I'm out of ideas / rant

[TheLazy1]

I cannot win when it comes to Crohn's disease, so far all medications have failed to bring on remission after being diagnosed mid January.
My doctor says the only option left is Prednisone which I have refused to take due to the possible side effects.

Up to about a week ago I was still not in good shape, but at least I was gaining weight and didn't need painkillers most of the time.
But now I feel like crap again, daily visits to the toilet are usually at least 5 times with the record being around 15 times and of course they have to be painful.

Damn, if that period of relative calm was my remission then I'm screwed.

Medication is expensive too, with no job and no insurance so my parents have to buy it which I appreciate greatly but feel bad since I should be paying for it.
What sucks even more is that I doubt I could get any job in this condition, especially due to another unrelated issue.

Medications I have used:
Pentasa - Did nothing
Ciprofloxacin/Metronidazole - Felt a lot better, but did not fix the problem
Entocort - Tons of acne on scalp, pain got much worse within a week or so
Asacol - Currently doing nothing

 

[Sojourn]

Sorry to hear of your diagnosis and continuing symptoms. Prednisone is only a short-term therapy, maybe a few months, that could help get you into remission so the other drugs could work better. The side-effects are worse for different people. i didn't have a lot of side effects other than a little puffiness and some acne. But it helped my intestine so much it was worth it. Also I think prednisone is fairly cheap compared to other drugs.

I'm sure you've read about the changes in your diet you can make also. It doesn't always help, but many times it can lessen the symptoms.

You said you have no insurance but live in Canada. I thought most of the health care there was paid for by the government.

 

[D Bergy]

Hang in there. New things come up all of the time. Focus on suppressing the inflammation response. Some ideas are eating bing cherries, Turmeric, Ginger and a host of antioxidant foods like green tea. By including these things into your diet you may be able to help some symptoms. It is a matter of finding out what works for you
personally.

D Bergy

 

[soupdragon69]

Hi TL1,

Unfortunately with this disease we rob peter to pay paul at times. Its a case of working out what you are prepared to live with and what quality of life you want.

To be honest I never really realised the level of pain I was living with daily until I started to get relief. Then when everything flared again I really threw my toys out of the cot because of the pain.

I do have probs with pred in relation to steroid induced acne and going through low and high moods depending on where in the cycle of pred I am. However it is only a temporary thing and that helps me to cope.

What you may also need to think about is if these meds and diet are NOT helping you then other meds may be offered like Azathioprine and perhaps remicade at some point. I have ended up on both. My GI team were surprised I just agreed to the remicade in the end because I put up such a fight NOT to have azathioprine because the side effects etc scared the h**l out of me.

The conclusion I came to was: my crohn's is much worse than I thought because I really examined my quality of life and realised it was non-existent. I too will range from 5-14 times a day at the loo, will have severe cramping pain that makes me jacknife over and be so exhausted with it I cannot stand up.

That being the case I decided I would try whatever they asked because I WANT MY LIFE BACK and I have made enough changes and given in enough to this!! IT LIVES WITH ME NOT THE OTHER WAY ROUND!!

I just wanted you to know you are definately not alone on the frustration front. I was diagnosed the tues before Xmas 06 so we are not too far apart in that sense.

Hang in there. Keep pushing for answers and stability. Its ok to have a yell here too as we all understand. Hope you get some relief soon.


Jan

 

[Jeff D.]

You may also want to go on a liquid diet.

Welcome to the forum

 

[TheLazy1]

Well, I didn't like the idea of Prednisone due to the possible mental side effects since i like having a clear head 100% of the time.
Unfortunately I somehow don't think there is any other choice, all of the other medications are too expensive and in Ontario OHIP does not pay for prescription drugs.

As for my diet, it's pretty random but I don't eat much if any junk and I stay away from a few known triggers like caffeine.
Since I also have IBS it's hard to tell where the pain is coming from, it may be the disease acting up in general or something I ate - I usually can't tell.

I don't think I have it as serious as some other people as I was never hospitalized or lost serious amounts of blood.
I just got the intense pain, frequent movements and a little blood up until a few months ago.
It's strange how it doesn't seem as severe but refuses to respond to any medication.

 

[soupdragon69]

Hi TL1,

I was diagnosed with IBS during my recent admission on top of my Crohn's. Are you on any meds for the IBS?

I have found with taking the antispasmodics that my central pain and upper left pain have eased. However the "settling or filling up feeling" I get on my lower right quadrant is still there and my GP agrees this is due to the stricture/narrowing I have in my ileum they discovered during my admission also. I also get referred pain from lower right to left which I feel is more Crohns.

I am off gluten and dairy, on low fat and low fibre diet and seem to be managing reasonably well.

Your comments about it not seeming severe but not responding are very familiar. Pred may well help you and you may not have mood issues with it however, you wont know til you try will you? I know its devil and deep blue sea but if you dont jump you wont have a chance at stability which is all any of us wants. You sound pretty angry at the minute and I can understand why. But have you thought about how clear your head is if you are not absorbing all your nutrients due to your Crohn's? You might find things improve on that front and not been aware all this time what you have been living with. Just a thought..

Having the diagnosis is 50% of the battle but actually doing sommat about it in relation to treatment can be another ball game.

Hope you get something sorted soon rather than continuing to suffer as you are.

Thinking of you

Jan

 

[Kev]

Don't let the fear of potential side effects prevent you from trying the pred. From my exp w pred, side effects were a walk in the park and the benefits were/are great. Its only a short term solution anyway, but it does offer the possibilty of remission. If you try it and the side effects you experience are severe to extreme, at least you tried it

 

[Jeff D.]

Yeah when I was on Pred I started lifting weights and got bigger and stronger.

 

[healthboy]

Don't give up. There is hope in fighting this disease.

 

[TheLazy1]

Thanks for all the help and information.
I have decided to go on prednisone after talking to my doctor, all I need now is for my GI doc to call me back so I can get an earlier appointment. (currently end of oct.)

Is there any way to minimize the chance of side effects?
I was overweight before this all started and I don't want to be overweight again, though I am underweight now. ( 5'10, 116 pounds at last weigh)

Also, how do you all deal with pain?
I am out of painkillers for at least the weekend and of course it decides to act up again now.

 

[HDGirl]

Weight should not be a concern

Please don't see a weight gain as a reason to not want prednisone. The weight you gain is due to a lot of water retention. With Crohn's, weight can always be lost, but the key is to find a healthy weight and try to stay there. This may not be your skinny weight, but I'm sure you'd rather be a little heavier and feel good than feel like sh*t but be skinny.

I agree with soupdragon69... you have to take control and do what you need to feel good. Crohn's is like an arranged marriage. One you didn't ask for but are stuck with the rest of your life. You must learn how to live with it. You can fight it, but sometimes it wins... the best thing is to make sacrifices and learn what Crohn's doesn't like and what it does like.

Keep a journal and log what you eat, how you feel 30 min, 2 hrs, and 4 hrs afterwards. Document how many bowel movements and how severe the cramping. It seems like a lot of work, but it can help show what foods may be bothering you.

I also agree that a liquid diet can help rest the bowels and give them time for recovery. However, you must watch this sense you want to be thin, I don't want you to do it for the wrong reasons. Make sure to drink protein shakes (you can get them lactose free) or Boost and Ensure. Gatorade or Pediolite will keep your electrocytes up so you don't have heart palipatations. Make sure to take vitament suppliments. If you feel weaker, then you aren't getting enough calories.

 

[emma]

http://healingstar.skynetblogs.be/

 

[My Butt Hurts]

I have heard several people on here say they are refusing to take Prednisone because of the possible side effects. Remember - these are only POSSIBLE.
Remember that everyone reacts to medications differently.
I started at 40 mg, and tapered down each week. 35, then 30, etc.
I didn't notice any side effects at all. No puffy face, no moodiness (though I'm usually kind of b*tchy anyways) possibly an increase in appetite, but no weight gain. The only thing I noticed was that I was a little hyper, which is better than exhausted. I also started an anti-spasm at the same time, so maybe that was what made me hyper.

If you take it and have bad effects, you can always stop the medicine (though you do have to taper off this one I think. You could ask your Dr. for the fastest method for you.)
I'm pretty skinny now, but I'd much rather be a little heavier and feel good.
I wouldn't hesitate to go on Prednisone again.

 

[Mazen]

I took prednisone 3 times before for a period of 3 months each. The only side effects I got were acne (which went after I stopped), moon face and heartburn (you can take medicine for this if it becomes bothersome). Chekc with your doctor if you need to minimize salt intake to lessen the water retension and if you need to take any calcium or a multi...

If you are not able to achieve remission, you should take the prednisone, as it's the only thing strong enough to provide you comfort. After that the doctor will taper it off slowly, and if needed start you on immunosuppressive medicine to keep you in remission.

Also try to modify your diet and see what happens. There are some good books on this like: What to Eat with IBD, The New Eating Right for a Bad Gut and for a more radical approach there is the Specific Carbohydrate diet. You can check these books at Amazon.

Good luck, and hope you achieve remission soon.......