Nurse turned to patient

[SLadylani]

Hey all, I know I reply to a lot of the questions on here as the RN, but today I need to be the patient and really need support. To start, on Monday I lost my best friend. I had to put my 6 month old kitten to sleep as she had a rare parasite that suddenly began to show symptoms. It's tough as she is to one who kept me company through all the pain and hard times since I got my first place and have been out on my one. So I'm full of emotions right now.

On Tuesday I had to go to the ER yet again to get my bowels evacuated. I think I'm going to make every Tuesday my day to go to the ER now, as that is the thing that seems to work. I'll have the doctor write me a script for Go-Lytely bowel prep every week, drink it Tuesday morning, let it soften my insides, then go to the ER for thier chemically made enema. Tuesdays I will dedicate to pooping.

Per my ER doctor's insistence, I made an emergency appointment to get into my GI specialist. I knew what I wanted and finally I got a doctor to conquer with me; I need a bowel ressection surgery. That means 2/3 of my colon will be removed and the ends sewed together-no bag. At 23 this is rare which is why he is having a hard time understanding. Only problem is he doesn't do surgeries, so now I have to go through my primary doctor to get the referral to a specialist at UCSD, wait on the low-income insurance waiting list at UCSD-several months, and then most likely go through a battery of tests yet again, to prove to this new doctor that indeed my bowels do not function.

What I'm so frustrated about is I'm 23, almost 24 years old. My life consists around appointments and ER visits. I finally found a great pain management specialist, but haven't gotten to the root of the problems of course, so am still seeing the other specialists as well. And with my bowels not working, I now have to take up a whole day just to poop. I've applied for disability the first time-got denied once as they said I was too young...B.S....and am waiting for that, but am under severe financial constraints right now so have to start working as a nurse again. I'm wondering how I can do this if I have all these appointments in the day. How can disability expect me to work like this?

I'm on a pitty pot right now because I'm tired of going through this medical drama. I feel like I'm 23 years old but live the life of as 70 year old. I am no where near normal compared to other girls my age and my lifestyle is completely different due to all these stupid appointments and my malfunctioning body. I just want to be normal and not have these problems. I'm tired of it. I never really got to experience my late teens or early twenties and I see it as unfair, and others don't realize what I'm going through. I get judged a lot by doctors for my age, as they think a 23 year old couldn't have problems and must be a drug seeker or mentally ill.

I also have a recent history of severe anorexia nervosa that nearly killed me. I consider myself to have been in recover for over a year now. May be I was triggered by my Sashkia dying, or may be I'm just fed up, but it's just so frustrating that since I'm constipated all the time and my intestines are so swollen I have to wear baggy shirts or dresses and have to pass by all the cute clothes I want to wear. I feel fat just because my stomach is big, and am developing a fear of food again because I know whatever I put in me will show up in my stomache, and won't come out unless it's forced to. I'm going back to my old ways of trying to restrict and not liking my body, which is no way to live and means I'm in the eating disorder right now and need help.

I am just fed up with how long everything is taking and wish people would get it together to just make it happen quicker. I am tired of going through this and waiting on other people who don't listen to me or think I'm that important or crucial because they don't know how badly this stuff is affecting my life. I have a couple friends down here, but I know from experience not to talk about all my medical problems with them as they might get sick of me and run away. That's why I loved my cat, she's the only being I've met that was completely unconditionally loving.

Needed to get that out, I've been feeling weird and out of place all day. Probably should get to a 12 step meeting soon as that always makes me feel better and I haven't been since my kitty passed. I appreciate you all listening as I know many of you are going through this and understand. Any feedback, words of wisdom or comfort, anything that might lift my spirit would be much appreciated. Thanks guys.

Sara (RN) :)

[SLadylani]

Oh my gosh, I'm so sorry, you poor thing, you are going through so much. My heart trully goes out to you and I wish I could be there to be your nurse! Are they considering long-term placement of the J-tube? And how are you doing school right now? I did half of my high school years in a program called Home Hospital, similar to home school dut provided by the school district. And yes, I had the NG tube for anorexia unfortunately. Had it placed twice. It was horrible as they made you eat with it as well as receive feedings with it, so I somehow had to manage to swallow massive quantities of food down my throat. But fortunately, since I'm in recovery  for over 1 year now, I never have to go through that again :). I wish I could do more to be of help to you right now as this sounds really scary, but I will send you internet hugs and be sending my best thoughts and healing wishes your way. Take care,

Sara

[patient915]

They couldn't get the NJ tube down and in place so instead they are going to do a J tube probably.  In the mean time I am going to get a PICC line and get TPN for a while until the J tube can be placed.  Did you have to have the NG tube because of anorexia, if you don't mind me asking?

[SLadylani]

I am so sorry. I have had a NG tube before and they are no fun-but you do get use to them. Cold water and sucking on hard candy or cough drops helps. Just know I'm sending my best wishes and good thoughts your way. Take care of yourself, and I hope to talk to you when you get better.

Sara

[patient915]

I will reply more to you another time because I am still in the hospital and getting worse.  I am going to have an NJ tube placed tomorrow so I hope that all goes well.  Hope you are feeling okay.

[SLadylani]

Agh, I'm completely negative on money right now. The GI surgeon I'n being reffered to at UCSD may perform one before he removes most of my colon I would hope. And I had to learn the hard way that fiber is a bad thing for me-that led to an admission to the hospital for a bowel obstruction. So for now I keep it very low fiber, no bulk. During the day I eat small amounts, failry frequently, but at night I just have a habbit of doing most of my food intake there, which isn't the best thing I know. My primary still hasn't managed to find time to fax the referral over to the new doctor and I'/ve been calling over there every day. Having this low-income insurance is pretty ridiculous as I find dealing with the doctors is difficult as they just don't have time for you. Are you still in the hospital? And good news or acheivement towards stabilization? Sending good thoughts your way,

Sara

[patient915]

You might want to think about a gastric emptying scan if you can afford it.  You can also try the diet which is low-fiber low-fat and frequent small meals.  Thanks for your support.

[SLadylani]

I actually looked up what both disorders were. In a way the gastroparesis describes my problem, but that word has never been mentioned. Low motility is what the doctors always call it saying my GI system moves very slowly and has little movement. My stomache takes forever to empty which is why I have such a hard time with those infamous bowel preps, which are one of the only things that work for my constipation right now. I'm so sorry you're in the hospital, that's no fun. But I am glad you have some good doctors with you, that really helps, and that you have your computer with internet-that's excellent for boredom. I hope this flareup passes soon for you and this hospital stay will be short. I'm sending my best thoughts and wishes your way. Take care, :)

Sara

[patient915]

POTS is actually an autonomic nervous system disorder but gastroparesis is a stomach emptying problem.  I have a bunch of good doctors that are helping me now.  I am actually currently in the hospital because of a bad flare up.  I am unable to eat and drink which is the main reason I'm admitted, but I have some good doctors working to try and figure out what to do.  Thanks for your support too.  Let me know if you need anything.

[SLadylani]

Thank you again for responding. I am on a pretty much gluten free diet right now, I think. I don't obsess over looking at labels to look for traces of gluten, but I can tell you I pretty much eat only a select variety of foods a day, the only carb/fiber/starch being potatoes.. Occasionally I will have a peice of bread if my stomache is really bad.

The doctor never told me what he suspected caused the gastritis. He seemed to to be baffled by everything about me. But I thought as a specialist he would at least have some hypothesis... I'm hoping once I get to UCSD the doctor there will know more. I'm finding most doctors I've been to think in some way these issues are my fault, as I'm simply too young to be going through these things. However, I've met plenty of people on this website, as young as I, who have had ressections, or similar experiences as I.

I've heard of POTS and gastroparesis, I remember learning about them in school. But honestly I'd have to do some touch of research to remind myself of which of the GI disorders those are. Do you have doctors you can at least trust, or work with for now? That's what I find to be the primary key, finding a doctor who listens to you.

Thanks again for responding, and I'm sending painfree thoughts your way. Take care!

Sara

[patient915]

Ah, I can see why playing with your diet could be risky.  If you wanted to try a diet though the best ones are lactose free and gluten free.  The amount of fiber needed depends on the person.  For some people, high fiber works wonders, but for others (me included) fiber makes me a lot worse.  Does your gastritis have a known cause.  If you ask I think Morecambe, she knows about colon resections.

The doctors actually do know what I have.  I have a condition called POTS (postural orthostatic tachycardia syndrome) and gastroparesis, but neither of them are "under-control".

[SLadylani]

Thank you so much for responding! I realize my long post might have frightened people away... I wish I had the money or insurance coverage to try alternative forms of medicine, like acupuncture, but unfortunately I'm flat broke, which is why I somehow have to start working again-as early as next week. The most alternative I've gotten is taking herbal remedies for colon cleasing or constipation, which did help for a while, but they alway stopped working, just like the rest of the pills.

I have tried playing with my diet. It's a bit tricky, as like I said, I have the history of the anorexia, and I have to be careful not to go back to my old ways, as I never want to go back to that misery. As it is I'm already scared to eat anything solid as I know it will just appear in my belly the next morning and will never come out unless forced. That's why right now I do mainly juice smoothies and low-fat ice-cream, lol, which also helps with the depression from my kitty.

I thought I was lactose intolerant for years and avoided lactose. But now I discovered that doesn't seem to make a difference. Recently they thought I had Celiac's, so I avoided glucose, which did feel better initially, but took a toll on my body in the long run and did nothing for my bowels. I'm currently a vegetarian and have been for almost 18 years-as old as you are! My goodness. I also used to eat A LOT of fiber, I mean between 40-100g per day. I discovered fiber is not good for my bowels and actually once cause a bowel obstruction. So i just nod and smile now when doctors tell me my constipation will be better if I eat more fiber.

I do have to avoid certain foods like raw veggies, as I have severe gastritis and my stomache is very sensative. So basically right now i'm scared of food and scared to eat. Again, thank you for responding, and does anyone have any information about a colon ressection, which is what I will be having? I met someone today who told me I will have a temporary colonostomy, which scared the **** out of me, is that true in all cases and if so, for how long will that be? Any info or experiences would be great. Thanks!

And to patient915, I'm so sorry you're going through what you are at the age you are. Do the doctors have a clue what's going on? My heart goes out to you and I'll be sending my best wishes your way. Take care,

Sara (RN)

[patient915]

I understand what you are going through.  I am 18 and I have been sick since I was 15.  I am also doing worse currently; for the past 2 weeks I have been completely wheelchair bound.  I found that seeing a therapist helped me to cope with my emotions.  I am also going to try acupuncture (again) tomorrow to see if that will help me.  Have you tried lots of different diets (eliminating different foods)?  I hope you start feeling better soon.