Colonoscopy Question?

[miss.T]

I was recently diagnosed with crohn's through a small bowel follow through test ordered by GP. The test results showed a lot of narrowing and damage to the walls of my small intestines. The thing that is really bothering me is I was refered to a specialist months ago to investigate my sypmtoms and what not, my family doctor has been pretty sure right from the start that I have crohn's. But this specialist pretty much washed her hands of me after I told her that on occation when the pain is really really bad, the pain will run down my leg. The second I said that she said it isn't crohn's then. Period. And then sent me to a pain specialist and I have been pretty much tosed around from doctors to doctor with little result, I even started to believe maybe the pain was in my head.

But my family doctor said, that if the intestines are inflamed or spazeming they could very well irate other areas and hence the pain going down my leg. So long story short.....my family doctor ordered the small bowel follow through and upon seeing the results decided to send me back to the same specialist that originaly blew me off (because she was the fastest one I could get into see) Anyway she ordered a colonoscopy wich I just had today. And now she is telling me the test is fine and I don't have crohn's. (??????) Being told this after finialy being told I actualy had a diagnosis has made me feel unbelievably lost, hopeless and ready to just give up. So I stoped by to talk to my family doctor and he said that is basicly crap......that test should be normal because the effected area is in the small intestines where she wouldn't have been able to reach. Now im on a waiting list to see another specialist in a neighboring town, but I could be waiting for quite awhile.

I hate this! I hate that specialist! It really seems to me she just doesn't want to admit she was wrong in the first place. Has anyone else here got crohn's and had a normal colonoscopy results? Im just feeling very horrible right now because I am tired of playing these stupid games with doctors.

 

[tammy20]

Hi Miss T

My situation is very similar to yours. So far the only test which has shown crohn's is a barium follow through - colonoscopy and bloods have come back normal other than the fact that I have now developed anaemia.

Regarding the pains down your legs, my consultant has asked me this question as he says that if I get pains into my legs it is likely to indicate that I have got absesses rather than crohn's. I therefore had a CT scan yesterday to look into this further even though I have not actually had pain in my legs - the pain which I experience is at the very lowest part on the right hand side of my abdomen.

Whatever you do, keep fighting for a final diagnosis - crohn's can be very difficult to diagnose and a lot of people have normal colonoscopys but then are diagnosed with crohn's by some other means.

Good luck. Hope this helps.

Tammy20

 

[soupdragon69]

Yep definately understand why you feel as you do!

My original scope back in Xmas 06 showed severe ulceration in my terminal ileum where my small and large bowel meet. GI said on a scale of 1-10 mine was an 8 at the time.

Since then have had 2 admissions to hospital and 3 scopes. The three scopes and biopies show everything in clear but each time I have been on either intravenous or oral steroids and antibiotics for at least 2wks beforehand. After each scope I have been told it was IBS and not my Crohns flaring!

Before my last scope I handed my GI a letter (into his hand) I had written going through my history and asking him to have a ponder. That was last 2nd Dec and I have been asking about an appointment since! My gastro nurse firmly believes I have ongoing flares etc and is fighting my corner thankfully and mailed me last friday to say she and my GI were having a meeting to go through my case this week and I would be hearing from them. Time will tell!

As your GP rightly says there is no point doing a colonoscopy and saying its clear when the evidence is your Crohns is higher up in your small bowel! My CT scans and small bowel follow through both showed evidence of inflammation in my ileum before my colonoscopy and pre my steroids and antibiotics but by the time they did the scope it had settled again with the meds! No one would listen to me and one GI was incredibly rude to me last Dec as my own was on hols and made me feel as though I was wasting his time.

Hang in there Miss T. Be aware it is possible for pain to travel anywhere from the source if the nerves are being impacted on!

Thinking of you. Let us know how you get on ((hugs))

 

[miss.T]

Thank you very much you guys, for giving me hope. I wonder if its possible then as well if the steriods have somehow enabled the effected area to appear normal? I havn't been on them for about a week before the test, but perhaps they have a delayed effect. I know upon finishing the test, my friend took me for lunch and since then I have been in pain yet again. I just don't understand this GI, she really seems to have a high level of arogance to her, as well as ingnorance. She is the same specialist who also told me "Crohn's should not be causing that much pain" (when I told her the pain was worse then labor and child birth....and I gave birth to two nine pound children with NO drugs. And narcotic pain meds seem to be the only thing that gives me relief at this moment. And I have recently met an older fellow I've been talking to, who has had crohn's now for the past 30 years and I have seen him reduced to tears when he is having a flare-up. Yet she (who is supposed to be specialised in this area, tells me that crohn's is NOT that painful) I have seriously lost all respect for this woman anyway. I was reduced to tears yesterday when she actualy told me, she thinks Im fine, and it is NOT crohn's. It is so frusterating, I feel like giving up sometimes. This pain has taken control of my life, and I am constently being told im fine.

 

[miss.T]

I just hope I can get in soon to see the other specialist. (he is in another town, but suposedly specialised in hard to diagnose cases) Im just glad my family doctor hasn't given up on me (when it seems everyone else has) He strongly believes it is crohn's as does the radiologist who did the follow through over a month ago. He said I need a second opinion, and not to let the results or that specialist to get me down.

 

[teeny5]

I would try to see another GI. That lady sounds like a jerk. How could she say that Crohn's isn't that painful? Mine can be extremely painful. Has she ever had the disease? Probably not, so she doesn't know what she is talking about! Get another opinion. Thankfully you have a good regular doctor that is listening to you.

Good luck! I hope you find someone that is more helpful than that lady!

 

[jamie2462]

after 8 ER docs and some serious pain...Once you get that specialist that knows what they are talking about...You will want to cry with joy! Hoping you get some good info back soon. AND ALSO...anyone that says Crohn's isnt painful is full of you know what and can come sit beside me for a day...I am dealing with internal fistulas and would love to show her/him how much fun it is getting up and walking around with these bad boys...Think of a penguin...now a turtle...and the combined image is what I look like walking down the street...its the slowest waddle you can possibly imagine....Lordy I hate ignorance.

 

[Jonhenry]

I thought my 2 scopes were MUCH MUCH less painfull then the symptoms I had, especially since they gave me medication, which we now learned the benadryl has a speed like effect, anyway, the sope isn't nearly as bad as the pain for me anyways, and results in much better biopsies, answers, as long as I don't try to get up and ask questions...(I'm hard to sedate......)

 

[miss.T]

Ok, now Im really really frusterated and ready to give up. I spoke with the doctor after he spoke with the GI regarding my colonoscopy. Apparently she did make it to the area that showed the damage on my other test, and she said it looked fine. How in the hell can it so cleary show on one test (barium follow through) and then a month and a half later appear to be fine for the colonoscopy? The barium follow through showed narrowing as well as damage and abnormalities to the intestines.....but now the GI says it looks fine. ?????????????????????? I am so damned confused! I was relieved to finialy have a diagnosis after all this time, and now im under the impression it might be reversed. I just don't understand my damn body! Why does it have to work against me so badly?

 

[drew_wymore]

First Miss T, don't give up.

Crohns can be very very frustrating and hard to diagnose. I've been told 4 or 5 times now I have Crohns only to have that diagnosis rescinded. Depending on the length of the endoscope used they can reach the very end of your small intestine, the area called the terminal ileum, now depending on where in your small bowel the issue is, the scope can't prove that there is no issue.

Some of our Canandian friends can chime in here but the best test and the only test for me personally that showed some real clearly defined issues is something called a "capsule endoscopy" also referred to as a "pill cam" and I'm not sure if it's available to our friendly neighbours to the north or not.

Steroids could skew the follow through and scope results but if you're hurting again then they should repeat the tests or maybe try another route like a CT scan.

Do not give up though! I felt the need to say it twice. Doctors can be very ignorant so don't let them tell you you aren't sick when you clearly know you are.

 

[cthomas]

Hi
My doctor has been the same I have had the problem since I was 11 so 13 years now I have being previously diagnosed with ibs thats gone on for quite a few years now, ive changed diet etc but to no avail. I also recently had a colonoscopy and they said they thought it was Crohns but i'm pretty sure looking at the symptoms other suffers have so I know how you feel. x

 

[Guest]

i was so cross for you just now when i read that the specialist said Crohn's doesn't cause that much pain! grrr! i'm afraid i would have said something to her there and then which would have probably resulted in her taking me off her patient list.

i'm so pleased your family gp is more on the ball, and seems to be looking out for you - hopefully you will soon find a specialist with the same attitude.

i learnt very quickly that doctors are not the know-all beings that some of them want us to believe, and also that i know my own body better than they do. i was diagnosed with Crohn's from a colonoscopy with biopsies.. but it took years for anyone to believe my symptoms before i got to that stage. like Soup says, don't give up. if it's Crohns, it will be found. if it's something else, this 2nd specialist sounds like the right person to suss it out.

 

[RichUK]

Hi, Im 31 years old from the UK

I have been suffering from Abdo pain and Back pain for the last 3 months.
Get headaches and slightly raised temp when the pain is there alot.
The pain is normally upper abs under the ribs but is sometimes around my belly button.

At first the GP's I saw just said because I was not passing blood it was IBS so have some anti spasmotics and you should be fine.

I kept going back though and insisted that they did further tests.

Blood tests they did came back normal apart from an Liver ALT of about 80 which they said was probably just a fatty Liver (they sent me for an ultra sound to check this whic hcame back normal) they said aswell because my ESR was normal it wouldn't be IBD?

Anyway the symtoms persisted and I eventually got sent in Feb to a Gastro Consultant he said it was probably IBS but decided to let me have a Colonoscopy and Endoscopy as I had been Folic deficiant earlier in the year.
I had the test this tuesday and was told everything looked normal on the lower scope but they took a few biopsys to test.
The upper scope revieled a 5cm Hatius Hernia and a few small stomach polyps which they removed and sent off.

I also had a CT scan performed on Saturday which the prelimary report said was clear

If I did have crohns would the biopsys that the took from my bowel and end of small intestine (terminal ieluim what ever its called) show this up.

I suppose the Hernia could be causing the upper pain but still not sure about pain around my belly.

If the biopsy comes back negative should I just accept I dont have IBD or is there still a posibility

Rich

 

[danman]

It's hard to know Richard.

The colonoscopy should determine if you have Crohn's or not.

As far as I'm aware, the consultant should know from the colonoscopy, not neccesserarly just from biopsies.
It is usually fairly easy to see from the pictures.

Good luck with your results.

 

[LeslieN]

hello Miss T
wht E Cameron said is right "the doc doing the scope was looking in the wrong place"
you should look for a more specialist doc. the Crohn may be in the smaller intestine.
and bzw, wht r ur symptomes: vomiting, diarrhea, pain crises?
and u didnt go through any treatment yet?
what is ur doc answer, why u r going through this, wht does she say (ur doc)?

 

[forum contributor]

I feel your pain!

I'm semi-newly-diagnosed w/UC (August 08), but it took a long time to get there. I won't go into all the details and how many doctors I had to see (and stop seeing). I underwent test after test, as I'm such most of us have, with nothing conclusive. But, I did see one so-called specialist who walked into the room, not even bothering to say hello, looked at my chart and, and said, "So YOU'RE the $1 million patient" (since I'd had so many tests done, therefore costing so much money). I didn't know what to say, so I said "I guess" and went on to tell her what was wrong. She interrupted me and told me that basically, it was all in my head and wouldn't do any more tests. Wow.
It really makes you wonder how some doctors got their licenses... :thumbdown:

 

[forum contributor]

Oops...

Oops! I hit post too soon. :redface:
My point was, keep pushing, even if you have to see doctor upon doctor upon doctor - you'll get your answer, and then you'll get your treatment! I know it probably feels like this :angry-banghead: but you'll get there!
Good luck, and keep us updated!

 

[miss.T]

Symptoms include extream abdominal pain mainly right around my belly button area. And when im in lots of pain you can see and feel a lump in my stomach....it sometimes even moves around. And the noises that come from my stomach are usualy very loud, and almost embarasing. Loss of apetite, weight loss, diaria/constipation on and off, sometimes with blood formed in it. (could be the narcotics) I don't usualy have a fever, but for the past two weeks I have had a low grade fever that won't break.

The odd thing is, I remember going through this exact same thing about 14 years ago when I was about 14 years old. I remember the pain was the worst pain I had ever felt in my entire life. I begged the doctors to just put me out of misary because they would shoot me full of demerol and send me home. (but the pain did NOT go away) the pain always seemed to come in the evening around 4 or 5pm. I used to dread getting out of school because I knew the pain was going to come, almost like clock work. Anyhow, this went on for probebly close to a year with no diagnosis. The only thing they did find way back then was malabsorbtion. Then one day the pain just stoped and never came back. At that time, being a teenager I didn't really care to find out what was wrong after that. All I knew was the pain was gone and thats all that mattered. Then about year and a half/two years ago, the pain returned. (well actualy in that 14 year period, I probebly had about 4 attacks that lasted a day.....just totaly random....i'd go to the ER, they'd give me pain meds and the next day it was gone) When the pain returned on a more regular basis...the attacks(flare ups) usualy only lasted a day and then would leave me alone for as long as 4 to 6 weeks. But as time went by the attacks lasted longer and became closer together until they were just about every day.

 

[miss.T]

This is what I don't understand, the barium follow through clearly showed narrowing and abnormalities of the small intestine just before it meets the large one. (the linium??? not sure whats its called again) But then the specialist went up with a scope and claims she made it to that spot and said its fine. I don't understand how one test can show it and the other doesn't? Especialy when the symptoms all indicate what the first test showed.

 

[RafHam]

Hi Miss.T

I have also experienced pains in the left leg in the past, and I definitely have crohns. It was caused by adhesions of the intestines which affected the nerves going down to the leg. I had surgery to solve the adhesions and remove bits of damaged bowel and the pain went away, although I still get some numbness and soreness down the same leg.

 

[MCPayne]

Well, I have a situation also, not like yours, but somewhat similar. I was originally diagnosed with Crohn's in 1992, however, after relocating because of my dad's job in 1995, the diagnosis was changed to Ulcerative Colitis. I have moved again in 1999 to New Jersey, and while the doctor I see is at a great hospital (a teaching hospital, so lots of fellows, interns, med students, etc.), they have never been 100% sure whether it's Crohn's or Colitis, but as of this last visit, after looking through old test records dating back to the 1990s, they seem to be leaning towards Crohns. They did the ASCA / ANCA (or something like that) blood test, both of which came back negative. If one or the other had come back positive, then they would have a better idea of which one it is.

Unfortunately I'm having another colonoscopy in a couple weeks, but I'm used to it by now. The worst part for me is the prep, although the Miralax prep, which is what my current doctor uses, is the best method I found so far in terms of the taste. I've had it seems like 10 colonoscopies over the years, but it could be less than that, or it could be more.