I am in pure agony

As5567

I recently had an emergency operation after an abscess formed in my groin which was being fed by a track all the way to my stomach where I had another abscess internally. I had both of these drained and cut out last week and was basically thrown out of hospital 10AM the following morning (I came back from my operation at 2AM) The nurse who was in charge of my care on the ward was the most horrible person I have ever met, she had no patience to wait for me to get out of bed at my own pace. She woke me up at 8AM gave me a bunch of pills and said now you need to get up dressed and sit in the chair. I kindly asked her to give me 20 mins or so because 1 I was very stiff from not being able to have any meds the following day and it being morning and 2 it was only 6 or so hours since I woke up from a general anesthetic and being operated on so my stomach and groin area was very sore.

I did not see any doctor in the morning the nurse just told me I'm now discharged and I'm free to go. The following day the district nurse turned up and was very polite, that goes a long way when you're feeling like rubbish. She was appalled that they had discharged me that quickly, without any antibiotics and without any pain killers. The handover letter says I should take strong pain killers 1 hour before packing the wounds for the first 2 weeks and to then review the pain......I guess someone couldn't be bothered to prescribe me any meds to take home. I'm now stuck with no pain killers as my GP is refusing to prescribe anything stronger than tramadol until they can get hold of the surgical team who cut me open. The District nurses have said that I need something very strong for the first 2 weeks so they are able to fully pack both wounds that have been left open, the one is around 7CM deep and requires a lot of poking around which so far is the worst pain I have experienced in my life, it literally feels like I'm being stabbed over and over, and to make things worse this pain then sets off muscle spasms in my back so as you can imagine the District nurses are having a hard time packing these wounds correctly.

My Rheumatolgist has also been hopeless as always, she is refusing to give me anything to help with muscle spasms and insists that I still reduce my steroids even though the likely hood is I won't be on any treatment now until these open wounds heal....which is going to take 4-6 months or longer so I'm really annoyed and concerned as to how I'm meant to cope or even live the next 6 months of my life without any sleep due to muscle spasms. If I could just get a few hours sleep every night 3-4 hours it makes a huge difference to how I feel the following day, right now I get 2-3 hours sleep over a 12 hour period of waking up every 5 mins due to my back going into spasm every time my body relaxes as it falls to sleep.

Been a fairly bad week, I guess things can only get better from now on

stickywicket

:shock: :shock: :shock:

You've had, and are still having, a dreadful time of it. I recall you mentioned the lump, pain and temperature but your subsequent treatment and discharge is appalling. It's not often I say this but I really think you should complain. The PALS website has been discontinued due to lack of money but you can still find your local hospital's branch here. http://www.nhs.uk/chq/Pages/1082.aspx?CategoryID=68&SubCategoryID=153

I wonder if your GP could prescribe something for the muscle cramps. To be honest, I can see no valid reason why he can't prescribe something for the pain other than you are clearly a complex case and some docs are afraid of doing more harm than good, especially with such deep wounds. The GP should, however, be liaising urgently with your surgical team to find out what is best. I can understand your rheumatologist's point about the steroids though as they do inhibit healing and that sounds to be a long and difficult priority.

My first port of call would be the PALS team at the hospital. They might be able to expedite the dullers. That would be a start.

Boomer13

That sounds like a horrible experience. I hope the surgical team can speak to your GP soon and give you the appropriate pain relief. Yikes!

As5567

Well I'm off back to my GP in the morning (I feel like I'm living there) to ask once again for some stronger pain meds and something to muscle spasms. Every doctor there seems to be against strong pain killers or anything to help muscle spasms for someone my age. But they fail to see my point, right now I cannot physically walk my back will just go into spasm and I will end up on the floor, at nights I'm gasping for air due to spasms and almost passing out due to it. The strong pain killers I need for a very temporary use, I need them to take 30 minutes before having my wounds packed so the nurses can get adequate packing in them so they can heal correctly, to some it may sound simple to deal with but to me it feels like each time packing is put into the wounds with a probe it feels like I'm being stabbed which then sets off muscle spasms and I'm then stuck in an endless circle of stabbing pain and spasms over and over.

I'm still waiting to hear back from the complaints people about my discharge, they said they would phone me by the end of the week to arrange a home visit to see how they can assist me.

Hopefully things will go better with the GP in the morning

Boomer13

I have a bad time with very severe muscle spasms too. I was finally prescribed baclofen, which is very strong. It works well for me. Since I started it about a year or so ago, I find I need less pain meds with taking them together.

Good luck with your GP.

LignumVitae

My husband had a similar procedure done but to the bottom of his back. He was discharged to a pregnant wife at 11pm at night - he isn't a small man and I really struggled to get him into the car and then the house as he was still woozy. He then spent weeks and weeks trying to get the correct dressings and wound packing stuff on prescription and appointments with the nurses who could organise that - I pity you because it sounds like you have a similar disjointed set up to deal with. My one and only experience of PALS was phenomenal and they were incredibly helpful - I hope they are for you and that you are a little more comfortable or at least a little less sore and struggling today.

bubbadog

My you really have had a bad time of it! I hope the G.P gave you some strong painkillers and some anti-spasmodic drugs for your back. I have to agree that you should make a complaint about your care in hospital.

As5567

Boomer13 wrote:

I have a bad time with very severe muscle spasms too. I was finally prescribed baclofen, which is very strong. It works well for me. Since I started it about a year or so ago, I find I need less pain meds with taking them together.

Good luck with your GP.

Glad to hear there is something out there that can be used for Muscle spasms. My GP told me he cant prescribe anything for the spasms and he is going to be writing to my rheumatologist telling her so, I can see why he would be cautious to not want to prescribe anything of that type of medication when a Rheumatologist should know a lot more about these drugs and be prescribing them.

LignumVitae wrote:

My husband had a similar procedure done but to the bottom of his back. He was discharged to a pregnant wife at 11pm at night - he isn't a small man and I really struggled to get him into the car and then the house as he was still woozy. He then spent weeks and weeks trying to get the correct dressings and wound packing stuff on prescription and appointments with the nurses who could organise that - I pity you because it sounds like you have a similar disjointed set up to deal with. My one and only experience of PALS was phenomenal and they were incredibly helpful - I hope they are for you and that you are a little more comfortable or at least a little less sore and struggling today.

Discharged at 11pm at night...that's awful but I'm guessing its getting more and more common now seems the NHS is in crisis. So far the district nurses have been great and I won't ever have to go to the GP to have things packed because of infection risk due to my immune system. As for dressings it seems I will be in that type of situation soon the nurses have put in a request to order more packing stuff and dressings but so far so bad I'm still waiting for a phone call to collect the prescription. I have a feeling I'm going to be doing lots of chasing around. I hope Pals people will be helpful we shall see.

bubbadog wrote:

My you really have had a bad time of it! I hope the G.P gave you some strong painkillers and some anti-spasmodic drugs for your back. I have to agree that you should make a complaint about your care in hospital.

The GP gave me Oramorph but wouldn't give me anything for muscle spasms and insists that my Rheumatolgist should be prescribing them, I told him that she said for me to visit my GP so he's wiring to her telling her it's her department and he cant prescribe these types of drugs for someone in my situation, I very much doubt I will get anything for muscle spasms for the next 2 or so months if not longer

dreamdaisy

I've been away so missed this. You are having another nasty time of it and no mistake. Someone posted (very briefly and somewhat incoherently) about baclofen but hasn't been back with any further information about who prescribed it or why: my crystal ball failed on that one.

I honestly don't know what to say so shall say nowt apart from I hope things improve for you very soon. I wish you well. DD

barbara12

This is awful, I really do feel for you after reading what happened no wounder you are in agony..some of these nurse really do need to learn people skills and has for discharging you ..I am gobsmacked..its a matter of getting you out to get someone else in the bed, I do hope you complain about all this if only to help others..sorry don't know what to say about your pain it sounds horrendous..I hope you can get some help with it...sending you many hugs not much I know...(((())) xx let us know how you get on..

Starburst

Ohh AS, you've had a rough old ride lately, haven't you? My heart goes out to you. It really isn't fair and it's certainly your turn for some good luck.

I'd say I'm shocked at them discharging you. I deal with so many inappropriate and unsafe hospital discharges in my job. The pressures on the hospitals affect the most vulnerable people. It makes me furious.

Be kind to yourself, please take it easy and know that we are here for you.

(((AS))) x

As5567

dreamdaisy wrote:

I've been away so missed this. You are having another nasty time of it and no mistake. Someone posted (very briefly and somewhat incoherently) about baclofen but hasn't been back with any further information about who prescribed it or why: my crystal ball failed on that one.

I honestly don't know what to say so shall say nowt apart from I hope things improve for you very soon. I wish you well. DD

Thanks for the post dreamdaisy, things can only get better from here onwards...I hope

barbara12 wrote:

This is awful, I really do feel for you after reading what happened no wounder you are in agony..some of these nurse really do need to learn people skills and has for discharging you ..I am gobsmacked..its a matter of getting you out to get someone else in the bed, I do hope you complain about all this if only to help others..sorry don't know what to say about your pain it sounds horrendous..I hope you can get some help with it...sending you many hugs not much I know...(((())) xx let us know how you get on..

Most of the other nurses were great and very kind/helpful, it's just my luck on the morning after my operation I'm given a horrible nurse who seems to have no care or people skills what so ever. I know they are under more and more strain and stress to get their job done but a kind and helpful attitude goes a long way and makes a stay in hospital that little bit more bearable.

Starburst wrote:

Ohh AS, you've had a rough old ride lately, haven't you? My heart goes out to you. It really isn't fair and it's certainly your turn for some good luck.

I'd say I'm shocked at them discharging you. I deal with so many inappropriate and unsafe hospital discharges in my job. The pressures on the hospitals affect the most vulnerable people. It makes me furious.

Be kind to yourself, please take it easy and know that we are here for you.

(((AS))) x

I hope it's my turn for some good luck very soon!

I don't think I've ever experienced anything like it, at the time of discharge I wasn't even fully recovered from the anesthetic and they wanted me gone ASAP. I can't imagine how much of an impact this could have on someone elderly or someone who lives alone. I'm lucky that I'm young and have people at home who could help me but many aren't that lucky and I'm sure they suffer because someone has just kicked them out of hospital without correct discharge.



All I need now is some sleep which is very unlikely until the pred kicks in

weejim1961

Sorry to hear about this As5567, as I know how you feel as I have been there and got the tee-shirt. Had all my large bowel and rectum removed and basically had a sinus tract which wouldn't heal. Went through numerous operations to cut it back to healthy tissue and get it packed till it closed. As it never completely closed, they would then cut deeper each time. Eventually after 2 years 2 surgeons opened me up and found a large abscess which was the root cause. After they removed that and a plastic surgeon done a craft I was fine. ( apart from nerve damage). But I know what your going through, I use to describe it as if someone was sticking knitting needles up inside me. The pain would be worse when they done a new tract (your stage). I couldn't get any sleep so i use to stick the pads from a tens machine on my bum cheeks and keep it on a low pulse.

At night I used a pain killer called temgesic sublingual, it was a small white tablet which you put under your tongue. It's the same drug used in Butrans patches only about 20 times stronger dose. Then had pethadine tablets for during the day. As the weeks went on and the wound wasn't as raw, I could get by with dihyrocodiene/paracetamol. As for the muscle spasms, I got put on amitriptiline 50mg twice a day, they really helped, but take a good few days to get into the system. I also would use diazepam for a quick fix for muscle spasms, these are great, but for some reason doctors don't seem to be prescribing them now. My doctor gives me them, but I only need them once or twice a year for back spasms, mainly during the winter months.

As I say the pain eases after the packing starts healing the inside of the tracts, and hopefully it won't be long healing, but reading your post sure brought back memories. I never want to see a knitting needle in my life LOL.

As5567

weejim1961 wrote:

Sorry to hear about this As5567, as I know how you feel as I have been there and got the tee-shirt. Had all my large bowel and rectum removed and basically had a sinus tract which wouldn't heal. Went through numerous operations to cut it back to healthy tissue and get it packed till it closed. As it never completely closed, they would then cut deeper each time. Eventually after 2 years 2 surgeons opened me up and found a large abscess which was the root cause. After they removed that and a plastic surgeon done a craft I was fine. ( apart from nerve damage). But I know what your going through, I use to describe it as if someone was sticking knitting needles up inside me. The pain would be worse when they done a new tract (your stage). I couldn't get any sleep so i use to stick the pads from a tens machine on my bum cheeks and keep it on a low pulse.

At night I used a pain killer called temgesic sublingual, it was a small white tablet which you put under your tongue. It's the same drug used in Butrans patches only about 20 times stronger dose. Then had pethadine tablets for during the day. As the weeks went on and the wound wasn't as raw, I could get by with dihyrocodiene/paracetamol. As for the muscle spasms, I got put on amitriptiline 50mg twice a day, they really helped, but take a good few days to get into the system. I also would use diazepam for a quick fix for muscle spasms, these are great, but for some reason doctors don't seem to be prescribing them now. My doctor gives me them, but I only need them once or twice a year for back spasms, mainly during the winter months.

As I say the pain eases after the packing starts healing the inside of the tracts, and hopefully it won't be long healing, but reading your post sure brought back memories. I never want to see a knitting needle in my life LOL.

Sorry for the slow reply, using a computer right now is rather painful so I only come on here when I need to take my mind off lack of sleep and a night full of muscle spasms.

Sorry to hear your story, sounds like agony! As you say the knitting needle thing describes the pain very well. Yesterday the nurse used some type of special wound cleaner that has a local anesthetic agent in it......this made a huge difference it was still very painful but it took away that sudden sharp stabbing pain each time packing is pushed in. I have no idea how long its going to heal but I suspect its going to be a long time, they managed to pack 90CM of packing material into my groin yesterday....the most I have managed before that was 20-30cm (One whole pack)

I'm surprised it took your doctors so long to find the internal abscess feeding infection into tracks, did they find this after an MRI scan? Because this was my 2nd abscess in the same type of location I had an MRI scan 1 hour after arriving in the hospital and then a couple of hours later I was having the surgery. It was meant to last 20-30 mins but lasted almost 2 hours in total due to it being far more complex than first thought. The surgeons did give me a couple of choices for the procedure but I opted for the most disruptive as it had the highest success rate (80-90%) in comparison to the other types of procedure they offered me such as draining the abscess internally with a needle and then IV antibiotics to kill the remaining bacteria. This had a 80% success rate in the short term but the chance of it returning within 1 year was something like 60% so I decided I'd much rather have one operation and go through all the healing from the inside out process rather than the quick fix and be back here in 1 year time with the warning that if it came back it could come back 10x worse or 10x not as bad the risk wasn't worth it.

I know this is a very personal question and you don't have to answer if you don't want. Do you have any inflammatory bowel disease? Once things have began to heal enough they want me to have some more tests as they suspect I have some sort of inflammatory bowel disease mainly because of the link between some inflammatory bowel disease and AS and because this is my 2nd abscess in 2 years and the fact I also had one internally with a track feeding the other.

dreamdaisy

Ye gods, you poor thing. Are you taking any immune-suppressing meds? I apologise for not remembering :oops: but if so that will impair the healing process, which will drag everything out for longer. I hope things have improved at least a little for you. DD

dreamdaisy

Hello again, how's it going? My best guess is not too well. I sincerely hope I'm wrong. DD

As5567

dreamdaisy wrote:

Ye gods, you poor thing. Are you taking any immune-suppressing meds? I apologise for not remembering :oops: but if so that will impair the healing process, which will drag everything out for longer. I hope things have improved at least a little for you. DD

Meth, Golimimab and steroids. The perfect combination to slow down healing!

dreamdaisy wrote:

Hello again, how's it going? My best guess is not too well. I sincerely hope I'm wrong. DD

So far things are not great but not awful. Things are healing very slowly but the main thing is they are healing and infection free for the time being.

The last week or so my back has been really painful with muscle spasms, the worst it has ever been. I decided to finally see someone private to see if I can get any sort of help or advice and I'm really glad that I did. The doctor I saw has written to my gp saying that in his opinion I need an urgent referral to see a specialist (I forgot the name) he thinks that I have multiple areas of compressed nerves and probably require surgery to correct this sooner rather than later.

At this moment right now I can't even lift my arms enough to take a drink or feed myself without setting off muscle spasms, same goes for my legs any range of movement sets off muscle spasms. It just amazes me that my Rheumatologist just says to take more pain killers and she will see me in Nov.

barbara12

Hello again
Just popping in to see how you are getting on,I'm sorry to see things are not good, If you think the rheumy could help I would ask for another appointment..you shouldn't be left to suffer like this, I know things need to heal but you need some proper pain relief..I wish I could help more but at least you know we are here to listen..xx

dreamdaisy

That doesn't amaze me, she's a rheumatologist so not fully au fait with compressed nerves, surely that's an altogether different medical area. With those meds then it's not surprising you're not healing as fast as possible. Your poor body, what an onslaught. DD