Confused?!?!

[Tina_86]

Hi

I have only joined forum today and after reading some posts I think I am more confused in terms of my medication etc.....

As far as I know Mezavant is the same as asacol, I have been on Mezavant XL 1200mg X 4 daily now since last Aug. When I first started taking this I was also on predisone 40mg but to this day continue to have constant D! I stopped the pred in Dec 2010 and am pretty much the same now as when I was on it.

My crohns is in both small and large bowels.

Imuran - this is my next move, GI believes my meds need stepped up but I have to go through further tests before moving onto Imuran, anyone hav experience with the med? I am quite worried about the side effects such as risk of hair loss and increased risk of cancer?!

Over the past few weeks I have started to cramp quite badly at night time and as said continue to have constant D but thankfully not bleeding as much.
Would I be right in thinkin I have never really been in remission yet?

I am on low residue diet and rarely touch alcohol.... just not worth it anymore! I also get b12 injections every 3 months, never have any energy to do anything and have constantly sore joints - pain with this can be very extreme.

Pain relief - I tend to take paracetmol or co-codamol first, if these don't cut it I have tramadol but I try with all my might to avoid this because it makes me feel so sick the following day and literally wipes me off my feet for 2 days! Tramadol is the only pain relief that actually works for me when tummy is cramping really badly, can anyone suggest something similar that works well without the horrible effects of tramadol?

Any suggestions or advice would be greatly appreciated as I am feeling a wee bit lost and confused right now!

Tina

 

[Astra]

Hiya Tina

When I had terrible D, nothing would stop it or the pains except Codeine Phoshate.
This is in co-codamol but OTC co-codamol has 8mg and 500mg paracetamol.
Codeine Phoshate at 30mg is prescription only, so ask your doc.
Be aware tho, this med is highly addictive if taken long term.
Go easy on the Tramadol too, altho it's an excellent drug for pain relief, not a good idea long term, highly addictive and habit forming, as well as not so good on your guts.
Maybe a course of Entocort would help? Not as intense as Pred but works well in the small bowel.
Give your doc a ring, ask for advice,
xxx

 

[Jennifer]

Only thing that got rid of my diarrhea was 6MP (Purinethol/Mercaptopurine) which is in the same class of drugs called immunosuppressants like Imuran. I'm currently taking 50mg of it and have taken it for over 10 years. You must have regular blood work done when you're on these types of drugs. I get my blood work done once a month to make sure that my kidneys are functioning properly etc.

When you're on the right medications and your disease is under control, there's no need to use pain medication on a constant basis because you wont be in any pain. If I were you, I'd get my disease under control rather than mask your symptoms with pain meds. Using pain meds in this instance is like putting a bandaid on something that needs stitches. Ask you doctor about other immunosuppressants and why he's choosing Imuran over any of the other ones (like 6MP). None of these types of drugs are without side effects. Neither are Prednisone and Mezavant. They can all make you sick. That's just the nature of having a chronic illness that has no cure.

So we have to choose between feeling miserable and having surgery after surgery until there isn't enough bowel forcing us to have a permanent stoma (bag/j-pouch) and dealing with the possibility of death in some cases OR we can take medications that have SUPER scary side effects and hope and pray that we'll have a better quality of life without the horrible side effects (and in all honesty, the good outweighs the bad when it comes to taking medication as the number of deaths have decreased over the years). Sometimes the disease it too advanced and medication wont do anything for it and we'll need surgery anyway (happened to me) but that isn't going to happen to everyone and that doesn't mean that medication wont help you after your bowel resection. So in my opinion, its best to take the right meds to keep it under control as much as you can.

Welcome to the forum!

 

[co2]

I have been on Imuran and had no problems with it at all. It gave me zero side effects and the only problem I had was the cost of getting my bloodwork done while on it. It is a scary thought that it would lower your immune system but my gastro always told me it wasn't anything to worry about.

 

[Jennifer]

It is a scary thought that it would lower your immune system but my gastro always told me it wasn't anything to worry about.

And it truly isn't anything to worry about unless you're already on a medication that lowers your immune system or you're affected with an illness like AIDS etc. But if you were then they wouldn't suggest taking it in the first place. When I first started taking 6MP I got every Tom Dick and Hairy cold that came along but that's stopped after taking it a few months. Take precautions like washing your hands often and using hand sanitizer and avoid areas where you know sick people are (wear a mask if you want when you go to the doctor's office but it's not necessary).