First colonoscopy....what's the chance of a diagnosis?

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KatAttak

Joined
Apr 18, 2012
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Hey

I'm kat, I have been on and off with stomach pains and odd bm's as well as about a hindered other symptoms. I am due my colonoscopy and the camer down my throat and I am now worried that it's not going to show anything at all?

I have read that a lot of people go for the scopes and still get no answers... Is there any likelihood of a diagnosis from a fist scope test?

Thanks
 
I have no idea what the odds actually are, there are so many factors to take into consideration. I believe that your odds are better of getting diagnosed if you're in a flare-up when they do the scopes, as they'd be able to observe active inflammation and things like ulcers, etc. The longer you've been ill, the more likely there will be stuff like scar tissue/cobblestoning so take that into account too, if you haven't been ill for very long then things might not show up. Make sure they take lots of biopsies, and it wouldn't be a bad idea to ask them to stain the biopsies for mast cells too. Sometimes the inflammation is microscopic but can be seen on biopsy, so it's possible that things will look normal on visualisation but the biopsies will reveal some answers for you.

Keep in mind that if you do have Crohn's, it can manifest anywhere from mouth to anus. The scopes only see the very beginning and very end of the small intestine, so if the scopes find nothing, it's still possible that you've got active illness in the small intestine that the scopes couldn't reach. "Normal" scopes doesn't necessarily rule out Crohn's.

Good luck with the scopes! I hope they do get you a diagnosis so that you can get out of limbo and get some proper treatment and relief. Best of luck!
 
Heya cat

Thank you ever so much for your kind words, and advise I am so scared yet I think it's more because I feel that I have been through all of this and won't get told anything.

I don't know how long I have had this for but I'd say easily since 2008 but just put it down to other things. I have had a sore throat since yesterday but it's not the norm my throat feels red raw and like its down my throat too ( hurts when I swallow) maybe ulcers I'm thinking as I regularly wake up with waves of pain down my chest ( also believed to be ulcers).

My worst fear is that after all of this I'm still going to come back with nothing and it's going to be more of a struggle. Sorry to blabber on feels like no one else really cares...prob because they don't understand.
 
I completely understand, and I feel for you. I really hope the scopes find something, but please don't get too discouraged if they don't. I've had pretty much nothing but "normal" test results, I'm still undiagnosed, and I'm not giving up. Yes, it is completely exhausting and frustrating, you feel like your doctors aren't listening and like nobody around you understands or even cares. It's very isolating and depressing especially when you don't know for sure what to call your illness or how to treat it. All I can tell you is, you are definitely NOT alone, there's lots of us here on the forum who understand completely as we've all been through it and/or are still going through it. We do care and we understand, so feel free to vent or cry on here anytime. Big hugs to you! Got my fingers crossed that you'll get a good, worthwhile result out of these scopes! Good luck!!
 
Thank you ever so much that really has out such a smile on my face. It's been such an epic to get this far I just don't want it all to be a waste. Though I feel even if they can just say something is there....not what Babur just something will make me feel like I'm not going bat crazy.

I feel I have had so many 'external' illnesses that all link into this... But my stomach, annoyingly isn't that bad at the moment.

I am so sorry to hear about your 'normal' tests. It must drive you insane. I have had numerous blood tests come back with inflammatory markers high and a lot of weight loss and still get told its ibs. It makes you feel like pulling your hair out doesn't it?

How long have you had symptoms for? Is yours mostly stomach or elsewhere?
 
My "official" diagnosis was made through my small bowel series. Twice. With my colonsocopies visually they saw something but, the the Bx's were negative. I
will say the barium was as bad as the colonoscopy prep.

I wish you luck!

Lauren
 
KatAttak said:
I am so sorry to hear about your 'normal' tests. It must drive you insane. I have had numerous blood tests come back with inflammatory markers high and a lot of weight loss and still get told its ibs. It makes you feel like pulling your hair out doesn't it?

How long have you had symptoms for? Is yours mostly stomach or elsewhere?
Click to expand...

It certainly can make you want to pull your hair out! My symptoms first became really bad in October 2009. I'd had more minor symptoms, stuff like a sensitive stomach and minor anal fissures, for as long as I can remember, but the bad stuff has been going on for just about 2 and a half years now. My stomach/lower abdomen are the main problem areas, yes (nausea, diarrhea, abdominal pain, no appetite, etc) but I also get stuff like joint pain, fatigue, headaches & migraines, night sweats, etc when I'm in a flare-up. Fortunately my doctor seems to believe I have some form of IBD and he put me on a few different medications (prednisone, Entocort, and now Asacol) which has put my illness into remission, so lately things aren't too bad unless I eat something I shouldn't or get too stressed out. (I had salad yesterday and I'm still feeling the effects of that!)

I haven't been around the forum the past few days. Have you had your scopes yet? If so, how'd they go?
 
heya

how have you been? oh god i feel so sorry for you that it has been so bad, but also fantastic that you are in remission. i have heard asacol is quite a nasty thing to take? what does it actually do?

i had my scopes earlier, and from my notes they did biopsies but other than that they didnt see anything? they did put it was a bit difficult in some areas? not sure what this means at all?

im a little disheartened really, as i believe this has been going on for easily 4 years but just getting a lot worse month by month. just there must be a reason as to why i am anaemic and loosing so much weight. i only weigh about 7 stone now :( even though i try eat as much as possible.
 
Asacol is one of the mildest IBD drugs and is very easy to take. It's similar to aspirin in formulation but it's made so that it passes through the stomach and then releases the medicine in the end of the small intestine and throughout the colon. It's in tablet form and I take 2 tablets 3 times a day, so 2 with breakfast, 2 with lunch and 2 with dinner. It doesn't taste bad and I haven't had any side effects, it's great! I think you might have gotten Asacol confused with prednisone? Pred is the one that's notorious for many bad side effects. I was only on pred for a very short time so I didn't get side effects from it fortunately.

You should definitely ask your doctor more about why it was difficult to get the scope through some areas. That could be due to inflammation, strictures (narrowing due to scar tissue), etc. And those things would likely be caused by something like Crohn's. And as far as the weight loss, I feel for you. I kept losing weight and couldn't gain any when I was really sick, even though I tried to eat a lot too and I tried to eat high-calorie and high-fat foods (I ate potato chips pretty much every day). I wasn't able to gain my weight back until they finally put me on the medications I mentioned above. Sometimes with this kind of illness it just seems impossible to gain weight! Is it possible your doctor could prescribe you some suppliment drinks to help you get some calories and nutrients? I have heard of fortisip in the UK, and we have this stuff here called Ensure. Something like that might help.

Hopefully the biopsy results will show something! Don't give up hope. Got my fingers crossed that you'll get some answers soon!
 
I was on pred, only for a 5 day stint but my god it was like I was healthy again. Though yes I was very worried about the side effects. Howcome your on all the meds but not yet diagnosed? Seems so strange. As my dr want a 100% diagnosis before I get anything.

Yeah the weight loss didn't really appear to me until my parents come home from a holiday and said all my face is caved in. And that non of my clothes fit. I have tried the milkshakes called complain to try fatten me up. But honestly I can eat like a pig and still doesn't seem to appear?
It's amazing how people can have such similar issues yet still be told completely different things.

Thank you for your kind words about the biopsies. I just hope to get answers as I really don't want to do the prep again. I passes out on my mum getting me to hospital haha.

Please also keep me posted on your situation :) hope you get answers soon too x
 
All my test results have come back normal, and my GI won't diagnose me until something shows IBD on a test result. I pretty much demanded medication as I just got sick of being sick. I was in an awful flare and both my GI and GP were booked solid so I saw a different GP in the same clinic. This GP was awful, he took one look at my file and said that I have IBS and I "look depressed" and he then tried to give me anti-depressants. I put my foot down and said NO. I said I am depressed, but only because I'm ill and nobody can tell me why! Make my guts better and I guarantee the depression will be magically cured. I then asked to try prednisone, and he said yes, with the condition that I try some IBS meds first. I tried the IBS meds and they did nothing, and then I tried the prednisone. Like you said, I felt healthy again! In fact I felt like wonder woman, ha ha. I felt so great, had so much energy, had no symptoms - it was wonderful! And all my symptoms came right back with a vengeance after I stopped pred.

So I went to my GI and told him about how pred affected me, and he said he would put me on Entocort, which is a milder steroid - similar to pred, but much fewer side effects. I was on Entocort for 7 months and that put me into remission. Now I'm on Asacol which is basically a maintenance med for remission, so Entocort got me feeling well and Asacol is keeping me feeling well.

So yeah, I just had to put my foot down and demand some treatment, and I got it. (I had to ask for Asacol too, although it was my GI's idea for me to take Entocort, based on my good reaction to pred.) Doctors don't know everything and most of them certainly don't know what it feels like to have an illness like this so sometimes you have to stand up for yourself and tell your doctor what you think you need. The worst they can say is no, right? :) I'm normally a pretty meek person but I am glad I put my foot down and asked for medications.

I'm sorry to hear the prep affected you so badly! Did you get dehydrated, is that why you passed out? I have done prep twice and it made me very badly dehydrated both times and I needed IV fluids, not fun. I really hate prep too!
 
I think we are in very similar situations then really. I think I will put my foot down next week as I need to get back to work and the pred was amazing. Like you said I felt like wonder woman hahah :) and best of all I managed to feel hungry which was the fist time in I have no idea how long.

It seems like such a frustrating illness. I like you know what is going on with my body, and agree drs don't know it all. But for the last 6 months they have said ...yes 99.9% it's crohns as I have a whole list of ailments. And that's 4 different dr opinions too.

How have you seen it to affect your life though? Now you are in remission do you find your back to normal or does it still bother you?
I have spent 5 years studying law. And I feel this is holding me back drastically.
 
Oh and sorry I forgot to mention that I was pretty dehydrated but I want put on anything.
Just really enjoying a drink and some food. It's not bad for the fist two days it's the morning before the scopes that killed me.
I am amazed at the scoped though I had to have both and for someone who has never been under that sedative is incredible :)
 
I would say that now that I'm in remission, I'm pretty close to normal but I will never be totally normal. I can exercise, I can eat many foods (not all though, there's still some things I need to avoid), I feel mostly normal most of the time. I rarely have diarrhea nowadays and I only get abdominal pains if I eat the wrong thing. I have a good appetite, I sleep well, and so on. I still know in the back of my mind that I'm ill, though, it's something I won't ever be able to forget no matter how well I feel, if that makes sense. Like when I go to a store, the first thing I look for is the bathrooms even though I probably won't need one. Every time I eat something, even if it's a safe food, I always wonder if it's going to cause me an issue. And every time I feel slightly "off" I get very nervous that I'm headed back into a flare-up. It's like I can't ever totally let my guard down. My illness always affects me even if I'm feeling fine. And I think that doctors REALLY don't get that part of it. My GI doesn't have a clue as to the emotional and mental aspects of this disease. I am so, so very glad for this forum because this is the only real emotional outlet I have for talking about this illness! I know everyone here understands. :)

I hope you can get to feeling better soon too and get back to work. Believe it or not, I actually have worked full-time the entire time I've been ill. But of course I used a lot of sick days, and I have a fairly low-stress job so if I'm having a bad day I can just sit at my desk and not do much. Law sounds stressful but rewarding, I hope you can get back to it especially after all the studying you've done!
 
heya, so sorry for the late reply. things have been quite rough the last few days, my stomach is still hurting in places, i guess from the biopsies?

i completely get what you mean about living a normal life but constantly being aware that you arent well. as well about when you go out. knowing where all the bathrooms are, i need to know where they are or know that where i go i have my car, so spare clothes etc..


i ate out yesterday, and went shopping and felt really horrible after, if it doesnt cause me pain and urgency it causes me to feel very sick, if not to be sick. its so frustrating, so i like you are taking your advice and only eating at home now.

dont get me started on the emotional side of it, its horrendous isnt it, i have never known anything to be so embarrassing, and as much as i hate to say it but depressing. its such a horrible problem and i do sympathise with everyone dealing with this or anything similar. i wouldnt wish this on even my worst enemy.

thank you for sharing all of this with me though, its incredible to have someone who feels the same to talk to. and i also want to say that i am sorry that you are going through all of this, i really do hope you can get some answers soon. i am going to my dr to ask about my scopes results tomorrow so i will keep you posted.

this forum is incredible, best thing i have came across in so long. its like a breath of fresh are.

i have worked full time too up untill the last month, but i have a horrible stressful job that makes me want to pull my hair out, i now have a new job that i start in two weeks, i cannot wait. thank you as well about my law, i will pursue my dream job one day, but for now i am happy to work in a less stressful environment ( well at least i hope so.)

i hope you have had a good weekend.
 
good news you are feeling better , crossing all that it keeps up and the gi this time sounded a little like he was heading towards ibd , maybe they dont want to drop the ibs because then the would have to admit they were wrong ?? who knows eh but great he is keeping you on the meds xx good luck xx
 
Kat, congrats and good luck on the new job! Good luck with the biopsy results too, please do keep us posted. As for the pains you're having, they could very well be from the biopsies. I was in a lot of pain after my colonoscopy and that was attributed to the biopsies too. The good news is, that means they probably took a lot of biopsies, so a better chance of finding something. Some short-term pain for hopefully a lot of gain - if one of those biopsies finds something then it'll all be worth it.

And I know what you mean about needing to have your car. I keep a change of clothes, wet wipes, a roll of TP, plastic bags, etc in an emergency kit in my car. I haven't had to use it yet (knock on wood) but it's nice to know that it's there "just in case." I've been a bit more brave lately, going on bike rides and stuff like that, but I do carry plastic bags and wet wipes in my backpack when I ride my bike too. I can't travel without at least a few emergency supplies.

Hope you're doing better today and that you get those biopsy results back soon! Best of luck!
 
Are you fairly sure that you have Crohns? What are your symptoms so far? If you do have Crohn's, I'm not too sure that a colonoscopy alone will show results. You may have to go in for multiple tests. But don't rule out other things.
 
Heya

Thanks ever so much about my job :) and too about the biopsies. Really hoping for some news really. The pains have definitely calmed down. My stomach hasn't but the pains I was getting in certain places are a lot better now. I will definitely keep you posted, please may you keep me posted with your results too.

And yes I fully 100% understand your fears...I have clothes in my car and always need to know where the loos Are. That's amazing about you going out on bike rides :) you must be so chuffed. I go for walks but not too far that I'll be stuck. Hope to try going skating soon too...but only time will tell with that one.

Marjory...I am pretty sure I have ibd. I have been told the same thing by 3 different doctors, as well by many people on here. I will try get a list of my symptoms in a moment. I have had thousands of tests run... Always with high inflammatory markers. I have also got pernicious anaemia. As well as all of the rest. I have lost a lot of weight too. My dr has seen me at my worst when I was barely able to stand I was in so much pain. I have had a lot of people and nurses say they can only rule it to be crohns too.
 
right, where shall i begin?

stomach pains, cramping and stabbing pains,
running to the loo etc... as well as not being able to go.
bleeding and mucus
diarrhoea
Floating stools
mouth ulcers, bleeding gums and burning gums.
painful tongue, ulcers on tongue.

waves of pains around my chest ( osophogas area)
blocked and painful sinus's daily
weepy and swollen eyes

bruises everywhere
nauseous all the time
weight loss

tiredness
waking up in the night due to pains

Skin sores / blisters unexplained rashes
Arthritic pains in my hands and fingers
The list goes on... But these are my most recurrent and obvious ailments.
 
Hello,
I was wondering if they ever did officially diagnose you and alleviate your symptoms outside the bowels. I too have been to several doctors, many scans, finally had a colonoscopy this morning.
They said it looked normal (I hate that word now...hate it with a passion) but were sending in several biopsies. So I'm curious as to other people that have had trouble getting their diagnosis.
Thank you and hope you are finding relief from your pain.
 

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