About 6 months ago, when I first posted on this site, I was diagnosed with UC during an awful flareup. I had a scope and boy did my entire colon seem ulcerated. The MD put me on Lialda 1x a day and told me to come back in 6 months.
After a few weeks I started to feel slightly normal again. I wasn’t running to the bathroom every 15 minutes and no more blood.
Despite the fact that my MD didn’t go into too much detail about the disease, I was happy that I was finally feeling healthy again. I had also started the SCD diet (which Dr did not approve of), but was adding some starches like potatoes back in. My family and I still refuse to believe that diet does not play some sort of role in aggravating my UC.
Around my 6 mo point I made an appointment to have a check up. Much to my surprise about 3 weeks ago I entered into my 2nd flare. Not as bad as the first, but while my bathroom trips were less frequent, there was more blood, fluid loss, and a new friend, muscle spasms. I tried to hold out until my next gastro appointment, which was a mere two weeks away. I had already dealt with it for 3 weeks and successfully hid my pain from coworkers and family, why not another 2?
Wrong.. my worried boyfriend brought me to the ER yesterday for dehydration. I had spent much of the morning in the bathroom crying because of the muscle pain.
They put me on an IV of fluids, pushed some steroids through the IV, took a lot of blood and gave me bentyl to calm the spasms. They also called my gastro and told him I needed an appointment sooner than 2 weeks. When I left the ER I was put on a tapered dose of the dreaded Prednisone 60mg tapering after 10 days, Bentyl for the spasms, and still continuing to take my 1x a day Lialda.
On my own account I have decided to go back on the SCD with no cheating this time.
This morning is the best one I’ve had in 3 weeks, besides the Prednisone making me a zombie walking my apartment all hours of the night. The Bentyl has also seemed to help with the spasms. The only thing I dread is having the Gastro tell me he wants me on Prednisone continuously. I am worried about the weight gain, insomnia, and mood swings. However, I guess that may outweigh getting up for work an hour earlier so I have time to sit in the bathroom.
I’m also fortunate enough to live within driving distance of Johns Hopkins Hopsital, where I will be seeing the head of their IBD program in January. Hopkins is rated 3rd in the country for gastroenterology and is up to date on all of the newer treatments for UC.
I am wondering if anyone has only had Prednisone on a tapering dose and not for longer than a period of 2 weeks? I read the side effects on the label, but also wondering what other side effects you’ve maybe experienced being on it for short term.
Good luck to everyone out there. I know there are those who have it far worse than I do and not sure you handle it, but all these stories help me to believe that one day I will feel better!
Nicole
All of the posts from “Annonymous UC” are from ulcerative colitis people who anonymously submitted stories or Doctor Reviews, medication, supplement reviews etc… I post all these stories to the site, but they’re different from my own personal stories so hopefully this account makes more sense:) -Adam – founder of iHaveUC.com
Hi Nicole,
You must live near me, I live in Baltimore as well—very close to Johns Hopkins. You also seem similar to me in that I am also taking Lialda and have the same problems with flare, they seem to differ every time. The very fist time I ever had a problem, before I was diagnosed, I only had bleeding… lots and lots of bleeding. No pain, no diareah. that’s why I waited so long to go the the GI. I figured it was hemmoroids or something. I had a scope and he diagnosed me with Crohns/colits… but I only seem to have symptoms of UC, so that’s what I think I have. Anyway, I was fine on my maintainence drugs for years until I had a cold and was given antibiotics. that sent me into a flare that I had lots of D, but no B with. I got really sick and they prescribed me with mercaptopurine and a tapering dose of prednosine starting at 60mg. I was tapering for quite some time, I’d say at least 6 months.
Back then (about 5 or 6 years ago) I hadn’t heard of SCD, and I ate anything I wanted. I also gained a lot of weight too. My Doctors always said diet has nothing to do with healing, I think they are wrong as well.
This year, I had a very stressful time in January for various things, I also had surgery which I had to have the good old friend antibiotics for. That, on top of the fact of the stress, and I wanted to see if I could go off my mercaptopurine, I got a flare. This time was D again and no B. Again with the tapering of prednisone, this time starting out at 40mg. When I wasn’t getting better, my Doctor suggested remicade and after I read the side effects of it, I did some research and found the SCD. I started that and started to have improvement right away. I got off the pred a few months ago, and almost immediately, I noticed for the first time, a tinge of pain in my lower abdomin. I thought it was ovary pain, like a cyst. had it checked out… not so. a week later, I started with Bleeding in the stool. So now I’m like, hmmmm… no D this time, only B and some pain. WTF? I don’t get it.
I have some urgency in the mornings like you. I wake up early, have to go… lay back down… my gut moves around… have to go again… lay back down… the same and have to go a third time before work in the morning. Luckily, that seems to be the worst of it. two weeks ago, I went back to the GI and told him about the B and pain… back on the pred… 40mg again.
So, the past few times I’ve been on the pred, i did not gain weight, I think mostly because of the SCD, and I watched my calories. I get the insomnia, the first time I was on it years ago, I got major purple stretch marks all over the place. I broke out in prednisone acne. Now to circumvent that I use an acne gel with benzoil peroxide in it and it seems to do the trick. Though, I’ve been on the pred for about 2 weeks now, I decided to wait to use the gel until I got pimples, and I haven’t gotten any yet. I don’t get that either. I am still experiencing the B and urgency on the pred this time and am starting to wonder if maybe the pred isn’t working for some reason. Can that happen I wonder?
I’ve already done the intro diet 3 times… but I decided in a last-ditch effort to do it one more time this week, but extremely strict, meaning, for breakfast, only pureéd butternut squash with nothing in it (you’d be surprised how tasty that is for breakfast, it’s sweet and separates nicely in the fridge to reheat every morning in the microwave)… lunch and dinner I’m eating nothing but pureéd carrot/chicken soup… and I’m doing this for 4 days. It may seem drastic, but I think that’s the best I can do. If this doesn’t work, diet will not heal me and I am ready to deal with whatever happens… but I’m keeping my fingers crossed at the moment!
Anyway, I have been on varying doses of prednisone tapering over weeks, and at one point, months. I got many side effects, but they all go away after all. The main thing is to get off of the high doses in the long term because the worst thing would be losing bone density and skin elasticity, but other than having joint pain and stretch marks in the short term, you will be fine in the long term.
Thanks for your comment… It helps to know that others out there go through the same thing. I am in the northern VA area, so Hopkins is my first choice.. Just can’t get in until January. I switched my gastro again for the time being.. My one fear was always that I would be put on Prednisone.. Today at work I developed an extremely flushed face, almost a dark red/purplish tone. That went away from my face and then spread to my neck and now I think it’s completely gone.
I am also strictly adhering to the SCD again. After starting that yesterday and the prednisone/bentyl I have had the D, but not so much B and no cramping. I think that’s more thanks to the medication.
Your diet doesn’t seem drastic. When I did that I was also on Lialda, but I felt better immediately I just didnt have the willpower to strictly adhere to the diet and added starch back in. Now that I think about it, I was on a strong antibiotic in early September right when my flare began. I wonder if that’s what set it off this time. How much Lialda are you taking? My DR still has me on my Lialda in addition to Prednisone/Bentyl. I wonder what the new Gastro will tell me tomorrow… Good luck to you getting through this flare!
Yes, the side effects of prednisone are horrible… but it helps us heal in the short term… and hopefully throughout the long-term as well. As far as willpower goes… this diet is definitely a test for willpower. I have people tell me that they would rather die than eat the way I do. It’s not so bad… the hard part is the anxiety that I have associated with eating at restaraunts with people. I try to avoid it as much as possible, but sometimes you have to. I do miss eating anything I want, anytime I want, but… if this is what I have to do to heal myself, I have hope that I’ll be able to eat anything again one day… maybe not sugars or as many starches as I used to, but it’s a healthy diet, none-the-less.
I am currently taking 2 pills, twice a day of Lialda. My previous GI Doc had me go up in dose when I had my flare in February and i just kind of stayed at that dose for the time being. I used to just take two pills in the morning… but I’m going to stick with the 4 pills a day at least until I see more improvement.
I wouldn’t doubt that the antibiotics had something to do with your flare. I think we are over-prescribed them anyway. I used to think I needed them whenever I saw white spots on my tonsils and felt I was getting sick. I figured it was Strep throat again… but after the last time I took them for that reason and I got sick with UC, now I just wait it out and figure that’s an immune response to getting sick anyway (the white spots on the tonsils) and they always go away. go figure.
Thanks for the good luck… and good luck to you as well. We all need it and we all need the support of others. It is always good to hear others’ stories, whether people are better off or worse off than we are, it helps knowing that we’re not alone out there, because it certainly feels that way a lot of the time.
I went to a new md today and am finally feel like at
least I’m starting to get on the right track. When he looked at
my chart which shows pan colitis he couldn’t believe I was only
on 1 lialda a day. He upped the dose to 4 and now wants me to
take the enemas. I’m nervous about that making my cramping
worse but I know each person is different. He also mentioned
the possibility of remicade in the future . I’ve heard about some nasty
side effects. He didn’t discredit the diet said if it works for me then
stick with it. All I know is I’m just ready to feel normal again.
Hey Nicole,
Good job for getting on with a new doctor and feeling like you’re on the right track. For me, one of the best things in the tough situation of having UC was leaving a doctor’s office feeling like I was on the same page as him/her. its tough feeling comfortable with the disease when you are at odds with a doc, and it sounds like you two are on the same team. CONGRATS on that!!!!
I was just diagnosed with UC in December after having D for 2 months (the B showed up after 7 weeks of D). My entire colon was ulcerated…I couldn’t believe that it was so bad even though it seemed like my symptoms came on so abruptly. I’m also in the Baltimore area and I see Dr. Rai. He put me on Asacol HD (the max dose, 1600 mg, 3 times per day), prednisone 10 mg, mercaptopurine 75 mg, and 3 different trials of various antibiotics plus a daily probiotic and vitamins. He has talked to me about going to once daily Lialda once I achieve remission…but we may have to go to Remicade instead if I don’t get to 100%. I’m already a lot better and just had a 2nd colonoscopy (3 months after the 1st one) which showed significant improvement — the only areas that are affected right now are the lower bowel and rectum. So now, on top of the medications, I have a suppository that I insert daily (talk about not feeling attractive!). My doc also recommended a slow taper off the prednisone since I’m getting better, have no D, and no B (although I am waiting for the day when I have normally-formed bowel movement). Anyway, so I went from 10 mg to 7.5 for the past 5 days and, starting yesterday, the D is back! I’m wondering if 2.5 mg of prednisone could have been making that much of a difference??