# Small intestine perforated, nearly died



## UnXmas (Sep 9, 2014)

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.


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## poopaholic (Sep 9, 2014)

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.


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## Orchid (Sep 9, 2014)

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.


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## scottsma (Sep 9, 2014)

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.


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## Cat-a-Tonic (Sep 9, 2014)

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!


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## valleysangel92 (Sep 10, 2014)

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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## UnXmas (Sep 11, 2014)

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.


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## UnXmas (Sep 11, 2014)

My TPN line was infected with the candida fungus;removing the line triggered the reaction.


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## UnXmas (Sep 11, 2014)

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.


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## poopaholic (Sep 11, 2014)

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.


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## UnXmas (Sep 12, 2014)

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.


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## dave13 (Sep 12, 2014)

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. :ghug:


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## UnXmas (Sep 12, 2014)

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.


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## UnXmas (Sep 12, 2014)

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.


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## valleysangel92 (Sep 12, 2014)

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


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## VeganOstomy (Sep 12, 2014)

Wow.  I certainly hope you find some relief after all this!


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## UnXmas (Sep 13, 2014)

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.


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## dave13 (Sep 14, 2014)

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?


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## UnXmas (Sep 14, 2014)

dave13 said:


> 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.


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## UnXmas (Sep 14, 2014)

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!


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## UnXmas (Sep 15, 2014)

Still waiting to hear on my discharge plans - probably won't until tomorow now though.


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## dave13 (Sep 15, 2014)

Too bad you have to wait...but you will go home. Have you been cleared and it is just hurry up and wait now?


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## Orchid (Sep 15, 2014)

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?


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## UnXmas (Sep 15, 2014)

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.


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## UnXmas (Sep 15, 2014)

Orchid said:


> 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.


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## UnXmas (Sep 16, 2014)

Rollercoaster today. :ywow:

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. :confused2:

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. :ywow: 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. ale:


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## VeganOstomy (Sep 16, 2014)

I hope everything works out for you in the next few days! Looking forward to reading the next update - from your home


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## lenny (Sep 16, 2014)

My greatest fear is that my son will suffer a quarter of what you've suffered, unXmas.  I hope you feel better soon!!!


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## UnXmas (Sep 16, 2014)

lenny said:


> 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!


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## Cat-a-Tonic (Sep 16, 2014)

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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## UnXmas (Sep 17, 2014)

Why do they play with my emotions like this?

I am going home today (assuming they can get the nurse arranged for tonight, otherwise tomorrow morning).

The surgical doctors wanted me home, the gastro I saw yesterday wanted me home. The gastro today, doesn't want me to. But she doesn't have the power to stop me, or overrule the other doctors. Her reason is that they still don't know why I have to eat such a massive number of calories to gain weight. But the reason I was admitted was nothing to do with my weight; I was admitted because my bowel became blocked and perforated. If I thought me staying here would mean they would actually find the reason, it would be a different matter, but I was here five weeks through July and August, and they tested and tested me, and found nothing. I had some inflammation, but not enough to justify the weight loss, and it was treated with prednisolone. What really upset me was that she said if I don't gain weight, they'd need to monitor me again to make sure I'm not failing to gain weight deliberately, i.e. that I don't have an eating disorder. The five weeks I was here last time, they had someone watch me twenty-four hours a day, and were all agreed (including this doctor) that I wasn't doing anything deliberately, that's why they did so many tests.

So basically I need a huge number of calories, but they can't find a reason why. This actually doesn't surprise me, as I've had all sorts of medical conditions that defy all the available knowledge, that's how I ended up having to go to a world specialist in London to have another illness that I have diagnosed. But because I surpass their knowledge, some doctors assume I must be faking illness. And all the trust I earned just a couple of months ago, after allowing, with no objections, have people watch me, even in the toilet and shower, that meant the doctors accepted I was not making myself sick, or hiding food, or secretly exercising, or whatever, is now apparently invalid, because once again they view my food record and think I should have gained a lot of weight. 

From last week to this one, my weight was exactly the same. Before that, I had lost a couple of kilos, but I was nil by mouth and taking in _no_ calories for a few days while they were debating whether or not to operate, then after the surgery I was on complete bowel rest, then small amounts of liquid and soft foods for several days, whilst getting only 1200 calories a day from TPN. How could I not have lost weight? It wasn't my fault my bowel perforated; I didn't do anything wrong.  I was actually really pleased that without the TPN I managed to hold my weight stable that week - I'm still just a couple of weeks past major emergency surgery on my digestive system, how can they not realise how hard it is to eat? All the other doctors were so impressed with my food record, that's why the others were happy for me to go home; they see I'm eating and drinking way more than they'd expect from a post-surgical patient, but they don't realise how many calories I need.

I know my weight's dangerous, but I just don't see how more time in hospital is going to help. I've still got more tests scheduled to have as an out-patient. So I'm going home, being weighed every week by my GP, so I know if I don't gain they'll want me back here again. I don't want more tests and surgeries and hospital stays. I just want to go home.


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## UnXmas (Sep 17, 2014)

Sorry, I just have to rant a bit more. This doctor who didn't want me going home is the same one that the surgeon got angry with for keeping me on TPN when the line was infected. She has started doing something that other doctors have done in the past which really pisses me off - trying to scare or tempt me into gaining weight my telling me medical problems are caused by being underweight. She told me the paralysis was caused by me being underweight. No one has a clue what caused the paralysis! - other than that it was a result of the infection that her TPN line caused. I hate it when doctors say things like this. I have been a healthy weight in the past and I was still very, very sick. How is it helpful to tell me this or that symptom will go when I gain weight, when I'll get to a healthy weight only to find they were completely wrong? Don't they realise how horrible it was to gain weight, making my digestive symptoms worse all the time, only to have hopes of improved health shattered? 

Then she came out with the worst thing - that maybe the reason my symptoms get worse when I'm eating more is because eating stresses me, and the symptoms are caused by stress. The surgeon, the one who actually found and fixed the problem, told me the blockage was caused by my eating so much over recent months (which this doctor who's pissed me off was overseeing). But this doctor doesn't mention that, even though it's in my file. Maybe she thinks my bowel perforated because I was stressed. :ymad:


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## UnXmas (Sep 17, 2014)

Sorted. District nurse can't do the IV, so I have to go to another hospital (much less specialised than this one, but much closer to my house) tomorrow and Friday to get the antifungals there - the IV takes about an hour and a half to go through. Then doctor rings on Friday, and if my last test results from the blood taken for cultures the other day are good, I switch to oral antifungals on Saturday. So complicated!


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## UnXmas (Sep 17, 2014)

Waiting for today's meds so that I can leave...


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## gemling (Sep 17, 2014)

Ugh, that last wait for meds is a killer isn't it? I would consider lodging a complaint about that Gastro, UnXmas. She doesn't sound very professional and sounds like she has a poor bedside manner. Hope that you're at least back home now so that you can continue to make your recovery at home. It sounds to me like you're doing great for all that you've been through!


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## UnXmas (Sep 18, 2014)

Home!


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## UnXmas (Sep 18, 2014)

gemling said:


> Ugh, that last wait for meds is a killer isn't it? I would consider lodging a complaint about that Gastro, UnXmas. She doesn't sound very professional and sounds like she has a poor bedside manner. Hope that you're at least back home now so that you can continue to make your recovery at home. It sounds to me like you're doing great for all that you've been through!


I didn't get home until about 10 at night - my meds came about 6pm, but then I had to have the IV for that day before I could leave, which takes an hour and a half.

I've made complaints about doctors before - I can't face doing that again. For the most part, they deny everything, do everything they can, including flat-out lying, to shut you up. It's exhausting and makes me so angry, when I _know_ I'm right and telling the truth, but they "win" because I can't prove it.


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## dave13 (Sep 18, 2014)

I'm happy you are home now! Hospitals are no place to heal.


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## UnXmas (Sep 20, 2014)

Went to the hospital for my last IV antifungal yesterday. Now I'm on oral medication for it so *no more hospitals!*  :Flower:

So long as my weight doesn't go down anyway; that doctor is still after me, thinks I should be hospitalised until I've gained more. My GP is to weigh me every week, and will send me straight back if I lose. I hate it that they seem to think I have control of my weight, that I could gain if I wanted to, if I tried. Even though on my last admission for weight gain, they had someone watch me twenty-four hours a day, even in the bathroom, to ensure I was not making myself sick or hiding food or engaging in other eating disorder behaviours to deliberately prevent weight gain. I complied with no complaints - I wanted to prove to them I had nothing to hide. And they were forced to admit that when I was eating what should have been more than enough to gain, I didn't. So why are they still treating me like I'm choosing this?

I'm also a little worried about this because the oral antifungal medication which I started this morning can cause severe diarrhoea. I've got to take it for two weeks, and hope that if I do get this side effect, it won't make me lose a lot of weight. :frown:

But one really good thing I'm glad about: one of the surgeons rang yesterday to say that the last blood tests they did showed no sign of infection! It's gone! I still have to take the medication, because otherwise you can develop resistance (or the fungus develops resistance? not sure exactly), like with ordinary antibiotics where you have to finish the course. I thought the infection was probably gone, as I've had no more fevers, but the thought was there at the back of my mind that they might tell me I had to go back in because the infection was still there. So glad it's gone!


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## Susan2 (Sep 20, 2014)

This might sound like a bit of a way out idea but I was wondering whether you do any form of relaxation exercises - meditation or yoga, perhaps. 

My husband was very skinny. He wasn't sick and didn't have diarrhoea but the food just didn't seem to "stick" and, however much he ate, he didn't put on weight. On the advice of a friend who was a yoga instructor, he began practicing relaxation before meals and, after some time, gradually started putting on weight. He never got plump, but he stopped looking as though I was starving him!

The principle seems to be that, through yoga relaxation or meditation, you can slow down your metabolism and give your body more of a chance to use the food that you put into it.

Just an idea...


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## UnXmas (Sep 21, 2014)

Interesting idea! I have to say, yoga and meditation are not really my thing - but perhaps they should be! 

I'd be very interested to know how fast my metabolism actually is. Recent tests showed that I do not absorb everything I eat, but not to the extent that accounts for how many calories I had to consume to gain. So where else can the energy be going? I suppose I must have a fast metabolism.

Was it just before meals your husband did relaxation exercises, or after as well? I usually read while I eat, unless it's a family meal; I think I'm as calm as I can be, but trying to relax more can't hurt!


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## dave13 (Sep 21, 2014)

Not to sound too obvious,_but_ do you chew your food well? Digestion begins in the mouth with saliva.

Glad the infection is gone!!!


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## UnXmas (Sep 21, 2014)

dave13 said:


> Not to sound too obvious,_but_ do you chew your food well? Digestion begins in the mouth with saliva.
> 
> Glad the infection is gone!!!


I chew well. I'm a very slow eater - small mouthfuls, lots of chewing.


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## UnXmas (Sep 22, 2014)

UnXmas said:


> I'm also a little worried about this because the oral antifungal medication which I started this morning can cause severe diarrhoea. I've got to take it for two weeks, and hope that if I do get this side effect, it won't make me lose a lot of weight. :frown:


No diarrhoea, but it's making me nauseous.  The only anti-nausea meds I have to hand are a type of anti-histamine and a migraine medication. Does anyone know if there are others I can just buy over-the-counter without having to wait to get a prescription from a doctor?

Edit: actually, the anti-histamine seems to be working well.


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## UnXmas (Sep 22, 2014)

I'm very upset. Through quick googling about removing central lines, I found what I'm 100% sure is what happened to me: air embolism. It fits exactly all my symptoms - chest pain, shortness of breath, paralysis, weakness, and ties it all in to the removal of the line. 

*Why did the doctors and nurses not tell me this?* It could have killed me. They didn't give me any diagnosis; they just told me vague things, like you've had a reaction, your body was stressed, etc. Surely they must have known?


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## UnXmas (Sep 28, 2014)

My right hand is getting close to being functional again! It shakes a lot, so typing, writing, etc. are still tricky, but I can almost get the last three fingers to straighten out now. My leg seems to move as much as it's supposed to, but I keep losing my balance, so I think it must be very weak still.


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## dave13 (Sep 28, 2014)

Moving in the right direction! Slow and steady improvement is a good thing.Takes time to build back strength.I'm happy for you!


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## UnXmas (Sep 28, 2014)

Thanks. I'm feeling a bit rubbish now, because eating had been so much easier since the surgery. I had thought that with the blockage and bad bit of intestine removed, I'd carry on feeling much more comfortable. But the last couple of days I've been back to feeling so so full all the time. It seems unlikely that I have another blockage building again, but I can't think why I would have surgery and go a few weeks without this horrible fullness, only to have it come back again. :confused2: I've not eaten differently, same medications, and my stoma is functioning the same as it was when I was feeling better. But there must be a reason. :frown:


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## dave13 (Sep 28, 2014)

Definitely hope it is not another blockage so soon.Do you think you need to re-evaluate your present diet? Just an idea...I know CD is indiscriminate and doesn't care about giving us a break,but,_man,_ you deserve a nice uneventful stretch for a change.

I wish I had the answers,you are in my thoughts and prayers.

Dave


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## UnXmas (Sep 29, 2014)

Thank you so much for carrying on reading my endless posts. 

The fullness did diminish quite a bit yesterday evening, so perhaps, even if I still experience it sometimes, I'll at least have some good days without so much discomfort.

I did have about double the normal stoma output I'd usually have overnight, so having all that building up could well have been the cause of the fullness (feeling full due to contents of intestine as oppose to contents of stomach). I began to feel more comfortable prior to all that coming out though - perhaps the fullness went away as it moved further down my digestive tract?

My diet at the moment is low-fibre, avoiding things that could block my stoma, which I'm sticking to quite strictly so soon after surgery. The surgeon and stoma nurses have told me that the type of stoma I have now shouldn't block as easily as my previous two, but I'm not ready to test it out yet. I did, however, have a pear yesterday, ripe, with all the skin removed. It was great to eat fresh fruit again! Tinned pears just aren't quite the same. I'm also trying to get in enough calories to gain weight - I seem to need more calories than most people - so I eat even when my stomach isn't feeling good. I have been wondering whether, if I could tolerate more fibre without blockages, it would help move things through, and reduce the discomfort from being so full. Maybe after another couple of weeks I'll try and introduce some foods with a bit more fibre in them.


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## dave13 (Sep 29, 2014)

I'm happy I found your thread to read! :wink: 

Maybe it will just take a bit of time to adjust to your latest 'new normal'. Your guts have to get use to the latest they have been through.Not exactly in medical terms. The trauma your body has been through recently,etc..

Perhaps stewed dried fruits would be o.k. for you when you feel you can move on to more fibre.A definite step above fruit in tins.I enjoy apricots and prunes lately.I use them in recipes,yogurt or by them selves.

I eat a lot of baked veg.I bake it so it is soft enough to not bother me,but not cook the nutrition out of it.Various veg and spice combos.I make soups out of baked veg leftovers sometimes.

I wouldn't think the stewed dried fruits would bother your stoma.They get quite soft from the stewing.You get the calories and the nutritional benefit.I stew some several times a week.

Hopefully the style stoma you have now works out and you can be a bit more adventurous with food.Cautiously and reasonably adventurous,of course. :wink:   

Dave


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## UnXmas (Oct 3, 2014)

I was weighed by the nurse this morning - I've gained 0.1 of a kilo since last week. I'm pleased because I feel I have to do this slowly; the more I eat, the harder it is on my digestive system. I'm not sure whether the doctors will be satisfied.

Eating is still definitely easier than before the surgery, but some days I still feel very full - sometimes I get up in the morning feeling full, before I've eaten anything. I think that in addition to stomach fullness, I get bowel fullness too. I didn't think constipation could be an issue with an ileostomy, but my output is and always has been of a very low volume. Sometimes it's very watery though, which doesn't seem like something that would indicate constipation. But when my stoma eventually does empty, it tends to do so quite quickly, so I might go all day feeling full, with no output, then in the evening it will fill up half a bag very quickly, and the fullness will be relieved. I'm considering asking my doctor about laxatives, as I feel if I could move things along more quickly, the fullness could be relieved much earlier. I would try eating more fibre, but I'm worried about blockages. Still, at least eating is easier - despite feeling full, I am recognising nice tastes, and the comfort of eating, which I couldn't do when the blockage was building.

I have one other problem: the improvements in my right hand seem to have stopped - the movement isn't coming back. I've been referred to a physiotherapist, but I've not got a good feeling about this, I feel I might not regain all the movement.


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## dave13 (Oct 3, 2014)

Tell them some weight is better than none,your not losing.

Maybe when you can better move around it may help with digestive issues.I'm sure the physio is strenuous enough for you at the moment. :yfaint: Did you try any stewed fruit? Good and good for you,as Mom would say to Dad as she fed him stewed prunes for constipation.Yup,the good old days. :biggrin:

Hopefully the hand will come back better than you expect with the aid of the physio.


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## Susan2 (Oct 3, 2014)

Before you go down the laxative route, I would suggest that you try finely grated apple or stewed and pureed apple. It is very gentle but could help you become more regular. It is also excellent for people with diarrhoea.

It probably isn't stone fruit time in your neck of woods, but I find that stewed plums - pureed to break down the skins - are good, too


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## happyballerina (Oct 4, 2014)

I'm just curious, how many kcal do you eat on average? It's not necessarily as uncommon as one might think to need 5-6000 kcal to gain weight. 

Another idea...
Although I would be shocked if they didn't do a thyroid test, I have to ask - did they do one? 

Have you had your adrenal function tested?

Do you feel quite warm or comfortable even when underweight? Or are you usually cold?

Just trying to help with your weight predicament


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## UnXmas (Oct 4, 2014)

I have been eating stewed fruit - apple mainly, also rhubarb. 

happyballerina:

I don't know how many calories I'm eating. When I was hospitalised for weight gain at the start of the summer, I didn't start gaining weight until, on top of three meals and three snacks a day, they'd upped my supplements to 1500 calories worth a day. Why would you need 5 - 6 thousand?!

My thyroid is normal. I don't know for certain that my adrenal glands have been tested, but I'm pretty sure that with the thousands of tests they've done, they most likely covered it. Is it a blood test?

And I'm always hot. The nurses keep telling me skinny people should be cold, but I get so hot!


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## dave13 (Oct 4, 2014)

According to the book 'The Raw Juice Therapy' rhubarb is used for constipation.It does say it should only be used occasionally because its high oxalic acid content offsets the little vitamins and minerals it has.(pp94-95)

"oxalic acid combines with calcium to form crystals of insoluble calcium oxalate rendering it unusable by the body"

Food for thought,so to speak.


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## UnXmas (Oct 4, 2014)

I had the same pattern today: felt so full, really didn't want to eat at all, then my stoma bag filled up - literally in the space of about a minute it went from empty to completely full, quite watery this time, and after that, I was comfortable enough to easily eat a meal.


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## happyballerina (Oct 5, 2014)

UnXmas, 

Sometimes people just need huge amounts of calories, especially when there is a lot of damage in the body to build back up and heal - for example, damage from disease, from major surgery, or from being very underweight, all three of which you're experiencing right now if I understood correctly. It takes a lot of energy to build up large amounts of new tissue and repair any damage. I don't know what medications you were and are taking, but it's worth mentioning that being on corticosteroids for a long time is another possible factor.  

There are several papers describing a hypermetabolic state with various etiologies, including the ones I mentioned above, in patients. I have personally most often seen articles that discuss hypermetabolism in anorexia recovery; I know you are not anorexic, but the bottom line is the connection between weight recovery and sudden very much increased caloric needs. 

You can read some of these articles:
http://archinte.jamanetwork.com/article.aspx?articleid=554680
http://www.scienceofeds.org/2014/05/07/hypermetabolism-in-anorexia-nervosa/

I even found one about Crohn's Disease, which explains the hypermetabolic state from malnutrition to be the result of changes in substrate metabolism (I only skimmed it quickly, but it seems they are referring to changes at the cellular level - perhaps somewhere in the ETC or oxidative phosphorylation); although, in this study, it was determined that enteral nutrition was an effective therapy. I will say that I wonder whether there are any implications about TPN in this setting; I have read before, offhand, that while EEN is quite effective at bringing a Crohn's flare into remission, for some reason it seems that TPN is not as effective; if that is the case, it wouldn't be a stretch to think that EEN may be more effective than TPN in the case of weight restoration and combating a hypermetabolic state. Anyway, you can read that article here:
http://www.ncbi.nlm.nih.gov/pubmed/10203559

This is actually a topic that interests me very much - energy expenditure, especially as it relates to mitochondrial uncoupling. I will try to provide a simplified explanation. Oxidative phosphorylation is a metabolic process in the mitochondria that regenerates ATP, which is the energy currency used by your body; ox phos relies on another process called the electron transport chain to do its job correctly - the ETC creates a proton gradient, the potential energy of which is used to "power" ox phos and ATP regeneration. Thus, the ETC and ox phos are "coupled" reactions. In mitochondrial uncoupling, an agent (usually a protein) interferes with the proton gradient created by the ETC and "depletes" it before ox phos can use it to make ATP. *Instead of making ATP, energy is released as heat. * It is interesting, then, that you mention being hot all the time. 

But I digress - I'm sure no one came here hoping for a biology lesson :ybatty:

These are just the thoughts that come to my mind when I read about your situation. 

Oh, one more thing. You say you only started gaining weight when you took in 1500 kcal in supplements on top of three meals and three snacks. I have no idea what those meals and snacks consisted of, so it's difficult to predict how many calories those were providing you with; but it generally takes some effort to reach above 2500 kcal with three meals and three snacks. What I mean is that usually, when people aim to take in 2500-3000 kcal in food, they have to actually work at it by adding extra fats, using full-fat products, increasing portion sizes, and/or making sure that all food is calorie-dense. You wouldn't think it would take extra effort to get _more_ calories in, but when you're aiming for several thousand, it certainly can be (unless you're eating McD's for every meal)! Hospital food is not the greatest and it's quite possible that the three meals and three snacks they were feeding you were not providing more than 2000-2500 kcal in all. So, even if you weren't/aren't in such a hypermetabolic state to require upwards of 5000 kcal per day to gain weight, it is very possible that the 1500 kcal in supplements were needed for you to gain weight just by bringing you up to 3500-4000 kcal. It's hard to say without knowing, though. 

Sorry for the long and winding post. Hopefully it answered some of your questions, though. As for what you can do to keep gaining weight, certainly keep making that effort to get in calorie dense foods. Most people find that eating small portions of calorie-dense food frequently throughout the day makes reaching a high calorie goal much easier and more realistic. 

Can you see a dietitian?

Also, there are a lot of online resources. I am personally not one to recommend counting calories, but maybe you are different from me and would benefit from it. I know there is quite an active community of weight-gainers on the Calorie Count website, maybe MyFitnessPall, too. At the very least, you could browse the threads to get some ideas. 

I don't know what you're eating now, but here are a few ideas for simple ways to really get that calorie intake up there:
This is a website for kids that has high-calorie recipes for cystic fibrosis, but it's as relevant to you and, IMO, is absolutely excellent.
Some ideas from Joy Bauer, RD to increase calories for Crohn's Disease patients. 
Scroll down for recipes for not-junky shakes that have between 900-1500 kcal each. 
One of the many forum posts from the Weight Gain forum on CC that is absolutely full of good ideas and recipes. 

I hope you will find some of those helpful!!


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## UnXmas (Oct 6, 2014)

Thank you so much, happyballerina! Including thanks for the biology lesson - I love learning the science behind things; understanding possible reasons _why_ I may not be gaining is extremely useful.

I've had two dieticians recently: one each hospital admission this summer. The second just basically oversaw the TPN after my surgery. The first was involved during my weight gain admission, but she was hopeless. She'd tell me how well I was eating - but then my weight would go down, so she obviously had no clue about how much I needed to eat. She also had no clue about how I needed to eat with an ileostomy, and didn't understand that some foods can cause blockages!

Going to read those articles now - maybe I should send them to the dietician! Thanks again.


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## UnXmas (Oct 6, 2014)

I've had a look at the articles, thank you again, though of course I think it's probably impossible to know how the ideas apply to me. (A very long rant follows - I just had a lot of thoughts to get out.)

I really wish my doctors weren't being so impossible about this. They're basically treating me for an eating disorder - I get weighed every week, and if I don't gain, I'll be admitted to hospital. When I left after my surgery, one doctor - the main one who seems to have put herself in charge of me - even said she'd consider sectioning me under the mental health act if I left the hospital. But then one of the other gastroenterologists in her team said that if she did that, she'd also have to prove that he himself, and the whole team of surgeons, were also lacking the mental capacity to make decisions, as they all thought it was fine to discharge me.

She thinks I'm mentally ill because she believes I should so more concern about my weight; she keeps telling me I could die, and says I should be panicked about this. She doesn't seem to get that I was very ill even when I was a healthy weight. If I could be the perfect weight right now, I'd be incredibly sick with various serious health problems regardless. And what should I do to express concern? Turn up at A&E every day, telling the emergency staff that I'm too thin? She's said the same to my mum - asked her why she wasn't concerned, and my mum said the same thing; what good would panicking do? She's used to me being in potentially fatal circumstances. How should she act, when it's out of her control? 

And food actually does make me ill. The surgeon was certain that my intestine blocked because it couldn't cope with all the extra food I'd been having to eat when this same gastroenterologist admitted me for weight gain a few months ago. Food not only gives my immediate discomfort and other symptoms, it really does harm my digestive system too. So showing concern about my weight by eating and eating and eating is really a terrible idea. But that is what the gastroenterologist wants me to do. The day that I got out of intensive care and moved to the surgical ward, she came to see me and said I should be aiming to gain a kilo a week, minimum. But I was on bowel rest, and all my nutrition was coming via TPN. Does she not realise the harm it would cause to be eating that much, right after bowel surgery? My intestine had just perforated. Later the surgeon got angry with her because she refused to let them stop the TPN, even when the line was infected. They got another gastroenterologist to authorise removing it, and by that time I had a temperature over 40. My GP for some reason goes along with everything the gastroenterologist says, and I've no idea how I can switch to another doctor without them seeing it as another attempt to avoid weight gain.

I just hate this pressure to gain that I'm under now, especially since a day with more stoma output can mean the weight on the scale fluctuates. I'm so underweight that it will take years to be a healthy weight, and then I'd have to maintain it, and I don't think it's possible. I would just love to drink a Diet Coke instead of an Ensure for once, and not be having to continually be calculating how to get in the right amount of calories. I sometimes think, what if I just didn't try so much? If I sometimes skipped a meal so that when I came to the next meal, I might actually be looking forward to it, or at least wasn't dreading it. Or if I ate food I liked, if I ate fruit and yoghurt and diet drinks and whatever else I felt like, and didn't try to make everything as high-calorie as possible, would my weight drop?

Sorry, I'm just ranting. I know there are many starving people in the world. I don't know why this is so hard for me.


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## happyballerina (Oct 6, 2014)

That's a really crummy situation. And yes, no doubt, they are treating you like you have an ED and basically treating for one.

I know how frustrating it can be, but I don't know what you could do to "convince" them you don't have an ED. Any attempt to try to convince them you don't may be interpreted as evidence that you DO actually have one. So, it's almost a lose-lose situation, it seems. 

IMHO, the best thing for you to do is to absolutely cooperate even when they're treating you for an ED you don't agree you have. Rant about them here, think about all the bad stuff you would like to say to them in your head, be angry at them - whatever you feel at the time; but don't show it to them. Make them believe that you are taking in everything they say, and don't fight them. I know that this is so hard to do when you truly disagree with someone, especially as it's YOUR care, but I think that it's the best option, for the time being at least. 

Are you able to meet with a psychologist? Specifically, one who specializes in eating disorders. Go as an outpatient. Tell him/her everything 100% honestly. Tell them you are there because you considered what your medical team has been telling you and you wanted another opinion as you don't feel you have a fear of gaining weight but are open to discussing the situation as it stands. Don't be insistent that you absolutely do not have an ED or that you're doctors misdiagnosed you and they are wrong, etc. even if that's how it really went down. Come in as an open-minded person who is taking initiative to put her best interests in front of her and who wants to evaluate whether what her doctors said is consistent with a psychologist's perspective on her situation. Be sincere and express that you need help figuring this out, whether or not you really have an eating disorder, because it's gotten to be a bit of a messy situation. Basically -- you need someone you can trust, who you can tell the whole story to, who you can talk to. You need someone on YOUR side, who has power in the health-care system. A good psychologist would have no reason to think you are an anorexic trying to trick them into declaring that you don't have an ED if you are open and sincere and if you really don't have anorexia. They can communicate with your current healthcare team and help you get the care you need, and not get care you don't need. At the same time, your healthcare team will see that you are taking initiative and considering what they said. What's more, it's always a luxury to have a professional to talk to, eating disorder or not; it's not a secret that you've been having a hard time lately, from a chronic illness at that. 

I really hope you are able to do something to get out of such a $itty situation! 

As for your diet, you must try to gain weight, even if it's just to please the annoying doctor. 

I am not one to say if you do or do not have an eating disorder and it's certainly not in my place to do so, but it does seem to me like you have some disordered eating or just a somewhat unhealthy relationship with food. That said, I have very strong opinions about the way EDs are handled and I hate to say this, but, there is no doubt in my mind that the way they were/are treating you for anorexia is a HUGE reason for your current relationship with food. I want to say it's their fault, maybe not entirely but putting that kind of pressure and emphasis on someone absolutely does not help. Add that to someone with Crohn's disease who is more likely than the average person to develop a fear of eating just because of the pain they know will come, and, well...it's just not at all conducive to a healthy relationship with food. 

As for gaining weight without high food volume, you really need to use those calorie-dense foods. Have a 1000kcal shake between each meal. Does nut butter digest ok for you? If it does, use it. Use cream combined with milk instead of just milk. Put oil or butter on whatever you can. You can easily fit in 5000+ kcal with something like this:

B: 2 pieces white toast with butter and jam or cheese or nut butter or avocado, a pot of full fat yogurt (some brands are 250+ kcal for a pot), a glass of your choice of juice 
S: A 1000 kcal shake
L: A bowl of [vegetable, chicken, whatever] soup pureed with 1+ T oil added (while blending to emulsify), 1 cup of white rice cooked with broth and oil or butter, chicken or another meat you like; can use sauces to increase kcal intake, etc., a diet soda  (you can still drink diet soda!)
S: A 1000 kcal shake
S2: Some type of nutrition bar eg. Cliff bar, etc. should be ~250 kcal
D: Mashed potatoes made with cream and butter or pasta with butter or something similar, salmon or your choice of fish or meat, a small serving of vegetables of your choice made with oil or butter, a cup of your choice of juice or milk (better if 1/2 milk 1/2 cream)
S: Dessert -- a piece of cake with tea or ice cream or hot chocolate made with cream or any other dessert of your choice
S2: Ensure or your choice of nutrition drink (the type with extra calories) before bed

Sandwiches work well for lunch too and can be made to be very calorie dense. 

Does that look like something you would be able to do, or is that still too much volume?


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## UnXmas (Oct 7, 2014)

They already referred me to a psychiatrist, and sent two of them to see me at various points during each of my two latest hospital stays. I tried to be open, and did not deny I had an eating disorder, I just stressed that it was not anorexia and that it was instead a not entirely irrational phobia of food making me ill. They couldn't get their heads round the fact that I don't have anorexia and kept asking me how I was coping with "seeing the number on the scale go up." This is all deja vu for me as I have been in treatment many times for my "eating disorder". Psychiatrists, psychologists, etc. always see what they want to see.

This time the psychiatrists discharged me though. I kept asking them what they were planning to do, how did they think they could help? And they couldn't give me an answer - and I mean that literally, they didn't know. When one rang the other day, she wanted to arrange an introductory meeting. I pointed out that this would be the fourth time we'd met, and rather than introducing themselves, could they actually start treating me? And her answer to that was to say that if I didn't think their service would be helpful, she'd discharge me, and she did. :confused2:

I very much appreciate your advice on diet - if I could eat like that I would, but I physically can't. Way way too much.


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## UnXmas (Oct 11, 2014)

I canceled my follow-up out-patient appointment with the gastroenterologist. I think having the blockage and perforation brought on by her re-feeding regime, plus her determination that I should go right back to it, the surgeon's anger with her for keeping me on TPN when I had an infection, and her persistence in the belief that my need of excessive calories is just because I must in some way be deliberately sabotaging my weight gain through eating disorder behaviors are enough reasons to justify not continuing to see her.

I gained 0.2kg at my official weigh-in. I'm happy with that - they didn't give me a set amount to gain each week to avoid being forced back into hospital, just that it has to go up. I'm sure it's safer this way, not like when they were trying to make me gain 1 - 2kg a week when I was in-patient, which was impossible anyway, my body won't gain that much. 

I think I need to see a nurse next week; I think my incision isn't healing well. I have a nice scar from below the level of my underwear to my chest, but one tiny bit of it is all scabby and bleeding and oozing. It's a very tiny bit, but I'm not risking anything that would get me back in hospital, so I want to know it's not infected. It's right by my stoma, so I'm wondering if it got infected from that. I've kept it really clean since I've been home, but when I was very sick and when my arm was paralysed, nurses were changing the bags and dressings, and they never had time to get to me quickly if it leaked - sometimes I'd be waiting knowing the stoma content was seeping under the dressing and have to wait til a nurse was free. I'll get the nurse to weigh me when I'm there.


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## UnXmas (Oct 11, 2014)

I've just finished reading through some of the articles posted, but I'm not sure I'm further forward in understanding what's wrong with me.

http://www.scienceofeds.org/2014/05/07/hypermetabolism-in-anorexia-nervosa/

E.g. in this one: 





> Adding to the complexity and the challenge is the fact that during weight restoration, individuals with anorexia nervosa tend to require increasingly more calories to maintain the same rate of weight gain. That is, individuals need to continually increase their caloric intake, in steps, sometimes upwards of 100 calories (technically, kilocalories) per kilogram per day, to continue gaining weight.


Because I'm right at the start of "weight restoration". If I gain some weight, am I going to need more calories to keep gaining?


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## Ihurt (Oct 14, 2014)

Hey Unxmas,

Wow, you have been through hell and back again. I am so sorry you are going through all this. I pray that you are on the mend now and will be ok from here on out. I feel so bad for you . No one should have to go through that. I am saying prayers for you that you heal quickly and get back to yourself again..


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## UnXmas (Oct 15, 2014)

Thank you, Ihurt. I am quite well now. I still don't have much movement in my right hand from the paralysis, but my stoma is working well, and all the infection has gone too. Just have to keep trying to get my weight up.


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## dave13 (Oct 16, 2014)

You could put rocks in your pockets for your next weigh in.


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## UnXmas (Oct 17, 2014)

dave13 said:


> You could put rocks in your pockets for your next weigh in.


I'm tempted.  Though of course then I'd need more rocks at the next weigh in.  

Apparently there is actually something called water-loading which anorexics do - drink a load of water before they're weighed so the scale goes up without them actually having to consume any calories.


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## Ihurt (Oct 17, 2014)

Hey Unxmas,

Just reading your post and I am outraged along with you at that idiot doctor who thinks you should start eating tons right after such a major surgery!! I mean hello, doesn't she realize you would give anything to be able to eat normally if it were that easy??? I mean honestly, what does she expect you to do, run over and eat a big mac right after they discharged you from the hospital???:ywow: 

I am glad at least the other doctors are in your court on this. It just surprises me on how ignorant some doctors are. I would have told that doctor well I tried eating tons of food and look where it got me, I almost died! 

I totally understand where you are coming from. It is so hard to eat when it makes you sick or in pain.  I know there was a point where I was only able to eat baby foods, everything else made me sooo bloated and sick. I remember seeing this one doctor at the time, she was pretty nice, she told me to try and take a bite of something every 15 to 20 minutes if I could. She thought if I could just manage a bite at a time it would not cause me as much pain. I really am mortified that they are clumping you in with having an eating disorder. You do not have an eating disorder. Huge difference. I am just so mad for you and sorry you are going through all this 







QUOTE=UnXmas;821138]I've had a look at the articles, thank you again, though of course I think it's probably impossible to know how the ideas apply to me. (A very long rant follows - I just had a lot of thoughts to get out.)

I really wish my doctors weren't being so impossible about this. They're basically treating me for an eating disorder - I get weighed every week, and if I don't gain, I'll be admitted to hospital. When I left after my surgery, one doctor - the main one who seems to have put herself in charge of me - even said she'd consider sectioning me under the mental health act if I left the hospital. But then one of the other gastroenterologists in her team said that if she did that, she'd also have to prove that he himself, and the whole team of surgeons, were also lacking the mental capacity to make decisions, as they all thought it was fine to discharge me.

She thinks I'm mentally ill because she believes I should so more concern about my weight; she keeps telling me I could die, and says I should be panicked about this. She doesn't seem to get that I was very ill even when I was a healthy weight. If I could be the perfect weight right now, I'd be incredibly sick with various serious health problems regardless. And what should I do to express concern? Turn up at A&E every day, telling the emergency staff that I'm too thin? She's said the same to my mum - asked her why she wasn't concerned, and my mum said the same thing; what good would panicking do? She's used to me being in potentially fatal circumstances. How should she act, when it's out of her control? 

And food actually does make me ill. The surgeon was certain that my intestine blocked because it couldn't cope with all the extra food I'd been having to eat when this same gastroenterologist admitted me for weight gain a few months ago. Food not only gives my immediate discomfort and other symptoms, it really does harm my digestive system too. So showing concern about my weight by eating and eating and eating is really a terrible idea. But that is what the gastroenterologist wants me to do. The day that I got out of intensive care and moved to the surgical ward, she came to see me and said I should be aiming to gain a kilo a week, minimum. But I was on bowel rest, and all my nutrition was coming via TPN. Does she not realise the harm it would cause to be eating that much, right after bowel surgery? My intestine had just perforated. Later the surgeon got angry with her because she refused to let them stop the TPN, even when the line was infected. They got another gastroenterologist to authorise removing it, and by that time I had a temperature over 40. My GP for some reason goes along with everything the gastroenterologist says, and I've no idea how I can switch to another doctor without them seeing it as another attempt to avoid weight gain.

I just hate this pressure to gain that I'm under now, especially since a day with more stoma output can mean the weight on the scale fluctuates. I'm so underweight that it will take years to be a healthy weight, and then I'd have to maintain it, and I don't think it's possible. I would just love to drink a Diet Coke instead of an Ensure for once, and not be having to continually be calculating how to get in the right amount of calories. I sometimes think, what if I just didn't try so much? If I sometimes skipped a meal so that when I came to the next meal, I might actually be looking forward to it, or at least wasn't dreading it. Or if I ate food I liked, if I ate fruit and yoghurt and diet drinks and whatever else I felt like, and didn't try to make everything as high-calorie as possible, would my weight drop?

Sorry, I'm just ranting. I know there are many starving people in the world. I don't know why this is so hard for me.[/QUOTE]


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## UnXmas (Oct 18, 2014)

Thank you Ihurt, I know you've had more than your fair share of difficult doctors too. My weight is so very low, I know there's a reason doctors should be concerned about it, but this gastroenterologist seems more intent on catching me out as having an eating disorder than actually helping my health.

When I was in-patient for around four or five weeks earlier in the summer, before this perforation, the gastroenterologist had me supervised twenty-four hours a day by a nurse, one-to-one (must have cost the NHS a fortune!) to ensure I was not making myself sick or hiding food or whatever, and to record everything I ate and drank. I didn't object to that, because I knew this new gastro team (it wasn't just this one doctor then, there was the whole team involved, as they generally are) did not know me, and I saw it as an opportunity to show that I _don't_ have an eating disorder, and that even though I'm not eating masses and masses, I can eat quite a lot and still lose weight. 

Sure enough, they found I could eat a lot - the nurses on the gastro/nutrition ward, used to dealing with patients with severe anorexia and severe bowel disease, could not get over how I could eat so much and be so thin. The doctors quickly figured out there was something abnormal about my calorie requirements. At that time, the doctors and dietician seemed to completely believe me about not being anorexic - after all, they had proof now.

So I have no idea why this one doctor has suddenly reverted! I feel I subjected myself to all that observation for nothing. If she doesn't trust me after four or five weeks of that, she's never going to.

I really want a gastroenterologist for help though. I have wonderful surgeons and good doctors for some of my other health problems, but I've seen a huge number of gastroenterologists in the past and have yet to find one I can stay with. I might see about switching to another doctor who was part of the team looking after me on that weight-gain admission, and hope she's not also reverted her opinion.



> I am glad at least the other doctors are in your court on this. It just surprises me on how ignorant some doctors are. I would have told that doctor well I tried eating tons of food and look where it got me, I almost died!


Unfortunately I did tell her that - she knew the surgeon had said it was eating so much that had brought it on. She didn't even deny it, just didn't care and still thought I should go back to stuffing myself regardless! My other surgeon, who always speaks his mind  - told me she is mad. I've encountered this madness in many doctors before; they become convinced a patient has a mental rather than physical illness, and then become so obsessed with that they can think of nothing else. (Doctors with OCD or delusions maybe?!) Yet I was still taken aback to find that a doctor could still be unwavering from this idea when faced with such extreme and obvious physical symptoms! I've canceled my out-patient appointment with her, so now just have to hope they don't pick up on that, or if they do, that they let me see someone else.

Btw, Ihurt, I know in the past you'd posted about your diet, and I'd worried how you could be living on so little. Now I know that it's me that's more abnormal - because I lose weight so easily, I was assuming others did too, but now I know that I need an excessive number of calories, so my perception was skewed at times.


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## UnXmas (Oct 18, 2014)

dave13 said:


> You could put rocks in your pockets for your next weigh in.


My weight in the end was up 0.2kg, but that was after lunch, previous weigh-ins have been in the morning, so I'm not sure that it was true weight gain (and even if it was, it's such a small amount it would be so easy to lose again). So now, next week, if I get weighed in the morning it might be even more likely to have gone down. :confused2: 

But I have everything working against me: 

1. I need more calories than a person of my height, weight, etc. should. I'm either not absorbing everything or I have a high metabolism, or both, but it's definite that I need more calories than I should.

2. Eating makes me feel ill. I get very full. I have a gastric emptying study booked soon, though I'm not sure what the results will be, as it's often the constipated feeling lower in my bowel that makes me feel full and uncomfortable and not want to eat, rather than just fullness from the amount of food in my stomach. Plus the occasion mild cramps, nausea, etc. which would put anyone of eating a bit.

3. I know that the more I eat, the faster my digestive system deteriorates. So the longer I'm stuffing myself, the worse my system gets, and that in turn makes it even harder to eat. Before I thought this was just a quality-of-life issue, but now I know that eating too much led to a blockage and perforation, so I'm here stuffing myself, knowing that it could potentially kill me. :confused2:

4. I know that I will still be sick if my weight were perfectly healthy. I could be a normal weight (and I have been in the past) and I would still not be able to live anything like a normal life. I will still be becoming increasingly disabled. So what motivation do I have to gain, besides staying out of hosptial?

And why are some of my doctors so so incredibly concerned about my weight yet couldn't care less about my digestive system?! They are  mad. :runaway:


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## Ihurt (Oct 18, 2014)

Hey Unxmas,

Oh gee, what a frickin awful  situation you are in. I had a doctor like that, but for a different health reason. I went to this urogynecologist for my bladder issue a few years back. I remember walking in there for my appointment and I was in so much agony. She asked me what my goal was. I told her I wanted to get rid of the severe pain in my bladder. She just went ballistic. She started telling me there was no way she would consider giving me narcotics for pain ( mind you I never even asked her for pain meds) and she went on and on how I was going to become an addict and end up in rehab. I mean this bitch ( excuse my French) had me feeling like a drug addict at the end of my appointment! It was awful. So I can relate to how that idiot gastroenterologist made you feel. You are right, if she saw you go through that period where you ate and ate and they had proof you were not throwing up your food( rolling my eyes at that one) what the hell else does this doctor want from you? What does she want a sworn oath written in blood? Honestly, I agree with that other GI doc who told you she is Mad. It sounds like she is neurotic. 

I wish it were not so hard to find good doctors these days. I hope you can hook up with a GI doc who you can feel comfortable with and one that puts your best interests first. Hang in there Unxmas, things will look up. I mean hell, once you reach rock bottom, the only way left to go is up right .


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## UnXmas (Oct 18, 2014)

Ihurt said:


> I had a doctor like that, but for a different health reason. I went to this urogynecologist for my bladder issue a few years back. I remember walking in there for my appointment and I was in so much agony. She asked me what my goal was. I told her I wanted to get rid of the severe pain in my bladder. She just went ballistic. She started telling me there was no way she would consider giving me narcotics for pain ( mind you I never even asked her for pain meds) and she went on and on how I was going to become an addict and end up in rehab. I mean this bitch ( excuse my French) had me feeling like a drug addict at the end of my appointment! It was awful.


I think some doctors just have these obsessions. Maybe they're been manipulated by a patient with a real eating disorder or drug addiction or whatever in the past. Though I'm addicted to codeine myself, I understand there are serious issues which they need to look out for, but there does reach a point where, as you say, it's ridiculous. I know how sensitive you are to many meds, and eager to avoid them, which makes it even more ironic that this doctor would consider narcotics to be an issue for you. It's because she pre-judged you rather than getting to know you first. Though maybe some doctors don't have time to get to know patients, I can believe that. But in my case, the gastroenterologist had more than enough time. I was in-patient for a month during my first admission this past summer, and a couple of weeks when my intestine perforated. I take it you never went back to that urogynaecologist? Did you get any further with treating the pain?

My weight is down today, and I'm not sure why. I haven't eaten significantly less, so it's at least part just a fluctuation due to my stoma output being more watery or peeing more or something along those lines, that's what I'm hoping anyway. But I know from my weight-gain admission that sometimes I could eat and eat and gain a little weight, other times I could eat and eat and I would lose weight. It's just not something I have total control over. Which is why it's pissing me off so much that some doctors are treating it like I do. :mad2: Even my GP, she's sympathetic, and knows me well enough not to suspect anorexia, but she's one of the ones who seems to be so incredibly concerned about my weight, but pays no attention to my digestive system, and can't seem to grasp that there's any kind of link between the two. She seems to think I could gain if I just wanted to or tried harder. 

I'm just so exhausted by it all.


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## Ihurt (Oct 18, 2014)

No, I never went back to that urogynecologist after that. Right now I am working with my regular GP and she has me on a low dose of Neurontin for the pain. It helps some. I am only able to take like 200mg's though. When I try and up it my heart goes bananas. 

I am surprised at your doctors. I mean it could also be you have a very fast metabolism or one that is way off kilter which would explain why your weight gain is so shifty. It sure sounds like metabolism. I mean you say you can eat and then still not gain anything or you can eat and lose weight. Also with your metabolism, you cannot control that. I use to have a friend when I was in High School years ago and she was super skinny regardless of how much she would eat. It was just her. The school counselor constantly was at her and calling her parents trying to push the notion that she was anorexic too, and believe me, she was not. Even her parents told the counselor and school that this was just how she always was. She was always on the thin side regardless of what she ate. 

I understand your frustration. Having a GI disease can also cause all sorts of crap to happen that are not under your control. Your doctors really should know better. I know you are doing all you can do and that is all you can do really. They act like this is a picnic for you. I think sometimes they forget that you are the one going through all this and it is the hardest on you. You are doing the best you can under the circumstances. Are you able to eat any solid foods right now? I know you said you are trying to drink ensure right? I honestly think because of all your body has gone through, this has effected your metabolism and it is going to take time to straighten itself out. Do you feel sick after eating?


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## UnXmas (Oct 19, 2014)

Ihurt said:


> I understand your frustration. Having a GI disease can also cause all sorts of crap to happen that are not under your control. Your doctors really should know better. I know you are doing all you can do and that is all you can do really. They act like this is a picnic for you. I think sometimes they forget that you are the one going through all this and it is the hardest on you. You are doing the best you can under the circumstances. Are you able to eat any solid foods right now? I know you said you are trying to drink ensure right? I honestly think because of all your body has gone through, this has effected your metabolism and it is going to take time to straighten itself out. Do you feel sick after eating?


Oh! I'm eating food! That's the thing - everyone assumes I'm just having liquids, or tiny bites, but I'm not! I'm eating proper, substantial meals. I don't eat absolutely massive meals, but I eat usually four medium/smallish meals a day, and in between I pick at chocolates or sweets or something, plus a few high-calorie drinks (Coke, fruit juice, hot chocolate, etc.). And sometimes I'll have an extra snack of a couple of biscuits or something similar. So, yes I'm definitely able to eat solid food! 

Which is why, when I was in hospital, the nurses on the nutrition ward were so speechless when they saw me eat. They're used to dealing with people with very severe anorexia, or very severe cases of bowel diseases like IBD, so they see plenty of people who are extremely underweight, but none who eat like I can. I didn't start gaining weight in hospital until every day I was having three meals, three snacks, and, _on top of all that_ 1500 calories worth of supplements. 

No wonder my bowel blocked and perforated! That's why I'm so angry with the gastroenterologist. She knew I had incredibly complex digestive problems, and yet was not able to warn me that forcing so much food down would be dangerous. I know being such a low weight is also dangerous, but I don't think a perforated intestine and emergency surgery and an infection from a septic TPN line are any safer! Especially as I had to undergo that surgery when I was such a low weight. The surgeon did tell me I might not wake up after surgery, though actually when it came to it, the perforation was not as bad as she'd thought, and I recovered much faster than she'd expected. I seem to have a lot of resilience, and that applies with my low weight as well; I seem quite well-adapted to being underweight.

I don't think my metabolism will "straighten itself out" - this is a very long-standing problem for me, and it's actually getting increasingly worse. I don't feel sick after eating. I actually hardly ever vomit. Despite all my digestive symptoms, that's thankfully one I've been spared, which I am very grateful for as I would find that horrible. The only times I've felt nauseous have been due to side effects of medications and when my stoma has been blocked, though even then I didn't actually throw-up. 

After eating I just get incredibly full in my stomach, and even when I haven't eaten I can have a lot of discomfort in my intestine, to the point where it feels like it's full to bursting. I know that doesn't sound terrible, but it's hard to describe how bad it is - imagine having to sit down and eat a three-course meal when you're already completely stuffed, I guess it's kind of like that. And at the same time, you're trying to sit down and eat a meal, when you can feel your bowels cramping with the urgent need to have diarrhoea. Not exactly a pleasant way of facing food each time you eat.

Before I had an ileostomy, eating more would give me horrendous problems - diarrhoea that lasted for hours every day, that could be explosive, bowel incontinence, etc., etc. So eating more is far less daunting for me now; if it weren't for my stoma, I don't know how I'd be able to cope anymore.


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## dave13 (Oct 19, 2014)

It seems you are quite an enigma to them. I'm not the sharpest tool in the shed,but it sure seems like they are blaming you for there lack of knowledge.Especially the enterologist who just couldn't accept she was wrong.Her wounded pride seemed more important to her than saying 'you know what?,I misdiagnosed my patient.We need to come at this from another angle.'.

I fixate on that enterologist and her being upset your disease isn't fitting her explanation and you are doing it just to be difficult.Doctors like that are dangerous.


Hope you have a good stretch coming up soon.


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## Ihurt (Oct 19, 2014)

Yes, I agree with Dave13 on that one about doctors who would rather blame you than admit they were wrong are dangerous!  That is what this sounds like with that gastroenterologist trying to say you have an eating disorder rather than admitting she is baffled and does not know what is wrong with you. I Hate doctors like that, I really do. I had one wonderful GI doc that I had for years. He was the one who finally diagnosed me with having a neuropathic dysmotility of the small bowel back when I started having upper gut issues in 2004. He was the absolute best! He was the Only doctor ( especially GI doctor) who was always completely honest with me, even if it meant hurting his pride. I remember being so sick with all these health issues I was having and being at my appointment and just crying asking him why was I so sick? He told me that he wished he could tell me that answer. He said unfortunately he and all the other doctors out there were not smart enough to figure it out yet. He said Gastroenterology is like 30 years behind that they really are very limited in knowledge. He then said, you think that is bad?, Urology is 30 years behind the gastro doctors! I remember him saying that medicine has come a long way, but it has ways and ways to go still. Unfortunately my GI doc moved out of state about almost 3 years ago . He was great though. An honest doctor is a good doctor in my book.

Yeah, you may be right about your metabolism not ever getting back to normal. I know you just want to live your life and not worry about all this. I feel so bad for you. I guess all you can do is what you are doing. You cannot do anymore than that and this doctor has to accept that. If she cannot, then I would refuse to ever see her again. She is toxic and is not going to help your situation by constantly blaming you for not eating enough or whatnot. Her stupid pride is getting in the way of her making responsible judgments in this case, at least that is what I think. I am so sorry Unxmas that you have to deal with this lead head doctor. I mean you have enough on your plate to deal with let alone trying to appease this doctor who obviously does not know what she is talking about. Hope you can maybe find one GI doc who is the star out there that will be the one right for you!


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## UnXmas (Oct 20, 2014)

I'm really feeling the pressure now, because my last two weekly weigh-ins I had gained a fraction - 0.2kg. But I'm weighing myself unofficially at home every day to make sure I don't get any shocks on weigh-day and can push myself to eat more if needed, and the last couple of days it's been down. I don't think I've been eating less than before, so it might be due to the fact my stoma output has been quite watery so I may have lost water-weight, but I don't think that will be taken into account by the doctors.

So the other evening I stuffed myself of lots of high-calorie foods, and it was miserable. I have zero energy in the evenings now, which doesn't help when I'm trying to decide what to eat. Then the other day, I ate a meal with my family, had a proper sized portion, had vegetables cooked very soft so as not to block my stoma, it was home-cooked, and I liked it. But I've no idea how it worked out calorie wise. And then part of me thinks that even if I stuffed myself with high-calorie foods all the time, I may still end up losing weight because _I just don't have that much control over it_ . And then I'd have made myself miserable for no purpose.


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## dave13 (Oct 20, 2014)

Your doctors main concern is your weight.I worry about you nutrition wise.I would hate to see you shun something nutritious for something just to add calories to appease the doctors.

Within reasonable limits,I would think your doctors would listen more to how you feel than what you weigh.I would rather be under weight and eating well,fueling my body with what it needs than be at some predetermined 'good' weight and eat crap.I am like that,a matter of fact.I am a bit light,depending on what index you use.Our situations are quite different,but I hope this makes some sense.

I hate to see you push yourself and end up feeling miserable over a few kg's forced upon you by a delusional enterologist. You know your body the best.

:ghug:


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## Ihurt (Oct 20, 2014)

Geez this is just a crappy situation all around that you are in. :stinks:

I am guessing your mom goes with you to your appointments right? Cant she tell the doctors you are eating, I mean she knows you are eating enough. It is obvious that you have no control over the weight issue, it is just your body that is not cooperating and you cannot help that. It sounds like you are doing everything possible to try and gain the weight. I feel so bad for you. I wish your doctors would just listen to you. That is the problem, too many doctors are too busy trying to give orders and not listening when they should be. This is why so many patients end up worse off at times.


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## UnXmas (Oct 21, 2014)

Ihurt said:


> Geez this is just a crappy situation all around that you are in. :stinks:
> 
> I am guessing your mom goes with you to your appointments right? Cant she tell the doctors you are eating, I mean she knows you are eating enough. It is obvious that you have no control over the weight issue, it is just your body that is not cooperating and you cannot help that. It sounds like you are doing everything possible to try and gain the weight. I feel so bad for you. I wish your doctors would just listen to you. That is the problem, too many doctors are too busy trying to give orders and not listening when they should be. This is why so many patients end up worse off at times.


My mum comes with me quite often, but I think the doctors don't believe her either- they think she's enabling me, or that maybe I'm fooling her too, making myself sick while my mum is oblivious. The doctors will believe anything if they want to. I honestly didn't think this gastro would ever doubt me after I spent all those weeks in-patient being watched one-on-one by a nurse, twenty-four/seven. If she believes all that time when I was supervised by a professional, everything I eat being recorded, that I could still have somehow fooled them, no logic is going to change her mind; my mum vouching for me doesn't stand a chance.

It's so disappointing because during my weight-gain admission, the doctors and dietician believed absolutely that I was not deceiving them, precisely because I had such intense supervision and my weight still went down. I thought at the time it was extremely useful for them to have had me supervised, because it quickly took the eating disorder question out of the equation, and the doctors and dietician didn't need to be suspicious of it as had often happened in the past. Now it feels like I subjected myself to all the for nothing. My best hope now seems to be to see the other nutrition consultant who was involved with that admission, and hope she hasn't similarly changed her tune.


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## UnXmas (Oct 21, 2014)

dave13 said:


> Your doctors main concern is your weight.I worry about you nutrition wise.I would hate to see you shun something nutritious for something just to add calories to appease the doctors.
> 
> Within reasonable limits,I would think your doctors would listen more to how you feel than what you weigh.I would rather be under weight and eating well,fueling my body with what it needs than be at some predetermined 'good' weight and eat crap.I am like that,a matter of fact.I am a bit light,depending on what index you use.Our situations are quite different,but I hope this makes some sense.
> 
> ...


I agree. I'm having trouble with my stoma again; the surgeon and stoma nurses thought my latest stoma shouldn't block as easily as my previous two, but I've just started testing fruit out, and quickly got the stomach cramps again. So it looks like my diet will still be quite devoid of fruit and vegetables and whole-grains. Yet it still seems important to keep my diet balanced, and eat the fruits and vegetables that I can digest, ok, not keep stuffing myself with food I don't want, indefinitely, in the vague hope I'll reach some point where I can consistently maintain a reasonably healthy weight. I know my digestive system is only going to get worse, and the more I stuff myself, the quicker it will deteriorate. So this situation cannot go on.


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## UnXmas (Oct 21, 2014)

My weight is down 0.6kg today, because the blockage shifted and my stoma produced a massive output in one go, which it wouldn't normally do. I don't know how long I can keep this up for before I lose weight at an official weigh-in. :yfrown: Feel like giving up trying to eat enough sometimes.


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## UnXmas (Oct 24, 2014)

Official weigh-in at the doctors today. I'll check my weight on my scale at home before I go, so I don't get a nasty surprise. I had an awful upset stomach last night, had to get up about four times to empty a full stoma bag (btw, how is it that I automatically wake up when my stoma works?! I think I might start a thread on that in the stoma forum!) so I'm not confident about this.


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## syzygy (Oct 24, 2014)

I've just been catching up on some of your story.  What a rough go you've had of it. It's hard enough with all the physical problems you're having to also have to deal with docs who don't seem to be working WITH you (more like against you at times).  I'm wondering if getting an outside advocate (doc, health psychologist, case manager, ombudsman, etc.) could help.  I think that some hospitals have people to do that kind of thing.

Good luck with the weigh-in.


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## UnXmas (Oct 24, 2014)

I didn't gain today, so I've been set a weight-target of gaining a whole kilo by next week. I *hate hate hate* how they treat me like I'm doing this on purpose, that I could gain if I tried harder, and they ignore the fact that I have an upset stomach, the fact that before they made me eat so much they caused my intestine to block and perforate, that I keep telling them the more I eat, the faster my digestive system deteriorates, and it deteriorates permanently, that I need an excessive number of calories, and they know this, they kept my food record and supervised me in-patient for weeks, but they don't care about why, or consider how much harder that makes it to have to eat enough when my stomach feels awful _all the time_. I am getting *no* extra treatment of any kind to try and reach this weight target. Just the threat of: "If you don't make it, we'll put you in hospital. Where we will again make you eat so much your intestine could block again. And maybe we'll give you sepsis from keeping you on TPN when you clearly showed signs of infection, and even though last time we caused you paralysis from removing the TPN central line, just like we did before." :ymad: :ymad: :ymad:

I still can't even move my right-hand properly. 

Or am I fooling myself? I said I'd never go into hospital again if I could help it, I don't want to leave my dog again. Have I just not tried hard enough? Should I not be worrying about how the surgeon told me my intestine blocked because it couldn't cope with so much food, or about how ill I'll feel if I eat too much? Is it better (safer?) to just stuff myself, and stay out of hospital? What will happen if I eat until I'm sick? I almost never vomit, even when I'm very ill, I just don't seem to have much of a vomit reflex, or whatever you'd call it. Is that what would happen if I really just kept eating and eating? I tried to estimate my calories at the moment, and it is an estimate because a lot of what I eat is home-cooked and not in set portions or with clear calorie information like you get on the labels of prepared foods. But I worked it out as a minimum of 2000 calories a day - and almost certainly more, possibly more like 2500. I do no exercise other than short, slow walks, and I'm so tiny that I should have a slow metabolism and little mass to sustain, but I know that that's not actually the case - either I have a fast metabolism or I don't absorb everything properly. When in hospital, I didn't gain until I was eating well over 3000 calories a day, but I don't know how I can physically cope with that again, and that was what caused the blockage.


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## Layla (Oct 24, 2014)

I'm so sorry you're in this predicament!

I don't have any tips for you but just wanted to say that I understand how difficult eating must be for you. I'm a real foody who needs to watch my weight otherwise I balloon in no time, but even I was losing weight without trying or exercising because even just thinking about food made me nauseous. I don't vomit easily either and I just couldn't face another obstruction so I can see what it must be like for you.

What I don't get is that your dr's don't get that!:ybatty:

Is there any possibility of replacing your lead GI with someone a bit more understanding?

:ghug:


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## UnXmas (Oct 25, 2014)

> I don't have any tips for you but just wanted to say that I understand how difficult eating must be for you. I'm a real foody who needs to watch my weight otherwise I balloon in no time, but even I was losing weight without trying or exercising because even just thinking about food made me nauseous. I don't vomit easily either and I just couldn't face another obstruction so I can see what it must be like for you.
> 
> What I don't get is that your dr's don't get that!
> 
> Is there any possibility of replacing your lead GI with someone a bit more understanding?


I think I actually sympathise more with the overweight as a result of my struggles. I know exactly what it's like to feel your weight is out of your control, no matter what you do, and you have to constantly think about what you're eating, what you should or shouldn't eat, whether you have to eat in a way you hate for the sake of your health, and I understand, what I think the overweight must get a lot of - doctors placing the blame on them. Except that if someone is overweight, in theory they could always eat less, I guess; there's more of a limit when you're trying to eat more, and malabsorbtion issues could make it impossible to gain, even if you were able to eat what should be enough.

I'm hoping to get to see one of the the other specialist nutrition gastroenterologists that was involved in my weight-gain admission. She was nice at that time and did take my physical symptoms seriously, and never tried to tell me I had an eating disorder. She was the one who started me on prednisolone during that admission. Maybe she'll still be fine if I see her again, it's just that having the other gastroenterologist acting like she is has once again knocked my confidence in doctors - but that's unfair of me, this gastroenterologist may carry on being helpful. She was very insistent that I stay a long while in hospital and gain weight though, so I don't think switching to her would mean I could avoid threats of an in-patient admission, but it would be miles better to be being cared for by someone who gets what's wrong rather than someone who doesn't trust me and seems to have no cares about my physical health.

I've had so many doctors accuse me of eating disorders, Munchausen's and various other mental health problems. (And why do doctors make it an accusation? Isn't a mental illness an illness too? Why blame the patient and treat them like they could get better if they wanted to and put some effort into it?). So the way this gastroenterologist is behaving shouldn't have surprised me, but during the weeks I was there, because they'd had me monitored so very closely and recorded everything I ate and drank, they took my physical symptoms so seriously that it put the issue of eating disorders out of the equation. The dietician, the gastroenterologists and the nurses were all fine with me. I was so glad, actually, that I'd had that monitoring, because I thought now I'd really proven I wasn't hiding anything. 

This gastroenterologist who's causing the problem now was the one who initially arranged the admission, but I didn't see much of her when I was actually there, so I'm not sure if she was taking me seriously then and has now reverted to the eating disorder suspicions, or if she's suspected me all along, even when the other gastroenterologists and dietician were holding a different view. During my admission for surgery I also had a different dietican than the one I'd had during the weight-gain admission, and this new dietician was also convinced I had an eating disorder. Now I feel like I subjected myself to all that for nothing.  I did all that whole in-patient stay, and now I'm right back to having to constantly defend myself again.


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## UnXmas (Oct 25, 2014)

I felt very, very full yesterday evening, and did not feel like eating at all this morning, but I did. It will soon be lunchtime and I am still very full! My stoma has produced a fair bit of output, so I don't think it's a constipation thing, I think my stomach just isn't getting chances to empty between meals and snacks.

I may have to resort to what I did go gain weight when I was in-patient: tablespoons of butter. When I was in hospital, I ate tablespoons of peanut butter, but since doing that I don't want peanut butter anymore! So ordinary butter it is. Packets and packets of mayonnaise on my meals was also something I did in hospital, I will do that too. Perhaps I should just cut out everything except butter and oil and mayonnaise?! 

I've already given up most fruit and veg, I have maybe two very small portions of fruit and veg a day and some fruit juice for vitamins. I've also pretty much given up on low-calorie protein foods like yoghurt and fish and white meat and boiled eggs, and given up soup. I don't drink low-calorie drinks - it has to be fruit juice or hot chocolate or full-sugar Coke. I'm eating a lot of biscuits and chocolate, and homemade cakes and things, and my main meals are often things that are pastry based like pie or cheese flan, or a very small serving of some not particularly calorific carb like rice or pasta, but with a lot of cheese sauce or something. Sometimes meat like a burger. I have white bread with lots of butter and avocado. I think I could also change my breakfast; I've been having cereal with full-fat milk and sugar, but the cereal itself is a pretty low-calorie food with quite a bit of volume. Maybe toast with a lot of butter would be better?

I just hate this pressure. Even if I meet the target next week, it's not like anything will change, I'll be doing this indefinitely. 

So I'm off to a horrible start with this target: I feel very full even by my own standards, which is also making me worry I have a blockage. But my stoma is working, so that seems unlikely, but I'm paranoid about it now. I also have a gastric emptying study next week. I can't eat before it, but it's in the morning and they give you eggs or something to eat there, then the test lasts up to four hours and after that I can eat and drink as normal. So I guess as long as the egg meal they give you is a decent number of calories, I won't be missing out on calories as a result of the test.


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## DustyKat (Oct 25, 2014)

How tall are you UnXmas and what do you weigh? Sorry if I have missed this. 

When you lose weight do you keep losing or eventually plateau out? 

Dsuty. xxx


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## UnXmas (Oct 25, 2014)

I'm seriously considering water-loading (or more likely Coke-loading) when I'm weighed. Which is horrible because the doctors who don't trust me will now be right in that. But I'm desperate.  Please tell me: is this a terrible, terrible idea?


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## UnXmas (Oct 25, 2014)

DustyKat said:


> How tall are you UnXmas and what do you weigh? Sorry if I have missed this.
> 
> When you lose weight do you keep losing or eventually plateau out?
> 
> Dsuty. xxx


I'm 165cm and at the start of the Summer I was 29kg. Now I'm 32kg. (That's 5'5" and 63lbs at my lowest, 70lbs now). My BMI is around 10 or 11 I think.

I was a little underweight as a child, but only a little. I've been moderately underweight on and off since I started getting ill in my early teens, but was usually around 40 - 50kg. I did maintain a healthy adult weight a few years ago; for a couple of years I was over 50kg. Then I started losing slowly, then I started drastic weight loss over the last year or so: I had surgery and major complications afterwards, two further surgeries, and a stomach virus which ended me up where I am now (plus the emergency surgery a few weeks ago), and I've not been able to gain it back.


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## DustyKat (Oct 25, 2014)

I can see why you would want to do this but it will only feed into their suspicions if they realise what you are doing and that is something you can well do without.  

How much do you weigh?


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## UnXmas (Oct 25, 2014)

DustyKat said:


> I can see why you would want to do this but it will only feed into their suspicions if they realise what you are doing and that is something you can well do without.
> 
> How much do you weigh?


Sorry - I think we cross-posted. The details of my weight are above.


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## DustyKat (Oct 25, 2014)

Whoa. :ghug: 

Again, I am sorry if i have you repeating information…

Have you done a gastrostomy tube so you can be slowly tube feed? I only say gastrostomy as I don’t think an NG tube would be suitable in your situation. I can well imagine that being the weight you are consuming the calories required will be exceptionally difficult. 

How much are they acknowledging that malabsorption would be impacting on this? 

Whilst I understand the concern of the health professionals I fear this constant emphasis and focus on your weight will cause long term damage to your relationship with food. If you can’t achieve what is expected then stress and feelings of failure must surely rise to the surface. Lord knows many of those with IBD have a tenuous relationship with food as it is and understandably so. 

Dusty. xxx


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## UnXmas (Oct 25, 2014)

They tried an NG when I was in hospital, but my stomach wouldn't tolerate it, I had terrible diarrhoea with it. Plus they gave it to me when I was admitted, because they assumed, given my low weight, that I hadn't eaten anything solid for some time - but this was completely wrong, I was probably eating around 1500 calories a day before that admission. Once they realised my system coped fine with solid food, they got me just on that (plus supplements - lots of supplements!).

There had been talk about a feeding tube directly into my small intestine. The gastroenterologist - the one who now thinks I have an eating disorder - said I couldn't have it until I'd gained a lot of weight, as I wouldn't be able to cope with the surgery at the weight I am now. This turned out to probably not be true, since then I had to undergo an even more major emergency surgery, and I recovered far quicker than they expected, but I think they're right to not try elective surgeries at this point still. I had quite liked the idea of a tube, but then when in hospital there was another patient who had a tube, and the tube had rubbed against an ulcer, and I'd never seen anyone vomit so much blood day after day, I hated having to hear how much pain she was in while all of us other patients on the ward were having to carry on as if everything was fine.  I didn't like the idea of a tube after that, and I do feel totally worn out of surgeries and hospitalisations at this point. And I had TPN and that was a complete disaster, it nearly killed me when I got an infection from it, caused my blood sugar to drop dangerously when they stopped it, and caused temporary paralysis and loss of speech due to an air embolism when they took out the central line. After my last experiences, I never want TPN again, and would really rather have no type of tube at all. They just all seem so inclined to go wrong and cause more complications than they fix. 

I think my relationship with food got screwed up along time ago. Not just being forced into treatment for my "eating disorder" (I was treated in-patient and out-patient for it), but also by all the nutritionists who told me I had food allergies and mustn't eat sugar or processed food, and that food was evil and making me ill, etc. But mostly it's screwed up by the fact that eating really does make me ill, and a period spent gaining weight will always cause a rapid and permanent deterioration in my symptoms, which doctors refuse to acknowledge, and still insist on telling me various symptoms will get better when I eat more and gain weight, and they never do. The blockage came as a surprise even to me though. I knew eating more results in a poorer quality of life for me, but I never thought it could kill me. At least the wonderful surgeon told me that and didn't try to keep it quiet because it inconveniently contradicts the "more food is good" ideal like some doctors would.

The gastroenterologist who I'm hoping to see again, the one who prescribed prednisolone, did consider malabsorbtion, but she didn't have a clear answer on it. She didn't think there was enough inflammation to justify the difficulty I have putting on weight. My stoma output is usually of normal weight and consistency (they weighed it every day during both the weight-gain and the surgical admissions), and I've not had any nutrient deficiencies other than vitamin D at one point a while ago, though that has resolved. So it doesn't look like malabsorbtion. The only time there was clear malabsorbtion was when I had the NG tube. The only condition I could think of that would mean I need more calories is a thyroid problem, but I'm sure they must have tested me for that - that's a pretty routine blood test isn't it?


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## UnXmas (Oct 25, 2014)

DustyKat said:


> I can see why you would want to do this but it will only feed into their suspicions if they realise what you are doing and that is something you can well do without.


Yes I know. The one thing I can say is that I have been honest with them. And I also know that if I artificially increased my weight next week somehow, the next week I'd just have to increase it even more. At the moment all I can think of is making it next week, and not think about the week after that and the week after that.

And it's so awful that my digestive system has chosen today to be even worse than normal. It feels like my bowel could burst, I am so uncomfortable and don't feel like eating. I hoped the feeling would pass, and maybe my stoma would work a bit and things would move through. I'm paranoid about getting another blockage - when the surgeon told me the blockage had been building up over the weeks I was eating so much, I knew that the terrible terrible fullness I'd had over that time was from the blockage, and after the surgery it was so much better. But today it feels bad again. But my stoma is working. I'm still tempted to try taking laxatives when my intestine feels full, and see if I can move things through to get rid of the discomfort earlier. But I don't want to try laxatives now in case they cause weight loss. I'd ask my doctors, but I know the standard advice is never ever to take laxatives or even stool softeners with an ileostomy.


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## syzygy (Oct 25, 2014)

One things about asking your docs about laxatives is that it might feed into their beliefs about eating disorders.  Laxative abuse is a known compensatory measure used by some folks with bulemia.


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## UnXmas (Oct 25, 2014)

syzygy said:


> One things about asking your docs about laxatives is that it might feed into their beliefs about eating disorders.  Laxative abuse is a known compensatory measure used by some folks with bulemia.


Good point. 

I know my weight is dangerous, too. It's just that I would go in-patient again if I thought they could actually help me - do tests or start treatments that could prove a long-term solution. But I spent so long there and they could do nothing. All they did was bring on the blockage and perforation and all that came with it. If I'm going to be living with such a dangerous health problem, I'd rather accept that and live with it - not live in hospital.


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## UnXmas (Oct 26, 2014)

I think I've decided: I won't try water-loading, but I will wear heavy clothes.


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## dave13 (Oct 26, 2014)

Just don't put to many rocks in one pocket,you may lean to one side,even them out.


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## UnXmas (Oct 26, 2014)

Tomorrow I have a gastric emptying study, and I'm now worrying that, if the results come back normal, they're going to see my complaints of feeling full as eating-disorder fueled lies.


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## dave13 (Oct 26, 2014)

Try not to worry about results before you even have the test.Easier said than done,I know.You are not telling them a lie,try not to let them stress you out.


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## my little penguin (Oct 26, 2014)

Good luck
My oldest had a gastric emptying study 4 hour one - 2 hours isn't as accurate.
Even with normal results - erythromycin was trialed and made a world of difference on the ability to eat.
So maybe something to ask for


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## Susan2 (Oct 26, 2014)

What would be lovely, would be for you to go away somewhere on holiday, so that you could just forget about what you should be eating and how much weight you should be putting on. I am sure that the stress of the expectations - yours and all the medical experts - is part of the problem. If you could just be able to eat what you feel like eating and enjoy eating you might start to put on weight. :hug:


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## UnXmas (Oct 26, 2014)

I thought I may have found why my stomach has been particularly bad the last couple of days - I thought it was a side effect from a new med, which I didn't take today and today had been better, but now my stomach's getting worse again so I don't know what's wrong with it.




my little penguin said:


> Good luck
> My oldest had a gastric emptying study 4 hour one - 2 hours isn't as accurate.
> Even with normal results - erythromycin was trialed and made a world of difference on the ability to eat.
> So maybe something to ask for


I'm having the four hour one. And I get to eat eggs on toast for it, so at least it's not a test that involves fasting or prepping!



> What would be lovely, would be for you to go away somewhere on holiday, so that you could just forget about what you should be eating and how much weight you should be putting on. I am sure that the stress of the expectations - yours and all the medical experts - is part of the problem. If you could just be able to eat what you feel like eating and enjoy eating you might start to put on weight.


I think that too. I feel much better about eating when I eat balanced meals, with vegetables and other low-calorie things too, than when I resort to tablespoons of butter and peanut butter (which I've done in the past and am doing now), and can't risk filling up on anything low-calorie. I wish I didn't have this pressure, I wish I could just try and gain weight slowly, and maybe drop backwards a bit when I have a particularly bad day with my digestive system. I think this backfires anyway, because when I've stuffed myself with food I don't want, it just puts me off eating more. But I don't know what's best at the moment, how to convince them I don't need this pressure. :confused2:

Their approach seems messed up. And by "they" I mean the team of gastroenterologists and dieticians who specialise in nutrition. They deal with malnutrition in patients with physical illness, including IBD, but they also specialise in treating people with the most severe types of eating disorder - in the physical aspects of eating disorders and refeeding. But they're so neurotic, it's like they have obsessive eating disorders themselves. For example, a rule they give to all eating disorder patients (and me and some points during my admission) was that you had to use a wheelchair to go from the bed to the bathroom, because it saved burning calories. :ybatty: They set one patient with anorexia a specified time she was allowed to spend time brushing her teeth, because it burned calories. :ybatty: They wouldn't let her chew gum, because, chewing burns calories. :ybatty: Luckily many of the nurses who actually looked after us realised rules of this kind were ridiculous, and didn't make us follow them. But the consultants and dieticians always told us to, and it was all printed in our files.

I feel so much better and healthier when I take gentle walks with my dog every day, who cares about a few calories?

And the ironic thing - after my surgery I was on the surgery ward, being looked after by the surgeons (obviously!) as well as the nutrition gastroenterologists, and the surgeons kept telling me to get up and get moving - get walking, it is good for your recover from surgery! And the physiotherapist saw me and set me exercises to do, and told me to do them as often as I felt able. Though when I was really sick, right after the surgery, I used a wheelchair the first times I got out of bed to go to the bathroom instead of using the catheter - and I would have asked for a wheelchair if I hadn't been told to use one! I know what I can and can't manage.

So normality, and a release from the pressure of weight targets, would be very much appreciated!


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## UnXmas (Oct 26, 2014)

my little penguin said:


> Good luck
> My oldest had a gastric emptying study 4 hour one - 2 hours isn't as accurate.
> Even with normal results - erythromycin was trialed and made a world of difference on the ability to eat.
> So maybe something to ask for


I looked erythromycin up and it seems it's an antibiotic. Does that help with weight gain?


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## my little penguin (Oct 26, 2014)

It's taken in low doses about 30 minutes prior to eating 
Three times a day.
My kiddo before would only eat a few bites and be extremely nauseous full feeling etc...
The abx cause the stomach and small bowel to contract to move the food through effectively. Sometimes the stomach muscles don't contract the way they should so things don't move like they should.

Since it moves the stomach it helps grind up food more and increases appetite.
In the beginning stomach cramping is painfully but after a few days to a week it wasn't an issue any more .

My kid now eats normally plus has two or more snacks before bed -
None of which would have happened before
This is my non Ibd kiddo
Docs were going to look at gallbladder next if this didn't help


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## dave13 (Oct 27, 2014)

UnXmas said:


> Tomorrow I have a gastric emptying study, and I'm now worrying that, if the results come back normal, they're going to see my complaints of feeling full as eating-disorder fueled lies.


Thinking of you! Hope it went well.


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## UnXmas (Oct 27, 2014)

It went fine. I don't know the results yet. It didn't make me feel full though. The meal was pretty small - an egg on a slice of toast and a glass of water. The technicians seemed surprised that I ate it easily. They started telling me to eat the egg first, because that was the more important part in terms of the test, and then if I was struggling with the toast... and then they realised I'd cleared my plate! If I only had to eat meals that size, fullness wouldn't normally be a problem! I'd had to fast from midnight last night, so when the test started late morning, I'd not eaten for some time. If I'd been at home, I'd have had breakfast, a snack and an Ensure by that point, plus drinks: then I'd be feeling full! I think they must be used to patients with much more severe gastric emptying problems.


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## UnXmas (Oct 30, 2014)

The weigh-in today went fine. I didn't need to water-load. I did wear a heavy sweatshirt, and I'd had my usual breakfast plus one glass of orange juice and one glass of Coke. This week I was weighed in the morning, previously I was weighed in the afternoon, when I'd presumably have had more food and drink in me. My stoma bag was also completely empty when I was weighed this morning. So I think it will all even out. I gained 1kg since last week.

My GP was not happy at all about my refusing to see the gastroenterologist, but eventually agreed to send my to either the other nutrition gastroenterologist, who is also very keen about having me admitted in-patient, which I don't like, but who at least recognises and tries to treat the physical things wrong with my digestive system; or another gastroenterologist, who I saw briefly when I was in-patient gaining weight. He was the one who saw no point in me taking up a hospital bed when the only "treatment" I was getting was food, and discharged me and another patient with anorexia, when the first gastroenterologist's back was turned.  (And she was not happy about it!) So you can see why I asked to see him instead.

My GP gave me a lecture about how I see one doctor, get mad at them, then switch to another. Which is a bit unfair, since I didn't ask to switch, I'd have been ok without seeing anyone at all.  I also said I'd see any of the surgeons instead, whether they were the ones who looked after me during my emergency admission, or the surgeon who I've been seeing since 2007. You see, I do have some long-term relationships with doctors - I've been seeing the same urologist for almost as long, and this GP even longer (though we have our differences  ). But apparently I need a medical/nutrition/gastro consultant, not a surgeon.

But the doctor I don't want to see tells me that food doesn't make me ill, and still doesn't believe I can eat as much as I do and be so thin, and since these are the two cruxes of my weight problem, I don't see how she can help as long as she thinks like this. I spent all those weeks in-patient, having one-to-one supervision, twenty-four hours a day, to prove how much I eat and how it affects my weight, and the surgeon has told her that eating so much led to my blockage, so there is nothing more I can do to help her recognise what is wrong with me.

I know how it looks to keep changing doctors, but I can't see any other way. My GP came out again with stuff about sectioning me if I refuse to see anyone, pointed out she's responsible if anything happens to me due to my being underweight, but found it hard to answer when I asked her if she was responsible for arranging the admission which led to my blockage and perforation (she referred me to the nutrition gastroenterologist and had threatened me with sectioning back then so pretty much forced me to go). I hate how this makes me look and behave, that I'm saying stuff to hurt her, but it's the truth, and I'd rather do that than let the gastro. be involved with my care again.

So we compromised - I keep gaining, I see one of the other consultants, and she is aware of the risks of another blockage, though it's beyond her expertise to know what to do about it, and she feels it's safer for me to keep gaining weight and increase the risk of a blockage than the other way round, and I think that's fair enough.

Why are relationships with doctors so complicated?! Do other people have this trouble? Maybe I should start a thread on that.

We worked out I'm having about 2500 calories a day at present. I do a slow walk with my dog each day, from ten minutes some days, to maybe 40 minutes other days. The rest of the time I'm pretty sedentary. So gaining 0.1kg a week is less than it should be for someone of my weight eating that much isn't it? That's what I have been doing. 1kg this week, but part of that was a heavy jumper.


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