I went to the doctor today, and I'm just so frusterated! It all started about 3 weeks ago when I had chest pain on the right side, so I went to my primary doctor and got a x-ray which turned up normal, then the next day I went to the er and got blood tests which also turned up fine. So the day after that I got an ultrasound which showed I have gallstones. Since then I've been on the elemental diet and the pain has gotten better, but I'm worried once I start eating my pain will come back. So I went to the doctor today and he wants me to get blood tests, a hida scan and this thing where I swallow a camera pill the size of my thumb! On top of all this my perianal disease is flaring up and the flagyl doesn't seem to be helping with the pain, so he thinks I may also have inflammation on the inside as well. Sorry if I sound whiney, It just seems like everything is going wrong!
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I'm so fed up!
- Thread starter Dogluv
- Start date
Crohn's 35
Inactive Account
Hey you are intitled after all that! Been there done that! Problems with pill cams is they can be missed as it takes 30 thousand pictures or more and they skip to a few areas which could be missed so hopefully you do get some answers there. As for gallstones I had those too and thought I was having a crohns attack. I had the gallbladder removed with day surgery, and laproscopic, no way was I going throught that pain again... With the perianal disease I would think he would put you on Remicade for that. Are you in the US?
Hang in there, I know you feel like you are going in circles!:runaway:
What is a hida scan?
Hang in there, I know you feel like you are going in circles!:runaway:
What is a hida scan?
A hida scan is where your injected with Radioactive tracer that travels through the bloodstream to the liver which enters the gallbladder, and finally the small small intestine through bile flow, and while this is happening a gamma camera is taking pictures continuously for about an hour. It will hopefully give me some answers about my gallstones. If that's what's causing my pain.
Im in the us, and I've been on remicade in the past but I was sick all the time, and my hair was falling out so I decided against it. I think my doctor is thinking I may have inflammation on the inside because of the perianal inflammation on the outside so I believe that's why he wants to do the pill camera thing, put he showed me the dummy pill and I don't know if I could get that thing down without choking! Did you have trouble with it?
Im in the us, and I've been on remicade in the past but I was sick all the time, and my hair was falling out so I decided against it. I think my doctor is thinking I may have inflammation on the inside because of the perianal inflammation on the outside so I believe that's why he wants to do the pill camera thing, put he showed me the dummy pill and I don't know if I could get that thing down without choking! Did you have trouble with it?
I'm sorry you're not feeling well! I hope your doctor can get you on some treatment quickly so you can feel better! Don't worry about reintroducing foods now... take it one step at a time, you didn't have problems reintroducing foods last time, right? For how long are you doing the elemental diet?
Thanks Tess, I was actually just going to message you and ask about your sons ng tube, my doctor thinks if my crohns is actually flaring (which would be odd because I'm not having any symptoms, except my gallstone pain, and perianal disease inflammation) that I should consider either imuran or the ng tube feedings. And I'm definitely thinking I'd rather do the tube feedings. I was wondering how big the tube is and if he had any discomfort or throwing up when he was first learning to put it in? because when I had one in the hospital the inside of my nose was really painful and irritated, and I threw up while they were putting it in. But I guess the tube I had in the hospital could've been bigger then the one I would use for the night feedings.
As for the diet I think Ill probably be doing it until I have all my tests done and my doctor has an idea of what's going on, but he did say that I could eat a little something for the holidays, as long is it's bland and easy to digest.
As for the diet I think Ill probably be doing it until I have all my tests done and my doctor has an idea of what's going on, but he did say that I could eat a little something for the holidays, as long is it's bland and easy to digest.
Hi,
Stephen did not have much difficulty with the tube. The tube is very thin, perhaps the thickness of a pencil lead or a thin hair elastic??? It is also very flexible. You do have to overcome the gag reflex and Stephen did gag on it the first couple of times, but only for a moment and never enough to be sick. Before he tried it, I suggested that he try to visualize how tiny it really was compared to the size of what he would normally swallow. He was told to drink water as he inserted the tube, in essence he 'swallowed' the tube (for weeks/months now, he hasn't even used the water anymore). I would say that after two days, he was 75% comfortable with inserting the tube and within one week, maybe even less, he was 95% comfortable with the insertion. The first few days, inserting the tube would make his eyes water... he said it felt like when you get water up your nose... And, he did find the sensation of having the tube in his throat annoying for the first couple of days, but this went away fairly quickly (especially since most of the time he was sleeping...).
Dogluv, I've never done it, so I can only tell you what I've seen through Stephen - there are other people here who have said they had more difficulty with it, so I don't want to make you feel that it 'should' be easy... Stephen wasn't given much of a choice - at diagnosis, we were told "you have to use this tube as treatment and, oh, by the way, you can use steroids but there's lots of side effects so that's why you're using the tube... unless you'd like the steroids". LOL They really didn't make it sound like Stephen had much choice so I'm sure this affected his mindset... he HAD to learn because, as far as we knew, there was no choice!
Also, to give you some perspective... he is a very picky eater - would literally gag if a pea somehow got in his mouth; he's also a bit clumsy - he had as much difficulty, if not more, cutting the tape to hold the tube in place than he ever did in learning to insert the tube! LOL (I think because it's a fabric-type tape, it's harder to cut???)
He went for an MRE a few weeks ago and took his tube and pump because his preference was to use the tube rather than drink the prep (ended up that the prep didn't taste as bad as he'd anticipated).
I hope you can get the tests done quickly and off the diet just as quickly!!! I'm not really sure what the symptoms are of perianal disease??? Would fissures be part of perianal disease? Stephen has had some and he's found that the sitz baths with epsom salts really help.
I hope that helps... :ghug: Let me know if/when you do go ahead with the tube.
Stephen did not have much difficulty with the tube. The tube is very thin, perhaps the thickness of a pencil lead or a thin hair elastic??? It is also very flexible. You do have to overcome the gag reflex and Stephen did gag on it the first couple of times, but only for a moment and never enough to be sick. Before he tried it, I suggested that he try to visualize how tiny it really was compared to the size of what he would normally swallow. He was told to drink water as he inserted the tube, in essence he 'swallowed' the tube (for weeks/months now, he hasn't even used the water anymore). I would say that after two days, he was 75% comfortable with inserting the tube and within one week, maybe even less, he was 95% comfortable with the insertion. The first few days, inserting the tube would make his eyes water... he said it felt like when you get water up your nose... And, he did find the sensation of having the tube in his throat annoying for the first couple of days, but this went away fairly quickly (especially since most of the time he was sleeping...).
Dogluv, I've never done it, so I can only tell you what I've seen through Stephen - there are other people here who have said they had more difficulty with it, so I don't want to make you feel that it 'should' be easy... Stephen wasn't given much of a choice - at diagnosis, we were told "you have to use this tube as treatment and, oh, by the way, you can use steroids but there's lots of side effects so that's why you're using the tube... unless you'd like the steroids". LOL They really didn't make it sound like Stephen had much choice so I'm sure this affected his mindset... he HAD to learn because, as far as we knew, there was no choice!
Also, to give you some perspective... he is a very picky eater - would literally gag if a pea somehow got in his mouth; he's also a bit clumsy - he had as much difficulty, if not more, cutting the tape to hold the tube in place than he ever did in learning to insert the tube! LOL (I think because it's a fabric-type tape, it's harder to cut???)
He went for an MRE a few weeks ago and took his tube and pump because his preference was to use the tube rather than drink the prep (ended up that the prep didn't taste as bad as he'd anticipated).
I hope you can get the tests done quickly and off the diet just as quickly!!! I'm not really sure what the symptoms are of perianal disease??? Would fissures be part of perianal disease? Stephen has had some and he's found that the sitz baths with epsom salts really help.
I hope that helps... :ghug: Let me know if/when you do go ahead with the tube.
Thanks for all the info, it really helps knowing your son did this and I'm sure if I have to I will be able to. I really don't know why my doctor thinks the night feedings may work differently, I think he said something about good results from a recent study, and I guess getting nutrition day and night is better then just getting it during the day.
My perianal disease is the main cause for concern, he thinks if theres inflammation on the outside maybe there's some on the inside. The perianal disease is awful, I do have fissures that hurt very badly, along with skin tags and just general inflammation, and the flagyl just dosent seem to be working, so ill will defenatly try the sitz bath like you said. Tomorrow I'm scheduled for my scan, so I'll keep you posted on the results. Thanks so much for all your help! And tell your son thanks for me to!
My perianal disease is the main cause for concern, he thinks if theres inflammation on the outside maybe there's some on the inside. The perianal disease is awful, I do have fissures that hurt very badly, along with skin tags and just general inflammation, and the flagyl just dosent seem to be working, so ill will defenatly try the sitz bath like you said. Tomorrow I'm scheduled for my scan, so I'll keep you posted on the results. Thanks so much for all your help! And tell your son thanks for me to!
Crohn's 35
Inactive Account
I hope all goes well, and yes I did have a hard time with the tube but it went down my nose and the techs put it in the first time into my lungs...so they had to retry ...again.. I was panicky inside and they said I was the best patient... too bad they werent in my head but I got to see the barium go through and it calmed me.
The scan went really well yesterday, my tech was nice, and the radiation moved through my liver and gallbladder so I didn't have to get morphine (thank goodness!). It was actually a pretty easy test, first I was told to lay down on a long table and they injected me with the radiation, then they took a picture with a machine that went over my stomach area which lasted about a minute. After that I was told I could walk around for 15 minutes then I got another picture And so on, I think in all I had 5 pictures. I'll probably get the results on Monday so I'll keep you guys posted.
Penn, that had to be terrible to have it go down your lung! When I had mine in the hospital I had two nurses shoveing it down together so I couldn't control anything, I think I would've like it better if I could of done it myself.
Penn, that had to be terrible to have it go down your lung! When I had mine in the hospital I had two nurses shoveing it down together so I couldn't control anything, I think I would've like it better if I could of done it myself.
Pen, what a horrible experience that must have been! Ughh! By the way, what a gorgeous baby!!! Sooo cute!
Dogluv, I wonder if the tube you had in the hospital was different (you too, Pen)??? I know when we have to place new orders for Stephen's tube, there are specific sizes... Maybe the tubes that you both have used were bigger??? Might be something you want to ask your doctor about, ie. if there are different sizes for NG feeding (just FYI, the size of Stephen's tube are 6-FR).
Good luck for Monday - hope all turns out well.
Dogluv, I wonder if the tube you had in the hospital was different (you too, Pen)??? I know when we have to place new orders for Stephen's tube, there are specific sizes... Maybe the tubes that you both have used were bigger??? Might be something you want to ask your doctor about, ie. if there are different sizes for NG feeding (just FYI, the size of Stephen's tube are 6-FR).
Good luck for Monday - hope all turns out well.
Crohn's 35
Inactive Account
This is my step grandson, Brayden, he is the happiest baby I have seen and I have 14 neices and nephews and 6 great ones, and this baby never stops smiling...too bad my step daughter lives in Alberta... thanks a bunch!
Yes the tubes going down the nose sucked but just prior I got even before they started, they spray a numbing spray in my mouth and I spewed it out, in their face, Karma eh?? :lol:. The only thing was after a year of hell, it was the only way to get my diagnosis...you know...the problem that was all in my head???!!!
sorry to hijack Dogluv!
Hi guys, I just got my test results from the hida scan and it looks like my liver and gallbladder are functioning just fine, so there's no reason to have my gallbladder removed for right now, it's good news but confuses me as to what may be causing my pain, my doctor wants me to do the pill cam thing to rule out crohns related problems so I guess I'll just have to wait and see. Tess, I think your right about the tubes in the hospital being bigger, I know my doctor mentioned something about that, I think because the tube I had was used to suck out air it had to be a certain size. So I think the tubes used for the feedings should definitely be smaller.
Pen, that's funny about the numbing spray, I had it twice in the hospital The first time was ok, but the second time the nurse put it to far down my throut and I had a coughing fit for the next 10 minutes!
Pen, that's funny about the numbing spray, I had it twice in the hospital The first time was ok, but the second time the nurse put it to far down my throut and I had a coughing fit for the next 10 minutes!