So how many have been diagnosed via pill cam?

[Leebie3]

normal colonoscopy etc but had pillcam and IBD been found? Also, why would inflammation in ileum extending to TI show on a CT enteroclysis and not be found on colonoscopy?

I'm just trying to decide whether I should just put up with the pain etc and forget about it all - I'm so sick of it all - or do the pillcam.

 

[Trysha]

A colonoscope cannot reach the ileum and hence the need for a pillcam to
evaluate the extent of the inflammation.
If it was me then I would opt for the pillcam.
I would want to know the extent of the inflammation and the outlook.
I have not had a pillcam since my crohns is in the left colon.
Feel better soon
Hugs and best wishes
Trysha

 

[littlemissh]

I was diagnosed by pillcam.

 

[PVail]

I have asked for Pill Cam but my doctor is not helping. looking for a new doc as i have had enough of the crap health service. March since I had tests and still not back yet , poor service is all I can say. Gonna try private to see if i can get any further.

 

[Mark74]

Iwas dx by pill cam

 

[Jenny06xx]

Me 3 !! Plus it diagnosed a stricture , coz it got bloody stuck in it lmao!!!
It came out eventually lol

 

[FruitLoop]

I had a pillcam in January - i was alaready dx but i my iron levels were dropping and i was having loads of blood transfusions and colonoscopy, gastroscopy showed no bleeding.

The pillcam showed bleeding ulcers all the way through my small bowel - however its still in there!

 

[StarGirrrrl]

I was denied a Pill Cam (after a screw-up booking me in for it beforehand, of course it was cancelled ) I was devastated, over a year ago and I still am very upset that I haven't gotten it- my local health authority ration it's use, I don't fit the criteria and GI Dept not willing to make and support a special application.
Grab it with both hands, it is a very good test!

 

[Leebie3]

thanks guys, I think I'll go ahead with it then.. the pain has been so bad since the evening after the colonoscopy but I'm scared to go to the hospital because I remember the doctor saying the scope was good.. although his version and mine of "good" could be completely different. They'd prob just give me morphine and send me home.

How many of you had a clear scope and/or a clear scan?

 

[Mia E]

I have asked for Pill Cam but my doctor is not helping. looking for a new doc as i have had enough of the crap health service. March since I had tests and still not back yet , poor service is all I can say. Gonna try private to see if i can get any further.

hi pvail
i had a look at your earlier posts to see where you were getting treated, as I'm in NI too. before getting to the GI Dr I had blood tests showing low b12 and inflammation. had ultrasound and barium swallow.

once i got to him (dr dcki) he pretty much said capsule was the only suitable test. I have never had a colonoscopy (lucky me i know) and he never suggested it. i suppose my symptoms were more like crohns and i didn't have any visible bleeding, which may explain the alternative approach taken with you. (to note the capsule did get stuck and i ended up having surgery, but i would've needed it anyway)

sounds like you've been knocked about a bit from dr to dr so i hope you get sorted. i had a pretty terrible year feeling rough as anything so i know how you feel, you really need help! feel free to pm me if u want to ask anything.

sorry to everyone for hijacking! x

 

[Aura]

I just had mine a couple of weeks ago. I was really crook with fever and pain and came clear on my CT and Colonoscopy apart from polyps etc. With the pillcam they found 9 large uclers - some fissuring in my jenjum and end of small bowel before terminal ileum. It it wasnt for the pillcam I would not still be on Humira, Aza and pred - gosh knows what they would have done. It was the first time since dx with crohns that i had a pill cam.

 

[Leebie3]

ok, so just got out of hospital AGAIN. the pain got unbearable despite panadeine forte and endone.

scopes were clear, biopsies were clear (although one doc said that the stomach biopsy showed chronic gastritis - everyone else said they were all good so I don't know whether to believe them or not about ANYTHING).
was admitted under surgical because of the colonoscopy on monday and I still haven't been to the toilet.. but gastro consulted and said they didn't feel it was IBD related. WTH. despite CTE results they do not feel that I do not have an IBD at all. especially since they were able to reach the TI and there was no inflammation even though the CTE said there was. I have no idea what is going on. I know I hurt. I know I feel better when I don't eat.

I had a really bad reaction tot he fentanyl they gave me instead of the morphine because I get really itchy.. got SUCH a bad headache I really truly thought I was going to die from the pressure in my head and neck but they kept giving it to me.. my partner came in just as I was really bad and told them to stop giving it to me.. he was so worried. said he'd never seen me look SO sick.

My esr has risen to 19 from 16. still above normal but not enough for them to believe anything is wrong.. they said that even though it's above normal it's not enough to confirm any inflammation. What's the point in having a normal range then????

They discharged me and said just have the pillcam and go from there. called to book the pillcam and they want $2027 of which $1827 is rebated by medicare but not until a week later.. and I don't have 2 grand sitting there waiting to have in limbo for a week so looks like I can't have it :-(

 

[PVail]

Sorry to hear you are having such a rough time, its not nice and very frustrating when they give no sure diagnosis. I too get sick when i eat , get real bad headaches and neck pain with bad abdominal pain. the fact is when we eat something goes wrong so should we be taken into hospital and monitored as we eat ?
Hope your feeling better soon and that you get some relief.
Peter

 

[Leebie3]

I've been sent home still not eating.. they took the drip off me this morning at 5:30am and have only had the sip of water with my panadol since.. it's now 2pm.

 

[PVail]

Hi Mia yes we are from the same part of the world and yes we have seen the same GI. I sent you a PM.
Ye i have been passed around a bit and im still getting the run around from the national health. Ithink im now just accepting that im going to feel like this everyday and until it gets much worse they wont do anything about it. Its a bit sad in this day and age really. Working ion a better eating routine now and seeing some benifits.

hi pvail i had a look at your earlier posts to see where you were getting treated, as I'm in NI too. before getting to the GI Dr I had blood tests showing low b12 and inflammation. had ultrasound and barium swallow.

once i got to him (dr dcki) he pretty much said capsule was the only suitable test. I have never had a colonoscopy (lucky me i know) and he never suggested it. i suppose my symptoms were more like crohns and i didn't have any visible bleeding, which may explain the alternative approach taken with you. (to note the capsule did get stuck and i ended up having surgery, but i would've needed it anyway)

sounds like you've been knocked about a bit from dr to dr so i hope you get sorted. i had a pretty terrible year feeling rough as anything so i know how you feel, you really need help! feel free to pm me if u want to ask anything.

sorry to everyone for hijacking! x

 

[Leebie3]

went to the GP today because my legs have pitting oedema and I have had low albumin, protein and glubulin and have read that this can point to protein losing enteropathy and can be related to IBD.. anyway, they refused to do a blood test.. said my albumin wouldn't have dropped from 43 to below normal (35-50) since my last blood test which was the 17th May.. Then went on to tell me that sometimes medicine just does not have the answers and I will just have to learn to deal with the pain and get on with my life.. go see a pain psychologist to learn to rethink how I am aware of the pain. She was saying it in a nice way.. She said they understand my pain is real but I need to understand that I have had a LOT of tests and they've all been negative so deal with it basically..

I'm done.. I'm so freaking over this. I am going to have the pill cam and if that shows nothing I will sit on the freaking pain killers for however long I need to. I won't look anymore. I HATE taking pain killers :-(

 

[PVail]

I totally understand. I got so fed up last week taking stopped taking my meds. Crazy I know but i needed a touch of reality or just how i got to this place. Well its been a few days now and i have chronic back pain and various areas of abdominal pain, constant headache and BM are up to 10 - 15 times a day and there like ribbons. But at least i know im not crazy and I know that when im taken the meds thats probably as good as it gets so screw them.
So Ive done the pain clinic and well I suppose how are they supposed to sort anything when they are only guessing.
So back on the meds tomorrow with reality in check.