Help Please!

[margie]

I can no longer eat any food without vomiting within an hour afterwards. I need to know if there is any diet or foods that I can eat that won't make me nauseated or get stuck in my throat. Haven't eaten hardly any meats at all last 3 days and really only soft foods, but still can't hold anything.

I also need to find a GI doctor in Michigan that is good and not condescending or arrogant, because I have already been to so many of them and they are all about the money and could care less about me.

Any advice is really appreciated, because I am just about ready to lose it here. I slept most of the day again today because of becoming so weak.

 

[AndiGirl]

All of the vomiting is very scary and serious sounding. Are you sure you won't consider going to the ER? They cannot turn anyone away. I am very worried about you. I usually do not like going to the ER; however, the past couple of times, I had two very caring doctors that treated me like gold. They did the whole work up on me: started an IV to replace lost fluids, did the blood tests (inflammation check, potassium levels, etc.), gave me pain killers and anti-nausea medication, and sent me to the x-ray to make sure something more serious (obstruction, abscess) wasn't brewing. I don't know if I just got lucky, but the last two emergency room visits were very positive for me. I actually wrote a thank you letter to the hospital and the doctor for the terrific care that I received. I have never done that before.

 

[ameslouise]

Margie, for real, you cannot go on like this. You need to go to the ER.

And if you end up with a doc that is condescending and arrongant, maybe that's what you will have to deal with. I can't believe there isn't one doctor out there in your area that isn't an asshole. And if they're all assholes, just make sure they are smart assholes and can treat you. Am I remembering wrong or do you just cancel an appt with a potential new doctor????

It is not normal to vomit everything you eat. YOU NEED TO GET IMMEDIATE HELP!

I got my own fish to fry over here but I am seriously worried about you.

-Amy

 

[dreamintwilight]

I agree with what the ladies have to say. IF you are not eating, you must call your jerk of a doctor for help, go see another one stat, or check yourself into the ER. Organs start to shut down and malfunction of you are not eating and are becoming dehydrated from all the vomiting.

 

[margie]

I canceled the appt with the new doctor because I had decided to go back to my original GI that first diagnosed me.

ER for me is a very last resort and apparently the doctor on Friday didn't think it was serious enough to tell me to go in. When asking him what I can eat, he walked away and gave me no answers, I just don't know when it is serious enough that I need to go in or not. I have absolutely NO idea why my abdomen is so swollen and why he just dismissed it, but I saw him, and at least 3 other GI docs while in the hospital 6 weeks ago that pretty much did the same thing said I was normal and sent me home.

How am I suppose to know what to think?
What I am suppose to eat that doesn't make me feel this way?
When is it serious enough that I should go in?
Is this just all in my head and am I just crazy?
Maybe I am now, after all, I did hand him a list of symptoms that he said would consider me totally nuts for. He answered nothing for me. I did remember him telling the receptionist to give him my chart back so he can file it whatever that is suppose to mean. File me away, so he doesn't have to deal with me.

I know that most Crohn's patients have very visible symptoms and problems that come up in their colonoscopies, etc. Mine showed normal for the most part, however, my liver enzymes have been elevated for a while now, and I have had ulcers on my esophagus and stomach, and he did say the stomach was inflamed and I had thickening. This doctor I just saw said it could be several things as I wrote before. I just don't know what to do anymore, accept just deal with all of the pain, vomiting, diarrhea, etc,etc,etc. Just tired of not be treated for anything. And now I am starting to run out of my pain pills too.

Andi, Amy,and Marisa you three ladies as well as everyone here has been so supportive of me even through all of your own challenges, I am so thankful to have all of you talk too. I just don't have anyone, I don't really even feel like I can talk to my boyfriend anymore. I feel that he is getting to the point now where he is about had it with all of my complaints and constantly being miserable. I don't want to lose him, but I feel that I can't hide this from him either when he lives here. I hid all of my symptoms for so long and now I just can't.

 

[dreamintwilight]

Hey Margie.

I messaged a friend in the Michigan area about what doctor she uses and I copied her response below here. I know you said you tried the Univ. of Michigan, but maybe your doc just wasn't the right fit for you. Anyway...don't give up. Keep searching.

-----------------------------------------------------------------------------

I use Dr. Peter Higgins (or Kristen Boardman) at University of Michigan in Ann Arbor. I like him a lot... he's not written me off into a "last ditch effort" group of people. He still feels like there are things out there I haven't tried yet. I also kind of think that doctors are kinda like finding friends or significant others... you have you be able to get along with their personality. I feel like someone may have a good DOCTOR, but they don't like them as a person. Or they may like the doctor but not the nurses or secretaries. This is where I'm at with Ann Arbor.

I like the doc... and I like most of the nurses, but some of the nurses and all of the secretaries have sticks up their asses and won't do anything to help people out.

An example, when I was on my dads insurance I had to get a Humira refill and they refused to fax it over for me to Medco, so I had to do everything on my own (which I've never had to do on my own EVER on Humira). So I did it all and jumped through a bunch of hoops, almost missed a dose because of the time it took me to get it all set up through the mail. Well this year I'm on my husband's insurance and I needed a Humira refill written. The nurse goes "oh, we'll take care of it for you" and she got it all set up with Walgreen Specialty Pharm. I was so angry... why couldn't the first lady have done that a few months ago for me?

Its all give and take... I'm overlooking the auxiliary staff and just trying to see how much I do like the docs. If I have any other issues with the staff though I will pitch a fit. They also call me with blood results and just say "youre anemic" or "you have active Crohn's" instead of feeding me the actual levels. I'm sure they do this because they probably have a lot of poorly informed patients who wouldn't know or care what it meant... but I WANNA KNOW!

Hope this helps.

I use Dr. Peter Higgins (or Kristen Boardman) at University of Michigan in Ann Arbor. I like him a lot... he's not written me off into a "last ditch effort" group of people. He still feels like there are things out there I haven't tried yet. I also kind of think that doctors are kinda like finding friends or significant others... you have you be able to get along with their personality. I feel like someone may have a good DOCTOR, but they don't like them as a person. Or they may like the doctor but not the nurses or secretaries. This is where I'm at with Ann Arbor.

I like the doc... and I like most of the nurses, but some of the nurses and all of the secretaries have sticks up their asses and won't do anything to help people out.

An example, when I was on my dads insurance I had to get a Humira refill and they refused to fax it over for me to Medco, so I had to do everything on my own (which I've never had to do on my own EVER on Humira). So I did it all and jumped through a bunch of hoops, almost missed a dose because of the time it took me to get it all set up through the mail. Well this year I'm on my husband's insurance and I needed a Humira refill written. The nurse goes "oh, we'll take care of it for you" and she got it all set up with Walgreen Specialty Pharm. I was so angry... why couldn't the first lady have done that a few months ago for me?

Its all give and take... I'm overlooking the auxiliary staff and just trying to see how much I do like the docs. If I have any other issues with the staff though I will pitch a fit. They also call me with blood results and just say "youre anemic" or "you have active Crohn's" instead of feeding me the actual levels. I'm sure they do this because they probably have a lot of poorly informed patients who wouldn't know or care what it meant... but I WANNA KNOW!

Hope this helps.

 

[margie]

Marisa,
I feel that the GI I just went to Friday that you said was down right rude, is actually a good doc, but it is his personality and rude comments that make me crazy. Plus the fact that he just dismissed me like that and without any answers or even any treatment at all. I just don't know what to think about him now.

As far as going to other docs, it has a lot to do with my insurance which is a state funded insurance. I find that most do not accept it, and the ones that say they do, don't necessarily accept for everything, for example, this doctor said that he only will accept the insurance if I was an inpatient at the hospital, but after finding out I was a patient previously he said that he would. The new OB/Gyn doc, that I am seeing on Wensday will only accept for certain things. Makes no sense to me that they can do this, seems that if they accept the insurance it should be for everything and not some things. That is a lot of the problem that I am having right now.

I feel horrible again this morning, I ate some scramble eggs, and as soon as I started swallowing the first few bites, I felt horrible cramping in my stomach and ended up not eating anymore, it hurts to bad now. Told my boyfriend, that if this continues to much longer and at this rate, I will be back into the ER by mid next week because it is getting worse now.

 

[Jennifer]

Why not go to the ER now while its the weekend? As said already, they can do tests while you're there and make sure its not an obstruction you're dealing with (which can be deadly if left untreated). Having an ER visit also makes if so you can see other doctors quicker as your case is more serious than others and they will be able to squeeze you in. Its hard to find a good GI doc. My best one was 4 hours away from me. If I were you, I'd broaden my search for a good GI doc cause your health is more important than gas prices or any other reason that's keeping your search to one area.

Don't listen to the doctors who tell you not to go to the ER when they don't bother treating you in the first place. They don't know what they are doing and are putting your life in danger.

And yes, you should reach out to those who are closest to you. If your boyfriend loves you, he will do anything in his power to make sure you get the help you need. Have him go with you to the ER and to your doctor appointments so he can help stand up for you if you're not standing up for yourself. Don't let them brush you off.

But if what you mentioned earlier is getting worse now, go go go to the ER NOW not days from now. With the symptoms you mentioned at the beginning, that warrants an ER visit hands down. Tell them that you fear there may be an obstruction or that something else is inflamed causing you to not be able to keep food down for ___ number of days and your pain level and any other symptoms including feeling weak and tired all the time. My uncle had the same symptoms and he did have an obstruction and had to have emergency surgery otherwise he would have died.

 

[margie]

If it were an obstruction, wouldn't it have showed on a colonoscopy, endoscopy or one of the other x-rays that I have had? Why are all of my tests coming back normal?

As far as my boyfriend coming to my appointments and speaking to the doctor. The doctor policy is and I quote from his lips "I don't want them in the room, Husbands and significant others are just a pain in my ass trying to interfere between me and my patients."

 

[mario]

Hi Margie
Being from the Uk
I don't know how your medical service works, but I do know how you feel because i had exactly the same symptoms. Long story short.. I eventually stopped eating because of the agonising repercussions. My weight rapidly plummeted and by the time i had a diagnosis the surgeon refused to operate because he didn't think i would survive surgery. I was put on the elemental diet. This got my weight up enough for the op. Is there any possibility you could get this? It's prescription only here.Its pretty disgusting but i was symptom free for the couple of months i had it, so would highly recommend.

 

[margie]

What is an elemental diet mario? What did they say that you had, was it an obstruction? And what did they do for you in the couple of months before the surgery just the diet? My weight is fine so far, lost a few but nothing drastic yet to speak of.

 

[Guest]

hi Margie.... i would concur with the advice that's already been given by our members here, and say get yourself to ER as soon as possible.

forget protocol, forget what your doctor might say/think, and forget trying to figure it out yourself. you need help - and you need it now. if you were my friend living nearby and vomitting to the extent you are, with the other symptoms, i would drag her kicking and screaming to ER if i had to, and make sure someone there listened.

at the very least, you may need intravenous fluids, and maybe iv food supplement too... our bodies simply cannot carry on functioning without the right things going in.

if they check you out, and i'm over-worrying, and they find you're ok to come home and manage by yourself, then you can have a good old moan at me for wasting your time..... but please, just go. that's what they're there for.

 

[mario]

Elemantal is a predigested liquid food. It comes ia a carton and is a complete food which requires no digestion thereby giving your gut a rest. Yes i had an obstruction so food (even drinks) spent a while causing excruiating pain and then returned via vomit. What Dingbat said just reminded me that i also had intravenous food and fluids whilst in the hospital. Then i was sent hme with the elemental.
I also think you should go to ER asap. You are in a pretty dangerous place at the minute and i don't think your mind works as it should when you are like that. My family totally took over any decision making because i just dithered (and suffered)
Hope this is sorted for you soon
Love Marie x

 

[Terriernut]

Margie,
I think you have been told and told to go the ER. Why wont you go? Can you not afford it? What reason could there be for not going to the ER besides that? I'm gonna call you on this because thats the only reason I can think of.

You either get some help from there or so help me I'll fly over there and open a case of whoop ass! Dont make me do it!!!!

:hug:
Misty

 

[Astra]

Yeah Margie, why won't you go asap?
everyone is worried about you hun.
Don't do what I did and ignore this, I ignored it for only 6 days, constipation and vomiting, (I have never been constipated) I should've known something was wrong.
I soon did tho!
My gastro came to see me in hospital after 4 days, I'd been knocked out prior to that, so wasn't aware of what was happening.
He said to me 'we nearly lost you, you nearly died'
To say I was shocked is the understatement of the year!
Another hour of waiting, I would've ruptured.

There's a reason why you're vomiting, so go and get it checked, NOW!

xxxx

 

[Jennifer]

If it were an obstruction, wouldn't it have showed on a colonoscopy, endoscopy or one of the other x-rays that I have had? Why are all of my tests coming back normal?

As far as my boyfriend coming to my appointments and speaking to the doctor. The doctor policy is and I quote from his lips "I don't want them in the room, Husbands and significant others are just a pain in my ass trying to interfere between me and my patients."

No it would not show in any scopes if it were in your small intestine where scopes cannot reach. As far as the x-rays, unless you had them done a few days ago, no, they would not show your obstruction. Sounds like any procedures you had were 6 weeks+ ago and you may have only had the beginnings of an obstruction then or it may not have started at all.

With Crohn's its common to have a distended abdomen from time to time during a flare but not vomiting as often as you are along with all the other symptoms. You still need help.

As for the rest of your post, that's not a doctor worth seeing and should be dropped like a bad habit. Try to find a new GI while you get to the ER (hopefully you already left though). I've never met a doctor who wouldn't let a significant other or parent in the room with me. Its absurd.

 

[SwtNdSpcy]

Please go to the ER. Your GI is not the be all end all, and you have to listen to your own body and do what you need to. If that means going around your GI, then do it.
I have gone around mine MANY times when I KNEW something was wrong but the GI wanted to wait things out. Twice it turned out to be abcesses in my small intestines, which Crabby already said would not show on large bowl scopes if they are in your small bowel. Once, a mere month after I had a "markedly improved" colonoscopy I became seriously ill and went to the ER. It saved my life. I had a strangulated bowel obstruction (in the same area I kept having abcesses) and they immediately admited me, put a NG tube in, waited a couple hours and decided they could not wait any longer for surgery in order to save my life.
My ER visits also found an incisional hernia, a fistula leading from my small bowel to my colon, and multiple nutritional deficiancies. All of which my doctors might never have found because they kept insisting I wait it out.
At the very least, it is nice after being sick for so long to go in and have IV fluids anti nausea meds (the REALLY good IV kind) and maybe some pain relief if needed.

 

[SwtNdSpcy]

I should also mention.. I have problems with chronic vomiting and it can lead to low potassium levels. I have been hospitalized for severely low potassium levels after going to the ER because I had been so sick for quite some time. Severely abnormal potassium levels can lead to heart arythmias and heart attacks.

 

[Crohns08]

I agree with everyone else, Margie. You could be having an obstruction and if it perforates you will be in a DIRE situation. Please go to the ER, it's better safe than sorry. You only have one life, if something happens you don't get a second chance.

 

[margie]

I appreciate all of your support, haven't been on much last couple of days to respond to anyone because of being so depressed lately. I don't like docs or hospitals and avoid as much as possible.

Update:
Saw an OB/Gyn doc this morning, rather than going to the ER. I know I am bad, please know that I appreciate all of your advice...I really do. Misty, don't give me a whoop ass.....lol....this doctor performed a pelvic exam and said that there was nothing visual, however, she is doing a Pelvic Ultrasound tomorrow morning and I am going to have a Fistulagram Friday morning at the hospital. She thinks that there is a possibility of a fistula. I hope not, but then I just want to know what is causing all of these problems and if it is then at least I will know.

I need to do some more research on fistulas, don't know anything about them, what causes and symptoms and treatments are for them.

 

[Jennifer]

Here's info about fistulas. There are different names but really that just means the location of the fistula. http://ibdcrohns.about.com/cs/relatedconditions/a/fistula.htm

 

[margie]

Now I am Really CONFUSED HERE!!!

What is a Fistula, and why has she ordered a Fistulagram. From what I can understand a fistula connects somehow to the kidney and checks the blood flow. One site says that it is just an x-ray and another says that she was actually sedated. What am I facing here and how serious does this doctor think this is if she has ordered this for me and I go in Friday morning.

I always thought, but guess didn't understand, that it was like a tear between the intestines and different organs of the body like the vagina, bladder, etc.

I feel so stupid here

 

[AndiGirl]

It's been my understanding that fistulas can develop anywhere. If one occurs between intestines, it may not even cause a problem. It's when it interferes with other organs or processes that it becomes a problem (ie: an intestinal fistual draining fecal matter into the bladder). I'm still learning about them myself.

I'm glad to see you back on line, Margie.

 

[dreamintwilight]

Andi is right, but I wanted to add that they can also cause "problems" even if the connection is not to another internal organ. I had fistulas in my small intestine that became infected and created an abscess in my abdomen. While it wasn't necessarily affecting one of my organs, it still is considered serious because if abscesses burst, all of that infectious fluid can cause sepsis, which is deadly.

The purpose of a fistulagram is to see where the fistula (if you have one) leads to. They want to know if it's connecting to any other organs or other areas of the body where fluids could be building up or potentially could build up. They will most likely inject dye into the passageway and then take x-rays to pick up where the tracks are leading. I wouldn't think sedation would be necessary, unless the insertion of the dye causes pain.

 

[margie]

I am confused as to what a fistula actually is. I have read a couple of different sites and am still not understanding exactly what they are

 

[Lisa]

margie -

A fistula is an abnormal opening in the body, which can be either from the inside out (like a perianal one - from bowel to outside the body)...or internal - connecting 2 loops of bowl to each other, your intestines to the bladder, or even your intestines to your reproductive organs (such as a recto-vaginal fistula).

They can be cured, I had some which were cleared up with Remicade- others here have had the same results, although it doesn't work 100%.

 

[Jennifer]

In my mind I always envisioned something like a worm hole where there's an opening and it connects to something else be it other parts of the intestine, organs, makes its way to the outside of your body etc.

That link I posted gives the definition of what one is. "A fistula is an abnormal tunnel connecting two body cavities (such as the rectum and the vagina) or a body cavity to the skin (like the rectum to the outside of the body)."

 

[margie]

Thanks Andi, good to be back with all of you. And I want to thank all of you for explaining that to me. Just still scared about all of this. I have had to deal with the D and vomiting for many years, so it is nothing new, but all of these latest symptoms I have never had before.

Well tomorrow morning I have the pelvic ultrasound, first on the list from the new OB/Gyn doctor, who by the way, didn't even hesitate to say that because I have Crohn's that it is most likely a fistula, but wants to run these tests to make sure that is what is causing all of this.

 

[margie]

Had my pelvic ultrasound that showed nothing out of the ordinary, and once again they said that the problems that I am having are probably a GI problem. I also had a urine test run which showed clear and a pelvic exam which showed that I now have a prolapsed bladder. Just what I need is another problem to deal with, like I don't have enough. Tomorrow morning I go for the fistulagram, and I am still waiting on the preauthorization for the pill cam to be done. This GI docs office said they were going to check and call me back but as usual the office hasn't called me about having it done or what the insurance company has said. So here I wait once again.

 

[Jennifer]

It's not that you're waiting for a call from them, they are waiting for a call from the insurance company. It can take FOREVER to get a call back from them it seems. Keep calling the office just in case (at least before they close for the day) and see if they have heard anything yet. If not, hopefully tomorrow as the weekend is coming up.

I know it sucks to find out that you have another issue to deal with but the bright side of that is knowing that there's an issue in the first place and you can deal with that before it gets out of hand.

 

[margie]

I know, I am sorry, just so frustrated is all. I guess I was just surprised at the fact that there was a problem there when I didn't actually go in the office other than to have the ultrasound done and then to come out with the prolapsed bladder. I am glad that she found it now so that it can be taken care of though. Just wasn't expecting it is all.

 

[Jennifer]

Maybe my posts sound like attacks or something. I'm just depressed so I don't add smilies often and I'm just blunt in general which I guess can make me sound uncaring in a way. Guess I meant to say, sorry about the bad news but at least you know now rather than later.

 

[margie]

You didn't sound like you were attacking me at all CrabbyRelish, how could you, you are a very caring person.

I have just had a bad day too, and a couple of violent episodes of vomiting making my throat really sore today, so I am really depressed and down. So anymore problems just added to the frustrations that I already have.

 

[margie]

Update:
Another accident this morning, and been in the bathroom about 4 times in a 2 hr period. Had the fistulagram this morning, the doctor that did it said that he didn't see anything there, but if it is tiny that he might not. Have to wait a few days to get the results back on both the Pelvic Ultrasound and the Fistulagram. As usual, the scheduler for the fistulagram told me that there was no prep and when I got there, the doctor asked if I did the prep, talk about frustrating.

I finally received the authorization to have the pill cam done. I will be having that done on Tuesday next week. Hopefully after the pill cam I will get some answers, at least I hope so.

Thanks everyone for your support

 

[Terriernut]

I really hope the pill cam can get you some answers!

Sorry you are having such a rough time of it Margie.

Sending hugs,
Misty

 

[margie]

Thanks Misty,
Lost some weight recently, about 6lbs so far. Just want some answers and to be on some kind of treatment to stop all of these crazy symptoms I am having. Being incontinent is horrible, haven't had it this bad EVER. I was all ready to walk out the door this morning to the warmed up running car, when low and behold I stood up only to have an accident and yet again ruin another pair of my underwear. Hell I have no money or clothes to begin with. Just really frustrating.

I walked into the hospital this morning to have the fistulagram, and one of the first things that came out of the receptionists mouth was" here is a card to the billing department. You do know that you have an outstanding bill with us Right?" Like I needed anymore stress to deal with. Oh and yesterday I got 2 shutoff notices for my electric and gas. Forget that the county, state and IRS bothering me for money that I don't have either.

Sorry just needed to vent.

Sometimes, I really just don't even want to get out of the bed. What is the use anyways. It is just another day of the same thing. So depressed and down right now. I sure hope that the pill cam can give me some answers because nothing else is.

 

[Terriernut]

Sounds like your plate is full of trouble. Times like this I wish I was a secret millionaire, but I'm not!

Depression is normal in circumstances like yours, but it can be treated! Ask for a little help in that dept from your normal Dr. It wont make the trouble go away, but it will help you to deal with it.

Cyber Hugs, :hang:
Misty

 

[sherry3535]

Margie,
I am so sorry you are going through all this! I really hope and pray that the pillcam shows something for you so that you can get some answers
I know exactly what you are gping though and it is so frustrating to have these horrible problems going on and not know what is causing them! I know what its like to have accidents, I have ruined so many pairs, and for me since the last surgery I had that I wish I didn't have it is so much worse for me now! I never expected my life to be like this at the age of34 and it has been going on for me for almost 4 yrs
I am dreading the fact that baseball season for my boys will be starting soon, for the first few weeks there are no bathrooms and then the porta pottys come, yuck! I'm sorry I staryed to vent! Please keep us posted and know that I am here for you as well if ypu want to talk! :hang:z

 

[margie]

Misty,
I had some help with the depression, the problem is that all of the meds that he gave, the side effects, were Diarhea, which certainly isn't what I need right now. I am going to try them again, but am afraid to. I talked about him putting me on something else before and he did but same side effects. Looks like I am not going to have much of a choice.

Sherry,
Are you saying that you are worse after the surgery? And what surgery was that? I don't go anywhere anymore without a pair of underwear and wipes in my purse now...I can't. Never knowing when it will hit me.

You never need to apologize for venting, we all need to. I am just thankful that I have people here in the forum that I can vent too, that understand what I am going through. Over this last week, I have had to pretty much shut down as far as talking to my boyfriend or anyone about how and what I am going through. I have reverted back to the hiding and not letting any of them know exactly what is going on. Just can't talk about it to them. They try to understand, but they just don't get it.

 

[Terriernut]

Very few people can understand what it's like for crohnies. Like how we squeel with glee when we can get a 6 pack of undies for £1. And we buy like 10 packs!

All the accidents, the pain. The not wanting to leave the house! The Drs who cant tell us what the heck is the matter with us for YEARS. Yup, venting is allowed here!

Misty

 

[margie]

Misty,
You sure have that right. I am so thankful every day that I found this forum and all of you wonderful members that help me each day. I don't know what I would do besides cry every day without all of you to talk too.

Thanks all of you!!!

 

[StarGirrrrl]

Good luck with your Pill Cam Margie! It seems to be a good test. I had one booked but the Hospital then said I couldn't have it after all. So seeing GI Wednesday and will see what he has to say.

 

[margie]

Thanks StarrGirrrl,
I had the pill cam years ago when I was originally diagnosed with CD, so I sure hope that I can get some answers from it. It took a week for the insurance company to finally approve the test. So now, just have to make it till next Tuesday to have it done.

Why did the hospital say that you couldn't have it? What is up with that?

 

[StarGirrrrl]

Well I had a scrappy little letter in the post saying it was most useful in patients who were anaemic through suspected bleeding of the small bowel. And my FBC was fine so guess I don't tick all the boxes! Going to complain anyway but will see what GI says, he wanted it but it has to be approved by the Nurse who sent me the letter. And see if there is a right to appeal.

 

[margie]

StarGirrrl,
When I first became ill with this disease, I went through every blood test, x-ray, etc that there was and all of them came back normal. The only test that showed up anything was the pill cam. Please push for it, especially if all others are not showing anything wrong. I don't quite understand why a nurse should have any say in your treatment as far as testing goes. That I don't understand, that should be the doctors decision not hers.

I hope that he does the pill cam inspite of what she says. I feel that test with taking pictures every 6 seconds as it goes down the digestive track would be the one that will give you the answers that you need.

Hope it goes well with your doctor. I would definitely be appealing that decision.

Keep me posted

Big Hug

 

[mario]

Thinking of you Margie.
It makes me sad to think you are suffering so much.
My mantra is - 'human body, bad design'!!
Keep ranting babe, it's good for the soul
Hugs
Marie xxx

 

[StarGirrrrl]

Thanks Margie! My CRP (inflammation in the body, should be 0-10) has been 22-24 for 4 years and is now rising, last but one was 36 and i'll get the latest Wednesday. And a WBC scan of my guts found inflammation there. But despite this the normal colonoscopy/biopsy and Barium meal I feel are outweighing the abnormal. And I made that mistake a few years ago when they fobbed me off with "it's IBS, the CRP is probably cystitis", as a lady, i'm sure you'll agree when I say you KNOW when you have the latter, lol.
He did my B12 for the first time and certainly feel if that comes back normal I need to see another GI because this one is not great.
It needs approval due to finances, so I did offer to wait until the new financial year which is not far away.

 

[margie]

StarrGirrrl and mario
Sorry I hadn't responded back, just very saddened tonight with the loss of a family member. Was writing a poem to give to her family tomorrow at the funeral. Just very down, very depressed and very sad tonight. Hopefully my poem will put a smile on their face and they can celebrate her life rather than mourn. She was truly one very special, loving and caring lady and will be missed. I was honored to have known her. Sorry, going off subject here.

 

[AndiGirl]

You don't need to apologize, sweetie. When you are mourning or grieving that affects everything, including your health. It's bad to keep things in.

 

[margie]

I just hope that I can make a 4 hr drive there and sitting through the service and a 4 hr drive back all tomorrow with no accidents like I had today. I sure don't need to have that happen on top of all the crying that I am sure to be doing tomorrow or I should say later today, beings that I am leaving here in about 5 hrs and haven't been able to go to bed and get any sleep. Probably gonna just put a pot of coffee on and stay up now, otherwise, probably won't be able to wake up to go. Looks like I will be pulling an all nighter to get through this funeral. And probably be sleeping a lot next couple of days.

 

[ameslouise]

Margie - take care of yourself. Pulling an all-nighter is not going to help. You need your rest.

And make sure you go on the drive prepared - being an extra pair of undies or two and a change of clothes.... just in case.

Hang in there - Ames

 

[margie]

Amy,
I managed to sleep for at least a couple of hours before I left yesterday morning. And to be on the safe side, I did end up putting some undies in my purse...thank God didn't need them though. I have another big day tomorrow and hopefully everything will go ok

I have the burial in the afternoon tomorrow, but have to start the prep for the pill cam right after lunch....oh wait a minute....what lunch?...I don't usually eat but one meal a day because I can't keep much down anyways, but I guess that means noon. Then all I get is clear liquids along with the gas x prep and lots of water. Nothing after 10 tomorrow night either.