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Crohn's Disease Forum » Your Story » Is it crohns?


10-02-2017, 05:27 PM   #1
Nhoopz45
 
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Is it crohns?

Hello, I am a 31 year old female. Symptoms started when I was 16 years old. Symptoms have been getting progressively worse and still no answers. I keep reading conflicting information. Main symptoms are severe abdominal cramping, 5-10 bowel movements a day, bloating. I have had 3 scopes. Now they want to do a pill cam which i am skeptical about because I figured the biopsies were the diagnosis. IBD blood panel is suggestive of Crohns, high ACCA and negative pANCA. CT showes thicken terminal ileum from bouts of regional inflammation. All the biopsies say are nonspecific chronic inflammation. The TI biopsy also showed reactive lymphoid hyperplasia with chronic inflammation. Still no diagnosis. I have malabsorption as well. My question is, how reliable is the IBD panel in diagnosis? Anyone else have similar problems with getting answers. I really do not want to be diagnosed with Crohns but if that is the problem I dont want to act like its IBS and end up with severe complications. I am really getting frustrated with the whole process. Help please.
10-02-2017, 05:40 PM   #2
ronroush7
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Hi. I hope you can get some positive answers soon.
10-02-2017, 06:21 PM   #3
cmack
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Hi Nhoopz45,

The tests are not entirely accurate, which is a big problem. I passed every one they gave me and was repaired surgically quite a few times and was never formally diagnosed. My current GP now considers me to have unspecified IBD. I am treating it with a vegetarian/non GMO diet that is supervised by my doctor. It is very important to be monitored regardless of what you try as a treatment. You can pm me any time, I will respond.


Welcome and good luck,

Chris
10-02-2017, 09:00 PM   #4
Jabee
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The capsule endoscopy sounds like a good idea. I believe a minority of crohnís patients have biopsies that are conclusive for crohnís. It sounds to me like your doctor is checking to see if the middle parts of your small intestine are affected (in addition to the terminal ileum which is visible on the CT). Most people are diagnosed based on symptoms as well as test results (blood work and biopsies). Can you talk to your GI about why he/she needs more tests to diagnose and treat you? I understand your frustration. It could be that they just want to rule out further small bowel involvement before deciding on treatment.
10-03-2017, 04:37 PM   #5
Nhoopz45
 
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The capsule endoscopy sounds like a good idea. I believe a minority of crohnís patients have biopsies that are conclusive for crohnís. It sounds to me like your doctor is checking to see if the middle parts of your small intestine are affected (in addition to the terminal ileum which is visible on the CT). Most people are diagnosed based on symptoms as well as test results (blood work and biopsies). Can you talk to your GI about why he/she needs more tests to diagnose and treat you? I understand your frustration. It could be that they just want to rule out further small bowel involvement before deciding on treatment.
My frustration is from lack of diagnosis for 15 years, but now I am concerned that I don't want to be treated for CD if I dont actually have it. Some of those medications and reported side effects are intimidating. So, if they plan to treat for CD I hope that the pill cam shows something to reassure me that the treatment is necessary. You know you want a diagnosis so bad, but then when its about to finally happen you dont. You dont want the bad news.
10-03-2017, 05:00 PM   #6
cmack
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Whatever you decide you have my support, I hope things get better for you soon.
10-03-2017, 05:12 PM   #7
Nhoopz45
 
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thank you
10-08-2017, 07:44 PM   #8
mere282
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The IBD panel isn't known for accuracy in a lot of cases. Pathology is more reliable
The pill cam can be a useful tool


10-11-2017, 08:30 AM   #9
badger
 
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Colonoscopy and biopsy by a competent guy thats seen it all, will be 99% accurate. If your in a flare up then you cant miss it on a colonoscopy, i have watched all of mine on the screen and all except one were extremely obviously.

But I dont think this is your issue, I think your real question is more about how to cope if it is CD. You seem to be very worried it is CD and under the impression IBD isnt as bad.

Trust me in the end IBS,IBD,CD etc etc are just names. All have there particular problems. You mention the meds being frightening, and yes some are.

But your not always on them, they dont start you in a torrent of medication, most doctors try and use as little as they can. But lets go back a little...

Lets say its CD, well first off do your research, i mean everything. Equip yourself so you understand anything a doctor says to you, play around with your diet. For a number of years I got good at spotting the point a flare up was on the way, i would stop all solid food and spend 3-4 days on Ensure plus.

This worked really well for a good number of years, I went maybe 15 years before I had any real CD medication, by that time my bowel was in a real state. Stress and fear are not good, they dont help. Remember everyones CD is different, no one has a story that will apply to you, some might be similar but this is a forum, it tends to be those at the rough end.

I have two friends that also have CD, it was 5 years before I knew one had it, they have it very mild. The other is a little worse and goes on the steroids maybe twice a year for a few weeks.

Then there is me.............I am the other end of the scale.

Stay positive, ask questions, dont be afraid to ask anything.

And best of luck
10-11-2017, 12:14 PM   #10
Guerrero
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Hi Nhoopz45,
I hope you'll be fine soon, I agree with badger, you may need a second opinion to finally conclude if it's IBD or not. Try to find the best Gastroenterologist near you.

If it is, well maybe having the correct medicaction may solve your problems and help you stay finally better.
It's not fair you going through all that suffering. You desserve a diagnosis and a cure.
10-11-2017, 06:55 PM   #11
cmack
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Yes, you have to educate yourself. The doctors aren't going to spend the time. Dig as deep into the specifics of each possible disease as you can and always question everything.

Best of luck to you, pm me if you need help or just want to rant.


Cheers,

Chris
10-12-2017, 07:17 AM   #12
badger
 
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Hello, I am a 31 year old female. Symptoms started when I was 16 years old. Symptoms have been getting progressively worse and still no answers. I keep reading conflicting information. Main symptoms are severe abdominal cramping, 5-10 bowel movements a day, bloating. I have had 3 scopes. Now they want to do a pill cam which i am skeptical about because I figured the biopsies were the diagnosis. IBD blood panel is suggestive of Crohns, high ACCA and negative pANCA. CT showes thicken terminal ileum from bouts of regional inflammation. All the biopsies say are nonspecific chronic inflammation. The TI biopsy also showed reactive lymphoid hyperplasia with chronic inflammation. Still no diagnosis. I have malabsorption as well. My question is, how reliable is the IBD panel in diagnosis? Anyone else have similar problems with getting answers. I really do not want to be diagnosed with Crohns but if that is the problem I dont want to act like its IBS and end up with severe complications. I am really getting frustrated with the whole process. Help please.

Sorry i had missed something in your post. A pill cam IMHO is not the way forward, let them do it because if you dont then they listen less to you. But once its done get them looking at the other end.... A colonoscopy is what you need.

TBH a Good GI would have had you on pred by now. Yes there are horror stories on it but let me tell you my experience with it.

I have a great GP, he dosnt hand you a box of pills and say's take 6 of these 4 times a day.

My doc wanted me on 30mg 2x daily to start with, what he told me to do was take 1x5mg twice a day for 2 days then on day three increase to 2x5mg for two days and so on. my body coped really well with this slow gradual increase.

I ended up on them for around 5-6 weeks, as soon as my symptons had gone and the inflammation was gone, he told me to taper off the exact same way I started the drug.

I had zero side effects from doing this, and the drug did help. it was my goto drug with dab flare ups, but same thing each time, gradual build up and then gradual taper off.

Due to work i had to relocate for a while, i was under a different Doc and he just said take 6 of these twice a day, then after 12 weeks he told me to stop. I did what he had told me, my experience this time was very different. I did feel side effects and i didnt feel at all well, also i found the flare up came back quicker.

BUT keep in mind we are all different, some can take large amounts in one go and be fine, others like me cant. This is why research is vital, so now you have your first little snipit of info. If they do offer you pred, and they do tell you to take it all at once for the first time, ask if you can increase in a controlled way.

if they get funny with you, then go find the drug online. You should find that little note they put in tablet packets, you will find some brands say on the leaflet about starting gradual and tapering off. print that out and hand it to your doc.

Bottom line with all of this is, ITS YOUR body, its YOUR disease. YOU are in control, they can advise and you should listen, but ultimately dont get pushed around. Dont assume all doctors know much about CD or IBS, some have little knowledge.

I have had one doctor tell me CD and IBS was little more than a upset stomach. My job is a medical Bio Chemist, i have been one for nearly 30 years, I also now work in the CD field of research.

One thing I can tell you 100%, and this applies to anyone with CD/IBS UC etc..... If you smoke then stop, no if's or but's and dont start telling me you smoke and it dosnt affect your CD. The biggest trigger for CD etc is smoking.

So do I smoke? Yes I smoke, is that hypocritical? Yes it is. But is the advice to stop valid? 100% I promise you that stopping smoking will make a difference.

One final question for you...........

Do you get night sweats?

From your post, i am pretty sure my Doc would be doing a colonoscopy and doing a biopsy, nothing in your post suggest anything but one of two things. If needed ask for one, if they agree then this is tip number 2..

If they try and give you agent picolax to prepare you for it then contact me by pm, I will send you a shed load of research papers that you print out and take to them, I will also supply you with the name of the alternative prep.

The alternative prep cost a fair bit more than agent picolax, but even if you got to buy it yourself, its worth every penny. I have paper after paper that shows the alternative gives a cleaner and better prep, it is also alot less traumatic than picolax.

But if you do have to have a prep then golden rule.......

Buy isotonic sports drinks (clear coloured, not cloudy) Drink and Drink, even while your sitting and erm prepping! You soon work out that not drinking actually decreases the time your sitting on the loo. This is a major error.

The more you drink the better the prep and more chance you want need another prep because the first wasnt clean enough. But the main reason is more simple, you will dehydrate rapidly while prepping, be under no illusion, dehydration is a nightmare. its far more serious than people realize, it makes you feel very unwell.

the better hydrated you are, the less traumatic the prep. Use isotonic drinks because they have a good balance in them, water alone is not going to help much.
11-03-2017, 05:23 PM   #13
Nhoopz45
 
Join Date: Oct 2017
I have done the egd the colonoscopy and just did the pill cam but havent received results yet for pill cam. I suspect its been inflammatory disease for a long time, not ibs. Im fine starting treatment as long as, they are sure of the diagnosis. The biopsies all say chronic nonspecific inflammation. The terminal ileum is thickened. The part i questioned was that the ibd blood panel is suggestive for crohns. I was really hoping to find literature about the sensitivity and specificity of that test. I cannot find anything from a reputable source. so the blood work says crohns, the biopsies say nonspecific inflammation and I guess im hoping the he pill cam shows something definitive for crohns so that I wont be worried about treatment. Im sure they will find a treatment that will help with the symptoms that wont make my bp go crazy or interact with any of my bp meds. Thanks for the input everyone.


Sorry i had missed something in your post. A pill cam IMHO is not the way forward, let them do it because if you dont then they listen less to you. But once its done get them looking at the other end.... A colonoscopy is what you need.

TBH a Good GI would have had you on pred by now. Yes there are horror stories on it but let me tell you my experience with it.

I have a great GP, he dosnt hand you a box of pills and say's take 6 of these 4 times a day.

My doc wanted me on 30mg 2x daily to start with, what he told me to do was take 1x5mg twice a day for 2 days then on day three increase to 2x5mg for two days and so on. my body coped really well with this slow gradual increase.

I ended up on them for around 5-6 weeks, as soon as my symptons had gone and the inflammation was gone, he told me to taper off the exact same way I started the drug.

I had zero side effects from doing this, and the drug did help. it was my goto drug with dab flare ups, but same thing each time, gradual build up and then gradual taper off.

Due to work i had to relocate for a while, i was under a different Doc and he just said take 6 of these twice a day, then after 12 weeks he told me to stop. I did what he had told me, my experience this time was very different. I did feel side effects and i didnt feel at all well, also i found the flare up came back quicker.

BUT keep in mind we are all different, some can take large amounts in one go and be fine, others like me cant. This is why research is vital, so now you have your first little snipit of info. If they do offer you pred, and they do tell you to take it all at once for the first time, ask if you can increase in a controlled way.

if they get funny with you, then go find the drug online. You should find that little note they put in tablet packets, you will find some brands say on the leaflet about starting gradual and tapering off. print that out and hand it to your doc.

Bottom line with all of this is, ITS YOUR body, its YOUR disease. YOU are in control, they can advise and you should listen, but ultimately dont get pushed around. Dont assume all doctors know much about CD or IBS, some have little knowledge.

I have had one doctor tell me CD and IBS was little more than a upset stomach. My job is a medical Bio Chemist, i have been one for nearly 30 years, I also now work in the CD field of research.

One thing I can tell you 100%, and this applies to anyone with CD/IBS UC etc..... If you smoke then stop, no if's or but's and dont start telling me you smoke and it dosnt affect your CD. The biggest trigger for CD etc is smoking.

So do I smoke? Yes I smoke, is that hypocritical? Yes it is. But is the advice to stop valid? 100% I promise you that stopping smoking will make a difference.

One final question for you...........

Do you get night sweats?

From your post, i am pretty sure my Doc would be doing a colonoscopy and doing a biopsy, nothing in your post suggest anything but one of two things. If needed ask for one, if they agree then this is tip number 2..

If they try and give you agent picolax to prepare you for it then contact me by pm, I will send you a shed load of research papers that you print out and take to them, I will also supply you with the name of the alternative prep.

The alternative prep cost a fair bit more than agent picolax, but even if you got to buy it yourself, its worth every penny. I have paper after paper that shows the alternative gives a cleaner and better prep, it is also alot less traumatic than picolax.

But if you do have to have a prep then golden rule.......

Buy isotonic sports drinks (clear coloured, not cloudy) Drink and Drink, even while your sitting and erm prepping! You soon work out that not drinking actually decreases the time your sitting on the loo. This is a major error.

The more you drink the better the prep and more chance you want need another prep because the first wasnt clean enough. But the main reason is more simple, you will dehydrate rapidly while prepping, be under no illusion, dehydration is a nightmare. its far more serious than people realize, it makes you feel very unwell.

the better hydrated you are, the less traumatic the prep. Use isotonic drinks because they have a good balance in them, water alone is not going to help much.
11-03-2017, 06:48 PM   #14
eleanor_rigby
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My biopsies showed no evidence of Crohnís but thatís what I have. Your scan showing a thickened ileum I would say is key. But hopefully the pill cam will finally give you the definitive answers you need. Sometimes with Crohnís you canít get conclusive answers. My GI diagnosed me based on the appearance of inflammation that she saw in bowel and my symptom history. Everything else was normal.
11-03-2017, 07:35 PM   #15
cmack
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I agree, and I also hope you get some answers so that you can begin an effective treatment.
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