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09-09-2014, 07:22 AM   #1
UnXmas
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Small intestine perforated, nearly died

Exactly as the title says. I spent five weeks in hospital in July/August, gaining weight. They made me eat so much, and I carried on trying to after getting home, but after a couple of weeks, I was feeling awful - I posted about how much trouble I was having eating. A loop of small bowel was getting progressively blocked, and then it perforated. I'm so underweight, they told me they thought I wouldn't survive the surgery, but it turned out they could find and fix the perforation much easier than they'd thought. I really like the surgeon.

I'm recovering really fast now, out of intensive care. I'm still on TPN but eating as well (though not wanting to ). And now I have stoma number three.

It was all very scary. Withdrawing from Oxycodone was horrible, horrible too. i get addicted very quickly. Now I just want the TPN gone before I get an infection.
09-09-2014, 08:31 AM   #2
poopaholic
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I hope this damn disease gives you a break soon. You have been through enough already. I really don't have any advice only support . Anyway I hope this is the final stretch of the road to recovery.
09-09-2014, 08:44 AM   #3
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Man you've gotten a bum hand, but you are one tough fucker. If you got through the first two, you can get through a third.

I'll put you in my prayers tonight unxmas.
09-09-2014, 08:55 AM   #4
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Just when you think you can't take anymore this damned disease throws in something else.I'm amazed where your strength and resilience comes from.Get better soon.
09-09-2014, 05:09 PM   #5
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Oh my goodness, UnXmas, how horrible! I'm glad you are recovering but it's too bad that you're in the hospital yet again. I hope you can heal as fully as possible and don't have to go back to the hospital or have any further complications for a long time!
09-10-2014, 02:15 PM   #6
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I'm so sorry to hear this, you deserve a break already! I'm glad you seem to be recovering well. I hope you get out of hospital quickly and can stay out of there for a long time this time.

Sending lots of hugs and warm thoughts.
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09-11-2014, 05:26 AM   #7
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Thank you all so much. last night was terrible. I spiked a fever over 40, constantly overflowing stoma bag, and the scariest thing - became paralysed down my right hand side and couldn't speak. There was a herd of doctors talking to me, and I understood them but I couldn't get a word out, and was just blinking at them like a goldfish. I had my reflexes tested more times than I can count. my speech and most movement in my right leg and foot came back after about an hour, but my right arm didn't.

They did a CT scan, which was normal, so they're confident I didn't have a stroke. When I awoke this morning, I can movemy arm but only in random jerks, (i'm typing one-handed). They called in a neurologist first thing this morning, and he was very optimistic about the fact it seems to be reversing so quikly. He thought it was a physiological stress reaction to having the TPN central line removed, as it happened right after (or is that fancy doctor talk to cover up that he doesn't know?), and is sending a physiotherapist to see me today.

I feel much better now my fever broke though.
09-11-2014, 10:46 AM   #8
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My TPN line was infected with the candida fungus;removing the line triggered the reaction.
09-11-2014, 10:55 AM   #9
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I also saw the physiotherapist who also thinks the strength and movement should come back very soon and gave me exercises to do and said moving and using the limbs and hand and fingers as much as possible will help.

I tried typing with my right hand but could only fairly randomly hit the keyboard.

Anyway, no more TPN, ever. just having a dextrose IV now because my blood sugar kept dropping every time there was abreak in the TPN so now it's stopped I need to wean off the sugar rush.

They're treating the candida with anti-fungals.
09-11-2014, 06:48 PM   #10
poopaholic
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I don't know what to say other than I hope things turn around for you soon . With all your previous troubles this has to be very difficult to accept. If I was a religious person I would prey for you , but I am not so limited to hope . Sending loads of hope your way.
09-12-2014, 04:26 AM   #11
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Getting a bit of movement in my fingers. I can almost clench them, but can't move one at a time, only altogether, and I can straighten them a bit, but only with a huge effort, and I can't keep them open, they claw up again after a second.

They tested my eyes to check the infection hasnt damaged them, and my eyes were fine.

Temperature was up last night but ok now.

the anti-fungals are given by IV, so can't leave hospital until they're done.
09-12-2014, 04:48 AM   #12
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Wow...glad your eyes are o.k..Take what victories we can,right? Hopefully the anti-fungal will do what it is suppose to do and you can go home and heal.

You are the definition of tenacious.
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09-12-2014, 01:23 PM   #13
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So the doctors are putting together more of what has happened: there was a knot in my intestine (not quite sure how or when it got there, except that it wasn't there when I had my last surgery last Easter). waste was gradually building into a blockage in the knot. Went into hospital to gain weight in July/August, and carried on eating more after getting home. Eating more meant the blockage built up faster, really putting me off eating as felt so full and off food, but no pain or other obvious physical symptoms. Intestine totally blocked, first caused some minor pain for a day or so whenever my stoma was active, then my intestine perforated.

After surgery, was on TPN as very low weight and total bowel rest at first. Then could eat, but not much at first so kept on TPN due to weight. doctors suspect infection due to high white cell count and fevers, rule out urinary, chest, surgical site, internal abdominal, stool, etc. and suspect TPN line as it's known to have a high infection risk (sugar + contact with air + contact with blood). One doctor in particular was very sharp about this, and criticised the nutrition team for keeping me on it so long despite my weight, especially with the signs of infection, and overruled the gastro/nutrition consultant to have the line removed.

The TPN central line is removed. You lie flat down for an hour or so during after removal. When I sit up again, suddenly something triggers the candida infection to peak - my chest hurt and I coughed up some mucus. My fever gets out of control, and get out of control diarrhoea.

The sudden paralysis and loss of speech were a stress/shock reaction. My body couldn't cope with the fever.
09-12-2014, 01:30 PM   #14
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I just hope I'm over the worst of it now - I can't cope with any more complications. Literally just before the line was removed, I was telling a nurse how worried I was it was infected, and how much I wanted it gone, and she was reassuring me, telling me how fast I'd recovered and got out of intensive care...

I'm glad that such a major scary thing as this fever and reaction seems to be healing very fast. Just can't wait to know the infection's gone. They've already checked my eyes, skin, vagina, mouth/tongue/throat, etc. to make sure the infection's not spread, just a test on my heart to go I think.
09-12-2014, 01:36 PM   #15
valleysangel92
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You've certainly been through more than enough! I don't know what to say except I hope that's the last thing that goes wrong and you continue to recover quickly. I hope the meds work fast and you are able to get home soon and enjoy some hospital free time feeling as well as possible. Sending massive hugs and warm thoughts x
09-12-2014, 01:57 PM   #16
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Wow. I certainly hope you find some relief after all this!
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09-13-2014, 11:06 AM   #17
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Posted this on my other thread, but thought it might make more sense on this one:

I'm still tentatively hoping that now the blockage that I didn't know about is gone, eating will be easier, as my surgeon and stoma nurse said it will be. It's not been too bad lately, considering it's still early days post-op. I also used to stick to the "little and often" eating rule - continually eating little bits. But I've found sometimes I like eating more after a good few hours' stretch with nothing at all, maybe just some juice or something. It's less of a chore when I'm not continually doing it.

BUT I am very scared. The blockage deteriorated more quickly because I was eating so much more. I know it would have blocked completely eventually eating less, but...

Then I got a septic fungal infection from theTPN line that was feeding me.

My body just resists weight gain no matter what I do. I told my doctors food makes me sick, I told them that the more I ate the faster it would damage my digestive system and it did.

I was so worried the nutrition gastro would want a new TPN line put in, that when she definitely didn't I was too relieved to tell her what I'm afraid of - that she'll expect me to go back to eating the amounts that led to the blockage, tell me a target weight and that I can't go home til I meet it so I'm pressured to gain weight too quickly. I just want to stay in hospital until I've finished the treatment of the infection and got the strength and movement back in my paralysed side, and know that I'm eating enough to get my weight going gently in a general upward trend, then go home.
09-14-2014, 05:38 AM   #18
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If you feel you can't talk to your Dr. about your fears of what eating will do,can you talk with a nurse? Someone on the staff you feel comfortable with?
09-14-2014, 11:07 AM   #19
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If you feel you can't talk to your Dr. about your fears of what eating will do,can you talk with a nurse? Someone on the staff you feel comfortable with?
I spoke to a nurse this morning and she said she'd try to find out what the discharge plans are for me, but I'm not sure she'll have time to get back to me before tomorrow.
09-14-2014, 11:45 AM   #20
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This whole candida thing is weird for me. Years ago, I got so angry with doctors who (mis)diagnosed me with IBS, and who told me it was caused by stress. The whole stress-induced thing seemed to mean that it was not serious and that it was somehow my fault for being hopeless at managing stress. Now I'm told this whole paralysis/loss of speech/weakness/diarrhoea reaction to the infection is a "stress" reaction - and yet the doctors take it extremely seriously. I know they must be talking about a whole other meaning of stress related illness, and the stress this time was physical but still. It feels weird to me, and kind of ironic, that after hating the notion of stress-related illness for how doctors don't take it seriously, to be completely wiped out by a stress illness that I wish so much was not serious.

Then there's the candida. This was familiar to me because it was one of those fake, alternative medicine diagnoses, that nutritionists and alternative medicine practitioners got me so worked up over, telling me I had it when I didn't and that I must give up all sugar, give up loads of other stuff and take all kinds of quack supplements in order to heal my digestive system. Either that or it was just thrush - not serious. I vaguely remember reading about candida in conventional medicine, but that it only affected really sick people, like people with AIDS. Now I guess I've been a really sick person.

But I'm getting better very fast. Steady on my feet now, no fevers last couple of days. I feel well, little pain, no pain killers. Eating is definitely better now with the blockage gone! Just need more movement in my hand and more strength back on my right side, finish the anti-fungals, and sort out with my doctors when I will go home!
09-15-2014, 07:31 AM   #21
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Still waiting to hear on my discharge plans - probably won't until tomorow now though.
09-15-2014, 07:41 AM   #22
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Too bad you have to wait...but you will go home. Have you been cleared and it is just hurry up and wait now?
09-15-2014, 07:50 AM   #23
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At least you're finally feeling better, if you're not paying for it yourself just think of it as the world's most boring hotel I guess?
09-15-2014, 09:47 AM   #24
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physiotherapist has me working very hard! I walked upstairs today. just last friday I was having to use a bed pan, and a couple of weeks ago I was having to use a catheter! Now I'm walking upstairs!

It's hard though because I don't feel unwell, so it feels like I shouldn't be in hospital. The antifungal treatment has to go on for a while, so they're seeing if they can arrange a district nurse to set up the IV at home each day. I think they're wanting to send me home. They're also arranging a stoma nurse to visit me at home because I can't change my bag with just my left hand, though hopefully soon my right hand will be up to it.

Just have to sort things out with the gastros/nutritionists. It's really worrying me. I wish they'd have come today like they were supposed to.

The microbiologists also came to see me today. I have candida (some type I can't remember) sepsis. http://en.wikipedia.org/wiki/Sepsis Also called disseminated candidiasis. It has to be treated by IV, not orally, because my absorbtion is poor and I'm missing some intestine. Still need the heart test also. No one is worried now, they think it should be cured, and I'm not getting fevers anymore. They took tons of blood today to retest for it and see how the treatment's working, but it takes a few days for them to get the results back as they have to grow cultures.
09-15-2014, 10:09 AM   #25
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At least you're finally feeling better, if you're not paying for it yourself just think of it as the world's most boring hotel I guess?
Lol yeah I guess I could think of it that way. It's a nice clean hospital anyway, I've certainly been in worse. The staff are all nice too.

Though thinking about it, if it were a hotel I would be paying for it. Have to be grateful for the NHS.

Last edited by UnXmas; 09-15-2014 at 10:24 AM.
09-16-2014, 09:32 AM   #26
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Rollercoaster today.

First thing one of the surgeons comes to see me, tells me from a surgical perspective I can go home, but the gastros/nutritionists want me to stay in to gain weight. Even though in August I was discharged because then they trusted me to gain weight on my own at home. I get told they won't come and discuss it with me because I'm on a surgical ward, and they only go to the gastro ward. There are no beds on the gastro ward, and won't be for some time, so I am to stay on the surgical ward, but not seeing any doctors.

So I got (more than) a bit upset.

Then later, a gastro doctor, who I've never seen before, comes and tells me I can go home tomorrow. He read my food chart and saw how much I was eating, and also talked about how much easier it will be for me to eat now the blockage is gone and the knotted bit of intestine has been removed (and eating is easier, now that I'm over the surgery and not sick and in pain, I can feel the difference).

I probably won't be going tomorrow, as they need to arrange for a nurse to come to my home everyday to set up my IV for my antifungals, and, if my hand is not better, to change my stoma bag. It might take a few days to set all that up, so I'm hoping maybe home on Friday.

My hand is improving though. I can empty my stoma bag now, just not change it. The physio took me to the "gym" this morning, and we walked up and down stairs (but I nearly fell over once), practiced crouching down to pick something off the floor then standing up again (which my muscles are still aching from! you'd have thought I'd been working out, the way they're feeling), and played lots of board games with fiddly counters and cards. (And in the mean time, my ability to write with my left hand has improved in leaps and bounds!)

So the plan is I'll go home, see a gastro and dietician as an outpatient, and get weighed by my GP every week to make sure I gain.

Just holding my breath now that some other doctor isn't going to come along and completely change everything again.
09-16-2014, 09:35 AM   #27
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I hope everything works out for you in the next few days! Looking forward to reading the next update - from your home
09-16-2014, 10:23 AM   #28
lenny
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My greatest fear is that my son will suffer a quarter of what you've suffered, unXmas. I hope you feel better soon!!!
09-16-2014, 11:13 AM   #29
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My greatest fear is that my son will suffer a quarter of what you've suffered, unXmas. I hope you feel better soon!!!
I wouldn't worry - I don't think my experience happens often!
09-16-2014, 02:57 PM   #30
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I hope you really and truly do get to go home soon. What a horrible time you've had lately. I'll keep you in my thoughts, especially on Friday! Fingers crossed that you can finally get out of the hospital and stay out of there for a good long time!
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