Littlemiss H :-(

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Grumbletum

Grumbletum

Joined
Dec 31, 2010
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Has been following and supporting on my 'Wings' thread. She sustained a leg injury the other day and was diagnosed with cellulitis, then hospitalised because of high temperature etc. But things have now escalated and she is facing the possible prospect of partial amputation :-(
Please can you add your thoughts and prayers to mine and hope that such a drastic step won't be necessary.
 
oh my!!!! Hope they are able to get things under control! I had cellulitis years ago after a burn on my leg - doc wanted to put me off for almost a week before an appointment - but thankfully I was insistant and got in either that day or the next.....WAS NOT a fun thing to deal with!
 
I read on Helen's thread they believed they successfully removed necrosis with only minimal amount of her calf. I hope this is the case Littlemiss! I know you'll keep us updated. Thanks Helen!
 
Code:
Thankyou everyone for your kind words.
What was thought to be cellulitis turned out to be necrotising fasciitis..also known as the flesh eating bug.
Still can't quite believe I would get such a thing.
I was very lucky though, because the leg became so swollen and i just could't weightbear on it,and the redness spread so rapidly in a 24 hour period , they x-rayed it.
This showed the air in the tissues known as gas gangrene.
The docs arranged an orthopaedic rev and before I knew it I was listed for an op. The 3 hour wait for it was unbearable as had had a small amount to eat so had to wait.

Because it was caught early it wasn't as bad as they thought it might have been so they didn't have to remove as much as they thought they may.

I now have to go back to theatre again tomorrow - apparently they keep the wound open and go back in every 2 or 3 days until no more dead tissue is seen..though he originally said 3 days so not sure why earlier.

They are hopeful though with the now 3 iv antibiotics that tomorrow they will be able to close it. It certainly feels better, I can put my foot to the floor without excruciating pain today.
I will let you know the outcome. Not sure when i am going as it is a trauma list so is very fluid.
One slightly amusing thing occured. The consultant surgeon when he was first assessing me was squeezing the swollen bit (triple ouch) and listening to my leg as were his team... Who he told off for shuffling. What on earth?? I was thinking, he was listening for crinkling noises which air makes when trapped under the tissues. He said when he was removing the air at operation he could see my leg deflate and become crinkly!!

And I have a nice side room as I was mildly neutropenic , and it's a new hospital as well, and everyones lovely...find my case very exciting as the orthopaedic nurse said she has only ever seen 2 or 3 cases over the years...not sure I am finding it interesting, just surreal.
 
Can't edit the last bit of a long post on a mobile. In the last-ish bit I wasn't thinking he was listening for gas , I was wondering what on earth he was up to!!
 
Little Miss H! Oh my goodness, this is awful! I'm glad to hear that it sounds like they caught it fairly early. My stomach just dropped when I read the words "amputation" and "gangrene"!! I hope you get completely better very soon.
 
Oh littlemissh!!! :ywow:

I hope they got all of it! And may I ask...how on earth did you get it??

Thoughts and prayers are soooooooo on their way to you!
 
Excusss me, but what the Hell????

No, no, no, no, no. Hey there universe, I don’t agree with this at all. Wasn’t Crohns enough? Sorry but universe, I disagree with your choices sometimes.

Littlemissh, I am so sorry you are going through this, but glad that it seems to be better than what they previously thought. We are all thinking of you, and hoping that you can come through this quickly and as painlessly as possible.
 
Oh honey!! You certainly arent missing any BBQ's in the UK no. Dont be getting mad at yourself. Accidents happen. I hope nothing further will be needed and they get this under control immediately. They cant let it spread further. I'm sure they are doing what they can leaving the tube in there. I'm certain they need to keep it draining and open so they can keep an eye on everything.

Here's hoping you will be well very soon.
:kiss:
 
Oh God! Just like Cat my heart and stomach dropped when I read amputation, OMG!
I hope you're ok hun
And I hope it all goes well for you, this is shocking news, especially after a simple accident, just goes to show how vulnerable we are.
Take care
xxxx
 
Thanks everyone.I'm sat on my tod in my side room bloody crying to myself now, how pathetic is that for goodness sake when there are so many particularly on here who are much worse off.
You have no idea how good it is to come on here and not feel so isolated right at this moment.
 
Tears are perfectly understandable and acceptable with what you are going through :kiss: I think you are probably in shock - who wouldn't be in this situation? A good cry might help release some of the tension, so bawl away!!
It's really good to hear that they are keeping a close eye on you and hopefully, that they are sounding that they are getting things under control?
We're all with you there in spirit - hang in there sweetie.
 
Holy guacamole! :yfaint:

Oh littlemissh, I would be crying too!...:hug:

Sounds like they are taking you back to theatre earlier than planned because it wasn't as bad as first thought so they can close it earlier. If possible it's better to have a closed wound than an open one.

I hope more than anything all goes well with the surgery, everything crossed! I will be thinking about you hun and sending you mega loads of hugs and healing thoughts.

:goodluck::goodluck::goodluck:

Much love, :Karl:
Dusty. xxxxxxxx
 
Oh littlemissh cry away....we'll all be here drying them up for you!
And then...as said before, when they dry up..fight, fight fight !!
:kiss::kiss::kiss:
 
Thanks guys! In a more positive frame of mind this morning.
3rd on the list, let's hope it's just a washout and closure...pretty please!
 
Morning honey. Glad to hear you sounding brighter and hoping the news is good with your treatment. xxx
 
Just seen consultant who is doing the op. He thinks that it is very unlikely to be washout and close. :-(
On the positive side he is quietly optimistic that it won't be a major debridement either.
Where's my crystal ball when I need it!!
 
I am going to sign up to a circus skills class. I reckon if I can walk on my hands it will give my leg a rest. And I could make a bit of money out of it as well if I hang a little donations box off my foot.
 
I am only going to accept coconut mushrooms, Turkish delights and nougat chunks as donations though. Not had coconut mushrooms since had crohns but I'll risk it. If I am upside down on my hands they will stay in my mouth for longer and may not get to my small bowel..haha, a cunning plan
 
As usual, I'm in the dark as to coconut mushrooms! I'm sending macaroons and hope and prayers your way. Good luck today Littlemiss!
 
I've just had a good old inspection of this pump thing. It looks like a catheter coming out of my calf. People will think i was born with a bladder in my leg...now that would have been weird ...though highly convenient if stuck in a traffic jam!
 
I've heard of the maggot therapy, but..........ewwwwwww! I'd want to be well sedated for that one. How's the leg now? Can you walk around a bit?
Sending you coconut mushrooms.... Also, some Sherbet Dib Dabs and Flying Saucers! Xxx
 
I know, can you imagine knowing you had those crawling around inside you!
Can't weightbear on it at all- too painful. It's a pain because I am now totally dependent on others to get me from a to b, I do the hopping and they carry my iv's, the pump and very long pipe that connects me to the pump...what a spectacle. I am going to ask for some crutches or something so I can get around without hopping.
 
Grumbletum said:
I've heard of the maggot therapy, but..........ewwwwwww! I'd want to be well sedated for that one. How's the leg now? Can you walk around a bit?
Sending you coconut mushrooms.... Also, some Sherbet Dib Dabs and Flying Saucers! Xxx
Click to expand...

Funny, I have no problem with the thought of hookworms... I had a traumatizing experience with maggots when I was younger and now they horrify me! I would agree to the treatment (I understand they are effective at what they do) but I would basically beg to be put in a medically induced coma for the duration!
 
Oh and dexky, coconut mushrooms are little chewy sweets in the shape as mushrooms covered in coconut. Yum. But macaroons are just as nice!
 
Still thinking of you little miss! Hoping for the best possible outcome. I know it's the worst being dependent on others, especially if the hospital staff seem overworked (and they almost always are) it makes you feel so guilty! Well don't feel guilty. It's their job and it's not your fault. Sending big hugs. Try to get some rest and take care of yourself.
 
littlemissh said:
I've just had a good old inspection of this pump thing. It looks like a catheter coming out of my calf. People will think i was born with a bladder in my leg...now that would have been weird ...though highly convenient if stuck in a traffic jam!
Click to expand...

Shame you're not a man. You could really pull with that!!! :rof:
 
littlemissh said:
I know, can you imagine knowing you had those crawling around inside you!
Can't weightbear on it at all- too painful. It's a pain because I am now totally dependent on others to get me from a to b, I do the hopping and they carry my iv's, the pump and very long pipe that connects me to the pump...what a spectacle. I am going to ask for some crutches or something so I can get around without hopping.
Click to expand...

Hope you get those crutches luv. But dont feel bad about asking for help. Problem is, it's too slow to come sometimes for us crohnies! Hope you get those crutches soon.
:hug:
 
Did get some sleep and the nurses are going to get the physios to see me today about some crutches so I can stop doing my zebedee impression.
Just sent a text to my hubby asking him to buy me some night shirts as can't get pj bottoms on due to the tube from my leg etc etc....but I had sent it to a male work colleague in error...he found it highly amusing but omg, it's a bit embarrassing!!
 
Just seen the surgeon who is happy with my leg today. He wants to have another look in the morning but is hopeful it will be just tidying up , washing out etc.
The big question now is when/if to restate the aza- I am between a rock and a hard place really. My crohns has been very difficult to control and had just been getting good with the higher aza dose. If I don't go back on it , it will get bad again..I cannot cope with that as well but restarting it too soon could mean the infection rears it's ugly head again. They are getting my gastro to see me - I really hope he isn't on hols, and we can discuss my options.
Feeling quite happy that he is pleased with my leg today and I shall focus on that and deal with the rest as it comes. Even better lots of lovely sun is coming through my window, so I shall imagine I am on a shady beach somewhere exotic with dexkys macaroons and terriernuts coconut mushrooms. :))
 
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:rof: Oooer....you'll be the talk of the office when you get back!! Very glad to hear about the progress on the leg. That is a big dilemma re: the Aza but like you say, I guess there's no point agonising til you see the gastro doc. Hope the Crohn's will behave itself until then.
Have a good day x
 
Fingers crossed you are on the road to recovery! Hope your GI can get you sorted out soon as well.
 
I hope you get the all-clear on your leg so you don't have to make any hard decisions with the aza!
 
I too read the word 'amputation' (for the SECOND time on this forum recently!) and went pale. I'm so glad to hear it didn't come to that littlemissh! Hope everything continues to go well and you're not forced to compramise your Crohn's management! That shouldn't happen to anyone.
 
Haha, shark attack!!! Great idea! Tell em you were swimming the channel when it happened. If you're gonna lie...go big!! Good luck today!
 
Littlemissh, I like your shark story! And I'm hoping this is you done with the problem, and that you get to go home, safe, sound and well!!!
xxxxxxxxxxxxxxxxxxxxxxxxxxx
 
Oh Littlemissh, just picked this thread up, god I'm slow! It's awful to hear what you've been through. I hope you recover from this quickly. Sending lots of love & hugs hunny.

Paula
XxxxxxxX
 
Back from theatre. Not spoken to consultant so not sure why but only closed really small part as far as I can tell, back on iv antibiotics and back to theatre for the 5th time on Friday.
Not happy.
I'm never going to get home at this rate. And increasingly anxious my crohn's is going to suddenly go mad the longer they withold the azathioprine.
 
Dont be stressing about your crohns or you will have a self fulfilling prophecy. Can the GI put you on something else for the time being to tide you over?

Perhaps they want your wound to heal from the inside out?
 
Aww, not so good, but it sounds like they are keeping a close eye on you. Scary how something like this can happen almost overnight! Do you think the Pred might keep the Crohn's at bay til you can get back on the Aza?
Best of luck for Friday and hope your hospital stay is not going to be too protracted. x
 
Oh no.
Just been told the microbiologist has said they have grown bacteria from my operative tissue samples. He had recommended FOUR weeks of iv antibiotics which means a peripheral line/picc line etc etc.
I guess they will have to up my Pred dose and maintain me on that until aza can be restarted. They are recontacting gastro as this is a bolt out of the blue.

Still hasn't sunk in .
 
littlemissh said:
Oh no.
Just been told the microbiologist has said they have grown bacteria from my operative tissue samples. He had recommended FOUR weeks of iv antibiotics which means a peripheral line/picc line etc etc.
I guess they will have to up my Pred dose and maintain me on that until aza can be restarted. They are recontacting gastro as this is a bolt out of the blue.

Still hasn't sunk in .
Click to expand...

Oh goodness. Huge hugs from me. Thinking about you as always.
 
I'm sorry to hear that. But since this is a very very nasty bug, I'm glad they caught it early. Lady here died just down the road from it. So you take those antibiotics any way you can and know that as bad as pred is, crohns is controllable with it.

I'm wishing you well, and sending lots of hugs and mushrooms!
 
LittlemissH....ooooh...did you get those mushrooms??? Heard tell the head nurse likes to eat sweets so I'm checkin YOU got em instead of that nurse!

Seriously....how ya'll doin sweet cheeks?? If we dont hear from you, we worry ya hear??? Dont make me PM you now!! :ybiggrin:

:rosette2:
 
Hello peoples. Went to theatre late pm yesterday for op number 5. It all looks clean, they have put a couple of drains in so i don't have to be attached to a vacupump.
Gastro have said as long as my White count is above 2.5 I can recommenced the azathioprine.
They are going to recontact microbiology and discuss with them again about whether I can convert to oral antibiotics because then I could get home some time next week...yippee.
Only downside is that I was sick all night...was ok with all the previous ga's but they think it's just a cumulative effect of so many in a short space of time.
 
Aw poor you, having so many GAs must be taking it's toll on you!
Hope you feel better soon and can come home to your own bed
xxxxx
 
Oh that's great news, hope you get home soon hunny :)
Get well soon :)
Lots of hugs :)

Love

Paula
XxxxX
 
Hope they get you home soon sweets. And no more ops! All that must be what made you sick all night.

:rosette2:
 
So glad to hear the good news. I hope they get you home soon. It makes such a difference. Big hugs!
 
Had my drains out today. Not had bloods checked today so not started aza as yet.No mention of home yet but the splendid news is that the microbiologists say if the oral dose of antibiotic is very high then they say oral will be ok!
I am hoping they don't say I have to stay in for a few more days due to restarting azathioprine or until had some physio as I can't weightbear. I am a dab hand at the crutches now!
So am hoping they will let me home this week and have dressings and bloods/physio etc by gp/ nurses at home.

@dexky, necrotising fasciitis is not really crohns related but is mostly seen in the immunosuppressed which of course is related to many crohns meds. It's not really very common at all really, just my bad luck.
 
Yippee, home for me today at last. Still some evidence of infection in part of the wound but as I am a sensible lady (ha , that's not often said!) then they have said come back if the redness spreads etc. Back to clinic in one week.
Have restarted aza today - happy days though at a lower dose ad it was too much for my White count.
So waiting for my discharge documents, drugs, dressings and all that jazx- and that'll be me off into the sunset with my crutches.
Proper food, bed are within my grasp!!
 
:mario2::yoshijumpjoy::grr1d: Yayyyyyyyyyyyyyyy!! Great news. Bet hub and the girls are delighted too. Enjoy, enjoy, enjoy................ and don't overdo it when you get there !
 
Yes I did get home. Now staying at my sisters as hubby away. Have discovered that getting around and making drinks etc much more problematic when you are using elbow crutches! Feeling really tired but getting well looked after!

Seeing the consultant this week and will ask him when I can start physio as I still can't weight bear, straighten my leg or even put my heel on the floor. He did say I may get contractures due to the tissue and muscle removed etc but I want to ask if he thinks this is a temporary thing... Very much hope so- can't go round hopping for the rest of my life!
I'll be happier when I find out how long before I can drive- it's my clutch foot- nurse reckoned 2-3 months minimum, she also said probably no physio for at least 6 weeks to allow for healing...what...i hope not!

My slight worry today is that I appear to be developing some redness and oozing of the middle part of the wound and a swelling in the lower third . It seems to be getting bigger though mydressings are covering it- now about 8-10cm... I hope it's not a fluid collection ... It's only a bit sore so I don't think it's infection. I am taking shed loads of oral antibiotics so it could mean iv's again. I shall have to keep an eye on it and hope it won't need draining... I think 5 ops in 2 weeks is enough to last me a lifetime Thankyou very much.
Time for breakfast, now where are my tazor charged hoppalong sticks?!!
Thanks again everyone for all your support and kind words, although we don't know each other I'm very touched and grateful!
 
Glad to hear you're getting well looked after, but I hope your wound is gonna be OK. I think I'd go and get it checked out tomorrow if it's still red. Nag! Nag! Lol. Is the CD behaving now your back on the Aza?
And I have to ask: in what way are your crutches 'taser charged'? I have visions of you zooming around sparking, flashing and zapping people!!
 
Glad to hear you are being well looked after. I can only imagine how difficult it must be to get around like that. Erg!

I'm afraid I agree with grumbletum...you should have your oozing and redness checked straight away! Yup...nag, nag.

As for the taser charged crutches...when you're finished, may I borrow them???
 
So glad you're home. But don't let anything fester, get to see the doc asap.
Take it easy and good luck
xxxxxxxx
 
Today the swelling has got a bit bigger and one side is painful now. So taking everyone's advice and will have to contact the consultant tomorrow. I hope this can be dealt with as an outpatient. Perhaps they can just stick a needle in and drain it.
I really don't want to have to go back in or worse another op. I'm sure it won't come to that, fingers and toes crossed.
 
Oh Littlemissh, good luck & let us know how you get on. Big hugs for you hunny :)

Paula
X
 
Been seen and as crp not increasing they thankfully didn't take me to theatre...bit scary though as they provisionally booked me for this afternoon. Seeing consultant again tomorrow to decide what should be done.
 
littlemissh said:
Been seen and as crp not increasing they thankfully didn't take me to theatre...bit scary though as they provisionally booked me for this afternoon. Seeing consultant again tomorrow to decide what should be done.
Click to expand...

I wouldnt be surprised if they take you off the AZA again luv. I wish I could give you a big squishy hug and make you all better!!! Meanwhile, all I can do is send you lotsa cyber huugggggggggggssssssssssssssssssss!!!!!!!!!

Its gotta get better sweet pea.
 
I don't know how I overlooked this thread! I just took about 30 minutes to read through it all (shhh...I am at work!).

Oh, littlemissh, I can't believe all that you have been through. And to maintain such a positive attitude through the whole ordeal. You are truly amazing.

I sure hope what is going on with your wound is nothing serious, and you start feeling better soon!
 
Hey Littlemiss, what did they book for this afternoon? seeing the consultant tomorrow? Sorry, I'm a little slow and your last post confused me a little. Did you have to go back to surgery today? Pulling for you with everything crossed!!
 
Thanks everyone, i shall put all your wellwishes in a bottle and pop it in my pocket!
@ dexky-They had put me on the list for theatre to open it all up again, but as CRP hadn't increased from Friday they decided not to. They want the consultant to review things this morning as he wasn't available yesterday, to decide what to do about the swelling. They are worried if it gets bigger it might cause the wound to pop open.
I can't tell if it's any bigger because they have put a big padded dressing on it. It doesn't feel sore.
I am going to try and wheedle some information out of him this morning- like when he thinks I will be able to walk , start some physio etc.
 
It appears that I may as well camp outside the hospital. Was there for 5 hours today waiting for different docs opinions! Now scheduled for an MRI tomorrow to assess the swollen area. If there is a fluid collection it will need opening again. So back tomorrow pm as the MRI department have very kindly squeezed me in.Then back on thursday am to discuss results with consultant and have another assessment.

Bit fed up now, will have been at the hospital every day this week , nil by mouth each time just in case I have to go to theatre- but they are taking very good care of me so shouldn't moan.. Am taking out a bank loan for the parking fees.
 
Oh my! Who would have believed that this saga would develop from a scratch on the leg :-( But, it does sound that they are taking good care of you. Really hoping that you won't need more surgery. :hug:
 
I dont doubt you're a bit fed up by now! I just hope they get you sorted asap. And parking fees....my local charges £4 for 2 hours now! Highway robbery!

All digits are still crossed for you!
 
The MRI was brought forward to this morning. I was in for over an hour...more than I expected as when I have abdo mri's it only seems about 30 mins. This made be a bit suspicious things were not quite right.
When it finished I asked if there were any fluid collections as that was what they are looking for. She said she wasn't allowed to say but it was a good job they fitted me in for a scan today! and that the consultant radiologist will be reporting on it immediately! She wouldn't elaborate...great.
It would have been better if she hadn't said anything.
So now have to wait until tomorrow morning to find out what she means unless I get a phone call later today.
When am I going to get a break?
 
Yeah, she should have kept her mouth shut. Even if she didn't mean anything by it, now her comments are going to be rushing through your mind all day. I sure hope she didn't mean anything by it...

Good luck tomorrow, littlemissh. I sure hope you get the break you so very much deserve.

:hug:
 
Just reading through this post and catching up..
Hope thing's go well for you tomorrow. Hoping too that your recovery is uneventful from here on...everything's crossed!!
 
Hi,
The MRI showed an area that is either abscess or myositis. Clinically the orthopod feels it is myositis. It hasn't been reported by the consultant radiologist as yet so if he feels it is abscess then it will need draining.
It isn't red and hot and it is only painful when I put weight on my leg so it is much more likely to be myositis. Excellent :))
 

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