Back from hospital from first surgery - please help!

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xX_LittleMissValentine_Xx

xX_LittleMissValentine_Xx

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Hi Everyone!
I have wanted so much to come on here and tell you all what has been going on the last couple of days. The internet that I could use at the hospital wouldn't let me on the forum!
Basically my pain started very slightly a week ago, but I didn't think much of it. I am always getting strange little pains and put them to the back of my mind. The next day it was fairly bad. It was pain all around my bottom area so sitting, going to the toilet, walking. But I was in a good mood so I didnt let it bother me too much, I wondered if it would calm itself down. So I carried on as normal and that night me and my friends went clubbing (I find it halarious now, that I went clubbing when I needed surgery!) When I got back that night I knew that there was something wrong. I went to bed and didn't sleep very well. I called my mum in the morning and she drove to get me. (I was at my uni house so she drove for two hours) and she took me to a & e.
My heart rate was really high and I had a temperature, so they treated it as an emergency and I had surgery that night.
They found and drained an abcess. I don't know exactly where it was but I don't think it was too high up, as they have told me the wound isnt very deep.
They did an MRI scan to check they had got it all, which is what I was waiting for all weekend before they let me home. So I was in hospital for five days.
I've been finding the whole dressings situation really stressful. If I need to go to the toilet, the packing just falls out. In hospital that was fine, I just got the nurse to clean it up and put a new one in. But at home I feel so stressed out as to what to do. They have explained to me how to dress it but I'm scared! I was having anxiety attacks in hospital and they even asked me if I wanted to stay in for longer! I said I want to go home, this is just the next step I need to learn.
I am waiting for a nurse to come to my house today, and I'm in pain and uncomfortable and miserable!
:(
Any comfort/ advice would be much appriciated!!
 
Sorry to hear you've been sick,I have had a lot of peri anal abcess in the past,take plenty of pain meds and let the district nurse dress it it will probably need packed for a week or two but after a day or two the pain will start to ease. Good luck Ryan.
 
You poor thing! I'm afraid I don't have any advice for you other than to just try to do what they taught you. I hope you are on the track to healing and start feeling better soon. I'm assuming you are on pain meds, I know when I was on Dilaudid it made my anxiety shoot through the roof! Is it possible to get something for the anxiety just as a temporary measure? Especially if it's a side effect of something else?

Hope you feel better soon and the worry gets better. I know how scary it can be taking care of these things. *big hugs*
 
The only pain meds they have given me are paracetamol. Which is a bit annoying because in hospital they were giving me co codamol if paracetamol wasn't doing enough. I think they anxiety is just about me being worried about looking after it.
The nurse still isnt here and all I have done today dressings wise is putting a bit of dressing next to the wound, not packing it. Thinking that she would come and do it.
Because it is still so painful I'm just so scared about trying to pack it myself. Also I can't even see it!
I just want it to hurry up and get better! :(
 
Hi Holly. Sorry to hear of your troubles, and while it might be a little anxious and you might not feel like it yet, you're on the mend now! :hug:

I don't have any experience or advice with packing, but I would encourage you to try the best you can remember before the nurse arrives. If you have written instructions, just take it slow, one step at a time. It's nothing to worry about. The difference between the best you can do and the "perfect" job is probably minimal.

I would keep a list of concerns or questions you have for the nurse. That way, you can ask the nurse to give you some constructive criticism and some pointers. Perhaps you can even locate a mirror and have it ready for the visit where you can watch (sdrawkcab).

And don't be afraid to write things down. It really helps me go back and have confidence. Get better soon, Holly! You're doing great!
 
All the best for a fast recovery, the first couple of days when you get home after surgery is always a bit scarey... but hospitals are very good and after a week to two weeks at home you will feel better than you have done for a long time.
 
Thanks :)
The nurse has just been and she said there is hardly a hole there at all so it must be healing well. At this point I know I should feel some relief but for some reason I just don't!
I know I'm on the mend. But I guess thats the thing about anxiety, or maybe I'm still just really tired!
And also I'm worried because I just read my discharge notes. Its going on about all kind of fistulas and things that have shown up on my MRI.
Also they told me at the hospital they wanted to see me again in six weeks. I assumed to check it was all healed up but the discharge notes say they want to do another examination under anesthetic. What if they do this to me all over again? I really just want to get better so I can focus on the last few months of my degree :(
 
Well, from one worrier to another, I can say try not to be concerned about things outside your control, but I know that doesn't help much. :( Keep your chin up, LMV. Waiting for answers can be tough, but at least they're on the case, right? :hug:
 
I'm glad the nurse was able to get to you and hopefully she was able to show you how to dress it properly. The pain should subside soon, so hang in there. Fistulas are common with abscesses. They may need to put a seton in, but it is a minor procedure and will help you in the long term. Try not to stress too much. Sounds like you are on the right path to some relief. A lot of us have been where you are, and I can say from experience, it does get better.
 
Well both the good and the bad news is there's not much you can do about it at this point. I know that can be difficult (impossible) to accept, but at least you know it's not your fault.

I hope they take good care of you and you are able to finish your schooling on time. I'll be sending positive and healing thoughts your direction.
 
Thanks everyone!
I'm feeling a bit better about things now. I'm so tired I can't wait to get back into bed!
Tomorrow I'm guna start thinking about doing a little bit of uni work again (have to start somewhere!) Maybe if I get a bit done I will feel a bit better about myself!
x x
 
That sounds like a good idea, but remember to take it easy. Get some rest and let your body recover!
 
The nurse has been again today and everything is still looking good. It is still a bit painful/uncomfortable but I can live with that for now!
I'm feeling a little bit happier today, though I am still extremely tired!
And my apetite is returning!
When I was in A&E they put me on pred, but then the surgeons decided they didnt want me on it, so im on a very fast taper now. (down 10mg every two days) When I was in hospital it was the first time I was on steroids without the hunger side effect, but now I am feeling it. I lost weight in hospital so it probably isnt a bad thing!
Thanks once again for all your help and support everyone :) x
 
So glad you are doing better! Having a positive outlook can make the difference. Hopefully the pain will continue to subside and you will be back to normal in no time :)

Beth
 
Yes, a bit of better news! I'm glad to hear that things a little better physically and emotionally. Take it easy a bit, and remember to stop eating when you get to the plate. That pred hunger can really be something else! ;)
 
It was a week ago today now that I went to A&E!
I kind of feel like the pain I'm getting feels more like it is inside again, rather than the sort of wound pain. Is this just because it is still sore and healing on the inside as well?
 
The nurse says it is still looking good. :)
They are going to come tomorrow and then leave it for the weekend. They said I can always call someone if I'm worried over the weekend. I'm pleased it is doing well, just wish I would go even faster!
 
i think the first 14 days post opp are the worst you get strange fellings all over and sit there trying to work out what they are mind games with your body lol... if its not managable with pain killers id call the gp tho
 
Ok, I'll not worry about it then!
I just ventured out the house for the first time since the op! Went to the cafe just 5mins down the road with Mum. Its a nice warm day so it was good to get some fresh air :)
 
Nurse has been today for the last time until Tuesday! As I have a hospital appointment on Monday with my GI. (Just a routine appointment and I will have to fill them in on all this latest stuff because I was in a different hospital last week)
So the dressings are all up to me for the next couple of days but I think it will be ok because they have said not to worry about the packing. I haven't looked at it for a couple of days but I think it is doing ok. I just want some skin to start growing there now!!
 
Is it normal to still feel so tired over a week after the operation?
I know my body is still trying to heal up and everything. I'm just starting to get sick of the constant tired and fuzzy head feeling!
I haven't been able to sleep in past 8.30 each morning since being in hospital (Typical that the time I want to sleep in I cant and I wish I would usually be up at 8.30 so I could get lots done in a day!!)
I guess I shouldn't complain, its only a small symptom. But it is an annoying and slightly disabling one!
 
Wow, your first post is almost word for word what I went through! I got so frustrated with how much the dressing kept felling out. It was a huge pain to keep calling the nurses back to put a new packing in that eventually I got my fiancee to learn how to do it. I don't want to be the one to have to tell you, but it doesn't really get better with staying in lol. Up until the day when they told me I don't need packing anymore, it still fell out atleast 2-3 times a day. Eventually though, it will get to the point (if it isnt already) where you won't even feel them changing the packing. For me it just tickled after awhile.

Do you know how big your incision was? I had a T shape cut with 7.5" one way and then about 3-4" the other, and pretty deep so they got to pack it down pretty deep. Do you know what kind of packing they're using for you? Are they using the Intrasite gel as well?

It's been about... a month maybe now that I've been without needing any packing at all because it's gotten shallow enough that they can't even put it in. It's still got awhile to heal left, but I'm really happy I don't need packing. It's such a hassle! All in all, I had packing for about 3 months I believe.

As far as being sore, I was out of bed the next day because they told me I had to get up and walk around, but that was probably because of the Morphine lol. I was definately still sore and tender for awhile though. They also kept me for 5 days... each time. I had two surgeries for it

Best of luck! and feel free to ask if you have any questions
 
Oh poor you, here I am feeling sorry myself after a week and you have been doing this for months!
Yours must have been a lot bigger than mine. I would say mine is about the size of a penny and already almost at skin level.
I always imagined it as a big hole and only looked at it for the first time a couple of days ago. When I was in hospital I tried asking them what it looked like and they said it wasn't deep.
I think they have been pleased at how fast it has healed, which is why they have said its ok not to put any packing in it over the weekend.
I'm worried because I know I've got a complex fistula that needs sorting out soonish, but I'm trying not to think about it too much at the moment and just concentrate on getting this one healed up!
 
Oh don't feel sorry for me trust me. I had morphine for most of the time, it was quite fun lol. When I had my first surgery in November I had a smaller cut. Maybe two inches long, so I got sent home after 5 days in the hospital and they actually found that the nurses messed up and I ended up getting really infected and they were doing more harm then good. Three weeks later I was back in the hospital for emergency surgery taken by ambulance where I had a pretty big surgery because they found a second abscess as well and that's when they made the big cut. The worst part of everything for me though was the pain before, my nurses that messed up, and I don't think I needed to be in the hospital for as long as they kept me. I was stupid and left my abscess for 3 years though so it was all worth it and a big relief for me.
 
Yeah you must be feeling so much better now! Especially if it is almost healed up.
That must of been horrible when it got all infected, thats my worst fear at the moment!
I'm glad you are doing a lot better now. I can't imagine how painful a large abscess must be, I felt shocked when they told me mine was small!
My discharge notes say they drained 20ml of pus! (Funny how we like these details)
 
I'm new to this site, but everything I've been reading is the same as I have been going through and I've had Crohn's for 24 years now.
Your abcess problem is identical to me and I've had MANY peri anal abcess's as well as fissures and fistulas in the same area......fun
Glad to hear you're doing better (it always does) and you were saying that you thought it was funny you were clubbing when you should have been having surgery....well, I was visiting relatives in England (I live in Canada) when I developed an abcess within one day of arrival for my week long vacation. I too thought, well maybe if I up my meds, maybe it'll go down or release on its own......nope. I relented and saw a Dr while there, because the pain was getting unbearable and he wanted me to go in to hospital to get it lanced, but in my stubborness, decided (as I was heading back to Canada the next day) to take the chance and take a 9 hour flight back home. BIG mistake! Worst flight of my life, especially as I couldnt sit properly. I ran out of pain killers, not that they worked anyway.
I eventually got home, had a quick shower and THEN decide to head to the hospital. The nurse took one look and said, "Oh my God, you've had this for a week?" I didnt even make it to the operating room, they did it in Emergency. The surgeon said later that I was lucky. They had put me out and all he did was touch it with the blade and it burst. I too couldnt see it, but it ended up growing to the size of a mandarin orange, according to the surgeon.
Needless to say, I won't be doing that again! And haven't as it's happened several times since.
Good luck and glad to hear you're doing great!!
 
I have had numerous fistulas and abscesses over the last 20yrs had setons in situ on at least 3 occasions, I now have a colostomy due to peri anal sepsis and I would have to say that one benefit is being able to sit down without thinking or trying to sit on one bum cheek to save the other! Hope you all feel better soon.
 
I have only had mine 3 weeks but the pain was so bad and the MRI scans showed the fistulas were extremely complex even though on the outside everything was pretty well healed,I also have a lot of scarring in the rectum.
 
Early days, I've had a temp ileostomy in the past all I can say at the min is that it's great to be pain free and not have the leakage etc as for the rest of living with the colostomy you'll have to ask me in a month or two!
 
tattoobrit said:
but it ended up growing to the size of a mandarin orange, according to the surgeon.
Click to expand...

Oh my goodness! I can't believe you managed to leave it that long, it must have been so uncomfortable!

I saw my GI today for the first time since November (Abscess was drained in a different hospital). Well actually it was my GI's temporary replacement because she is on maternity leave.

So obviously I told him about my recent troubles and gave him my discharge notes from the other hospital. He then decided that I should start infliximab. I'm fine with this as I have known for a while now that my small dose of Azathioprine isnt really doing anything for me. We discussed when to start and I decided I wanted to start when I have finished uni. My year ends in June and I have so much work to do now for the last couple of months I really think it would be better to leave it until after I graduate so that I don't have so many other things on my mind. As well as it meaning I would have to take an hours train journey to and from infusions.

But then he said that he was going to discharge me from this GI team and refer me to an IBD specialist. I know that this is probably for the best as they will know a lot more about infliximab and my specific problems but I can't help but feel a bit sad about this. I really get on with my GI and it wasn't even her decision to move me to another team as she is still away on maternity leave. I think it is so important to have a doctor you get on with and I really liked her. :(
 
Yes, it is very important to get along well with your GI, feel comfortable with and trust him/her. My original GI who diagnosed me left our state 7 years ago, and I still can't find one that I liked as well as him. Such is life, hmm?
 
So I told the practice nurses I was thinking of going back to uni at the weekend. So she has come today and shown me how to do the dressings myself. I'm not worried about this now because it doesn't really hurt anymore so I know I just have to do it and keep it clean and it will get better.
The only thing is.... How do I see it? I obviously have to get the packing part in the right bit otherwise it is not going to work!
Does anyone have any tips on mirror angles?
I have tried looking over my shoulder at a mirror on a wall and I can't see it.
The most successful one for looking at it so far has been a mirror on the toilet seat and kind of squatting over it, but I'm not sure how much I will be able to see once my hands are trying to put a dressing on...?
(I haven't tried this yet because she just did it for me, so I'm just preparing myself for tomorrow)
Just wondering if anyone has any experience with this?
 
xX_LittleMissValentine_Xx said:
Does anyone have any tips on mirror angles?
Click to expand...

:blush: Don't tell anyone, ok? :shifty-t:

I have one of those full-length mirrors, like you'd look at to see your whole outfit before you leave the house. Anyway, feet shoulder-width or more apart, torso down like you're in the rugby scrum (or on the line in American football), then straighten your knees and look through your legs at the mirror. Until I got good at it, it is a bit tiring and my balance isn't what it used to be. You also have to be closer to the mirror than you might think at first, but you can see and have both hands available. :blush:

I hope that works for you, LMV. This stinkin' disease. I'll tell you what! Glad to hear that you got your confidence with the packing though and that you're starting to get back to uni. Good on ya! :cool:
 
I used to stand and spread my legs, and then hold a camera and just point up, and take a pic lol.. You obviously have to delete it after, but if gives you a chance to look. It works for me lol
 
I did it! :)
Found it a little awkward. I was in the bathroom so I put the mirror on the floor slightly angled and kind of stood over it. I kinda held the packing part in place then stuck some gauze over the top. Its two weeks today now since I went to A&E.
 
post surgery dressings

xX_LittleMissValentine_Xx said:
Hi Everyone!
I have wanted so much to come on here and tell you all what has been going on the last couple of days. The internet that I could use at the hospital wouldn't let me on the forum!
Basically my pain started very slightly a week ago, but I didn't think much of it. I am always getting strange little pains and put them to the back of my mind. The next day it was fairly bad. It was pain all around my bottom area so sitting, going to the toilet, walking. But I was in a good mood so I didnt let it bother me too much, I wondered if it would calm itself down. So I carried on as normal and that night me and my friends went clubbing (I find it halarious now, that I went clubbing when I needed surgery!) When I got back that night I knew that there was something wrong. I went to bed and didn't sleep very well. I called my mum in the morning and she drove to get me. (I was at my uni house so she drove for two hours) and she took me to a & e.
My heart rate was really high and I had a temperature, so they treated it as an emergency and I had surgery that night.
They found and drained an abcess. I don't know exactly where it was but I don't think it was too high up, as they have told me the wound isnt very deep.
They did an MRI scan to check they had got it all, which is what I was waiting for all weekend before they let me home. So I was in hospital for five days.
I've been finding the whole dressings situation really stressful. If I need to go to the toilet, the packing just falls out. In hospital that was fine, I just got the nurse to clean it up and put a new one in. But at home I feel so stressed out as to what to do. They have explained to me how to dress it but I'm scared! I was having anxiety attacks in hospital and they even asked me if I wanted to stay in for longer! I said I want to go home, this is just the next step I need to learn.
I am waiting for a nurse to come to my house today, and I'm in pain and uncomfortable and miserable!
:(
Any comfort/ advice would be much appriciated!!
Click to expand...

Hi from experience I know it can be scary to leave the security of the ward, no matter how depressing and frustrating a hospital stay is and coping with a dressing on your own is not something most of us are not trained to do, but DO trust your nurse and voice your concerns and ask for their advice think positively the wound won't need dressing for ever it will heal AND don't stop clubbing well maybe for a while :D
 
So maybe my first dressing by myself didn't go too well.
By 5.30 tonight I suddenly noticed my trousers were wet! I don't really understand why. Maybe because I used a different type of gauze which doesn't absorb things so well? Or maybe I didn't put enough packing in. I've re done it now and I put a bit more in this time.
 
Today I had to change my dressings after about four hours because I accidently weed on them! (Why is it sometimes wee goes straight down the toilet and sometimes it just sprays about everywhere? :p ) Maybe thats what happened yesterday and i didn't notice?
Anyway when I took my old dressings out, the packing I had put in only about four hours before was absolutely soaked in pus...
It just doesn't seem to be drying out. It is now two weeks post op - am I expecting too much? I only feel like it should be coming along more as this is the impression the nurses gave me. I have booked an appointment to see a nurse at my local GP practice in Bath for Monday. So I can ask then.
In the meantime should I think about changing my dressings twice a day despite any toilet issues, even though I was told to do it once a day?
 
HI, Don't worry you should change your dressing as often as you think neccessary esp to avoid any further infection keep us up to date we DO CARE and appreciate what you're going through lodsa virtual hugs
 
Are you able to wear a pad in addition to your packing? I did not have packing with mine, instead wearing a dressing (which is what it must be called when a guy wears it... hey, I don't make the rules ;)) It might give you a replaceable option while you're at school that you can take care of outside your house? Just an idea? :hug:

Also, it might have nothing to do with your ability to do the packing. I'd wager that it's how much you move, walk, etc, compared to when you rest at home?
 
The way I have been shown to do my dressings is to stick a bit of gauze over the top of the packing to kind of keep it in and I guess soak more stuff up. This is the bit that I managed to wee on!
I'm back in my uni house now everyone! Fully independent and back to my usual every day life!!
 
GOOD NEWS BUT tell me you are registered at a surgery at uni to continue care with nurse/dressings advise stay well
 
Hello,
Saw the nurse today and everything is still very positive :)
Still have to keep going with the packing but I don't think it will be for long. I have another nurse appointment on Thursday as they are going to continue keeping an eye on it but everything I have been doing is good. So I'm pleased with that.
I'm in a very good mood today :)
 
I was suddenly a bit worried about it last night.
I changed my dressings because they were falling out, and they smelt bad. :(
I've tried so hard to keep it clean. I have an appointment with a nurse tomorrow and I considered going today instead. But this morning they didn't smell so I'm just going to wait until tomorrow.
 
:rosette1:
xX_LittleMissValentine_Xx said:
Hello,
Saw the nurse today and everything is still very positive :)
Still have to keep going with the packing but I don't think it will be for long. I have another nurse appointment on Thursday as they are going to continue keeping an eye on it but everything I have been doing is good. So I'm pleased with that.
I'm in a very good mood today :)
Click to expand...

Excellent news hope things keep going well for you :medal1:
 
Get use to that smell.. It smells really foul right? That's the infection coming out.. I'm still dealing with it as well. Somebody gave me advice to try using a dryer sheet in your back pocket. It would overpower the smell of the drainage (if there is any) and if anyone saw it, you would just laugh it off as if you lost the dryer sheet, and now you've found where it went.


Also, did I reply to your PM?
 
Yeah it smells horrible! But it didn't smell like that before! And its the kind of smell that just gets stuck up your nose!
I am seeing the nurse this morning though so I will mention it!
And yeah you did, its my turn to reply!
 
So I have just seen the nurse. And I actually don't know what to think about what she said!
She said not to dress it any more (that's good, I was getting sick of it). But she said the way I have been dressing it, with an active dressing has caused an overgrowth of skin. So now there is a little hole underneath which she says will probably always be there. And that it will probably always leak out whatever it is it leaks out! :(
I wanted it to get completely better so I could forget about it, but it is always going to be like this...
Is this normal and my expectations were unrealistic?
And I was only dressing it how they told me to. She did say it was quite common. That sometimes it can look like it is doing well and then that suddenly happens...
She said to come back next week and they can see how it is going. So I have an appointment on Monday.
 
I don't think so, she said it was a granuloma?
The way I understood what she was explaining was that too much skin has grown over the top of the wound site.... :/
She managed to stick a probe in there, but seems to think it is all healed up underneath. I don't really understand it to be honest and I just cant get close enough to it to have a good look myself.
I'm kind of worried about what is going to happen next at my check up.
 
That's what I was thinking would be a fistula as well.. I was told granulation was normal as my nurses saw some, my it was in the wound itself...

Personally, (key word there) I don't think those nurses are very knowledgeable. Sure they're supposed to be "RN's" but after my experience with them and some of the things I've heard it leads me to wonder they are doing what they're doing, and not working in hospitals.
 
AW NO keep positive when do you go back to see your consultant? It must be so difficult to keep your faith in the nurses given the advice given you've been given and the fact that you've followed all their instructions Get an appt with your GP and ask him/her to explain what's going on and what you can do about it Enquire if you local PCT has a dedicated IBD nurse you really do need a definitive diagnosis There's never going to be any hard and fast rules with this disease and in my experience and from what I've read on here every case is different don't let it get you down TOO much although you must be well P'd off
 
I'm not really sure what is going on with consultants.
I'm supposed to see the surgeons I think in the next few weeks but I don't have an appointment through yet.
To top everything off, last night I had really bad stomach pains again. I've been getting it really low and it also feels like it is in my bladder and it shoots down through my urethra.
It basically feels like a UTI but It doesn't hurt when I pee, I get diarrhoea.
Last time I had it I went to the GP and they did a blood test and a urine sample. But two days later I went into hospital for this abscess. So when I saw my GI I didn't get to talk to him about this horrible stomach pain I have been having, because we were discussing abscesses and fistulas.
Now I just feel really down. Its like it is trying to get me from every angle it can. We fix the abscess so it has a go at my tummy/bladder again. So sick of it being one thing after another and not knowing what to do. :(
 
Yeah not surprised you're feeling down coz you really don't know what's happening or what to do so go see the GP and ave a word and don't leave until you've got answers to your questions loadsa virtual healing hugs
 
I called my IBD nurse and left a message but I didn't get a reply. So I decided to go to a walk in surgery. Its not at my GP's but its something. I spoke to a nurse there and told her about the pain I had last night and still have now. I did a urine sample and I have a urine infection so now I am on a course of antibiotics for 5 days. I also went and bought myself some co-codamol but I don't even think that is making the pain go away :(
I guess I just have to wait for the antibiotics to kick in.
I'm not convinced that this is separate of crohn's disease. I find it odd how every time I have got this pain it has always started off with bad diarrhoea. But hey, these antibiotics will fix it up for the short term and I guess I will just have to wait and see for the long term!
Thanks for all your help everyone! :) x x
 
Yeah I have. I've had a fistula which comes out to the skin which is close to the top of my bum cheeks for about a year and a half, but it was only confirmed a fistula from the MRI I had at my recent hospital stay. That showed it branches off three ways I think. But it didn't mention anything about my bladder... :/
I immediately thought fistula when I first started getting this bladder/stomach pain.
I just don't know really. If the IBD nurse calls me back on Monday she may suggest an earlier appointment with my GI which I think might be a good idea. I will feel better even knowing I have just spoken to him about it!
 
Aw didn't realise you'd had fistulas in the past I was reluctant to mention the nasty fistula word 'cos didn't want to bring your mood down any lower and you can't get much lower than fistula fever can bring speaking from experience yep really think you need to see your gastro consultant asap and be insistent you get answers and treatment
 
It's just really awkward for me at the moment because I am in the last few months of my degree. I know health comes first, I want to feel better. But my degree is also a high priority for me as well. (Mainly now I feel like it is in the way of everything and I just want to get it done). So that is why I haven't started treatment for the fistula's yet, and I have been holding off stating infliximab. I just want to get through these last few months.
Its just really difficult because generally my every day pain or discomfort is very low, until something like this happens.
Can steroids help fistula's or not? I was thinking a few months of steroids could maybe just keep everything at bay? Or maybe I should just start infliximab... don't know what to do!
 
inflix isn't the answer for everyone didn't have any effect on my fistulas or chrohn's symptoms steroids might help with the crohn's symptoms but can't see any evidence of them helping with fistulas Icompletely understand your priority is finishing your degree and yes your health should come first, but ya can't just disregard the work and effort you've already put in to it it might seem like a steep uphill climb at the moment, but hang on in there if you can just imagine venting all your frustration on the mortar board throw
 
Yeah :) That graduation moment will certainly be worth the fight! This infection has just got me down I guess it happening so close to everything else has got me wondering if I made the best decision holding off treatment.
Anyway I am where I am. I just have to try and focus and put all these issues to the back of my mind! (I'm usually good at that)
Thanks once again for the support :) x
 
Re the dressing: It can be very difficult to get the right technique when packing a wound and that is not your fault. What I mean by technique is, being able to pack the wound to the right level of pressure.

What needs to happen for a wound like you have to heal is for the packing not to be too tight that it keeps the wound open but not too loose that it closes up too quickly. When it is packed to correct pressure it will heal from the bottom up with the skin closing last. When packed too loosely the sinus/fistula will remain open but the skin will close, usually leaving a very small opening that exudate (discharge) will leak from.

To be honest, you guys all need medals for just being able to do these dressings yourself. Not only are they difficult dressings to do but add to that the inaccessible places they are and well...my hat goes off to you. :worthy:

I would say the UTI is separate from your Crohn's...this is something I wrote a little while ago about UTI's...

Unfortunately some women are prone to recurrent/chronic UTI's for no obvious reason and they can run in families. It is also unfortunate that the urethra in a woman is only about 4cm long, so very easy for bacteria to travel up to the bladder.

Cranberry capsules are quite effective for many women as a long term way of reducing the amount of UTI's you get.

Also Ural sachets, when you first get that feeling that a UTI is starting, can stop one in it's tracks.

Nylon underpants or pantyhose without a gusset can cause issues for some women, probably more so with thrush but also UTI's. Stick to cotton underwear and gusseted stockings. I know it sounds like an old wives tale but tight clothing can cause UTI's for the same reasons as nylon stockings can...it creates a warm, moist, non breathable environment.

If you wear pads then that also creates a warm moist environment that is ideal for fungal infections.

Perfumed soaps and powders can cause irritation and external infection which track up into the bladder and cause infection.

I know when you have a UTI and are going to the toilet frequently, and it feeling like you are passing razor blades, the temptation is to drink less but the more concentrated your urine becomes the more irritant it is to the bladder.

As Lydia has said, the contraceptive pill can cause UTI's in some women due to the hormonal changes it causes.

Urinating shortly after sex helps to flush away any bacteria that may have entered the urethra during sex.
Click to expand...

I hope you will be on top of things again soon LMV. :hug:

Dusty. xxx
 
Yeah I suppose you are right it could be separate. I have just always associated it with crohn's because the pain starts at the same time as diarrhoea, and I don't really have pain when urinating, just pain in that general area.
I just don't get what is going on with my body at the moment! Before I went into hospital I had a sickness bug, then I went into hospital, then I got a cold and now a UTI!
And today the area around my abscess feels very slightly painful again, as if it is building up with pus again :(
So sick of all this! :(
 
I saw the nurse today and told her I was a bit worried because it felt like it was building up again.
She gave it a good poke about and said she couldn't feel anything. She suggested I get in contact with the surgeons secretary.
So I called and it was just an answer phone message about not being able to take the call and if your query is about an admission call this number, if your query is about an outpatients appointment call this number, if your query is about a colonoscopy call this number. Well I didn't have a pen so I didn't write any numbers down and its not even about any of them so now I don't know what to do....
Any Ideas? Should I just leave a message?
 
xX_LittleMissValentine_Xx said:
Any Ideas? Should I just leave a message?
Click to expand...

Sometimes in these automated systems if you say "agent," it will forward you to a live person. Pressing 0 (zero) while the recorded voice is talking sometimes also has effect. Otherwise, yes, I'd leave a message if I can or choose the closest option and talk to a real person and hope they can get you pointed in the right direction. Hope one of those work for you. :confused2:
 
I called again and got through this time, to a very unhelpful secretary! Apparently its my surgeons policy if your symptoms re-occur to go back to your GP to get another referral. Which is stupid as surely I am still on his list if I am due to see him in a few weeks? But she literally didn't let me get a word in!
So as the pain isn't really bad (yet) I'm going to leave it for today. My GP surgery do have a walk in at 2.00, but I have already been there today!
If it feels any worse tomorrow I will go and see the GP. I know there isn't much the GP's can do in these sorts of situations, but at the end of the day they can tell me to go to A&E if they think that is best or even try and contact the surgeon themselves.
 
xX_LittleMissValentine_Xx said:
I saw the nurse today and told her I was a bit worried because it felt like it was building up again.
She gave it a good poke about and said she couldn't feel anything. She suggested I get in contact with the surgeons secretary.
So I called and it was just an answer phone message about not being able to take the call and if your query is about an admission call this number, if your query is about an outpatients appointment call this number, if your query is about a colonoscopy call this number. Well I didn't have a pen so I didn't write any numbers down and its not even about any of them so now I don't know what to do....
Any Ideas? Should I just leave a message?
Click to expand...
Call again tomorrow and try to avoid lunchtime but go through the hospital switchboard if you get the same voice mail go back to the switchboard and explain you urgently need to speak to someone in thei dept and none of the options are suitable, there may be a secreterial pool that the switchboard can transfer you to
 
I went to see a GP today. My temp is high (I didn't see what it was) my blood pressure is a bit high and my heart rate is high (138) So she has given me two lots of antibiotics, (I am still on the ones for the urine infection as well so that is three lots) and has said if I don't feel better tomorrow to go back and see a nurse again who can retake my temperature and blood pressure etc.
I really hope these antibiotics do the trick!
 
It popped!

So I had already decided to go to the walk in surgery today, as I wasn't feeling any better. Then just before I left I went to the loo to notice my underwear was very wet! It was almost awkward because I was at my friend's house and I came out the loo like 'Something has popped!' So it was very pusy and a little bit bloody. The doctor just said, yes it has popped! I said I can still feel it a bit and he said there was still some hardness so there is probably a bit more to come out. And he has given me some cream which I think he said was antibacterial to use in the shower.
So... I feel ok about this I think! I'm glad I didnt end up in hospital and hopefuly it will all drain out!
Other than that I have got some stomach pains and diarrhoea. I'm not sure if its normal crohnsy type things or if it is from the antibiotics. But Its not worrying me too much.
I have an appointment with the nurse tomorrow which I made on monday so I may as well go so she can have a look at how its going.
Other than that I don't really need to leave the house for a few days so I'm guna try and get on with some uni work! :)
 
Hi,
I am sorry you have had this problem. My daughter who is 10 got an abscess back in Nov 2010, and then it came back in Nov 2011. She got a SETON placed in February of this year, and it seems to be helping. The way she always knows when an abscess is developing is the same symptoms you had.. THey didn't do any packing in hers though.. just cleaned it all out, and let it drain..

I am very sorry for both of you and hope whatever meds you take going forward helps. As we live here in the US, I am not sure what you all do as far as home nursing etc., but if they are available, I certainly would let them come and take care of you.. take pain meds, and take care of yourself.. THey have given my Caroline medicine as well for anti anxiety when something horrid and new has happened.. perhaps they could do that for you as well?
I hope tomorrow brings you peace and a smile..
 
I had two big abcesses on my armpit ( about 8 months before diagnosis of CD, not sure if it could have even been related to my CD as it was on my armpit) and they lanced them and told me to take one warm bath in epsom salt every day. It helped a TON . The amount of puss and blood that was in the bathtub grossed me out though lol. I always took a shower after because I didn't feel clean! Anyways, I hope you start feeling better soon, abcesses surely are painful!
 
I didn't see anything come out in the bath last night which is a bit annoying. It has still been draining all night though. I can still feel a bit of pressure I hope it all comes out. I suppose it could be still making more though? I don't know!
 
OKAY, well personally I wouldn't have expected to see any discharge actually in your bath water, but hoped it might perhaps relieve the pain a little by reducing the swelling it's a good sign that it's still draining , annoying but at least it's not building up into an abcess which might have needed surgery to get rid of it. Try another bath tonight even if it dosen't stop the draining at least you'll know it's clean
Keep Well xx
 
I went to see the nurse and she said she can stick a probe in there about an inch :(
I need to try and get in contact with someone in General Surgery to find out when my next appointment is but no one is answering the phone! Switchboard keep putting me through to loads of numbers that just ring and ring and ring. I might wait and try again on monday morning.
 
Saw the nurse again today. I don't feel any pressure now and she said there is no hardness so hopefully that means it has all drained out. Fingers crossed it stays like that for a while and heals up a bit. I come off antibiotics tomorrow so we will see what happens!
 
Wow...

See I knew mine either isn't as bad as a lot of peoples or the Remicade just fixed me up. I was on remicade for around 9 years. I was due for another dose last month but wasn't able to get it because I lost my job/insurance at the beginning of January. Enough of the bad, I had a resection in 2001 due to badly diseased section of bowel and a big growth. Everything was great for a few months with no medicine, the I had some real bad stress in my life and the crohn's was back with a vengeance. Doctor tried a few different meds until she settled on the Remicade. I had 2 doses at the hospital and then going forward a nurse came to my house and gave it to me there. I also have a history of abscess and fistulas. The Remicade for the most part not only has kept me pain free for 9 years, but for the most part the fistula/abscess has been quiet also. So this was my very long winded encouragement to start the remicade as soon as possible. You never know it may work as well for you.

Rod
 
Hello,
hope you are doing better!
This might sound a bit strange but I had a bit of experience with a fistula/abscess and was really struggling. It had went from bad to worse and 'they' were talking about doing some really frightening things to me.
I am big on trying to help myself, research and natural along with what the Dr.s say. I came across Organic Barley Green and read about it til my eyes ached. I ordered some and as soon as I rec. it started taking it. (It was the powder form) I mixed it with grape juice, a very small amount. Drank it 3 times a day. It taste like a fresh mowed lawn smells, lol. I went back to see mt CRS and he asked what did I do. When I told him, I thought he would laugh, he didn't. He said whatever I was doing it had healed enough the I would not need to have the area cored...and what ever else it was.
I do not use the Barley Green on a regular basis. My body seems to build a tolerance to things and they stop helping, so I only use it to 'shock my system.'
I don't know if this could help you or not. I do know if I find myself there again I will try it again.
Hope today finds you all doing better!
 
Very Happy!

Just seen the nurse today and she said I don't have to come back and see them about it again unless I am worried about it! :) :applause:
She said it looks clean and dry!
I know my journey with this abscess and other fistulas are far from over (Still waiting on an appointment for my repeat EUA which I'm hoping will be in the next couple of weeks).
But I'm taking this as a good sign, I haven't had many ups recently so I'm taking this one gladly and telling the world about it! :D
What really helps is today is such a beautiful day. So sunny, the first time this year I have gone out without a coat! :sun::Flower:
So I am guna spend this day very excitingly doing uni work! Not really exciting but it has to be done! :)
Wishing everyone a great day!
LMV
x x x x x
 
Woohoo! What a fab update LMV! :panda::panda::panda: May it keep on keeping on hun. :hug:

Onwards and Upwards!
Dusty. xxx
 
So its five weeks today since I came out of hospital. I read in my hospital notes that I would be having a repeat EUA in six weeks. So I called up today to chase up my appointment. They told me that I have come off the list for surgery and have an outpatients appointment with the surgeon instead. Thats fine... Apart from the fact that I'm running out of time!! This appointment is on 10th April, and they said there is no way they could bring it forward. What if they then decide they need to do the EUA? I thought the whole point of that was to see if it had turned into a fistula or not.
May is so so so busy for me as I need to get all the uni work done that I have missed because of going into hospital the first time. I need to hand in my dissertation, plus three other pieces of work, plus do three presentations and then two exams!!!
Eugh... sorry I think I just need to vent about this. I am literally sick to death of not knowing what is going to happen with this. I have been waiting for an appointment through my door every day for five weeks and now I still don't know what is going to happen until 10th April.
 

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