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10-10-2012, 10:19 AM   #1
annawato
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Worst fears realised - again

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.
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you name it, i've tried and failed it! currently on- waiting to see whats new and reducing pred
temp. ileostomy reversed feb 2011, new ileostomy, nov 2012
4 resections plus removal of adhesions etc, recurrent intestinal abscesses
lyme disease, depression, sacroileitis, chronic pain and......Crohn's..........
10-10-2012, 10:31 AM   #2
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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?
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10-10-2012, 10:42 AM   #3
2thFairy
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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.
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"The colon seems an unlikely candidate for dramatic effect, but now and then it serves that purpose well." The Associated Press Guide to Punctuation
10-10-2012, 10:43 AM   #4
annawato
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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!
10-10-2012, 10:46 AM   #5
annawato
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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.
10-10-2012, 10:49 AM   #6
2thFairy
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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.
10-10-2012, 11:33 AM   #7
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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!
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DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
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10-10-2012, 11:46 AM   #8
annawato
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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.
10-10-2012, 11:51 AM   #9
2thFairy
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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!
10-10-2012, 11:58 AM   #10
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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.
10-10-2012, 12:06 PM   #11
annawato
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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!
10-10-2012, 12:10 PM   #12
annawato
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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.
10-10-2012, 12:16 PM   #13
2thFairy
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Mine is a temp and a loop ileostomy, and I've got a good spout. Demand it!!
10-10-2012, 12:17 PM   #14
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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.
10-10-2012, 02:39 PM   #15
annawato
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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
10-10-2012, 02:46 PM   #16
2thFairy
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haha, you could use the mens room and get a few VERY weird looks!
My husband already asked if I wanted him to install a urinal in the bathroom at home so I could empty standing up. Hahahaha!
10-10-2012, 03:04 PM   #17
annawato
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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.
10-10-2012, 03:11 PM   #18
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No doubt! Hahahaha!!
10-10-2012, 04:02 PM   #19
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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.
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10-10-2012, 06:18 PM   #20
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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.
10-23-2012, 09:53 AM   #21
annawato
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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!
10-23-2012, 09:57 AM   #22
annawato
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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.
10-23-2012, 11:38 AM   #23
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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/showthrea...for+the+ladies
10-23-2012, 12:40 PM   #24
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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
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10-23-2012, 02:33 PM   #25
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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
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10-23-2012, 05:24 PM   #26
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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.
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10-23-2012, 06:26 PM   #27
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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.
10-23-2012, 09:24 PM   #28
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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.
10-25-2012, 09:39 AM   #29
annawato
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@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?
10-26-2012, 04:59 AM   #30
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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)
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