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A little help / feel like I'm in the dark ages

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Ulcerative Colitis
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Posted 8/25/2010 12:13 AM (GMT 0)
This forum is a real revelation to me!
I am a 36 year old woman, diagnosed with UC in April 2010. I live in Guatemala, and we have limited access to certain meds. From what I 'm reading here, I feel like the advice and course of treatment my doctor is leading me on is from the dark ages!

I started with 3 mg of Pentasa (mesalamine) which only worked for about a month. From then, about mid May on, I've spiraled downward. My doctor pressured me from the beginning to start on oral steroids, specifically Prednisone, to control the flare, but I refused.

After a very debilitating vacation with my husband and kids in which I visited EVERY single bathroom in all 4 Disney parks (I had up to 12 evacuations a day, some of them disastrous :( ) I upped my Pentasa to 4 mg a day, plus a suppository at night, but no good.

A week ago I started on the steroid Prednisone (started with 30 mg, down to 25 this week, and 20 next week). My doctor basically promised me that all would be well with the steroid, that my colon would heal within three weeks, and I could just do maintenance with the Pentasa: but this hasn't happened. Half way into the course of steroids I feel very little improvement.

MY QUESTION IS: have any of you used steroids to calm a flare up? How soon did you feel the effects? How long did you take them for? (hey- that's three questions, sorry tongue )

Also: I'm curious as to why so many of you are using fiber therapy (like Citrucel). I'm avoiding fiber like the plague!

And: Probiotics? It only makes sense. Any particular brands anyone can suggest so I can order it online?

Thanks for reading!
Posted 8/25/2010 12:25 AM (GMT 0)
Hi Guat - and welcome!
Gosh, sorry for your troubles.
I was put on prednisone at the start - many of us have been on it. It sounds as if your doctor is trying a "short course" - that is the best, as far as side effects, but many of us have been on courses of steroids in which we've stayed at the high dose until the symptoms have become better, and then we've started to taper. I'm not a doctor, so I can't advise you as to the reasons for doing one way or the other.
My son was put on prednisone when we was diagnosed, along with Asacol (another 5-ASA, like Pentasa) and after about 5 weeks we started to taper him down. It took 3 months for him to get off the drug, but it did take care of the flare.
Might there be steroid enemas or mesalamine enemas available to you....? The medication in those reaches farther than the suppositories.
Probiotics have helped me a lot..... VSL is available online, and I have used Ultimate Flora Critical Care. (I'm sure other folks will tell you what they've used, also.)
I also benefit from fiber - but I find the fiber in supplements a lot easier to digest than fiber in foods. So - for me, when flaring, I take Metamucil but avoid most food fiber. Part of the difference is soluble vs. insoluble fiber.

Good luck!
Posted 8/25/2010 1:55 AM (GMT 0)
Hi..welcome to the forum!

I think your doc could have also put you on retention enemas and not the suppositories. But you can still try them...maybe after you taper more of the pred.

There are many kinds of fibres, and not all insoluble are bad...just ones that might cause you diarrhea or very loose stool or discomfort. Fruit/veggie.
I think Metamucil capsules are good.

q
Posted 8/25/2010 2:54 AM (GMT 0)
I'm reading this with tears in my eyes. Thank you so much for taking the time to read my post and adding your suggestions Songlady and Quincy. I really appreciate it.

It's been really hard to deal with all of this because I don't know of anybody else with the disease, so I've no one to talk to. My husband has been really supportive, but obviously, it's not the same.

Thanks so much for the advice. I'll surely look into the Probiotics and Metamucil.

Again, thanks!
Posted 8/25/2010 5:42 AM (GMT 0)
Hang tough....it takes a while for meds to kick in. Do consider the enemas eventually, but before you're off the pred.
q
Posted 8/25/2010 6:34 AM (GMT 0)
Yeah some fiber like psyllium is soluble and not so harsh as insoluble fibers like say wheat bran cereal or a raw veggies. psyllium can help with D as it absorbs and slows things down.
Look at alternatives to try and help if the drugs alone fail you. They don't work well for everyone.
Posted 8/25/2010 12:33 PM (GMT 0)
Welcome to Healingwell........you are now amongst people who can truly understand what you are going thru. So do not hesitate to ask any questions or concerns that you may have.

If you can get the enemas, then I highly second this idea. They can help you get off steroids a bit easier without flaring again. Sometimes when you taper down, you can notice an increase of symptoms - this is your body's way of adjusting. But if the symptoms come back more severe then you may have to taper the steroid a bit slower.
Posted 8/25/2010 5:29 PM (GMT 0)
When I was put on prednisone, I started at 60 mg which really knocked it out, and right away--like within a day. But I had a hard time getting off of it too--over a year. 30 mg just might not be enough.
Posted 8/26/2010 1:35 AM (GMT 0)
I am one of those that was put on prednisone almost right away. I started with 20mg a day and I saw no improvement; in fact the bleeding got way worse. Today I'm going up to 40mg a day after speaking with my GI doctor. I hope this will help me. I'm so happy to see that I'm not alone in this and that there are other people going through these same problems. Good luck Guategirl!
Posted 8/26/2010 2:37 AM (GMT 0)
Thanks everyone!
I went to the doctor today and although he started me on 30 mg of Prednisone for a week, and then we tapered to 25, I'm going back up tomorrow to the 30 mg. This time for 3 weeks (!) before starting to taper. I had started seeing a slight improvement (no blood, yay, and better formation) but all of that went away as soon as I tapered. I guess my body has been so sick for so long, it needs a good jolt to get it back on the mend.
Unfortunately, he confirmed we cannot get the Rowasa enemas here. He started me on Proctosteroid (a proctofoam?) as well (I thought of q when he prescribed it: treat from both ends, right?), which I hope will help with the pain.

Like I said before: this forum is a real revelation to me. It has relieved my anxiety so much to understand that I'm in this for the long haul, but there is hope.
Posted 8/26/2010 6:20 PM (GMT 0)
40 mg of prednisone for a day or two, then 30 and an agonizingly slow taper (every two weeks) works for me.

I also cannot tolerate fiber, especially when flaring. I especially have to avoid lettuces.
Posted 8/26/2010 8:47 PM (GMT 0)
Guategirl -
I hope the new try at the pred helps, and the both ends approach!
Keep us posted!
Posted 8/27/2010 1:11 AM (GMT 0)
Thanks songlady and Peety:

I did the Proctosteroid foam last night and wasn't able to get out of bed today till noon. The pain was unbearable, with chills and everything :( I'm giving it a rest tonight, will try it again tomorrow, just in case that wasn't the culprit.

Feeling a little discouraged...

Haven't dared try the fiber therapy yet, and Peety: you are absolutely right: I haven't had a lettuce leaf since April, or beans, or nuts and seeds, popcorn etc. I asked my doctor about vitamins, he hand't even thought of prescribing them (grrrr)
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