My name is Mark, I was diagnosed with UC just after I turned 30. Never had any stomach/digestion issues of any kind my entire life, and no one else in my family has shown symptoms of UC.
Some more about me:
I live in Boston, MA, have a beautiful and loving wife, a 2-yr old son, and we’re expecting baby #2 in just a few months. I have always been a very active and healthy guy. I rowed for 6 years in HS and college, then stayed in shape working out, running, hiking, walking my 2 dogs, etc. Once I got married and started working full time, the time for exercising obviously decreased a bit, but I’d say I have stayed in good shape for the most part.
My wife and I aren’t big drinkers per se, but we definitely enjoy a few casuals from time to time. Beers are my drink of choice, but I like most wines and I’ll do whiskey every once in a while as well. I probably didn’t have the best of diets from college and beyond, but I don’t really eat much junk food ever and I rarely drink soda.
Currently dealing with bloody stool, mucus, not much cramping really, but other side effects and related issues to the general UC symptoms.
New to Colitis Steroids Haven’t Done Much
Turned 30 in June 2012. I’ve always been a little lactose intolerant, but never to the point where I would say no to eating ice cream or anything like that. After eating a big piece of ice cream cake for my bday (ok 2 huge pieces… back to back nights), I started having some problems the next day – gassy, diarrhea, etc. Never had any problems in the past whatsoever, so I thought this was just an upset stomach and it would pass. Symptoms kept persisting, blood, mucus, etc. Took about 3 months before I ended up getting to a specialist and had a colonoscopy done, but when I went, they diagnosed me with UC. It’s only affecting my lower left section of the colon, but I’d say my condition is at least moderate.
Been in this flare for about 6 months now. Right after diagnosis, my doc started me on Asacol. This settled me down a little bit, but didnt put me in remission. After about 3-4 weeks, we then started on another steroid enema. Again, helped a little, but no remission. Just over a month ago, I started on prednisone. Initially I saw more progress, and I’d say I was about 80% back to normal. Started on 40mg of Prednisone, so my doc thought we’d try 60 mg and hope the increase would bring me home. It didn’t, and I actually got a little worse with the change. We’re tapering down now, but I actually have lost about 10 lbs since starting the Pred, not to mention I feel like garbage. This seems to be a miracle drug for most, but not me… very frustrating.
Because my body hasn’t responded to the medications so far, I’ll be starting Humira in the next few days. Having read a lot of personal storied on this site and others, I am a firm believer that diet and stress are directly related to symptoms of UC, so I’ve already started changing what I eat, how much I eat, and all that. But following the SCD and other diets is obviously challenging, especially with kids, full time job, and just life in general.
I would prefer to avoid going the Humira/Remicade route, but I can’t continue on this flare. My hope is that the combination of Humira and diet adjustments will do the trick and get me out of the flare, but since I haven’t really responded well to steroids thus far, I’m a little concerned that this may not do the trick.
I have a ton of questions, but really my MAIN QUESTION for other UC’ers is:
If you are taking medication like Humira or Remicade, are you eating a normal diet, or are you limiting yourself to one of the restrictive diets (SCD, Paleo, etc)? My intention is to try and eliminate as much of the “bad stuff” as I can, but realistically I just don’t think I’ll be able to do the SCD 100%. At least right away. If the meds don’t put me in remission, I’ll go down the full SCD path to try and eliminate the surgery route.
In addition to diet changes, I have also started taking a number of supplements: Probiotics, B12, Fish oil. From what I’ve read, it sounds like there are a few others that have worked well for other people: Slippery Elm Bark Powder, VSL#3 probiotic, L-glutamine, LDN, to name a few. I feel like I’m already overloading my body with a ton of changes, so I’m reluctant to start taking more things, but perhaps these are worth a shot anyway?
This site has been immensely helpful already, and it’s been refreshing to read so many stories and experiences from everyone that are going through the same types of things. Thank you in advance for any input!!
- Asacol – 4800 mg (1600 mg 3x day)
- Prednisone – 40 mg (20mg 2x day)
considering taking others:
written by Mark
submitted in the colitis venting area