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Not getting into remission, help meeeee

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Ulcerative Colitis
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Posted 9/26/2009 11:12 AM (GMT 0)
Female
22 years old
130 pounds
Diagnosed in 2004

I had a flare in in Feb 2009 and my doctor put me on Prednisone again, which was fine by me. I feel great almost immediately after taking prednisone. As I started to taper off I lost my insurance and so I had to stop taking lialda and had another flare up. My doctor didn't want to put me on prednisone again, and prescribed me a medication I couldn't afford (he didn't know how much it costs). I thought I'd just wait and deal with it until I got to Germany, because I thought I'd have good insurance here, but it turns out I can't get insured with my colitis for under 600 euros a month, which I also can not afford. So now I'm still paying for everything related to my colitis, but really I would pay anything now to be healthy again (predisone being so cheap is soooo tempting).

I've been having urgency for 4 months (sometimes urgency once a day, some times 5 times a day) and blood and pain now and then (every couple of days) for 6 months. I've been on 2,000 mg Salfasalazine for 4 Months and then 3,000 a day for the last 2 weeks...but I don't know if it really does anything but make me nauseous. I'm also taking some fish oil, but not regularly. Not sure if it helps.

My doctor here really doesn't want me to take predisone again, and I guess I understand, but I'm really sick of this urgency. I'll 22 years old, I should not be pooping in my pants. I've tried to be patient and try alternatives...I've cut out dairy and even spent a week eating only the most harmless of foods, but I didn't feel better, I actually felt worse which is why I stopped. And I'm depressed about it so I want to eat even more unhealthy than normal.

So what should I do?! Ask for prednisone? Is there another step between Salfazalazine and predisone that I should push for? And I'm sick of this illness being a trial and error thing. Someone should just tell me what to take to make it better! But I'm still thankful that my colitis isn't half as bad as some people's on here.

Thanks for letting me complain! I'll be thankful for any advice!
Posted 9/26/2009 3:09 PM (GMT 0)
well, other than the drugs i take (see sig) what really pushed me into remission was diet, this time. i have a post here somwhere, but long story short- i changed my diet to pretty much all oatmeal and yogurt. oatmeal for breakfast, and plain live culture yogurt (with no sugar, fruit, etc. in it) with fresh cut fruit added (so i can eat it- too bitter plain) for lunch and dinner. it took about 2 to 3 weeks, but things really started to turn around for me. i stayed on the medicine as well. it seems like this kind of diet helps some (probiotics in the yogurt, probably), and it may help you, it may not. we all seem so different. i hope others share their success stories with you, and that you are feeling better soon no matter what you choose to do.

prednisone seems like a viable/cheap option for you, but i understand your reluctance to take it. i hate it, aside from its side effects- and who knows what it has done to our bones. you could also try 6 mp, i believe there are generic versions of it, so it can probably be had for cheaper than other new treatments (like remicade). are there any other options in germany i don't know about? sulfazalazine is old- you could try the 5-ASA, or mesalamine drugs (asacol, etc., but you said you had tried lialda), some find faster results with colazal, but like everything else with this disease, it's a roll of the dice.

so, my advice feel free to take it or leave it or even reply and discuss it- not necessarily in order of importance;
1) change your diet
2) try colazal
3) take loperamide (1-2 pills daily ONLY, don't overdo this!) for the urgency
4) take psyllium powder (metamucil) once every day


for ONE MONTH do this and see if it works. if it doesn't help, ask for 6 mp (the generic, since cost is an issue for you).
Posted 9/26/2009 5:03 PM (GMT 0)
     I'm on Colazal, been on it since 2000.  I am also on 6 MP for seven years.  Save your money.  Neither has kept me in remission.  I still get flares and they are occurring more frequently.  My doctor said it isn't diet related but I tend to disagree.  This morning I had a cup of coffee (half decaf and half reg) with hazelnut creamer, 1/2 wheat bagel with low fat cream cheese and cranberry juice.  I have already been to the bathroom four times and noticed blood too.  I have been off prednisone for a month and certainly do not want to go back on it as I already have osteoporosis from taking it over the past eleven years.  I went to a GI specialist on Thursday at the Univ of PA Hospital in Philadelphia.  He gave me a diet to follow but I haven't looked at it yet because my regular GI doctor always has told me this disease is NOT related to dietary.  Well, I can just bet it is.  I also have diverticulosis and the diet for that and UC are two entirely different diets...ugh.

     All I can tell you is...keep to a low residue diet.  Try the Cort enemas.  They are not very expensive.  They aren't as risky as the oral prednisone.  If your condition worsens, then your only option would be a SHORT round of prednisone.  My doctor usually starts me at 40 mgm with a 5 mgm per week taper.  When he tries starting me at 20 mgm it never does any good and I wind up taking the darn stuff longer than I would like.  Good luck

Posted 9/26/2009 6:11 PM (GMT 0)
Hello there,
I was diagnosed in 1979 and after3 unsuccessful years of taking prednisilone by mouth and also the liquid enemas - I gave up and sought the advice of a homeopath -- this very much related to diet and positive thinking. I went into remission for 4 years - without meds. A stressful family situation brought it back on and I was not in a financial position to attend homeopathy - so I returned to the hospital -- they did not undermine my faith in the homeopathic treatment and encouraged me to follow the advice given but to also take prednisolone and sulphasaladine ? I had a bad reaction to both and asacol was prescribed. I battled on then a change in lifestyle brought about remission in 1994 and remained as such ( taking 3 asacol tabs/ day ) until 2008. Unfortunate advice from a new consultant ( he said after 14 years I was cured !! ) led to a flare up a year later. I quickly remembered the homeopathic advice and re prescibed asacol and took predfoam enemas as they suit me -- luckily within 3 months I was back in remission. Now that's fine but in 2 weeks I have had " tummy upsets " I put the first down to gorging on home grown tomatoes and the second ( yesterday ) to eating tinned soup the day before ?
So what is the point of my writing - just that diet plays a part in easing the situation - not necessarily curing it. For me a combination has worked. With all things though esp. UC it is very much trial and error as we are so individual Should you wish to ask me about the diet I will gladly offer my help.
You must trawl through the site and look at even old postings for helpful advice. Happy Healing smilewinkgrin
Posted 9/27/2009 11:49 AM (GMT 0)
Thanks everyone. Nice to have some support...although I'm still not sure what I'm going to do. : )

I think I'm going to try the low residue for a while... I don't know if I can get colazal, loperamide or psyllium powder (metamucil) in Germany, but if I don't feel better in a week or two I'm going to go back to the doctor and maybe he can suggest an equivalent. My Doctor in the USA wanted me to start taking 6 mp a while ago, but I wanted to wait until I got here to start something new...maybe now is the time.

It's really hard not to take this prednisone though! It's sitting here on my desk! (my old doctor gave it to me for an emergency).


But yes, thanks again!
Posted 9/27/2009 12:59 PM (GMT 0)
Hi -- see also -- the thread " Meds not working, feel horrible " Do trawl thro the site esp some of the older comments. To do this click on the member's name ( in Blue ) to see all their threads from the past. Happy Healing
Posted 9/27/2009 3:27 PM (GMT 0)
Here are two things to ask your doctor about:

1) Cortisone rectal foam. Here is it called Cortifoam but in Europe it's called something else. It's easy to use. Much easier than the liquid enemas. (You can insert it standing up and it feels like nothing going in.) It works very well, I think, for helping urgency. The steroids are not absorbed through the system like w/Pred. It's is much safer to use for a long period of time.

2) Asacol rectal foam. Once you get past this bad stretch -- which you will!-- it's easier, I think, to stay in remission if you use some rectal meds. Asacol foam is not available in the US but you can get it in Europe, probably in Germany. It is the same medicine as Colazal, Lialda, etc. but in topical foam. If you have tried Rowasa enemas, this is also the same medication but easier to use and without one ingredient that some people can't tolerate.

Both of these meds were cheap when I bought them in Europe. (If they are not cheap in Germany, try Italy where meds seem both inexpensive and bought easily with foreign prescriptions.)

I find the Cortifoam helps get me out of the worst days. You can use it in the morning and night to get started.

I hope that helps. You can also ask if you can get Lomotil in Germany. It's a medicine that slows everything down in the colon.

Hang in. It's difficult to be away from home and not feel well. I like to think of my flares as temporary. It always helps to assume I'll be feeling better next week!
Posted 9/28/2009 3:45 AM (GMT 0)
Guten Tag, google SCD diet. It puts me in remission every time - within 5 weeks. I usually feel better in 7 days. Let me know. (I used to live in Bremen).
Posted 9/28/2009 6:06 PM (GMT 0)
Try another doctor? I've taken courses of prednisone as often as twice per year, with no permanent effects. It's not always bad, and was practically all there was for a long time.
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