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rreseating the stoma draintube made it worse

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Posted 12/15/2012 9:48 AM (GMT 0)
After going thru so much to be seen i finally was. Not by the surgeon but by one of the fellows who was in on my case and a resident. They did what i expected and the resident with a small pinky did a stoma exam. Then thye put the tube back in that they took out to do the exam. Then i had to change the bag and wafer there as the resident got poo on the wafer. She didn't drape the area like the surgeon does and i forgot to remind her. But one would think there would be a protocol.

Anyway the stoma was tight, no surprise. It really hurt when she put the tube back in. Then while changing my appliance, the tube totally fell out. The resident and the fellow came back in. I had taken my paid social worker rn who went and got them. I asked them to show me how to put the tube back in and they did. So i finally got it together anchored the tube by the string sunder the bag that clicks on and went back to the hotel. Had my usual liquid dinner. Then i went to bed and layed on that side with the stoma. This was how i had been comfortable. Woke up 3 hours later and was in pain. No gas or even liquid was passing. So i rolled on my back and gas and liquid finally started passing out of the tube and now i am on my opposite side with the drain tube propped up with a wadded up house coat under it.

I said why isn't the stoma just working and the fellow said scar tissue but that should soften in 3 to 6 months. Then they are going to do a test where i drink something and they see if there are kinks further up. It listed barium that i am allergic to but the fellow said that it was gastrograffin. To drink? He said it would give me bad diarrhea thru the tube and stoma. I just have to get to sleep .y usual sleep med did not give me much sleep as it normally does due to the pain from. O gas or liquid passing as i was lying on the stoma side. So i guess it is good i woke up. I am so tired and hungry and they said if no kinks show in the scan on monday then i need to start eating slowly. I said i stopped eating as nothing would pass thru the stoma. They said they could show me how to flush the small bowel thru the tube if that happens which it will. So tired just want to sleep. Part of me wants to just give up but i can't. Seems like everything i do makes this worse. Idkown what to do! RJ
Posted 12/15/2012 8:05 PM (GMT 0)
Good to hear from you, but sorry you're still having a tough time. This tube sounds tricky to get in and keep it in. It can't be a long term solution surely?

Anyway.. I had a CT with Gastrograffin to drink. Its clear, you have to drink quite a lot of it and does give you terrible diahorrea.

Hope you can get some sleep and get through the test. When are you having that?

Hang in there and stay strong. Thinking of you. Sx
Posted 12/15/2012 8:36 PM (GMT 0)
Test is monday. The tube can be permanent if the scarring bejind the stoma does not soften. How will i stay hydrated with all that diarrhea? This is not a CT it is an upper gi with small bowel follow thru. The dirs say barium but the fellow says Gastrograffin.

Long term i could not do the tube business. I also cannot even imagine flushing water in a tube thru stoma to bust uip up thick poo. This is nothign i could do as a way of life.

How are you doing sarah? RJ
Posted 12/15/2012 8:48 PM (GMT 0)
You will just have to try and drink plenty of rehydration solution afterwards. Although you may not have to drink too much of it.. and when it's through the diahorrea stops. We have something here called Dioralyte.. it's like a powder you mix with water when you have sickness bug. I drank that after my test and I was actually fine. What is the US equivalent? that should help. I don't think you'll get that dehydrated as it doesn't continue for long.

I think Barium would show more though. Don't be scared of it getting stuck. After all, if it does, you're in the right place and then they can see what you're talking about. Gastrograffin will shoot straight through and unless you have a very tight kink it won't show much.

The tube is NOT a long term solution. You need to find an end to all of this and I hope they can.

Funnily enough.. I'm actually doing ok and a bit better thanks. I have to eat tiny portions and be very very careful with what I eat, but I do wonder if things are settling and maybe adhesions are softening or inflammation is reducing. It's far from 'normal' or perfect, but tolerable with a very limited/liquid/soft diet. I wonder if this is as good as it's going to get and I'm trying to get my head around that. I have some tests booked in for 4th Jan, but doubt they'll find anything. I then have to make a decision about reversal or not.

Anyway.. hang in there. Try and relax a little if you can over the weekend and good luck with the test on Monday. Thinking of you S x
Posted 12/15/2012 9:44 PM (GMT 0)
Sarah

Thx for info on the gastrograffin and the barium. So better to do with barium. I bet they will do the gastrograffin then say "see you're fine!".

If they use the barium i see it will show more. But if it gets stuck they won't do anything about it as that seems to be their motto unless they get preesure from an outside source suchj as an er doc, a nutritionist, or a soc worker outside the system.

Glad your stoma is coming to life a bit at least. How long out from surgery are you? They said MAYBE in 3 to 6 months my stoma might too but the long term drain tube and flushing clotted food if i ate, no way in h---. Rj
Posted 12/15/2012 10:16 PM (GMT 0)
Rosemary I'm sorry you are still having such a rough time ,like Sarah said maybe it will do good if they do the barium and hopefully see what is happening with you I know it's really tiring but you just gotta hang in there for now it won't always be like this just have to get through this time , nothing lasts forever and a answer will be found one way or another .
So glad you are doing better Sarah fingers crossed it keeps on going forwards for you and you can make a final desicion on reversal
Thinking of you lucky
Posted 12/15/2012 10:37 PM (GMT 0)
Thx lucky. I know it was theunconsented colectomy that added so much scar tissue to the whole mess. That could have screwed up the working of the ileostomy.hope you are ok lucky. RJ
Posted 12/16/2012 8:56 PM (GMT 0)
Maybe rosemary but your colon is gone now and there is nothing you can do about it main thing is to get what is happening with you now sorted once and for all .
I'm not doing so good had some really bad days was in lot of pain Thursday and told to go to emergency , my surgeon was on call but I would have been attended by the registrars and not seen him unless I needed emergency surgery ? They talked of putting in a drain tube but after your experiences with yours and docs who aren't sure what to do I refused to go , I knew it was trapped gas causing the pain but hoped it would eventually pass through which it did but caused a lot of severe pain for most the day and night ...... Boy life is not boring with a dodgy stoma !
See my gastro Thursday they are talking of putting a peg in again but surgeon doesn't think this will work ? Drinking only liquid again and resource but weight is still falling off me and I'm very tired hope I get an answer soon as I really would like bit more energy sick of being sick ...... Hope your test goes well Monday lucky
Posted 12/16/2012 10:59 PM (GMT 0)
Lucky,

The tube pain is not as bad as needing the tube and not having it. A friend offered to take me to see xmas lights tonight i mau go. If they use the barium tomorrow i may geyt blocked and if they use the gastrograffin i will have diarrhea and god only knows what will happen. In a ot of tube pain am going to try lying down. So pretty out today. This is a horror. I could be out here on vacation going way back. But now is now. Go for the tube if needed. RJ
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