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I was diagnosed with severe Ulcerative Colitis almost 3 years ago when I was 17 years old.  Initially I was put on 30mg of Prednisone, 4000mg of Pentasa and then went on a liquid diet for a few months.  Months later, I was able to manage my disease with 3000mg of Pentasa and a holistic diet and remedies.  I was then in remission for a year and a half.

In December 2014, I started another flare of UC.  I was put on Prednisone from January-April, and struggled getting off of it because my symptoms were coming back (mainly intestinal bleeding).  I then tried the hydrocortisone enemas and suppositories but they didn't work.  June 23, I was put back on Prednisone and adjusted my holistic diet.  I am doing better, but now that I am almost weaned off the Prednisone, the intestinal bleeding is starting up again.

My doctor wants me off the steroids ASAP, and is recommending beginning 6mp.  I have read a lot about them and talked to my doctor about them, but I am very nervous about starting this drug.  Anyone that's been on them, could you share your thoughts and experiences with me? I would like to hear as many opinions as possible.

 Reply posted for kgerman17.

Hi - I was diagnosed in 1995 at the age of 18.  First I can tell you that you can live a "normal" life, but you will learn to be extremely type A organized just in case a flare gets in the way of your studies or work schedule.  Just try to control the things you can in order to be better prepared for those you can't.  it is a skill that not only helped me get through college, but is very useful in the work world!  

Next, get off steroids as soon as possible.  Use Uceris if need be over prednisone.  Long term steroid use will lead to problems down the road - especially bone issues.  I was in my early 30's and diagnosed with osteoporosis because of my steroid use!  It is sometimes necessary to get things under control, but always look for other options.  

I tried all kinds of meds, and the only one that seemed to help me was Humira.  The biologics have had good results for a lot of people.  I tried Remicade and that didn't work, but Humira did.  It is losing it's effectiveness now I can tell, but I had 8 good years on it.  Always look for online coupons for Humira and other meds to help with out of pocket expenses for any name brand drugs.  I pay $5/month with my insurance and the coupon, and it is a $1650/shot med!  

I'm about to try VSL#3DS for the first time.  Again, mail order pharmacy covers it but it is pricey and no coupon that I've found yet.  If you have a good mail order pharmacy through your insurance co, ask them if they cover it.  It must be the DS strength as that is the only prescription strength out there.  

Good luck!

Hello,I saw your post and also a lack of reply and want to give you a bit of hope. We, too, have worked through several levels of medication. We understand that a healthy bacterial gut biome is the key to long-term health as well as the future of the field for many progressive practitioners, but that help for that can be difficult to access in the US quite yet. We look forward to that changing in years to come. Meantime, medications are required to manage symptoms, and a healthy diet can definitely help. I dont know precisely what the earlier post was referring to as a holistic diet, but I can share two things that have been proven: UltraInflammX or the Xymogen brand alternative (slightly more palatable), which is a low-allergy protein drink with a lot of anti-inflammatory components, and an anti-inflammatory diet. The diet most widely recommended is Dr Perlmutters Grain Brain diet, which is loosely based (not rigidly adherent to) a paleo approach. The point is, elimination of gluten - in fact all grains - starches, sugar, most dairy. Theres a cookbook, too; its actually not as deprivation-feeling as it sounds when you do it. Helps all kinds of autoimmune and inflammatory illnesses, as its name suggests. Emphasizes healthy proteins and vegetables.Definitely take a high-dose, broad (refrigerated) probiotic every day as well, such as VSL3 DS. Bacterial gut health seems to hold the key in every progressive article/study/ discussion the leading practitioners of the world discuss, even while patients w IBD do need prescription meds on board as well while the researchers continue to work to figure out how the pieces and parts fit together (genetics, diet, gut biome, etc.)Maybe you could discuss it with your GI and/or a Functional Medicine practitioner to devise a plan thats best for you.Wishing you the best.

 Reply posted for alabonte.

alabonte -
Has the humera helped you? Have you noticed any improvements, as the mesalamine has not helped. Been off and on ucericis -steroids for several months with no real improvements.. 

 Reply posted for kgerman17.

Hello! 

I was diagnosed just over a year ago. I am a 23 year old female, and I am still adjusting to life with UC. I can't really say I've reach remission yet and I've just been questioning if I'll ever get better. I was enduring a really bad flare over 4th of July and my doctor put me a on Predizone. I know a lot of people don't like it, but I never seemed to have any bad symptoms. I was just happy with the instant results of feeling better. 

I started taking mesalamine (orally and in enemas) and that didn't even seem to work so my doctor put my on Humira about 4 months ago. I have to say it's a lot easier than the mesalamine, but it can be pricey! Humira offers a savings card so I only have to pay $5/month (2 pens). I can't say that I've seen any results. 

I feel like there's so many factors that go into a flare-up and it's hard for me to pin point what is causing it. I would like to know what holistic diet you used? How big of a factor does alcohol play? 

I've cut out dairy and I tried using Turmeric, but I stopped because it made my BM's EXTREMELY urgent..and they were already pretty urgent. 

Anyways, I'm just looking for some holistic support. I'm at the point where I don't think I'll ever get into remission. :(