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Worst fears realised - again

annawato

Moderator
Staff member
Well the good news is I have relearnt how to start a new thread! haha. Bad news, I had my appointment with the new crohn's specialist today about starting on new drug trials. Basically there are lots of new drugs in the pipeline but none of them will be suitable for me because I keep getting these damned intestinal abscesses and it is too dangerous to suppress my immune system more with the biologics as its only a matter of time before they are unable to control the sepsis. So I have to stay in hospital (3rd visit this year,,13 weeks so far) until they can get this latest abscess gone then hopefully I can stay well enough to come down to lower levels of hydrocortisone so that they can do another bowel resection and put in another temporary stoma which I will need for a year or two. I had REALLY been hoping a new drug would bring the crohn's under control and prevent the abscesses but its just not possible for me now. On the bright side, once we get the stoma in place it will allow my bowel to heal so I won't keep getting abscesses and won't have to live part time at he hospital! Then hopefully I will be able to be started on one of the new drugs to keep the crohn's under control so I don't get to this point again. My last stoma was a nightmare, 3 litres liquid a day output so I am expecting the same and the problems that go with that. Liquid acid seeping under the plate, bags falling off in public places, getting up 2-3 times at night to empty the bag. #$%^ is all I can say.
However I must admit that I'm glad a decision has been made and there is some end to this even though its not the one I want. At least we are working towards a solution rather than just treating each flare up. And It will be very nice to have ankles and legs again rather than tree trunks from all the hydrocortisone! Sorry so long but had to let it out.:sign0085::mad2::thumbdown::eek2::stinks:
 
Oh my goodness. You have been through so much. I will keep you in my prayers. My problems seem so small now! I just had my first resection and absess removal a month ago after having Crohn's for 10 years. May I ask how old you are and at what age you were diagnosed?
 
How long ago did you have your last stoma? Hopefully now there are enough different type of supplies that you won't be having as much trouble as the last one.
 

annawato

Moderator
Staff member
I just turned 50 (!!!!!) and was diagnosed about 20 years ago but suspect I have had crohn's since I was a teenager since I always had stomach problems and trouble keeping on weight etc. Usual story of doctors saying it was just in my head! Well I've certainly proved them wrong, unless my head is in my gut!
 

annawato

Moderator
Staff member
My last stoma was 2010-2011 so don't think there will be much change (????) in products, but now I have found this wonderful site and all you wonderful people at least there is somewhere to go with questions, and laughs and commiserations. I won't feel quite so alone.
 
Any problems you have with your stoma, definite come back here and ask away. I've learned a bunch from other folks here on how to fix some of the problems with leaks, skin breakdown, food to help with too much output, etc. Hopefully we can help you out some and this time around it won't be so bad for you.
 

Terriernut

Moderator
:hug: Honey, I'm sorry.

You need to ask the surgeon, and the stoma nurses need to tell the surgeon this very important thing: You need a longer stoma, and you need a SPOUT. They can do that for you. This will save you soooo much trouble, and why surgeons arent better at this I dont know!
 

annawato

Moderator
Staff member
thanks Terriernut, I've just made note to talk to my surgeon about both these things, makes sense since it used to retract and so leak under the base plate. A longer stoma should help with this. Not sure what a spout is but will do some research.
 
Oh yeah....if it retracted, that would definitely be a HUGE problem. I think when Misty says spout, she means get that sucker hanging out so it can't retract and forms a long spout.

I've got pictures of my spout (Sideshow Bob) on my cell phone and it looks like porno because it is up close and you can't tell that it is something on my abdomen. Hahaha!
 

Terriernut

Moderator
A spout like a proper little teapot! My Stan has a wee spout. Doesnt help much now since its all shrunk because of the parastomal hernia, but it used to be ok.
 

annawato

Moderator
Staff member
I've got pictures of my spout (Sideshow Bob) on my cell phone and it looks like porno because it is up close and you can't tell that it is something on my abdomen. Hahaha![/QUOTE]
haha, you could use the mens room and get a few VERY weird looks!
 

annawato

Moderator
Staff member
Yes a teapot spout would be perfect, making sure the liquid went into the bag instead of under. Can they do that for temporary stomas? My last was a loop I think, i.e. the bowel wasn't severed just divided and the two ends sewn to the skin. I think sometimes the liquid would come out the top hole and go down the bottom hole but maybe i'm getting mixed up.
 
Thanks Anna. I truly wish you the best....I am 37 and was diagnosed when I was 27. I was lucky to be in remission most of those 10 years until recently (on Asacol). I believe my dr is leaning towards starting me on a biologic in a couple weeks; and I am nervous.
 

annawato

Moderator
Staff member
Tj mom, don't be nervous about starting biologics, whilst any med can have side effects they are rare and the benefit in managing crohn's is huge. I wouldn't be in my predicament if I had responded well to biologics when I had my last ileostomy. That is why so many gastros are pushing to get people onto them so that they can avoid surgery and all the complications that come from that. Good luck
 

annawato

Moderator
Staff member
Yes I always felt like a boy emptying my bag even though I did it sitting down on the loo. the whole pointing it in the right direction thing. Could have played aiming games with a ping pong ball like some do with little ones.
 
Location
Australia
How disappointing for you!
Hopefully you'll get a better behaved Stoma this time.
Mine is a spout too. Gives me no problems at all so far. Other than the usual Stoma cheekiness.
 

annawato

Moderator
Staff member
samboi thats good to know, i'm feeling more positive about it after terriernuts and 2thfairys comments about spouts etc. Always have enjoyed a good cuppa.
 

annawato

Moderator
Staff member
Well surgery is booked for 23 nov and I have to stay in hospital til then on TPN to build up my nutrition. luckily i can stay at out local hospital up until 10 days before surgery when I'll be transferred to Royal Prince Alfred in Sydney for I guess more nutrition and tests etc. We live about an hour and a half away so it will be a pretty lonely time but I'm just so glad something is being done - its certainly been an up and down couple of weeks with no-one able (or willing) to do anything. I felt I was stuck in a viscous circle of abscess, hospital, get better and relapse for the rest of my life. Fortunately my gastro got on to this super dooper expert (arent they all???) who is willing to take the risk, as am I.
Terriernut I spoke to the surgeon about the spout etc and explained the problems I had before and he thought he'd be able to make me a lot more comfortable this time around. It was great just knowing what to ask for so a big thankyou to you!
 

annawato

Moderator
Staff member
ps. Is there anything else I should be asking the surgeon about before its too late? I'm seeing him again on the 6 nov to discuses the problems I had with high output and malabsorption but wondered if there were more practical basic stuff that i should know about. last time like most of us it was just a shock to wake up with a stoma, this time i want to be prepared.
 

Terriernut

Moderator
Having gone through this before, you ARE an expert now! But I would be testing a fake stoma if you can first. You need it to be in the just right position for clothes. Mine isnt, and that causes issues. So thats a stoma nurse question. Once you are in the hospital, they can pay you several visits. And I have to say, stoma nurses are expert in all sorts. They know alot about what you will need nutrition wise as well, and what to look out for.

I am hoping that the GI will have you on vitamin injections as well, for instance B12. With your particular issues I am guessing you have a hard time processing B12.

And last but not least, I want you to think of yourself and being comfortable:
http://www.crohnsforum.com/showthread.php?t=22958&highlight=What+to+do+before+surgery+for+the+ladies
 
Just jumping in here Anna, yes stoma position is so important. Mine seemed too close to my belly button and the first bags I used went half way across my belly button!! It wasn't comfortable and it drove me mad.
Good luck with the surgery xxx
 
Hello Anna

Sorry to hear you're having to stay in hospital. How are you passing the time, apart from reading the Forum?

I didn't realise you could have a choice of stoma shape. I should have taken a picture of my one so we could compare notes but I felt that was too gross! When I stood up it looked like the Spitting Image puppet of Mick Jagger was trying to do an "Alien". (I don't know if Spitting Image ever made it beyond these shores)

I did have a couple of problems with leakage around it and solved them using a product called Orabase, a sort of filler gel which effectively fills in any holes or irregularities, and an elasticated belt that held everything tight against my body.

Positioning of the stoma is important and I had an appointment with the stoma nurse, two days before surgery, where she spent quite a while working out the best place given the many wrinkles to contend with. She also took into account where my trouser waistband was. I left the appointment with a large, black, marker penned cross protected with a clear, waterproof dressing. There was no way the surgeon could miss that and he didn't.

Keep your spirits up and keep posting. Regards, Nigel
 
Hi I have no experience of a Stoma at all but wanted to send my support to all you guys.

Nigel you made me giggle with the spitting image puppet of Jagger thing.

I'm showing my age with that show though. I miss it.
 
Location
Australia
Oh dear Anna. Another month in hospital.
Do you need anything to keep you occupied?
If I lived up north I'd pop in for a visit and bring you some books and mags.
Or an iPad.

See if the Stoma nurse can try your rig on before they set the spot.
My wing sits just over my belly button, and it lifts where water gets underneath.
As a result - I've had a permanent rash since January.
It's more of an annoyance - but were I to get another Stoma - I'd have it moved over about an inch.
Hope you're not going too stir crazy.
Do you read online much? There's a great website called longform - has great longform magazine articles - it has kept me sane at times.
 
Careful placement, and the surgeon allowing plenty of slack in the small intestine behind the stoma, should help to prevent retraction of it. But sometimes the intestine does its own thing (as you know, it moves around all the time and is not nice and neat like the diagrams show) and ends up putting tension on the bit that forms the stoma, which pulls it down.

If it is a bad retraction that can't be helped by a convex faceplate on your bag and a belt to keep it close to the skin, you should go back to the surgeon (via your GI) and have it cut and resewn. This is a very simple operation and can be done as an outpatient.

But I hope things go well this time and you don't have any of these sorts of problems. :hug:
 

annawato

Moderator
Staff member
@terriernut thanks for the advice - not sure how they will position the new one since my tummys so scarred now but like you say i'll have time with the stoma nurses to work out a good posi and being a bigger hospital they should have more experience.
@kaz and samboi, I can't believe they'd put it across your bellybutton, it must drive you mad. I'm hoping they can find some nice smooth skin - that doesn't change shape when I lose the steroid bloat. A girl can dream.
@nigel, I don't think there is too gross on this site - we've all seen/had the worst already, now we just get to laugh about it.
As for filling in time, I have my computer, iPad, tv, books, i chat to the nurses, the cleaners, caterers and wards men . In fact its amazing how busy I keep in the 20 hours a day i'm normally awake (cos of hydrocortisone) would probably be better if i slept more to pass the time but just not possible yet.I'm dreading the new hospital cos I wont know any of the staff and they wont know me and my peculiarities (high levels of painkillers) but hopefully they will be nice and not too strict and mean - you all know the type of nurse i mean.
Anyway, thankyou all for your thoughts and suggestions, its much appreciated.
ps. dodged a bullet today - the doctor wanted to feed me nasogastrically - I cant even stand oxygen - but i convinced him the tpn was doing the trick for now, has anyone else had to be fed nasogastrically and is it better than tpn?
 
Nasogastrically! Not good. You did well to avoid that. I spent a whole weekend with one of those tubes in because the "weekend" doctors didn't want to make the decision to remove it.

Sounds like you're well set up for your stay. You ought to post a "10 things you definitely need to take into Hospital with you" list. I'm sure it would be helpful to others who are about to go in. Top of my list would be a pair of headphones to drown out the assorted unpleasant sounds coming from the other beds (unless you have the luxury of a private room!)

I wouldn't worry too much about moving to another hospital. I'm sure it won't take you long to educate the nurses etc. on how you like things done (even the mean ones)
 
Headphones are a good Idea. When I was last in hospital the elderly lady in the next bed woke up in the night & asked me who was at the door, then she said it could have been a digestive biscuit knocking :shifty:.
Not wanting to set her off I just said I don't think it was. Then she said It could have been cake then.
I had not eaten for days & I was quite hungry. I think you can guess what my dreams were about that night :rof:.

My kindle would also be in my top 10.
 

annawato

Moderator
Staff member
thanks highlandsrock, don't they always do new things right on the weekend so your stuck with it til monday whether its working or not! Seems like hospitals are the same the world over! And posting a hospital list is a brilliant idea - perhaps even a thread for newbies who haven't yet enjoyed the joys of hospital.
 

annawato

Moderator
Staff member
@kip, the woman next door to me is constantly calling out hello and help. Well we think shes a woman, she sounds like a man, or a seal. Very frustrating! I do have my own room but there are no doors on them and she calls out all night - I'm sure you have ALL experienced it. On the one hand you feel terribly sad for these poor demented people who are probably very confused and scared and frustrated yet on the other you just feel like getting a pillow and ending both theirs and your misery. Well maybe not that drastic................
 
A new thread is a very good idea.

When I had my nose tube (with its attached, delightfully named "bile bag") my sister started calling me Elephant Man which didn't go down too well. Once I'd been given the go ahead for it to go I made sure I tracked down the actual nurse who had inserted it and got her to remove it. I felt it was right that the one who inflicted the pain should take it away.

regards, Nigel
 

annawato

Moderator
Staff member
absolutely, what an archaic way to be fed. give me tpn anyday. I'm glad you were only stuck with it for a couple of days but 2 day too much.
 
I agree with finding a good position for the stoma. Mine was put so close to my incision that I have to cut the baseplate on one side to get it right so it does adhere to my incision site. I also have to cut the top of the baseplate so that it doesn't hit my surgically placed mucus fistula. They put everything very close on me. Mine also reatracts and I don't have a "spout" which has caused some minor skin burns around the stoma, but the stoma powder and cavilon wipes have helped that a bit. I'm not sure what kind of system you used last time, but I've only tried the Hollister New Image two-piece system and so far I really like it. I have so samples to try in Coloplast and Convatec, but with how small the area is I had to work with, some of those flanges they gave me are far too large to even use (I'd have to hack away at it and make it tiny).

Also if output was a problem for you last time, see if they can work with you to get a good diet and med regimen going. I was putting out a lot in the hospital and they finally put me on Imodium 3 times daily and 2 doses of fiber three times daily. I find if I take the Imodium with a little liquid (cup of coffee or a cup of juice) with my fiber before I eat, it really slows me down a lot. I also try to have a banana a day and oatmeal if I can fit it in. This has all really helped me slow down.

The only other thing I can think to remind you is when you get out of the hospital make sure you are drinking plenty of liquids, but make sure it isn't just water cause you will certainly thin out your vitamins and minerals if you aren't adding in some sort of electrolyte drink in there. I've found that I like the Vitamin Water Squeezed Lemonade Zero. It has no calories (at first I was taking in a TON of calories in just drinks) and its sweetened with stevia instead of other bad stuff. Plus it has added B vitamins, a little potassium, and other electrolytes in it.
 
Headphones are a good Idea. When I was last in hospital the elderly lady in the next bed woke up in the night & asked me who was at the door, then she said it could have been a digestive biscuit knocking :shifty:.
Not wanting to set her off I just said I don't think it was. Then she said It could have been cake then.
I had not eaten for days & I was quite hungry. I think you can guess what my dreams were about that night :rof:.

My kindle would also be in my top 10.
Haha it reminded me when i was in, i had a woman that every time she exhaled she sounded like a cat being strangled- very bizarre!
Another woman would shout out "John"! and "i cant see " "i cant hear" every 2 minutes- anyway John turned out to be her son, as soon as he arrived she would act completely fine, no shouting, then reverted back as soon as he left!
In the end everytime she shouted out John! me and my dad would add Lennon! , Major!, Cusack!, Travolta! and so on. It sounds mean but it actually stopped me from cracking up!

Another woman was in for dementia from drink- very sad really but she would keep me entertained by bursting into my room at 4am, pointing to my TPN pump and telling me
" Dont forget to get up for school and THAT is being turned off in the morning cos its costing me money"!
She used to come in my room looking for football boots, asking me for a lighter, and opening my curtains telling me im late getting up!
I can laugh now........:rolleyes:
 

Terriernut

Moderator
I was 'in' for 34 days in 2010. One woman was in BOTH wards while I was in and she was horrible! Beating the nurses up (yes really) and screaming all night. Vile language, etc. I saved soap up and threw it at her when she'd wake me up at night! I literally almost throttled her! All 5 foot of me.
 

annawato

Moderator
Staff member
oh kip, thats so cruel, talking about food when you're not allowed to eat! Amazing how many visitors tell me what they had or are having for dinner that night - LIKE I CARE! :)
Terriernut, I'd be throwing far more than soap I think. You must have died when you got her in the second ward too.
Madferrit, it always amazes me how normal some of these people are when their family are there then revert to soem psycho when the sun goes down. God help us, we'll probably all join them one day!
 

annawato

Moderator
Staff member
Katie sue thanks for the tips, sounds like your stoma is in a really awkward spot. I know when I had to cut my base plate once I had to make sure I had really smooth curved edges or it would cut in to the skin. don't know if this will help you.
Last time i was taking at least 10 immodium a day to control output, plus I found apple and banana etc helped but the main thing like you was just keeping up with appropriate fluids
 

annawato

Moderator
Staff member
Well, I'm finally at RPA and surgery is scheduled for next Friday. So far the nurses have all been very nice, the food is heaps better - well the little I can eat anyway and the doctors seem not too bad. Fortunately i'm in a private room cos i've picked up hospital acquired infections along the way, but it does get a little lonely.. I can hear them chatting and laughing in the room next door and it sounds much more fun than here - but I think the benefits of a private room outweigh it. Hope you are all doing well at the moment - although my thoughts are with Samboi - hope you are feeling better today.
 
Location
Australia
Thanks Anna. I'm feeling heaps better today.
Thanks for thinking of me.
I've been laughing at everybody's funny hospital experiences.
People do go quite peculiar on the wards!!

I'm excited for you that the surgery is now so close.
I don't know how you've kept your sanity!
Are you a little nervous?
 

annawato

Moderator
Staff member
I cant say that I always keep my sanity - but mainly by just sticking my head in the sand like an ostrich and not thinking about what is going to happen or what is happening! So at the moment I'm not nervous but I can guarantee there will be tears etc before the week is out. I guess its the old just living in the moment and not thinking about the future.
Haha, yes people do get quite funny on the wards - we had two dementia patients at Mona Vale who each thought the other was their husband/wife and so kept calling out to each other- "is that you dear?" "yes it is" where have you been?" etc etc Just like a comedy where people are talking at crossed purposes!
I'm glad you are feeling a lot better now. Did they find out what the problem was? And are you on the mend now? Will it delay reversal? or should I go and look at your thread where you have probably answered all these questions, haha.
 
Location
Australia
OMG - that made me laugh.
No wonder they set comedy shows in hospitals!
I'm on the mend - no idea what caused it - reversal delayed until next year.

How are you going to manage your week?
I reckon I'd be a mess!!
Will you still be eligible for any drug trials after your op?
 

annawato

Moderator
Staff member
Bugger about the reversal, but better to be sure everything is better before its done. I think my problems were partially caused by getting reversed too early - that and there being no drugs that work of course.
Not sure about drug trials after, I'm seeing yet another new gastro here next week - He is meant to be very good but old school so I'll hear what he has to say and go from there. Maybe transfer back to the doctor at Concord who is running the trials and see what he has to say. There are a few biologics in the pipeline but i've been told that the if the others haven't worked then none are likely to, but that doesn't really make sense or why would drug companies be investing in new ones.The other alternative is to keep the stoma permanently even though i'm not 100% well with them at least i'm not continuously getting abscesses and living in hospital. I'll let you know about anything i learn though, there may be something suitable for you. I think biologics are more effective for fistulising crohn's so you may be in luck.
As for managing this week, probably with whatever drugs they will let me have. haha. Need to have stoma sited, new ct scans etc etc and they're still fattening me up with tpn. Its sure going to be fun losing all the weight afterwards!
 
Location
Australia
Maybe keep your Stoma until a new drug comes along?
I don't get fistulae - mine is perianal. I've become obsessed with preserving my little a-hole.
I don't want it permanently wrecked by a flare.

Maybe one of the new biologics might do the trick for you?
I guess they are always refining them - fiddling with the formula.

How much does it suck that you get fattened up with TPN - you don't even get a decent meal! Not fair!!
 

Terriernut

Moderator
You two are sounding like ward mates now! :ylol2:

My thoughts are with you both. Annawato, keep up the good spirit, you are lovely and we are all rooting for you. :hug:
 

annawato

Moderator
Staff member
yes if you're going to get fat you might as well enjoy the eating that goes with it!
And sorry samboi, I thought you had perianl fistulas but am probably mixing you up with someone else on the site or rather your crohns type, not you, if you know what I mean.
 
I hate Ng tubes as they irritate my throat and make me gag - I had 3 during my last admission and each time I begged and begged for removal ASAP

But I'm the worst patient in the world ever!
 

annawato

Moderator
Staff member
oh you poor thing! I haven't had one yet but dread the day i have to. i'd imagine they are very uncomfortable. Far better to be fed thru a vein I think!
 

annawato

Moderator
Staff member
Whinge whinge whinge

Well I'm 11 days post op and I have to say the first 8 were absolutely horrendous. They never gave me adequate pain relief. The nurses took up to half an hour to answer the call button, and quite a few of them were quite indifferent, coming in with a 'WHAT" when I buzzed as if I was a nuisance, making me get up and into a wheelchair without even offering an arm to help cos I had to go and have an xray(two days post op) and continually insinuating I wasn't progressing as fast as I should. The wind pain was horrendous. I also developed high fevers and they couldn't find the source. Next they transferred me to another ward which was great - the nurses were lovely and very professional - the other ward was very slack with infection control ie changing dressings and tpn and hooking up ivs in an unsterile way. I complained to the educator about it and she told all the other nurses that i had complained so their attitude just got worse. Anyway thank god for the second ward cos i was able to regain my sanity and good cheer. Then tonight i was transferred to another ward (so third in 2 weeks). It joins onto the first so I'm really upset that the care will be bad again and the nurses may not be nice again. My moods are really influenced by the attitude of my nurses. To make matters worse my laparotomy wound has started to break down - oozing pus and today haemorrhaging blood for an hour. It will probably take about 8 weeks of packing to heal and there is a 6 week waiting list for the community nurses in our area so I'm going to have to learn to do it myself. Fun fun fun. Finally my output is 3 plus litres a day so have to stay longer until its sorted. Oh mi oh my, the skys falling in! Sorry for so long but had to get all my grumbles off my chest, I'm just hoping tomorrow is a better day and they dont throw another curve ball at me. i've had enough and really dont think I could go thru all this again, not even for a reversal. but maybe like childbirth I'll forget the pain and get it done one day.:yfrown::cry
Ohh and the stoma - so much for pre asking for a good spout, it hasn't so I'm wearing a convex plate, plus one piece of skin wasn't stitched down properly so sticks up into the bag - yes it is slowly burning away so probably wont be a problem in a month or so........
 
Location
Australia
Oh wow. I wondered how it went. It's sounding pretty ordinary.
You're really in the wars huh.
And no proper pain relief - that's brutal!

Take your mind off it?
Seen any good shows on the telly?
 

Terriernut

Moderator
:eek: This is not on! Please tell me they have you on antibiotics? Please tell me the Dr's are keeping a very good eye on you?

What sort of pain relief were you on after the op? I know it was lapro, but that doesnt make it not painful! In fact the gas pains are worse after lapro. The only remedy is pain relief and walk, walk, walk.

Lets hope that you dont have the same nurses on this ward. Also, are you on a surgical ward?

:ghug:
 
Oh Anna, I'm so sorry to hear that things aren't going well for you. The attitude of the nurses makes a lot of difference, I think. At least they are keeping you in until things improve and hopefully they won't let you out until both your wound and your output are significantly better.

Don't be too disheartened about your stoma. Mine is retracted and I have to use a bag with a deep convexity plate, but have very little trouble with it. It's a matter of finding a system that works for you - and we will help you with that. :hug:
 

annawato

Moderator
Staff member
Samboi;544659 Take your mind off it? Seen any good shows on the telly?[/QUOTE said:
haha, yeah theres a lot to watch on the free to air........not! Been watching dvds and shows from internet but couldn't do anything the first 7 days. i usually bounce back by day 3 or 4 but not this time.

Thanks Susan you are right about finding the correct appliance helping and I think i have found it- funnily enough the same one I used last time, I only realised when I looked up an old order form on my computer. Must be a goody.

Terriernut, it wasn't lapro,I prob used the wrong terminology back there, it was the full cut pubic to well above waist about 20 cm. They had me on ketamine plus a morphine pca but i have a very high tolerance for morphine so it did nothing. When I've had this done at our local hospital they just use ketamine and I'm up and about very quickly so havent had bad bloating and gas before cos i was able to walk. They just had me on too low a dose of ketamine - which is silly cos I only needed it for 6 days when I asked them to take it down. it was highly unlikely that i would become addicted in that time
I'm finally actually on the colorectal ward so probably where i should have been from the beginning, its surgical and medical, and yes. I am on antibiotics (tazocin) Theyre trying to grow the bugs from the wound to see if the ab needs to be changed.
I agree, Gas pains are the worst and no painkillers help unless they sedate you -getting up and walking is the answer. You just need appropriate pain meds for the wound pain so you can be active.
 
Location
Australia
Oh Anna you poor thing. At least you're on the right ward now.
I was in the general surgical ward last Dec after my first op.
It was dreadful. They had no bath, no idea about IBD and were kinda mean.
It's nice in the CRS ward - where they do seem to understand.
I hope things start getting better now.
 

annawato

Moderator
Staff member
Good news, the nurses here are lovely and the discharge nurse was able to convince the community nurses that i need them so they will be coming when I eventually get home. Bad news is my white cell count has gone thru the roof and I have a temp so doesn't look like i will be home on friday but whats another week on the 11 so far. At least the nurses are nice and my daughter brought a new pile of dvds. Life could be worse........
Samboi are you all over your setback?
And how is everyone else going?
 
Location
Australia
Anna - I am so well and truly over my setback!!
Thanks for asking. Back on track for reversal in January.
And it seems I have a new lady friend.
Life is pretty darn good at my end!

I'm sorry they won't let you out on Fri.
Damned infections!
 

annawato

Moderator
Staff member
Glad to hear your news Samboi, particularly about the new lady friend.
And Monday will be here soon enough for me - just gives me more dvd watching time. haha
 

Terriernut

Moderator
I like the news about the nurses best! I dont like the news about infection. Although you are in good company here, quite a few of us had them post op. It is NOT an unusual complication unfortunately.

(psst...I think Samboi is busy :ycool:)
 
Darn it, Anna!!! Glad you have DVDs to keep you company while you wait this out.

And Samboi--wooHOO!! on the new lady friend!
 

annawato

Moderator
Staff member
Full metal jacket? I think thats what its called. was fantastic. Set in the vietnam war and follows some marines thru training then fighting in vietnam. Great movie.
Also watched season one and two of Suits which is set in a law firm. hmm what else - oh yes, Amelie which is a french film, not what i usually watch but i enjoyed it.
Mostly old weeklies so I can watch them before they are due back.
Anyone got suggestions of good dvds? Whats your favourite?
 

annawato

Moderator
Staff member
Not only did johnny depp look fat it was the most unwatchable movie ever. Well that i've tried recently anyway.
Your other favourites, I'll see if i can get my friendly dvd suppliers to get them for me. Thanks all.
 

annawato

Moderator
Staff member
Had a ct scan yesterday to see the extent of my wound infection and whether there is anything else going on cos of my high white cell count and huge stoma output. Anyway it showed an abscess (or collection as the doctors call it) under my liver about 5 cm around where they cut my large bowel away from the back of my abdominal cavity. #$%^! Isn't that what I came here to get rid of? They say they are going to leave it because its not painful and I only have mild temps but I think it will just flare up once the antibiotics are stopped. Then I'll be back where I started with recurrent abscess. So thats my vent for today. I hope you're all well, well well for a crohnie anyway.
 
So sorry to hear that, Anna. Did they say that the "collection" was causing the white cell count and the unusually high stoma output? Unfortunately there can be secondary problems as a result of surgery and sometimes they have to go in again to fix these, but try not to worry about what might happen (easier said than done, I know!).
 

annawato

Moderator
Staff member
Thanks Susan, they said the high white cell count could be just from the infected wound - i dont think they really know. They also said the collection could be causing the high output but I had a high output the last time so dont think this is the case. The though of going thru surgery again fills me with dread so for now i'll concentrate on the fact that all will be fine and I can go home next week. Am I ignoring reality again? haha At least it keeps me rleatively sane.
 
No, I don't think that you are ignoring reality. They don't know and you don't know what is going to happen, so the best approach, as far as I'm concerned, is to keep positive.

I live in a bushfire prone area and some people seem to spend their whole lives worrying about bushfires. My approach is, worry about the things that you can do something about, do that something to the best of your ability, then stop worrying. In other words, be prepared but don't let it ruin your life. It might never happen!

End of sermon... :rolleyes:
 

annawato

Moderator
Staff member
haha. I dont consider that a sermon, just a reminder of a sensible approach to life.
My grandparents had a holiday house at Aries Inlet near you, we spent just about every holiday there growing up. It was on the road leading up to the lighthouse and burnt down in the fires there in I think the mid 80's? So I can understand you needing to be prepared for bushfires, I mean who would expect a beachside house to burn down, I dont even remember there being much more than lowlying scrub and the odd tea tree although it had been a number of years since I last saw it. Anyway its a beautiful part of the world holding many of the best memories from childhood for me.
 

Terriernut

Moderator
They can put a drain in there to collect that cant they? Yes, I KNOW it's another proceedure. What a nasty surprise.

But, lets hope the antibiotics DO clear it up. Then...you can get on with things!
:kiss:
 

annawato

Moderator
Staff member
Apparently its too close to my liver and gall bladder to drain safely - at least while its not causing pain. They have however attached a vacuum to my wound. its been stuffed full of foam then an airproof dressing was applied with a whole in it and a vacuum attached by a long tube. Not sure why - I thought it was to suck out excess moisture but now I think its to keep the wound from opening up more. Or maybe its both. I'll have to ask someone but both my nurses today while absolutely lovely have had strong accents making it difficult to understand a long explanation. Thank heavens for google. One of them said maybe you'll get home for xmas - I was so stunned i didn't say anything then thought surely I misheard that! I think the doctors would tell me if I was going to be here another 2 weeks.
 

annawato

Moderator
Staff member
ok, i googled vaccum therapy. To those interested it aids healing by removing excess exudate so that the wound is moist not wet, it reduces bacterial count, it increases blood flow to the area so promoting healing and also increase granulation of the wound. Its also called negative pressure wound therapy and basically speeds up healing in difficult wounds. Sounds wondrous to me - anything that get me out of here more quickly is welcome. :)
 

Terriernut

Moderator
There's been a few on here who have had that. I must say, I think you are certainly on the right ward now, they aren't messing around!

And I'm sure they didnt mean another two weeks. Think positive...!

I hope you got your xmas shopping done? If not, internet shopping! You go girl!
 

annawato

Moderator
Staff member
They have made a mistake. HOME TOMORRROW! Yippee. I have to take the machine with me but a smaller one that fits in a bag you can carry around. So thats ok, i just can't wait. Once you know you're going you just want to be gone. i've taken off the hospital hat and put on the home one.
As for xmas shopping = the kids are organised, my husband will get them, and my daughter will pick up whatever else we need. And we have a very simple lunch of chicken ham and salads - their is only 5 or 6 of us this year so easy.
 

annawato

Moderator
Staff member
Thankyou to all of you for your support during this horrendous experience. You've all been fantastic, keeping me in good cheer whilst still allowing me to vent. Lets hope this is the end of it for a good long while. They assure me the collection near my liver will resolve itself and whilst they are talking about a reversal in the near future i dont think I'll be going anywhere near a hospital for awhile. So long as the stoma isn't causing too many problems I'm keeping it for awhile. After all we still haven't found a medication to keep the crohns at bay. Which brings me to the question , how does a stoma prevent crohn's? whats to stop it returning in the small bowel above the stoma? I understand with large bowel disease or anal nothing is flowing thru the bowel so it is rested but with small bowel disease its still being used and the stoma just rests the bit cut out. I am perplexed.
 
Sorry Anna, the stoma doesn't do anything to prevent the Crohn's returning. It usually gives you better quality of life and, in some cases, allows the bowel, south of the stoma, a chance to rest and heal.

It's good to hear that you are going home and that they think that the "collection" will resolve itself. :thumright: You can sit around at Christmas and let other people wait on you.;)
 

Terriernut

Moderator
I'm afraid it doesnt stop crohn's. Quite a few will have to be on meds after stoma surgery.

Some however have no further issues....I hope you are one of them!
 

annawato

Moderator
Staff member
Yes I'm looking forward to a very lazy xmas being waited on hand and foot. My daughter is even doing all the orient shopping. it certainly won't be a bah humbug chrissy for me.
 

annawato

Moderator
Staff member
Well I've been home a week and its been absolutely lovely. Family, friends and my dog. Not to mention being waited on hand and foot, when someone is home which is not often as we have a couple of shops which are very busy with xmas shopping. But thats ok cos I'm very used to being alone after such a long time in a private room in hospital. Private rooms are good and bad. I was very thankful for it post op when I felt terrible but they are also very isolating. I guess it depends who you share with but it can be fun meeting and sharing with other people.
Anyway I hope you are all well and happy and not too frazzled by christmas chores. Have a fantastic Christmas everyone and heres to 2013. It really has to be better than 2012!!!!
:heart: Anna
 

Terriernut

Moderator
Anna, this waiting on hand and foot thing is pretty cool eh? Enjoy it while it lasts!

I was secretly happier to see the dogs when I got home, they kept me company during the day when I was alone. Thank goodness for our pets.

Keep on healing and getting well girl!! :ghug:
 

annawato

Moderator
Staff member
Terriernut I agree with you about the dogs. I think I missed my pooch more than anyone, but then of course he didn't get to visit me. And yes, he is enormous company during the day. If I could just train him to get me a cuppa he'd be perfect! :)
 
Once, when I was in hospital for a long time and was in a room at the end of a corridor, overlooking a lane, my sister would bring my dog walking down the lane so that I could see him. :)

When I was working, what I wanted to train my dog to do was to take the washing off the line if it rained (and fold it neatly, of course).
 
Location
Australia
I miss my cats when I'm in hospital.
They stay with my parents - so I at least get regular updates about their antics.
I miss their cuddles and having them in the bed nice and close.
Last hospital stay - I was near the maternity ward. I was delirious with a fever and thought the distant crying babies were my cats meowing at my door. I had no idea where I was - it was very confusing! Made me miss them more though. Little scamps.
 

annawato

Moderator
Staff member
At our local hospital there is an outside veranda which I am able to wheel my iv out to. My daughter brought my dog to visit there once but it actually made it harder to say goodbye to him after. I think he was fine - more interested in all the possum smells than me so it was a bit disappointing though reassuring that he wasn't missing me too much.
 
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