Just diagnosed with crohn's

[kaza]

just diagnosed with crohn's

Hi,
i am hoping someone can give me some advise as i have just been diagnosed with crohn's disease. i have been a very well healthy person up until the age of 41 when out of nowhere i got diarea 3 months ago and finally been given a diagnosis of crohns i have just started treatment on steriods for i believe short term although got 4 repeats on the script thats not exactly short term? The crohns is in the small intestine ilitus just where it meets the large intestine. I dont know anything about this disease and am very affraid of taking any long term medication, although i am prepared to take what ever i need to get better. Is there any natural drugs that can also help me. What should i look out for as far as this disease progresses in the future.

 

[beth]

Welcome kaza!

I haven't had steroids but seeing what other people posting here get, I'm not surprised you have a number of repeats scripts lined up. Short-term with respect to Crohn's doesn't seem to equate to what most people used to think of as 'short'!

Long term medications are unfortunately a common requirement for controlling this disease.

Anyway, hope you find some answers here to all those questions you'll have!

 

[teeny5]

Welcome to the forum!

I was put on Asacol at first, then added Rowasa, then to Entocort and Azulfadine (Sulfasalazine). Now I am on Colazol. My GI has told me to never, ever stop taking my maintenance meds (currenlty the Colazol). I guess they are to keep you from flaring, though many do not help if you are flaring already. Hence my stint with Entocort. It kicked my Crohn's back into it's rightful place (remission). Before the disease I was never sick. I don't even get the flu. Only have had allergies. I was totally against taking pills. But, then I could not deal with the pain and was tired of being sick all the time. Right now I take 8 pills a day. Not too bad, I would take 50 a day if it makes me feel better. I have been taking as many as 12 a day before I think.

 

[CKnowsBest]

Hey! Sorry to hear about your bad news
Diet, in my opinion, has a HUGE bearing on the disease and how it manifests itself. I reckon you should do an exclusion diet and see what foods react badly with you and cut them out completely. Try and eat good, fresh food that's not too processed either. I mean, if your intestines are all messed up and you put horrible junk food into them, it isn't going to help! Also, adequate rest and exercise and a positive attitude do help. Stress really exacerbates symptoms so try to stay chilled out. Steroids are a fast way of halting the progress of the disease but not tenable as a long-term option. You will probably have to take other medication so it's worth checking them out online. Different drugs work for different people. I'm taking Methotrexate at the mo, with Entocort. Hope it all settles down for ya!

 

[Kuwabara]

Shantel has hit the nail on the head there regarding the approach of the doctors.

The Meds fall into two catergories-those that simply prevent/heal the symptoms of Crohn's - steroids,pentasa etc and the second type which is immunosupressants that actually try and prevent the Crohn's from occuring.

My doctor is American but I live in Britain and he favours the top down approach of going straight to the immunosuppresants-the problem is they may not work or you may be adverse to them, in my case he said I was too ill to run the risk of the immunosupressants (Remicade,Humira) from working and me getting worse. Its really a personal decision from the doctor. Apparantly it is the Germans and the Americans who favour the top down approach whereas British/Indian doctors go for the traditional bottom up i.e they calm your symptoms first then put you on the immunosupressants. I get the impression that the top down approach is winning favour generally though.

This disease is very subjective I seem to find. People on here and people i've talked to have had horrific stories to tell of their Crohn's. Personally my Crohn's appear's quite mild and I've read dozens and dozens of stories of people living fully active lives which are only setback by the odd flareup. I have days where I nearly forget to take my medication because I feel so well. although maybe its because I felt so reletivley unwell in the recent past that I feel like that.

It seems diet is the key factor in helping you control your disease. Generally if you can begin to correlate which foods and drinks tend to cause you pain then you can begin to shape your diet accordingly.

The main problems with the steroids are the side effects - but they are reletviely mild and if you maintain a positive mental attitude I think you can hold them back. I think it comes down to the adage Does the body rule the mind or does the mind rule the body?
(http://www.youtube.com/watch?v=MBX7PCsvUZc&feature=related) - (Sorry had to.)

Personally I'd think the latter, but who knows. I've been steroids for 7 weeks now and apart from a bit of mooning of the face (I was pretty gaunt already) and some spots coming through its been fine. The postivie effects of these drugs far outweigh the side effects anyway. I found that within a week I was feeling much stronger and my bowel/guts/toliet habits were all drastically improved- and with that comes an improvement in self image and self worth.

To conclude Kaza I'd say its really a case of trusting your doctor and your instincts knowing when to surrender to other's advice and your own intuition. Should i eat that? should i go out? - Just try and give your body a rest and get a grip on your circumstances of your illness.

For what its worth their my two cents - I'm still completeley 'green' in comparative terms to others on this forum who have handled their disease for years. I suggest you listen to them first and foremost but as a recent diagnosee I feel your anxiety and I thought you might be reassured that these drugs are a-ok.

 

[imisspopcorn]

Welcome to the forum. Be sure to check the treatment thread...tons of info there. Both homeopathic and traditional. Good luck, I hope you have a fast remission.

 

[farm]

:welcome: Cool name by the way!

 

[kaza]

thanks so much to you all for taking the time to give me some helpful advice. It helps to no your not on your own with this sickness and there are so many other people out there suffering with this horrible disease. I am from Australia and it seems the treatment does vary in different countries. After reading so many stories in here it does seem i do have a fairly mild case of crohns as i have only symtoms for 3 months and am feeling better already after taking steriods for 4 days.

 

[bjeffrey]

Welcome Kaza...

I am new too and was diagnosed at 20 in 1983.

Watch closely what you eat and it's reaction on your body. Start eliminating foods that may be causing the discomfort.

In the US, typically, steroids are given as a last resort. Webmd.com and other websites have standard treatment protocols. And I hate standards. I educated myself enough to have intelligent conversations and suggestions for my GI including watching clinicaltrials.gov . I have been with him since 1983 because he understands the disease completely, knows I will challenge sometimes his suggestions and he is learning that there is an emotional impact that goes with this disease.

i hope this helps.
jeffrey

 

[Guestly]

Kaza,

Great news the steroids are working so quick for you... "short term" is something I always thought meant just a week or so, but I have been on the 'roids since June, and that apparently IS short term!

I just second all the above (except for the ramdom spammer!).

Welcome and I hope you find the forum as helpful as I have!

Lishyloo

 

[farm]

Kaza,
How are things going for you now?

 

[Peggy]

Hi Kaza, welcome, My Hubby and myself have Crohns, I do not take prednisolone unless I rearly need to, Where as John has been taking them fot over22 years, his body no longer makes them so he has to replace them with tablets. Peggy

 

[la la]

I am soo sorry to here your diagoses. The good thing is now that you know what you are dealing with you can learn about the disease. There is so much information here on the forum! You have come to a good place. There is information on medication, diet and some that have tried or are using naturapathic medacine. Please look around there is SOO much here. Hopefully you will find something that works for you. Take care and be your own advocate when it comes to your care. Keep us posted.

 

[Theresa]

Welcome Kaza, I am fairly new on here too, although i have always suffered but am just in the process of being diagnosed. I am sorry to hear your diagnosis, although I really think this is a good thing as there are a lot of people who it seems to take years to get a diagnosis! My surgeon has talked to me about steriods and immunosuppressants, and this scares me to! I have an appointment on 23rd following my scope, where they found inflamation in the rectum and Caerum? where the large bowel joins the large bowel, I am kinda looking forward to seeing my doctor as I hope he will perscribe me some meds to stop the D and help with the pain, but I am pretty green when it comes to what? I have found the people on here to be really supportive and who have dealt with IBD for many years. I have found other peoples posts really helpful. Hope you start to feel better soon keep us posted its great to follow how others are doing it really gives us people awaiting our diagnosis hope!

take care Theresa xx

 

[Phoenix684]

Welcome!

I too am recently diagnosed, although I have ulcerative colitis... I was just diagnosed a few weeks ago, although it took them almost a month to figure out what was wrong with me. I know how it is to not know what's going on... What you should eat, what you shouldn't eat, what it means to have Crohn's/UC... And I'm no expert, but I have been doing some research, and there's no cure. There's surgery, but from the sound of it, even with the surgeries symptoms still come back. Right now I'm on imuran, asacol, and prednisone. Woohoo... My doctor already told me that I'll be on imuran life-long. I don't know how your case is going to work out, but be prepared for the long-haul. Just be careful about what people say about "miracle cures," if it's not clinically proven, it could have dangerous side effects, or it might not work at all.

 

[lexus333]

Be careful

When I was first diagnosed I was placed on Asocol as a maintainence drug. After being on it for about 3 weeks, I started feeling a lot of pressure on my chest/lungs, especially during the night. By the 3rd night or so of these symptoms, they become so bad that I went to the emergency room. Being a 50 year old male, a heart attack was immediately suspected. I will spare you the details, but after numerous tests including an emergency angiogram, they could not definitvely say I did or did not have a heart attack. Interestingly, the warning information with the Asocol package states that on very rare occasions the pericardium around the heart can become inflamed and cause pressure on the heart. The esentially mimics a heart attack including elevating enzyme levels associated with a MI. I stopped Asocol and the symtoms ended. They switched me to Mesalamine and after 3 weeks guess what happened! Needless to say I did not go the emergency room (although perhaps I should have). I stopped the Mesalamine (which is in the same class of drugs as Asacol, by the way) and no more heart attack symptoms. It has been about 2 and a half years. Still trying to figure out best course of treatment to stay in remission with Crohns. My point: listen to your body when trying any new drug or course of treatment.

 

[Sue-2009]

Prednisone

I too am recently diagnosed with Chrons last week, I am freaking out. THey put me on 40 mg of prednisone and already want me to taper...I can feel the inflamation in my J Pouch--I have no colon. I personally don't think I am ready to taper///Any thoughts? Sue

 

[Jennjenn]

I too am recently diagnosed with Chrons last week, I am freaking out. THey put me on 40 mg of prednisone and already want me to taper...I can feel the inflamation in my J Pouch--I have no colon. I personally don't think I am ready to taper///Any thoughts? Sue

Some doctors feel that each week after starting it to start tapering off of the pred...Possibly because of the possible side effects short and long term...My doctor tells me that each time when I get out of the hospital when I get put on pred to start tapering off....
Welcome Kaza, Bjeffrey and Sue

 

[kaza]

kaza's update

Hi ya all, thanks for all the support you have all given from this thread. I am now weaning off the steroids prednisone and am now taking imuran all was going very well until last week when i come down with flu like syptoms fever ect I went to local doctor and was given some antibiotics flu symtons left me rather quickly after some good rest. I have now been vomiting every time i eat anything aspecially my breakfast i take with my meds this has gone on for a week on the occasions i havnt vomited i have had the worst acid heartburn reflux and had to stick my finger down my throat to bring up food just to feel comfortable i am not sure if the imuran is causing this or not i have been unable to get hold of my GI and dont have an appointment until the 17th Dec i imagine i could be rather slim by then. Today i had had enough and went back to local GP he was reluctant to give me anything and told me to talk to my GI. I threw up in his surgery then went home i remembered the GI had given my a script for some acid reflux pills on one of my first appointments as my endoscopy biopsy results indicated i had helicobacter as he is still reluctant to treat it until my crohns is under control, i went out straight away and filled the script and so far my dinner has stayed down and no more acid pain hopefully this is the answer to my prayers this week. Sadly because of vomiting my meds up all week i now have diarea back.

 

[kansas]

Hang in there kaza. Glad to hear you might be keeping food down now. I went for a stretch in the hospital for two months, had an infection, was on humira, got off, had two fistulas, got on remicade, lost 60lbs and tried lost of different pills (not all necessarily in that order). I can tell you that keeping positive, knowing that if its not one thing its the other, and that prayer and counting your blessings is where its at. I think about how many times I almost just made it to the bathroom, running in a frenzy just to crap my pants before I got there.... and I guess I could smile and say........at least I have legs to run. Then wash up and wait for the next time to almost make it. Good luck, your in my prayers.