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Ulcerative Colitis
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Posted 12/20/2016 12:15 PM (GMT -5)
I've been following this site for a while, finally decided to post and get some of everyone's insight - seems like a lot of good info out there.

To start off, I've been in my first major flare since around late may/early June. I was originally on balsalsizide upon diagnosis which held up well until I got sick and took some nsaid's (which I think really jump started the flare honestly) I'll never make that mistake again.

I since moved on to a few new drugs and this is my current regiment: Humira shot every two weeks, fourth week of 40mg daily of Prednisone, and just started 50mg of azathioprine five days ago, as well as canasa for the last ten days.

I've cut out gluten for the last two weeks, as well as minimized dairy consumption with the exception of kefir mostly. I have noticed a change, but still having some BM issues.

Symptoms are as such at the moment: usually use the restroom 1-3 times right after I wake up, usually a lot of blood in the very first one and it subsides through the day. Once those are done, I've only been having one more usually right before bed. There are pieces of formed stool in there, but it's mostly d or a white cloudy substance (mucas?)

Since I've seen a lot of suggestions on here, do any of you suggest changing anything to my current regiment ie adding fiber supps to maybe get some bulk, slowly adding more foods at all, or just waiting the few months for the azathioprine to really kick in (as I know it takes minimum of 8 weeks) or at least wait til I'm off Prednisone?

Sorry for the winded beginning!
Posted 12/20/2016 12:37 PM (GMT -5)
Welcome to the forum. Sounds like you're being well managed and I'd expect the 40mgs of pred to quickly control your flare symptoms. That buys you time while the humira and azathioprine build up to optimum therapeutic (healing) levels within your body (your maintenance medications once you get off of the pred).

It's generally 6 weeks for humira to show any initial results. Some get quicker results (within a few weeks), others take the full amount of time.

It's typically 2-3 months for azathioprine to show optimum results, as they start you in a really low dose and increase it as good blood test results come in (and a minimum of 6 weeks to notice the impact of a dosage change). A more typical dose of aza is 140 to 175mgs a day for a 155 pound (or 70 kilogram) individual. So, 50 mgs is a typical low dose starter given to most.

Fiber is best when you're mostly out of a flare. As fiber cannot turn watery diarrhea into solids, but it can help firm up slightly loose stools which results in sligthly less frequent bms and slightly reduced urgency. Fiber bulks and is abrasive. An inflamed intestine is narrower inside and is raw and bleeding. So those two shouldn't meet.
Posted 12/20/2016 12:37 PM (GMT -5)
Hi, welcome to the site. Your note about taking NSAIDs stood out to me - I significantly worsened this flare by taking ibuprofen back in May of this year, before I knew it was not an option.

To manage pain, I still take acetaminophen if absolutely necessary (generally regarded as safer than other OTC painkillers). Otherwise, if I have a headache, I put peppermint essential oils on my forehead and it tends to help. Are you in a state that allows for the use of medicinal cannabis?

I hope you find some alternative methods that help you manage pain as well!

Take care
Posted 12/20/2016 12:54 PM (GMT -5)
Thanks iPoop, good to meet you.

I've been on humira for about two months now, unfortunately with no significant results. That's when the doc suggested adding in azathioprine to the mix as I believe his words were that they have a synergystic effect when taken together. I'm really hoping this is the right mix for me. My most pressing goal is to hault the bleeding and at least get that taken care of. I'm new to a lot of these drugs aside from what my doctor has explained, I'm hoping that blood management in the stool is one of the therapeutic benefits?

Thanks for the heads up on fiber, I will continue to hold off on adding that to the diet until I see more substantial/steady results. It's a tough one, I sure do miss my oatmeal for breakfast.

Hi Sara,

Good to know that acetaminophen is at least an option when having minor aches, but after what those others I believe did to me I'll stick with the natural routes! Unfortunately cannibus of any form is not an option for me, so the search will continue to find that just right mix for me.
Posted 12/20/2016 1:24 PM (GMT -5)
Welcome to the forum!
Posted 12/20/2016 6:49 PM (GMT -5)
your symptoms sound like my current flare. My flare started in July last year, I was taking Mezavant tabs and Pentasa enema. After a scope, doctor started me on 50mg Imuran for 4 weeks then increased to 100mg in October. I don't see much improvement yet. I still go 4-5 times in the morning with blood and then a white liquid like discharge just before the bed.

If Imuran doesn't work he will be adding remicade to it. I'm really worried though. And I'm not in prednisone.
Posted 12/20/2016 8:29 PM (GMT -5)
Sweety - Wow you are right we sound darn near identical. I'm somewhat jealous that you are at least not on Prednisone currently, but perhaps that would give you the help until the imuran kicks in? My doc mentioned a potential shift to remicade if we don't get the results we want from the azathioprine/humira combo. It's the waiting game with this disease that can be the hardest to deal with sometimes. My hope for the right combo is the only thing keeping me going sometimes!

I've been diagnosed with left sided colitis, and my last scope showed that the inflammation was pretty severe. I know it's gonna take a lot of time to get back to normal, just wish I could have a way of knowing if what I'm doing is helping or just keeping me where I'm at. It's a strange disease.
Posted 12/24/2016 6:24 PM (GMT -5)
I wasn't sure to start a new thread about more new guy questions, so I'll just post a few new guy questions here.

- Over the past day or two, I've had several very formed stools (followed by a little leakage after) but with those stools comes a great deal of pain almost to the point of tears in the eyes. I've been trying to stay low fiber, and there are bright red streaks in the majority of these when they are any kind of form. What could this indicate?
Posted 12/24/2016 7:38 PM (GMT -5)
It indicates you've healed high up but have inflammation within your rectum. Use rectal medications to remedy: either anti-inflammatory mesalamine like rowasa enema or canasa suppository, or steroid enema or suppository.
Posted 12/27/2016 1:55 PM (GMT -5)
IPoop - I've been on the canasa suppositories for 17 days now and am still having considerably bright colored blood mixed in with stool - formed ones especially

Do you think its time to consider another suppository (as I can't hold enemas) or does canasa just usually take a while to take effect?
Posted 12/27/2016 2:44 PM (GMT -5)
Hmm probably canasa is not strong enough, as 17 days is more than enough to show results. I've heard of people prescribed two canasa per day before.

You might want to consider the steroid suppository.
Posted 12/29/2016 12:09 AM (GMT -5)
Thank for your time, I Poop. I will be discussing the possibility of steroid suppositories with my doctor next week.

One final question, if I may, as you seem very knowledgeable on this particular subject - through the colon healing process, is bleeding usually one of the last/toughest issue to get rid of? If the bleeding subsides, is that a big step forward in the healing process or could that signify I'm nearing the end of a flare?
Posted 12/29/2016 8:54 AM (GMT -5)
For me, bleeding is always the first symptom to go away as i heal. For others who post here it is the exact opposite: bleeding is the very last symptom to go away for them. The end of a flare is remission which is an absence of all symptoms. So as you exit a flare, there should be formed/semi-formed bms, no urgency, ideally less than 3 bms a day, no blood, and no mucus. I had 1 bm a day without symptoms during my last remission.

FYI, Steroids come in suppository, enema, and foams. If your inflammation extends beyond the rectum then you might want to consider something that goes further than a suppository (some foams and all enemas do).
Posted 1/3/2017 1:27 AM (GMT -5)
Hey iPoop, I just wanted to give an update.

The blood has finally for the most part subsided (hallelujah), with the exception of a drop or two here or there. Now my biggest issues are excess mucus as well as a bit of urgency still. I'm hoping those are the next two symptoms to go and then life will be back on track.
Posted 1/3/2017 6:50 AM (GMT -5)
That's great, glad you're healing. Did you change your meds and if so how? Or did you keep thinks the same?
Posted 1/3/2017 10:00 AM (GMT -5)
I didn't change meds, but I did switch up when I administered them upon suggestion.

I was using canasa in the evening, at most maybe getting a three hour, but usually just one or two hours on average, usage of them on a good night before needing to use the restroom. I switched up and used it in the morning after I take my Prednisone and started getting about an average of five hour usage before needing to use the restroom.

I'm not sure if I can attribute the amount of blood to that, or simply to that other meds are kicking in. This is week Six I believe of being on 30 mg of PRED, and going on week three of imuran. I also added some things to my diet such as cooked spinach and ginger tea in the evenings.
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