Hey everyone, new in with questions, questions :)

Hi Folks,

Thanks for letting me into the community. I came across the forum looking for some answers and guidance to my/our problem and having read through the forums for a while im relieved to have finally found somewhere were i think i can find some of them.

So far ive considered myself to be fortunate to suffer low level symptoms but now im beginning to be more concerned and have been trying to find out more information with increasing frustration. So with no better place to do so i guess ill start from the beginning and finish with some questions and then go back into the forum and try and lend some of my experience with others seeking knowledge.

In mid 2008 my father had surgery for Bowel Cancer and my doctor suggested i go to get myself checked out by a specialist due to some possibly linked symptoms id been exhibiting. When i had a colonoscopy the specialist found some inflammation in the colon and sent me for a Barium (spelling?) meal so they could check the small intestine. Well the one thing they tell you is the barium can cause bad constipation, yeah, not in me, 6 hours later i had real bad diarrhea and it didnt go away over the next day ro two. So being a fit and healthy guy i figured id just wait it out and it would be ok. So after a few days it hadnt cleared so i went back to my normal doctor who referred me back to the specialist but it took a couple of months to get back in. Weeks bed ridden with sever stabbing stomach pain unable to eat anything and losing weight like i couldnt believe (from 170 to 130lbs) i finally got back in to the specialist who apologised for the delay and told me i had Crohn Colitis.

They put me on Prednisone and after taking the first dose (8 tablets but not sure what size sorry) the pain stopped, after 2 days the other symptoms cleared as well. I was extremely and equally relieved and furious that the fix was so simple and instant and id suffered so much and so long but anyway, cant dwell in the past.

After completing the course of Pred (about 3 months including reducing them to finish) i went back and chatted with the specialist again and we talked about medication that could be taken for the rest of my life to help control the disease and to be quite honest the research that id done, confirmed by the specialist, told me that the side affects for all of them were pretty scary and, as this disease seemed to have only just presented itself (as a result of the Barium meal) i decided to see if i could manage the symptoms without the aid of medication.

On a subsequent visit to the specialist (a month later) I quickly realised that even though they had diagnosed me they seemed to be oblivious to the problems of living with it (when i asked how i would know if i was in remission or on a flare they smiled and said "oh, youll know if you have a flare up" real helpful !!) and things that could be done without medication to help so i set off on a journey on my own. Thankfully, i chanced on a new family doctor who took me on his patient list and when he heard i had Crohn spent 45 minutes telling me all he know about it, NSAIDS (ibuprofen etc) are a major trigger, the Osteoporosis etc i have in my lower back are a common side condition, your back hurts so you take ibuprofen which makes your Crohn worse which inflames your back more so more NSAID and so on... Doing some reading on the web i realised the Colon is chiefly responsible for drying the stool so i stopped drinking 45 minutes either side of eating which helped a lot an so i coped.

So, after a terrible 2009 and then my wife leaving to divorce me in Jan 2010 ( another struggle of a year) i decided that 2011 would be a good year. Back t0 good health and back to a good weight ive joined a gym and have an appointment to see a Nutritionist next week and that beings me to why im here.

I went to see my family doctor last week and explained that since coming off the Pred id been managing my symptoms but had been constant with watery at time but usually soft stool and gas making dashing off to the bathroom a regular but manageable thing. He prescribed something to help with that and it has but i have started with stomach ache and am not sure if its the Crohns or from exercising at the gym though something inside tells me thats just wishful thinking.

Sooooo, gee that was a bit more than i expected to write sorry.
Heres the things im hoping to learn more about


phew lol, hope someone can be bothered to read all that lol. If anyone can just, at the least, provide a link to a FAQ that answers some of this that would be awesome, but all contributions or indeed, questions i might be able to answer to help someone else, would be very happily received.

Cheers

Kordain...I am sorry to hear of your struggles. Symptoms and what we deal with differs from person to person. If it doesn't bother you or change your day to day functions than you wouldn't be in a flare. I feel a flare is when you can not have a good quality of life. You have to weigh your own pros and cons. For me...Keeping the evil crohns at bay, and living a good life everyday...Far out weighs the nasty side effects and awful what ifs...Good luck...Hopefully, someone else will have some insight. Peace, Sue

Hi Kordain,

It's all very individual. Imo a flare up is when your condition makes your life miserable because of pain or other symptoms you get. It also depends how strong the pain is, etc. I've been flaring since April last year and this time it will end in the operating theatre with me on the table.

No, you can't expect to stay at the same level with this disease, but it is possible.

Every medication has side effects and it is up to you to decide whether the pros outweigh the cons. Plenty of people have been successfully put in remission with the use of those drugs, but they also pose a danger to your system. Even mesalazine, especially asacol can sometimes cause kidney failure.

Good luck.

A good place for you to start would be our wiki www.crohnsforum.com/crohns-disease

Some people get worse as they get older, others don't. As for your mild symptoms, I would keep a food diary for a bit, I find I have low level symptoms when I eat certain foods (mostly fruit and veg!) but am fine if I stick to the right foods.

What medicine did you doctor prescribe you? It is possible to have a bad reaction to something after only one dose, so keep an eye on it and go back to your doctor if things don't improve. And read the leaflet that came with the med, that will tell you if there's anything you need to watch out for.

Mesalazine medications like Pentasa are generally well tolerated and can help to keep you in remission. So since you have mild symptoms at the moment, that may be a good place to start (though you may need another run of pred to kill any inflammation, then the mesalazine keeps it away).

Thanks guys,

I do feel lucky that im not suffering too badly from it and hope that i can self manage but time will be the judge. Dont feel sorry, life hits all of us with our own burdens to carry and im much luckier than a lot of people out there.

I think my next step is to try and find a local specialist who is actually very knowledgeable about the level of my condition and the best application of meds.

Thanks for the suggestions of Mesalazine ill look into that more and also at the Wiki.

ive gone and left the tablets the doc gave me at work by accident so ill pick them up on monday but i know they were a tablet for reducing cholesterol (cholesteride? maybe) with the side affect of causing constipation. apprently quite often cross prescribed for use of its side effect rather than its actual main purpose. was going to look into it myself online but dont have it to hand today ooops. ill get back to you in here when i have them in hand.


Good luck guys, keep smiling, a smile goes a long way to making someone feel better.

Welcome Kordain to the Forum!
You will find plenty to read here and as you will see
every patient is different with their symptoms
and the intensity of them.

Hope you get to feeling well soon.
Make yourself at home.

All the best~Nancy

Kordain,
I am glad your symptoms do not seem to bother you too much. I am not trying to be a wet blanket but my disease seemed to be rather mild for years and years too. So, I didn't go to the doc and do what I was suppose to do. I just would deal with the symptoms as they began to creep up. Now, I am in pretty bad shape. I am not trying to bring you down and I am very glad you feel pretty good for the most part. Your post just really hit me close to home, ya know? Just be aware and don't ignore the signs your body sends, like I did. Maybe I should change my screen name to ostrich??
Good luck,
Michele

Thanks Michele

I have been starting to think along those lines yes. Im a little worried about what it could become and maybe its better to suppress it now and thats why i decided maybe i should find a specialist who seems to know what they are talking about and seek some firm advice.

Just struggling to find another person other than my original one that didnt instill me with much faith.

I'm far from an expert, still trying to figure this out myself. As previously stated, each of us have a different experience with Crohns and with the meds. Makes it hard for us and the docs I suppose.

My doc and I have been struggling to find some sort of remission since June. I suffered with insane amounts of blood for at least 9 months prior to seeking medical advice (a long story why....blah blah blah). So I have effectively been in a flare for almost 18 months??? Geesh I just realized it was that long. I too have little pain typically. So that is not the only indicator to a flare. I guess as previously stated if it interferes with your daily life, you are not in remission.

My doc informed me that typically this is a progressive chronic disease. Yeah for us!!! He also told me there are now tests that will show how aggressive a person's CD will become. He said that once upon a time not so long ago, ALL CD patient's could expect surgery at some point. Now the odds are down to 60-70%. A little better but not great. I am scared of what is to come. Some of the long timers on here are great sources of inspiration that remission is real.

I was told early on by a good friend who also suffers that it will always be a choice of meds side-effects vs. meds effectiveness. The only med that I've had problems with so far is prednisone. Mean nasty drug. The others so far, I'm early into this and haven't had any real big problems other than a nasty headache or nausea.

Kordain said:

Hi Folks,

- Could taking a single dose of the meds the doc gave me brought back on the start of pain im feeling again now?
- Can i expect to stay at this level for the rest of my life? or is this a disease that is going to increase in severity as i get older (im 37 now)
- was i right in being so afraid of the medications side affects? could something very low level completely remove my symptoms while posing no side affects?[/INDENT]

Cheers

Click to expand...

Welcome! I am newly diagnosed (July 2010), so I am still figuring things out myself. And I am still curious about the questions you ask. But after being on the forum for a few weeks now and after numerous doc appointments, I have realized we'll never be able to get the firm answers we are seeking because everyone's case is so different. But, the fact that each case is different can be promising. You may never progress and may be able to be healthy for many years on "low level meds". I am currently only taking anti-inflammatory, and I hope they will do the trick for awhile. Like you, I am afraid of the other medication's side effects. However, I have done my homework, and the serious side affects are very, very rare. And to leave your disease to do its will can be much worse. So, you have to keep this in mind if you do have to up your meds.

Hey All..Are there tests you can take to see if you are predisposed to crohns..Like our kids? Scary thought...would you...Or wouldnt you? Mmmmm......Sue

Hi Kordain
and welcome

I'm a mild one too! I manage with just Pentasa now to maintain.
In answer to your other question, about staying at this level, I believe one can, yeah. But... you need a maintenance drug as the back up, IMO.
The other question about side effects, how about a low dose Entocort?
I have used this twice in the last 4 months when I've flared. No side effects at all. It's relatively mild compared to Pred, but still a steroid. And it worked, knocks it on the head before it takes a grip.
Other than that, there really is no cut and dried answer, only people's own experiences.
I have also been on high doses of Pred, and it's scary stuff, but I had no choice, I was blocked and infected, and seriously ill in hospital, I wouldn't hesitate to go back on it, but only in that scenario, life or death, Pred or Dead?
I will resort to Entocort for mild flares in the future
Good Luck
Joan xxx

Thanks Jill and Joan
I think i suffered the most from having a gastro that couldnt explain the different drugs and why i should be taking them, the risks of not taking them etc. so im going to try and get in with a different well recommended one and have a proper talk about it. Fingers crossed ill get some good information and direction this time around.

Cheers

Dear Kordain,
Soooo glad you are going to be seeing someone else. I was dx many, many years ago so the only thing out there was pred. And well to tell you truthfully, I just hated the stuff so much so did not go to the doc. Cause if you don't go, they can't prescribe. Good luck and keep coming back to the forum. Most people here are very well informed and you can find just about anything here.
Michele

finally! got back in to see a gastro

We i think its been 6 months since i was first (and the last time) on here. Ive been waiting all that time to get in to see another gastroenterologist and it finally happened last week. Unfortunately they ignored the request for a different doctor and put me with the same one, the good news is that one wasnt available and i now am seeing a stand in doctor who seems a little more knowledgeable and i am, up to now, comfortable with.

Its been two years since i had the first colonoscopy and i just had my second last week and there looks to be a bit more inflammation, the doc called it 'mild to moderate scattered inflammation'. straight after the camera the Doc put me on Salofalk via enema which has definitely helped reduce the 'dash' side of things so here's to a promising start.

Will be going back to follow up with the new doc next week. She has noted in the report she gave me that she wants to talk to me about Prednisone (get the inflammation back under control again no doubt) and Imuran. I have no idea on the Imuran so am starting to look up info on it now.

I'll post an update when ive talked to her (the Doc) and get back to anyone who posts.

Hope your all managing to enjoy the summer and cope with your conditions. keep smiling and beguiling

K.

Thanks for the update. I am sure you'll find lots of information in the Treatment forum regarding Imuran.

I hope your new treatment plan will get you feeling better soon!

Hiya

yup, spent a couple of hours reading through the post on imuran, scared myself reading posts about side effects then managed to find as many about having no side affects so fingers crossed i can be on the right side of that line.

Time will tell. happy summer everyone ( we dont get much of one up in canada lol)