Ulcerative Colitis- 35 years old

I'm new to the site. I'll just give you a quick recap of what has been going on with me. After the birth of my third daughter, almost 4 years ago, I started noticing that I was very constipated. I was told to take Benefiber and also occasionally used a stool softener, without much luck. A few months later, I started noticing blood when I wiped. I assumed it was hemmeroids, even though I had not had them ever before in my life. The bleeding started happening about 95% of the time when I had a BM. I kind of ignored it and just dealt with it because I was not having any real pain. Finally, after about 2 years of dealing with this on a regular basis, I was convinced that I needed to go make an appointment with a GI doctor. Digestive diseases run heavily in my father's side of the family. I finally went to the doctor and had a colonoscopy, which surprisingly showed Ulcerative Proctitis. I was given some suppositories and also prescribed Amitiza to help with the constipation. The Amitiza really helped with the constipation. The bleeding seemed to stop for awhile, but would always come back. I see the GI regularly and in October went in and told him I was still having bleeding, so he wanted to take another look. This time he did a sigmoidoscopy. The results showed Ulcerative Colitis and that it had spread since my last colonoscopy 1 1/2 years ago. He put me on Hydrocortisone Enemas twice a day for the past two weeks. That was not easy to take the time to do when you have small kids, but I did it anyway. I had hoped they would work, but I honestly think they made things way worse! I am now going to the bathroom 8-10 times a day, have not had a normal BM in almost two weeks, and having lots and lots of blood and urgency. It is scary seeing that in the toilet. I had my follow-up appointment today and was given 3 prescriptions, plus a probiotic! I am not the type of person to want to take medicine, so I really hate that this is happening! When I left the doctors office, I couldn't help it, and cried in the car for a good 10 minutes.

Here is what he prescribed:

Lialda (4 times a day)
Prednisone (30 mg for a week, 20 mg for a week and 10 mg for a week)
Librax (2 times a day)

I am most worried about taking a steroid. Can anyone ease my nerves or am I in for it?? He also wants me to go on a a low fiber diet, have my thyroid, liver functions and a stool sample and check for possible infection. I am a Stay at Home Mom and really don't have time to be sick. I'm feeling sorry for myself right now, although I know things could be way, way worse! I feel like an old lady with all of these prescriptions. Guess I am going to have to get myself a pill box like my grandmother had in the nursing home.

Any advice with taking these? Also, curious about diet. I was researching and came across the SCD diet. Does anyone have experience with that? I have always been a very healthy person so I'm upset all of this is happening.

Your story sounds very similar to mine, except I was diagnosed at 22 and my first symptoms weren't constipation but D. I was originally diagnosed with ulcerative proctitis but due to negligence on my part, it had spread to Uc. I'm a stay at home mom too and it can be rough to deal with a flare and having to take care of your children at the same time.

No one wants to take medications and my husband jokes when he opens the cupboard - he points to my pill bottles and says that it's my breakfast, lunch and dinner :)

I have never been on pred for my Uc but I have for other reasons. You're on a relatively easy dose of pred with a fast taper. But just keep in mind that that if you start having symptoms, such as bleeding that doesn't subside after the first taper, you may have to go a bit slower. Meaning, instead of lowering at 10mg each time, you might have to do 5 mgs instead. Some people do really well on pred and don't have any side effects while others have them almost instantly.

Have you ever tried the mesalamine enemas like Rowasa?

In addition to the calcium, you should ask your GI about Vitamin D as well - I believe it helps w/ the calcuim absorption. Very important while on pred.

Welcome to the forum, UCgirl. I'm sorry this has happened to you, and I understand how upsetting all of it is. It's very surprising to suddenly find out that you have to take a lot of medicine. The other unpleasant thing is that this is a chronic illness and you will be dealing with it in one way or another forever. The goal is to get you to the point where you are in remission and don't have to experience bleeding or pain or multiple bms or any of the other unpleasant parts of this illness. I hope that you've cried away the frustration for today - there are going to be other frustrating days ahead, but hopefully you will soon move past the sadness and on to figuring out how to get well and stay well.

There are many people on this forum who have tried or are using SCD. Search the term and you will get a lot of results.

The prednisone schedule you are on is interesting. 30 mg is not very much to start with given that you are having diarrhea or bms 8-10 times per day, plus blood, pain and urgency. Most of us start at 40mg/day and go down from there. My one time on pred for IBD I started at 60 mg/day. It took me 3 months to get off the pred, but it did completely address my flare. I would recommend that you talk to your DR about why s/he chose this dose for you. I would also suggest that you DO NOT reduce your dose until you have seen significant improvement in your symptoms.

Hopefully you will not have bad side effects from the pred - many of us don't. I personally loved the euphoria and extra energy the pred gave me. I eventually had some problems with insomnia, but as I was the mother of 2 young children when this was going on, there was always some chore to be done at 2 am, so I loved it, LOL. Prednisone is a great tool for quickly addressing a flare, but it is not a medication to be taken on a regular basis. You need a treatment protocol that keeps you in remission once you've achieved it.

Most people with UC and especially those like us with ulcerative proctitis do well with rectal meds. The suppositories you were given at first are ok, but better is a mesalamine enema. There are brand names and generic enemas out there, and you should absolutely ask your GI why you were not given a script for one. The orall 5-ASAs (Lialda for you) will not treat your proctitis, and perhaps not even your sigmoid colon very well.

Hopefully you can get the medical testing done that your DR wants and then put all that behind you. I find it annoying also that I have to keep up with so many DR appts nowadays but that is just the deal that I got. It is important to keep yourself well, and I know you can do it. You will get back to feeling well, I hope very soon.

Your story sounds pretty just just like mine.  I was a couple years older, had 2 little kids, never had any issues before, noticed constipation, then blood, took a few months to get myself convinced something was really wrong because I felt fine.  Went to see a GI, they did a sigmoidoscopy, then immediately after that my symptoms got way worse.  I cried a lot.  And yes, when you are a stay at home mom with young kids, it's hard to get that bathroom privacy that you really really really want when you're trying to figure out exactly what you're supposed to do with that suppository...

ANyway, I went right to the SCD, which didn't offer me any miraculous relief, but I also found my way to some alternative care practitioners (naturopath and Chinese medicine), and almost 2 years later I am still seeing these folks, have really modified my diet (in a nutshell, gluten-free, sugar-free, mostly grain-free, all natural stuff, I try to eat what seems to really work for my body, personally, everyone is so different in foods they can tolerate, or not).  I am not taking any meds and feeling great.  There have been a few little blips here and there, but I consider myself very fortunate to have found something that, at least for now, seems to work for me.

Good luck in your own journey through this.