear.... I pray you feel well soon


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## CheerBear12

Going bk to work on Tuesday after having 2 months off to recover. It still hurts but am not taking painkillers anymore. Am due to go see surgeon 22nd July I have got a hole in my bum wound! -.- do you think they'll have to put a stitch in or is it supposed to be like that so that it looks normal? Nervous! And I'm scared about going bk to work but doing Tuesday and Friday 12-3 to start off with.


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## CheerBear12

Hi just been hospital it's open but he said it'll close up itself but could take 6 months. It's still painful and he said it will be coz its in a awkward place. When they removed my rectum it was inflamed also the disease was still there. If I'd have been joined up again might have come bk or been that bad that I'd have to have it removed anyway! It's all good I made the right decision! need to go see in 6 months to see how my bum is doing.


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## CheerBear12

Still in agony I'm struggling with sitting for long  when does this go away been 10 weeks and still bad


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## CheerBear12

Still in agony with bum 4 months after surgery when does it goes away  it's worse than ileostomy surgery pain wise


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## Samboi

I'm so sorry you're still in pain Rachel. 
Four months is a long time to be suffering. 
I hope you get some relief soon.


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## CheerBear12

Thank you so do I sick of it now tbh I didn't expect this much pain  I can't sit on it for long either. I've got a hole in my bum but surgeon said should close on its own but can take 6 months... I go bk to see him in January to make sure it's all closed. I've got a feeling it won't but we'll see. Hope I'm wrong if it doesn't what will they do put stitches in?


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## dooom

hi CheerBear12.

any advise for me.  had a subtotalcolectomy ilestomy in jan 13. pain was omg.  got my protectomy next week, scared to death, would like any advise. how you handling pain so far.


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## CheerBear12

Hi doom my op took 2 hrs 35mins and I woke up in absolute agony in recovery. The nurse gave me morphine every couple of mins and it didn't touch it. Not sure how long I was in recovery for but then I went into surgery ward a few hrs later. I had a morphine pump for 2-3 days and it was still horrendous. When they took the morphine pump off me I was having tramadol and paracetamol every 4 hrs. I was in there 5 days I felt like it should of been a week but they wanted my bed. I was still in absolute agony when they discharged me but they gave me plenty of painkillers to come home with. I took them every 4 hrs for about 2 months. I was off work for 2 months and don't lift anything heavy for at least 6 weeks. I still don't lift anything heavy coz still getting pain. It's been 5 months nearly and still in pain. I didn't expect this much pain much worse than the ileostomy surgery. I don't want to scare you coz every one is different but just warning you it's not a nice op to go through. I did get a infection in my bum 2 weeks after op district nurses fault and wounds on belly opened up. Wishing you all the best good luck and keep me informed please


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## dooom

well erm morphine,tramadol dont work on me, so they said they gonna do a countinus eppy,

they told me 4-5 days, in pain already, now im not a drug user, but if pain is bad after surgery im gonna for the 4 leaft herbal type of pain killer. lol.


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## CheerBear12

What's a continuos eppy? Why you in pain now?  I've never tried herbal stuff so not sure on that


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## dooom

Epidural Continuous 
Infusion 

What Is An Epidural Infusion? 
The epidural space is an area which lies close to your spinal cord through which the 
nerves in-charge of your body’s sensations pass. 

The insertion of an epidural involves a fine plastic tube called an epidural catheter 
being placed into the epidural space. Local anaesthetics are then injected/infused 
into it reducing pain the number of pain messages and other sensations from 
reaching your brain. This can cause numbness, which varies in extent depending on 
the amount of local anaesthetic given. The epidural catheter is then connected to an 
epidural infusion pump which enables a mixture of local anaesthetic and other pain 
relieving drugs to be given continuously over a period of days to keep your pain well 
controlled. 


i have a spinal injury as i was hit by a 4x4 in 2008,


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## CheerBear12

Thanks for that and so sorry to hear that you've been through a lot


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## CheerBear12

How you doing Dooom? Have you had op yet?


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## dooom

op is tomoro, im scared nervous.


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## CheerBear12

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.


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## dooom

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,


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## CheerBear12

Thanks for that the only thing is I don't know the order number. Who told you that?


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## CheerBear12

I do get free prescriptions


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## dooom

if you ask your stoma nurse she will provide u with the code
i get my supplies from alpha med


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## dooom

i had the code written down cant find it grrrrrrrrrrrrrrrrrrr


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## CheerBear12

Thank you and no worries might be a different code any way I get my supplies from Fittleworth


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## CheerBear12

Hope it's gone well and your currently not in any pain thinking of you


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## dooom

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


----------



## CheerBear12

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.


----------



## dooom

day 10-11  ohh my god the pain , cant get comfy sleeping, or seating:depressed:


----------



## 2thFairy

Hang in there, dooom!!


----------



## CheerBear12

Hope it gets better for you soon big hugs how's bladder infection? Thinking of you


----------



## dooom

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.


----------



## CheerBear12

What's a leg bag and a tense machine? Sorry for asking


----------



## dooom

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.  ika:ika:


----------



## CheerBear12

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.


----------



## dooom

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.


----------



## CheerBear12

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


----------



## dooom

Surgeon said my small bowells are still in shock. So blockages are bound to happen.  
Been doing some readingon.  http://Colostomyassociation.org.uk/


----------



## dooom

http://Painrelieffoundation.org.uk/
Britishpainsociety.org.uk


----------



## CheerBear12

Thanks for the  links they interesting  and sorry to hear that hope they settle down soon


----------



## CheerBear12

Second link doesn't work tho


----------



## CheerBear12

In absolute agony today


----------



## dooom

Well im back in hospital. Doc thinks its collection of fluid. Im in pain. Scan to morrow.


----------



## CheerBear12

So sorry to hear that  mine is still draining fluid and it's been 5 months but good luck let me know


----------



## dooom

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


----------



## dooom

Heat pad. Oral morph.oxy. paracetamol.ibuprohine. not helping.


----------



## CheerBear12

so sorry to hear this  hope you feel better soon. I'm still in pain as well. Hope it goes away soon for you


----------



## dooom

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


----------



## CheerBear12

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?!


----------



## dooom

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.


----------



## CheerBear12

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


----------



## dooom

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.


----------



## CheerBear12

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...


----------



## dooom

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.


----------



## CheerBear12

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


----------



## dooom

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.


----------



## CheerBear12

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


----------



## dooom

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.


----------



## CheerBear12

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


----------



## dooom

I might go to my vet. Lol. Pain killers from gp aint working


----------



## CheerBear12

Lmao think ill do the same! On a serious note hope it eases for you as well


----------



## dooom

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.


----------



## Lynsey

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


----------



## CheerBear12

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


----------



## Lynsey

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.


----------



## CheerBear12

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


----------



## Lynsey

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


----------



## CheerBear12

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


----------



## dooom

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.


----------



## CheerBear12

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


----------



## CheerBear12

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


----------



## CheerBear12

How are you doing Dooom?


----------



## dooom

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


----------



## Tcdogg

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


----------



## CheerBear12

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


----------



## CheerBear12

Going to a concert tonight as well scared with my bum


----------



## dooom

Good luck at concert have fun ana take it easy


----------



## CheerBear12

The concert was awesome paying the price now  bum killing me the car journey I struggled and it was only 40mins drive   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


----------



## dooom

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.


----------



## CheerBear12

So sorry hope it goes away soon  never had the catheter come out of me before wonder how that happened.


----------



## dooom

Aparently catheter may have been faulty. Hows u cheer


----------



## CheerBear12

Not good :/ I'm not too bad in slight pain dunno how long will last mind and stressed from work :/


----------



## dooom

God i wish i could sleep fed up of the pain. Wish doctor had told me more info. My apetite has dropped.


----------



## dooom

Need a. H o l i d a y from pain.


----------



## CheerBear12

I know the feeling big hugs


----------



## dooom

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.


----------



## dooom

48 hours 2 hours sleep.   Dear santa i want less pain and a good night sleep.


----------



## mel.k

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


----------



## dooom

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.


----------



## mel.k

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


----------



## CheerBear12

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?


----------



## mel.k

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


----------



## CheerBear12

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?


----------



## dooom

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.


----------



## dooom

The germolene cream helped. Last night but it only last for about two hours.


----------



## mel.k

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


----------



## dooom

Went to out of hours today. Prescribed lidocane patches. . So far lessssss pain. Id say 30% less. Mel id recomend the lidocaine patches


----------



## CheerBear12

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


----------



## mel.k

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


----------



## dooom

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.


----------



## CheerBear12

Glad your getting some relief Dooom hope it continues for you mine hurting today


----------



## dooom

Hiya cheer have you tried these patches


----------



## CheerBear12

No how do you get them?


----------



## dooom

Gp. Just tell them ur normal pain killers aint working


----------



## dooom

Cheer and mel how you both been today.


----------



## CheerBear12

It's hurting can't get comfy  how are you doing?


----------



## dooom

Patches helping a bit with pain. But my appetite has droped. Feeling low today


----------



## CheerBear12

Hope you get appetite back soon


----------



## dooom

Good luck at gp today mel.


----------



## CheerBear12

Good luck hope it goes well let us know


----------



## dooom

Feel so tired today. Havent done anything just feel so tired. My bum feels weird throbing none stop. Really dont feel like eating


----------



## mel.k

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


----------



## CheerBear12

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


----------



## mel.k

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.


----------



## dooom

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


----------



## dooom

Hope all doing ok. Im soooo wonderfully sore.aint slept yet as my knees was aching for some reason.


----------



## mel.k

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:


----------



## dooom

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.


----------



## CheerBear12

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


----------



## dooom

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.


----------



## CheerBear12

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...


----------



## dooom

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.


----------



## CheerBear12

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


----------



## dooom

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


----------



## dooom

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.


----------



## CheerBear12

Glad you had transfusion hope your feeling ok? You home now or still in hospital? Good luck let me know what they say


----------



## dooom

Im home. Im ok just tired. Been told to take it easy. As my bum part has opened up a bit.


----------



## CheerBear12

Take care and keep us posted x


----------



## dooom

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.


----------



## mel.k

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


----------



## CheerBear12

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


----------



## mel.k

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.


----------



## CheerBear12

Never tried gas and air morphine would do lol  and thanks for the tip


----------



## Uffie

Has anyone had a successful proctectomy?


----------



## dooom

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


----------



## Connie01

I have Uffie. Got rid of all the disease and I healed no problem.


----------



## mel.k

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?


----------



## dooom

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


----------



## Lynsey

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


----------



## Lynsey

Oh I just noticed Mel! we live near each other!!


----------



## mel.k

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


----------



## dooom

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.


----------



## Lynsey

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.


----------



## mel.k

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


----------



## mel.k

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


----------



## dooom

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.


----------



## mel.k

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:


----------



## dooom

god i ouchie,pain,owie, arghhhhhhhhhh, this morning


----------



## CheerBear12

Why you losing weight Dooom?


----------



## dooom

My ileostomy aint working right. Food is not being digested. And output is really slow.


----------



## dooom

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


----------



## mel.k

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


----------



## dooom

Im Feeling sick today. Mel im doing all shopping online. Its good when you get other things delivered thats not bills. Hows u cheerbear.


----------



## CheerBear12

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


----------



## dooom

hows everybody been today.


----------



## CheerBear12

Still the same how are you?


----------



## dooom

im ok had a sizzure, so usual, head ache, dizzy, and sore bum.  hope ur flu is gone morow cheerbear.


----------



## CheerBear12

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


----------



## dooom

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.


----------



## CheerBear12

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


----------



## dooom

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.


----------



## CheerBear12

When are they going to do it?


----------



## dooom

The urostomy and othopedic surgery,.  8 jan. Its my choice so im saying no to either.


----------



## CheerBear12

Are you going to have two stomas now they? big hugs thinking of you


----------



## dooom

If my bladder doesnt heal they want me to have a temp urostomy one. But im not doing it


----------



## CheerBear12

What's they other options and what have they said when you said no. Thinking of you


----------



## mel.k

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


----------



## dooom

Cant sleep. MEGA SORE ASS. FEELING REALLY FED UP.


----------



## dooom

Hows you both cheerbear and mel. Hows ur weekend been. Im just doing whst i can. And trying to stay positive.


----------



## dooom

so tired,fed ,sore, sleepy, i fell asleep while trying to eat. hope cheerbear and mel been ok today


----------



## dooom

Cheerbear and mel hows you both. Im well still cant use my legs. Hoping they start working soon. Hope u both ok.


----------



## CheerBear12

Why can't you use your legs? I'm not too bad today


----------



## dooom

infection from eppi, plus side effect of my sizzures.  I NEED A NEW BODY. OR A FULL MANUFACTURES SERVICE.


----------



## dooom

hope you all have a nice christmass , less pain, and good times, me hoping santa brings me some DECENT PAIN KILLERS,


----------



## mel.k

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


----------



## CheerBear12

Oh god that's what I'm afraid of  good luck keep us informed hope it goes ok for you. Hope you have a speedy recovery


----------



## dooom

hugs mel, and hope it goes well xxx


----------



## dooom

god bless inventor of oxycodone/oxycotin


----------



## Lynsey

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


----------



## CheerBear12

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


----------



## CheerBear12

Should I still have pain and problems sitting 8 months after surgery?  apparently it's healing fine so why am I still in pain


----------



## dooom

Hope it goes away cheerbear . Im fed. Up of doctors. Maybe a vet can prescribe horse pain killers


----------



## CheerBear12

Thank you hope so too and that sounds good right now lol I've got hospital in two weeks see what they say..


----------



## CheerBear12

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


----------



## dooom

Hugs hun . They need to make a pain drug from crhons. And protectomy,ilestomy


----------



## CheerBear12

Am in agony


----------



## CheerBear12

How's everyone doing?


----------



## Micah

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


----------



## CheerBear12

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


----------



## CheerBear12

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?


----------



## Micah

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.


----------



## CheerBear12

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


----------



## CheerBear12

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


----------



## Lynsey

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


----------



## CheerBear12

Will they have to cut me open again


----------



## Lynsey

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.


----------



## CheerBear12

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


----------



## Lynsey

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


----------



## CheerBear12

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


----------



## Lynsey

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.


----------



## Hope345

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


----------



## CheerBear12

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


----------



## dooom

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


----------



## CheerBear12

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


----------



## CheerBear12

Blind ending sinus I mean still none the wiser of what it means


----------



## dooom

No idea wut it means


----------



## CheerBear12

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?


----------



## Susan2

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:


----------



## CheerBear12

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


----------



## Susan2

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.


----------



## CheerBear12

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


----------



## dooom

hows every one doing


----------



## Daisy123

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.


----------



## CheerBear12

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


----------



## Lynsey

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


----------



## Daisy123

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.


----------



## Lynsey

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!


----------



## CheerBear12

The bottom does take a while too heal mine a yr on 23rd this month and I had to have another op on 25th April 2014 to remove a blind ending sinus in my bum just wasn't healing where it was and had loads of pain and discharge. Fingers crossed you'll be totally fine and have no problems. Not everyone has problems. Let us know how you get on and if you need a chat we are here for you.


----------



## Lynsey

Hi Rachel, I have been thinking about you and wondering if you had your surgery. I know how much you were dreading it. How did it go, are you any better?


----------



## Daisy123

I already can't sit for very long because of soreness. It is easier for me, I have known that this was the possible outcome for many years. I am choosing it as a positive step in managing my health. But I do think perhaps I ought to try an artificial sphincter and Remicade but I see it as delaying the inevitable. The more surgeries I have, the more traumatic I find them. But I do know how difficult coming to terms with an ostomy is. When I had a temporary one, I had to see a psychiatrist and was on strong antidepressants.


----------



## CheerBear12

I'm still sore and swollen they removed sinus and cleaned it out stitched it up inside but left the skin open to heal from inside out. I've been told will take a couple of weeks to heal but I can't see how it's going to heal with it being left open but we'll see.. I've never had an open wound before. I need to bathe everyday give it a good soak and take painkillers. When I woke up I was in absolute agony they gave me loads of morphine I couldn't have anymore as I could of stopped breathing. They also put local anaesthetic in my bum before I woke up. Nothing worked I was left in agony and I was upset coz of pain but they just left me. Eventually when I got IV tramadol I threw it up straight away. I'd been telling them I felt sick for ages and they said they would get me anti sickness but never  I got home on the evening but they was no communication they never let my parents know I was out of theatre and when my parents phoned they never told me. Nobody told me I needed to meet my parents in waiting room only found out coz some nurse was talking to someone saying I'll walk you round so you can be discharged and I said is that where I need to go coz I'm being discharged as well.


----------



## Lynsey

That is awful Rachel. I know how painful it is and I also know how useless some nurses can be. I hope you improve now that you are home. I'm here if you ever need to chat.


----------



## Daisy123

I am so sorry Rachel. The last time I was in hospital I had no one to drive me home so transport was arranged and they left me sitting in the day room all day before I found out that nothing had been arranged. As for open wounds, I had one when I had a fistula removed, when they took the packing out I passed out. The worse pain ever, it is horrid. You have been through too much


----------



## Hope345

Rachel, i hate those people for thst!!!   Whoever is responsible for putting you in that,situation should be fired!!  I am so mad!!!!!!!   Talk to the doctor and find out your options for pain meds.   They,have to help you!!    Start keepung a journal of the pain level, how long it lasts...  maybe your mother could call for you


----------



## dooom

Feeling down and fed up of pain and complication. Time for my prescription= chocolate.hot choc.


----------



## dooom

Am p off. Saw sergeon(junior doc) and still they will not do anything about the fistula. NOOO LETS WAIT TILL IT GETS WORSE. GRRRRRRR. sorry for ranting but i have a case of IMS ( irritable male syndrome) . Tx to the junior doc who cant frigging speak english.


----------



## dooom

Can anyone tell me what to do if a fistula gets infected. Sergeon doesnt want to know


----------



## Lynsey

Can you not see your Consultant, surely he would have to help you?


----------



## dooom

Was at hospital yesterday. Saw a junior. Erliest mri is 28th of may and next consultant apointment is 3 week of june. Im gonna clean the fistula with iodine


----------



## Susan2

No, no! Too strong. Salt and water ever hour or so (or as often as you can).


----------



## Lynsey

That's not good. I have an IBD nurse who I just ring if I need help and she gets me an appointment with my Consultant ASAP or speaks to him and rings me back with what to do. It's funny how different NHS areas work. 

Could your GP maybe help clean it out for you?


----------



## dooom

Ive called my gp . Earliest day he can see me is 6-7weeks. Unless i ring at 8am for a on the day. I also called my stoma nurse. And she will try to organise a district. Nurse.


----------



## Lynsey

Good grief, that is terrible. I hope you get sorted out soon. As Susan says salt and water is very good. Having salt baths was the first thing which helped close up my wound after my rectum was removed.


----------



## dooom

There should be a self help,remedy book for crohns and crohns related surgeries and procedures. Like a book for tips and advice. Dont. Know if there is such a book. Maybe its something that could be added to the forum


----------



## Daisy123

I can't believe you are having such awful problems! I can usually make an appointment a week in advance. I hope the district nurse does come out today. It is not good enough


----------



## dooom

For thoes who has cats and they ate worried incase the cat scrates there stoma or furnitures i recomend ., PVC Cat Pet Nail Caps Claw Control Paws off. Claw caps. You can buy on ebay they work wonders


----------



## CheerBear12

Hope you get sorted soon how come surgeon doesn't want to know??? This is all terrible hope you feel better soon


----------



## dooom

It feels like consultants dont wanna help. Cuz they dont want to be responsible of fhrther complications


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## CheerBear12

Urgh went back to work last week after having 18 days off felt fine when I was on sick apart from the pain but as soon as I go back to work boom it hits me I feel exhausted, weak and just got no energy at all. Everything is a struggle it's been 3 weeks since op and I didn't expect this. I didn't even reduce my hrs at work I honestly thought I could do it. I'm finding it all tough even typing is hard I just want to feel normal again  I'm dreading work next week it's going to be a struggle I regret going back so soon it's the shortest time I've been off. They were going to send me home on Friday but I said no it's affecting me more than the pain. My body feels really old I thought I would get away without feeling weak coz I felt fine when on sick. I blame myself as I never done anything for 18 days when on sick. Somebody please tell me how long it will last for. Can't take much more  on a better note I can sit on my bum for a while


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## dooom

Hiya cheer . Hope pain lessen xxx


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## CheerBear12

It's not the pain now it's being really exhausted, tired all the time and weak


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## dooom

Take it easy. Try aromatherapy to help u relax.HINT CHOCOLATE, take a holiday.


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## CheerBear12

I can't take a holiday nice idea tho wish I could I need one I've used all my holidays up at work and I'm not off properly till September urgh. Wished I'd reduced my hrs for a few weeks but I honestly thought I would be ok I only do 16hrs(4hrs a day) it's too much for me at the mo. Obviously I was wrong


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## dooom

A company cannot force an idividual who is ill due to an illnes or treament to work hours that he or she is temporily able to. If you look it up. Its a form of discrimination. Like maternity leave.


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## Hope345

it will actually be better for your recovery if you dont continue full time right now.  In the long run it will help you to take it easy and listen to your body.  If you are that exhausted you need to slow down somewhat            so glad you are getting there though!!!


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## CheerBear12

I'm not full time I only do 4 hrs a days(16hrs a week) that's my permanent  contracted hrs but even so it's too much for me but I have to just get on with it


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## dooom

How is everybody doing


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## Lynsey

I am still doing really well, just came back from holiday in Spain and got engaged!! Life really does not end with a stoma, it's difficult for quite some time but we get there in the end


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## dooom

Congrats on you engagement xxx


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## Daisy123

Lynsey said:


> I am still doing really well, just came back from holiday in Spain and got engaged!! Life really does not end with a stoma, it's difficult for quite some time but we get there in the end


What great news. Congratulations.:ghug:


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## Lynsey

Thank you!!


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## Susan2

Congratulations! 

You should post a note about this in the "Singles Living with Crohn's" Support Group. Many people there, especially those with stomas, believe that they will never find a partner.  Your experience might encourage them to feel more positive and so give them more chance to find a special person to share their life.


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## Lynsey

Thank you Susan, I will do that. 

When I first got my stoma I had a boyfriend and I thought he would leave me. He didn't and tried to help me come to terms with it, even though I tried to ignore I had it. It just goes to show, the right person will want to be with you stoma or no stoma


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## dooom

Feeling realy down. After the news from doc i got today


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## Daisy123

dooom said:


> Feeling realy down. After the news from doc i got today


What news?


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## dooom

My left testicle will have to go cause of the infection from the proctectomy


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## CheerBear12

Congrats on engagement Lynsey


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## Daisy123

dooom said:


> My left testicle will have to go cause of the infection from the proctectomy


I am so sorry to hear that and cross on your behalf. :ghug:


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## sam357

Hi Cheerbear,

How are you doing now? I have my proctectomy surgery on Thursday and am absolutely dreading it :-(


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## CheerBear12

Hi I haven't been on here for a while and have missed loads of posts. I'm doing fine hurts today but might be an off day coz it stopped hurting two weeks after op and healed up got hospital on July 21st hoping I get signed off...... My stoma is so itchy even after I clean and change pouch has been for a few days now.. Could it be weather feel like scratching it off. Will be thinking of you on Thursday hope it all goes well let me know please. Hoping there is no complications for you. Hope you have a speedy recovery


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## sam357

Thank you, I really hope it goes smoothly. I'm so sick of hospitals and operations. 

I'm glad you have stopped having lots of pain. How long has it been since your surgery? 

Also, do you put a skin barrier around your stoma?? I find they really help when mine is sore or itchy


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## CheerBear12

I had op 10 weeks ago on April 25th and good luck keep me posted when you can sending positive vibes. No what's a skin barrier


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## dooom

Hiya cheerbear. Try the cavilon or orabase. The orabase helps more.


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## CheerBear12

What are those for?


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## dooom

The orabase you but on stoma for when its painfull itchy etc. The cavilon spray around the stoma.


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## dooom

The orabase also for when stoma is bleeding


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## dooom

hows every one doing. ive got my next srgery booked for 9th of september.


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## dooom

Had the left orchidectomy on the 9th. Surgeon failed to sew then wound up. So its now infected. Im on antibiotics. Just fed up.  Hows everyone doing.


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## sam357

Hi dooom,

Sorry to hear your having such a hard time. I wish the pain would go away. 

I had a proctectomy on 10th July and it's still not healed. Getting lots of pain and oozing a fair bit. I'm still packing it everyday but just doesn't seen to be getting better...

Hope you a feeling a bit better from your previous post


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## dooom

Hiya sam try using thr salvon iodine spray it might help.
Hope you have a peacefull night.


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## Susan2

Hi Sam.

What do you use for packing the wound? I had an open wound for six or seven months and the district nurses used only saline solution and alginate dressings (Kaltostat, in my case). These are more expensive but are made from seaweed and seem to have healing properties as well as coping with the "ooze". I had absolutely no infection during the six or seven months and the wound healed very cleanly.


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## sam357

Savlon? Will that sting? No ones mentioned that to me before but am willing to try anything! Thanks!!

I'm currently having it washed with saline and packed with aquacel. Apparently the silver in the aquacel is supposed to draw out the oozing. They have also tried manuka honey on it but that didnt really do anything either.

Did you find that the wound hurts more when you have it packed? The other day I went a whole morning without packing and it was so much more comfortable!


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## dooom

Hiya the salvon does not sting. Reason i used salvon is no distric nurse came to see me. It is best you ask if you can use salvon. If the pain is bad ask for oxynorm.


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## Susan2

My wound was an enormous hole the size of a large man's fist, where they removed my rectum and a large area of rotting flesh around it!

I couldn't dress it myself - I couldn't see into it, let alone dress it - so the district nurses came every day. They rang me about 40 minutes before they were coming and I took an Endone tablet to help me cope with the pain.


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