Diagnosed......i think!

[charlton]

diagnosed......i think!

hey everyone
just thought i would ask a few questions here

i have just been told last week by my doctor i have crohn's disease he says almost sure it is
but as usual.....cant be sure until we do yet MORE tests
seriously how many tests does it take to find this out which i have had for years now.....had these pains since i was 15...24 now....and its a test a month mostly x rays

the last one i had was the one were you swallow a camera tablet
ive had so many before that i have lost track....i get tests done every 3 weeks
ive had the one were it goes up your bum 6 times now....

anyways was wondering is there anything that helps this.....is it like IBS with no cure and medication that will help .......doc is giving me something, but says will take 2 weeks to prepair.....should of asked what they are called.....basically i have to take these for 3 months and if no change they have to go back in there and get samples.....would of had this done next week but last time i had a camera go down my lips turned blue twice....so bad experience so he will try the pills first

so what type of things help with the pain
and what type of meds could i be getting or is there to many different ones
thanks

 

[Jeff D.]

First, don't take advil, it kills the stomache. I am wary now of other pain meds as well so I am not taking those unless my life is depending on it. Everyone has different experiences and react differently to medicine. You may want to try probiotics as they are good bacteria and will help your intestines by destroying the bad bacteria.

Have you tried yet a colonoscopy and blood tests. I am sure you have but most of the time those are the tests to conclude whether or not you have Crohn's.

Also as of right now their is no cure but medicine can help put you into remmission. Best of luck

 

[Sojourn]

the last one i had was the one were you swallow a camera tablet

I've wanted to try this procedure, but the way I am right now it might get stuck in there. I don't guess it has tenticles on it that can take biopsies?

I'm surprised you haven't had a colonoscopy if you haven't. Then your your doc should be able to make a more conclusive diagnosis. I understand your frustration with not having a diagnosis, but you should be happy if you haven't been diagnosed with Crohn's.

and what type of meds could i be getting or is there to many different ones

Many different ones, it's up to your doctor and dependent on diagnosis. I would not suggest anything you could recommend to him at this point since you're not diagnosed.

 

[charlton]

Is the colonoscopy the one that goes up the bum or down the mouth
either way ive had them both.... far to many times the bum one (not pleasent)....and ive had loads of blood tests

the capsule camera....my doc was worried it would get stuck so gave me a dummy version of it....when that was clear he gave me the real capsule.....and was hooked to some machine around the stomach for 9 hours.........

To be told he is pretty sure it is cronh's i was actually relieved...being asked by friends and work what is wrong with me and never being able to give them an answer, now i can......the doc says he found loads of ulcers is that what croh'ns is

over past couple of years i have been thinking it was IBS and therefore trying things that will help that...nothing works....trying to cut out gluten right now
is cronh's like IBS and therefore do the same things to help, ie cut out certain foods etc

 

[Cara Fusinato]

I would give my terminal ileum to have it be just IBS and not Crohn's. IBS is not progressive. Crohn's is an active thing. Your immune system is actively attacking your intestine. You remove a piece, it can go after another piece. You have strictures, you could get ulcerative colitis, or get fistulas. IBS is one thing all along. Crohn's changes and keeps working on you. Yes, it is good to have a definition, but this definition is not one I rejoiced in.

 

[DanSJVDavis]

Colonoscopy goes up the bum. Usually, the one that goes down the throat they just call upper endoscopy. Sygmoidoscopy is also in the bum.

Tylenol/acetaminophen is about the only thing a Crohn's doc will say is okay to take that's not prescription for pain.

And yeah, it can take quite a few tests to determine whether a person has Crohn's. There are a bunch of other digestive problems with a lot of the same symptoms and any doc worth the time should want to make sure not to misdiagnose.

And welcome.

 

[old hat]

i have just been told last week by my doctor i have crohn's disease he says almost sure it is
but as usual.....cant be sure until we do yet MORE tests

Crohn's can be difficult to definitely diagnose. Blood test result are suggestive but not definite. A colonoscopy is the most sensitive test since it can be used to take tissue samples which can be checked for the characteristic granulomas associated with Crohn's. This may or may not be indicated depending on the results of the small bowel barium x-ray you seem to have already had. The value of a colonoscopy in diagnosis depends on where the area of active disease is. It could be anywhere in the GI tract though the terminal ileum and colon are the most common areas. Did you drink some foul, chalky tasting crap and then wait around before they took the x-ray? Often a diagnosis come from a combination of several tests. Often, the patient's response to steroid therapy is part of the diagnostic process. Crohn's is a tricksy one that presents in a wide variety of ways and can be tough to diagnose.

I got mine by the fastest, most reliable way. It's also the most invasive and painful way since that method is histological examination of a piece of intestine that has been surgically removed. It was perforated and had to come out immediately in my case anyway. I assume you don't have that particular problem.

 

[old hat]

.....is it like IBS with no cure and medication that will help .......

The first part is true. There is currently no cure.

The second part isn't true. There is a range of treatment options available these days including medications that can help. The exact course of treatment depends on a lot of things I don't know. I can roughly describe a 'generic' course of treatment for the most common form of Crohn's. Crohn's Diease of the illeum

First, your doctor will probably put you on corticosteroids to bring your symptoms under control. A drug called Entocort EC is often prescribed for Crohn's ileitis because it is more targeted than systemic steriods like Prednisone and has fewer side effects. You will probably get a 12 week course or possibly a 16 week course.

After that, you doc will almost certainly want to take you off the steroids. Long term use can have some nasty side effects. After the initial course, you will probably switch to either Sulfasalazine or one of the Mesamaline containing drugs like Asacol or Pentasa. These are 'bread and butter" meds for maintenance and symptom control and are very widely used.

What happens from there depends on how you respond.

You might be put on an immunomodulator like 6-mp or Imuran if the 5-ASA based drugs don't work. Also, these medications have a 'steroid sparing' effect and are often used in patients who have problems with flare-ups when they try to discontinue steroid therapy. Something called Methotrexate is also sometimes used in corticosteroid-dependent patients to get them off the steroids.

At some point, you may be put on one of the newer biologic therapies like Remicade (infliximad). This is generally only used in people with severe disease or aggressive disease that doesn't repond to other therapies.

Here are the current practice guidelines for various medications put out by the American Gastroenterological Association (AGA).
http://www.aafp.org/afp/20070201/practice.html

There is also a lot of good info on the Crohn's and Colotis Foundation of America (CCFA) website.
http://www.ccfa.org/

 

[charlton]

thank you for the replys
i do hope these meds do at least take some of the pain away the pains are getting so bad i cant go to work and go out with friends anymore...therefore i now loose touch with them...i end up sitting at home ill all day....i do try to make my self busy buy excercising and spend an hour bike riding down the beach this helps a bit to clear the mind......but with out friends to go out with i just spend most of the time at home

im on the sick at the moment...tryed to go back 3 times in past 3 months, now they tell me not to come back until im better.....anything that will take some of the pain away would make me happier.....being on the sick just makes you more depressed.....guess i will let you know on tuesday what the meds are (dont know why they take 2 weeks to be ready though)...let you know how the meds are doing and hopefully this will be my last sick note

was one more thing, my GP has has mentioned i should see a counceler says i have bad anxiety and this will help with the stomach pains.....i said no because its...well just weird.... i mean talking to a stranger is going to help with pains in my stomach....i dont see that working.....
so do any of you do this and does it help....thanks

 

[Cara Fusinato]

Talking to a counselor could be helpful. When we are diagnosed or go through a rough flare, the body sickness affects the mind which then makes the body react worse. It's kind of a circle. I would have liked to talk to a counselor when I found out. I dealt with the "why me?", the "how can I manage this for the REST of my life?", the "ow, this hurts so bad," the "I'm useless and angry", and the "I just want to be alone and in bed," all by myself. It's all common for someone with a chronic (painful) illness. Once my attitude changed to be more positive, it made things a whole lot easier and soon I was out of the flare-ups, stabilized, and back to having some fun with friends.

Hang in there and I hope the meds. come through for you soon.

 

[Nancy Lee]

Just popping in to say welcome to the fourm!
Hope your meds kick in soon and you get feeling better.

Take care,
Nancy

 

[old hat]

was one more thing, my GP has has mentioned i should see a counceler says i have bad anxiety and this will help with the stomach pains.....i said no because its...well just weird.... i mean talking to a stranger is going to help with pains in my stomach....i dont see that working.....
so do any of you do this and does it help....thanks

Chronic anxiety can have definite physical effects. It doesn't cause IBD but chronic stress can certainly aggravate IBD symptoms as well as causing other physical problems. Mental state can have significant physiological effects. Formal psychotherapy is generall not neccessary but some people find it very helpful to talk to a therapist who is familiar with issues related to chronic ilness in general or IBD in particular.

 

[charlton]

hello again everyone......thought i would wait until i get these meds before posting again.........thanks again for the replies

Just been given PENTASA from my doc..(dont know why it took over 2 weeks to get them)

i have no idea if these are going to work, ive had so many different meds before with no luck.......just really want to get back to work and im hoping these would at least relieve some of the pain...
what i would like to know is, are there any other meds ie not the prescribed ones...supplements that can be taken that also help.......thanks

 

[Lody]

Probiotics!!!!! Primal Defense Ultra And Dannon Activ Yogurt And Drinks!!!! I Was Diagnosed Last Week- Have Had Symptoms For Almost 4 Months- And After 2 Days On Probiotics And A No Fiber Diet, I Am On The Road To Remission!!!!! Try It!!!!

 

[charlton]

will do......think i will go hunt for these probiotics in a bit
today is the best day i have had in the past 3 months....first time i have no pain

started taking the pentasa yesterday, so far its the first time i have not got up in the middle of the night with pain, plus not been very ill and need to go to the toilet 5 times in the morning....... although i was in the worst pain last night this could be the calm before the storm..... so wont say its the pentasa could just be a lucky day for me......will give it about 3 weeks before i pass judgment on them

 

[Heathcroft]

Hi Charlton, sorry to hear you are going through these first stages of diagnosis /treatment before you can get sorted out on something that will suit you.
You will, so don't get too downhearted. Try to be patient, as worrying makes things worse. I know its hard though especially when you feel bad and lose sleep.

Incidentally your mention of the wireless endoscopy (camera pill) sparked off the memory of my experience in that direction and I think I'll start a thread soon about it. (I had one and it got stuck- but as I said that's another story!)

Take care and good luck. I hope the new drugs work for you.

 

[goblue650]

The infamous camera pill. I remember having to wear all this robocop gear to work while the camera was making its way down. Just a weird feeling and I'm sure I looked dorky.

I agree with everyone saying just be patient. Diagnosis is very difficult to determine. At the least it takes months, for many, years.

Also, if you do get diagnosed, it's a chronic illness so it's not going to go away. I was in a bit of denial about that esp since I experienced a year and a half of no symptoms after my surgery (foot and a half removed from ileum). Do you best to take it in stride and carefully research everything. You don't have to rush into decisions as long as you don't have an extremely severe case. For most crohnies, you have time to find what med cocktails work for you, what diet you should be on, which supplements to try. It's a slow process that takes the rest of your life to deal with. So remember to accept it, slow down, but most of all, don't ignore it.

 

[Heathcroft]

Wireless Endoscopy Fun

Hi Go Blue- I agree with all you say. At least you got to go to work while the pill went through. I had to sit in a waiting room for 8 hours.

So I thought I'd go for a walk outside to relieve the boredom. As all I had was at shirt with the harness thing on top. I was soon apprehended by security as a suspect suicide bomber! Very embarrassing.

And at the end of it all all they got was 8 hours of film of one spot- the stricture the pill got stuck in. But as I say one day I'll post the whole story. (How I got it out before the surgeons had to!)

I know what you mean about denial. I still ask my GI when I feel OK can I please come off the azathioprine please? I know thats madness but that's how you feel sometimes.

And I've now lost 4 metres of small intestine in total so I wouldn't worry about losing 18 inches- you have plenty left!

 

[charlton]

Hello again everyone...sorry for the long pause in replying i have had no internet here for awhile...but now its back...so again sorry for not being able to answer back....been wanting to ask these for abit now...

few things i would like to know so stay with me

1. pentesa....im told i may be taking these for the rest of mylife...i did hear that if you do you can get them for free is this true

2.im also on prednisolone and so for they are okish...big prob is lack of sleep and am now getting chest pains....is this normal side effect..also on Adcal-D3
are these steroids any good for people...ive been on them for a week and taking them for 7 weeks.....

3.ive been out of work for abit now but to scared to go back may be trying again in a couple of weeks....ive tryed going back twice now but they always end up sending me home
and pretty much say not to come back till im better..

am i the only one who is on the sick for this,, over year i was there and never had a day off ive always managed to hide it from people and make excusing when going to toilet and such ....just since jan i started getting alot worse and they saw me getting worse....so this year ive been pretty bad
so also how do people handle work and crohns

4.sorry to sound disgusting..but do people spend alot of time on the toilet....like spend an hour ish on the bog....have the runs...constipation...erm the paste kind (something like that).....some with blood.....getting piles
i eat right now, to try and stop this yet i still get all this...what does it take to stop this......if i can just have normal bog break it would be alot better at work..without dissapearing for ages then coming back with questions of where you been (i hate that)..

5. people say you go into remission for months even years then will come back bad again
i had one for a whole week with no pain.....so does that mean thats it...one small week of remmision cos that is just really bad

will just leave it there,, rambling on abit to much now

 

[Kev]

Hi Charlton.. Welcome to the forum. I'll try to give you my personal thoughts on some of the questions you've asked.. Bear in mind that I'm not a doctor or anything!

OK, as for pentasa, I don't take it. I take an equivalent called Salofalk. So far my GI has been able to get me those for free. I'm not sure if the same applies to pentasa.

I am on pred, tapering off now.. no freebies there. I did suffer sleep disruptions, but I don't recall chest pains.. Pains in lots of other places, but overall I never had a problem with pred... just the withdrawal side effects.. those aren't so nice.

I was off work, went back too soon, got ill again, then they terminated me. It cost me my health benefits... I was head of the IT department, with them for 8+ years.

At my worst, I was on the toilet 20+ times a day, literally 1/3 of my day in the loo. I don't want to get back to that part of my life again. With a proper diagnosis and a treatment plan involving drugs, diet, supplements, probiotics, rest and exercise, it can and should get better. Thanks to those, I only go to the bathroom 1 -3 times a day now... which allowed me to find a part time job.. work around my illness.

Finally, as for remisson, apparently I had one of nearly 10 yrs prediagnosis, and with no treatment or drugs. Then I had one for nearly 5 yrs.. my latest only lasted a few months... but I'm hoping for another long one to start anytime soon.
I believe there are other members on here who have enjoyed long remissions, but I'll let them tell their own stories. It can and does happen, so its something to work towards, to look forward to, to keep fighting for when things aren't so well.

 

[Sojourn]

I'm surprised the Prednisone is not doing that much for you. Usually it does a pretty good job of kicking people into remission, at least for the short term. I'm taking it now, including Pentasa, probiotic supplements, and on a low-residue diet and am doing pretty well regarding trips to the bathroom. Usually 2-3 a day with fairly normal movements except that they're narrow. I don't put much faith in Pentasa. Last time I went through this regiment, of Prednisone/Pentasa then phasing off the Prednisone, when I phased off the Prednisone all my symptoms came back. So I'm enjoying life as much as I can while on the Pred.

As far as handling work and Crohn's, it varies for each person and according the severity of the symptoms. When I was really bad, I would eat very little before going to work, like just some Graham crackers or something like that and would have something similar during lunch break. Then when I got home I would eat my significant meal for the day. I would be sure to give myself about two extra hours in the morning before going to work to try to purge myself of all the food content. Of course, there was a lot of weight loss and I was not at my best being fatigued, etc, but I managed to get by.

In answer to your other question, yes I do get sick of Crohn's and all its crap, another pun. I don't think I'll ever get used to it. I just try to enjoy what I can of life and try to stay positive about things. I'm not saying that always do stay positive, but I try.

 

[charlton]

Are prednisolone and prednisone the same thing just spell mistake or 2 different meds
been on them for 2 weeks and they seem to be helping alittle...starting to get the side effects.....

aswell as these meds plus i have probiotics....what else can be taken.
people say supplements....what ones are best to take...are they like them fish oil ones you buy from health shops

one more thing...once diagnosed do people still go in for tests...i was told by my doc that he is almost 100% sure its crohns and put me on pentesa..went back and they wernt working so put me on the steroids...then said if these dont work it may be IBS......are these meds meant to be that good that they work for anyone with crohns or is it that he just doesnt know how to help me anymore....he also wants to do the camera tablet again....and also the tube cam that goes down the throat (sorry forgot what these are called).....i really thought these tests were over yet i may have to do all this again

 

[kpratte]

Are prednisolone and prednisone the same thing just spell mistake or 2 different meds
been on them for 2 weeks and they seem to be helping alittle...starting to get the side effects.....

Sort of: http://en.wikipedia.org/wiki/Prednisone
"Prednisone is a prodrug that is converted by the liver into prednisolone, which is the active drug and also a steroid."

i was told by my doc that he is almost 100% sure its crohns and put me on pentesa..went back and they wernt working so put me on the steroids...then said if these dont work it may be IBS......are these meds meant to be that good that they work for anyone with crohns or is it that he just doesnt know how to help me anymore...

Steriods are not meant as long term treatment because of the side effects and other problems they bring. They are however great for short term treatment. Pentasa and a lot of the other drugs are more for long term treatment but they don't always work for everyone, however they are much tamer than steriods to your system.

So, basically, the Doctor doesn't know exactly which drug or drugs will help you and unfortunately will try a few to get it right. It's a try the one with fewest side effects first growing to the more potent ones with more side effects.

The tests are never over unless you magically got healed. I typically get blood tests every 3 - 6 months and other tests as I have issues.

- Ken