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Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Back from hospital from first surgery - please help!



 
02-21-2012, 05:22 AM   #1
xX_LittleMissValentine_Xx
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Back from hospital from first surgery - please help!

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!!
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02-21-2012, 06:19 AM   #2
bigtruck
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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.
02-21-2012, 06:44 AM   #3
tiloah
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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*
02-21-2012, 06:46 AM   #4
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ahhh god bless you , hope it gets better very soon for you xx sending you hugs xx
02-21-2012, 07:25 AM   #5
xX_LittleMissValentine_Xx
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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!
02-21-2012, 07:36 AM   #6
sawdust
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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!

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!
02-21-2012, 08:09 AM   #7
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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.
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02-21-2012, 08:10 AM   #8
xX_LittleMissValentine_Xx
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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
02-21-2012, 08:36 AM   #9
bigtruck
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My MRI showed fistulas going every direction they were like rabbit warrens!
02-21-2012, 08:39 AM   #10
sawdust
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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?
02-21-2012, 09:19 AM   #11
CrohnsNYC
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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.
02-21-2012, 01:38 PM   #12
tiloah
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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.
02-21-2012, 02:48 PM   #13
xX_LittleMissValentine_Xx
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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
02-21-2012, 04:00 PM   #14
tiloah
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That sounds like a good idea, but remember to take it easy. Get some rest and let your body recover!
02-22-2012, 06:30 AM   #15
xX_LittleMissValentine_Xx
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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
02-22-2012, 10:23 AM   #16
CrohnsNYC
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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
02-22-2012, 04:30 PM   #17
sawdust
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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!
02-23-2012, 04:29 AM   #18
xX_LittleMissValentine_Xx
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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?
02-23-2012, 05:20 AM   #19
bigtruck
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That's more than likely it, the nurse will see if there's any infection when dressing it.
02-23-2012, 05:31 AM   #20
xX_LittleMissValentine_Xx
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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!
02-23-2012, 05:38 AM   #21
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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
02-23-2012, 06:42 AM   #22
xX_LittleMissValentine_Xx
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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
02-23-2012, 06:54 AM   #23
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I bet it felt lovely to be out in the fresh air
02-24-2012, 06:43 AM   #24
xX_LittleMissValentine_Xx
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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!!
02-25-2012, 05:25 AM   #25
xX_LittleMissValentine_Xx
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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!
02-25-2012, 09:05 AM   #26
tiloah
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Yes, it's normal. Cut your body some slack! You need rest to heal and recover.
02-25-2012, 12:12 PM   #27
xX_LittleMissValentine_Xx
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Oh its just so frustrating! I want to get on with my life again!
I have put up with it for over a week now. I'm bored of being bored and feeling like a vegetable!
02-25-2012, 12:32 PM   #28
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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
02-25-2012, 12:44 PM   #29
xX_LittleMissValentine_Xx
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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!
02-25-2012, 01:07 PM   #30
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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.
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Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Back from hospital from first surgery - please help!
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