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10-06-2014, 07:55 AM   #61
UnXmas
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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.
10-06-2014, 08:43 AM   #62
happyballerina
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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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10-07-2014, 04:48 AM   #63
UnXmas
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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.

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.

Last edited by UnXmas; 10-11-2014 at 05:19 AM.
10-11-2014, 04:50 AM   #64
UnXmas
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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.

Last edited by UnXmas; 10-11-2014 at 05:25 AM.
10-11-2014, 10:40 AM   #65
UnXmas
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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/...rexia-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?
10-14-2014, 06:00 PM   #66
Ihurt
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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..
10-15-2014, 04:19 AM   #67
UnXmas
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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.
10-16-2014, 05:45 PM   #68
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You could put rocks in your pockets for your next weigh in. :-)
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10-17-2014, 06:04 AM   #69
UnXmas
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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.
10-17-2014, 03:17 PM   #70
Ihurt
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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???

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]
10-18-2014, 03:24 AM   #71
UnXmas
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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.

Last edited by UnXmas; 10-18-2014 at 03:46 AM.
10-18-2014, 03:40 AM   #72
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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.

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.

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.

Last edited by UnXmas; 10-18-2014 at 05:35 AM.
10-18-2014, 09:30 AM   #73
Ihurt
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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 .
10-18-2014, 10:29 AM   #74
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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. 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.
10-18-2014, 02:40 PM   #75
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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?
10-19-2014, 03:46 AM   #76
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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.

Last edited by UnXmas; 10-19-2014 at 06:25 AM.
10-19-2014, 06:39 AM   #77
dave13
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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.
10-19-2014, 10:30 AM   #78
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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!
10-20-2014, 03:40 AM   #79
UnXmas
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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.
10-20-2014, 10:00 AM   #80
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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.

10-20-2014, 10:11 AM   #81
Ihurt
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Geez this is just a crappy situation all around that you are in.

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.
10-21-2014, 05:15 AM   #82
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Geez this is just a crappy situation all around that you are in.

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.
10-21-2014, 05:20 AM   #83
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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.

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.
10-21-2014, 08:02 AM   #84
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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. Feel like giving up trying to eat enough sometimes.
10-24-2014, 03:47 AM   #85
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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.
10-24-2014, 05:36 AM   #86
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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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10-24-2014, 09:48 AM   #87
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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."

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.
10-24-2014, 08:01 PM   #88
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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!

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

10-25-2014, 05:20 AM   #89
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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.

Last edited by UnXmas; 10-25-2014 at 05:40 AM.
10-25-2014, 05:39 AM   #90
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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.

Last edited by UnXmas; 10-25-2014 at 06:05 AM.
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