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Ulcerative Colitis
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Posted 7/28/2016 5:21 AM (GMT 0)
Hi everyone, this is the second time I've actually posted on one of these forums and unfortunately, it is because I have had my worst flare since being diagnosed with ulcerative colitis back in 2014. I was originally prescribed asacol upon diagnosis, but due to budgetary reasons I have since switched to balsalazide for the last 18+ months, which has worked just fine for me up until the past two months. Over the past two months, I have been running to the bathroom 8-12 times a day, with usually four of those instances occurring at night as I am trying to sleep. With that being the case, I have only been able to get about two hour sleeping intervals in which I am waking up, using the restroom, then settling myself back down to sleep for another few hours before I know I'll be up again. Its usually a sharp constipation that I can barely hold, and I'm barely making it to the bathroom in time. My UC has never effected me this much before outside of the initial onset of symptoms before I saw my doctor. I recently saw the doc and he prescribed prednisone, which helped the first day or two but since have waned in their effectiveness. I see him again in a week, but I am really struggling as I have really knocked my diet down to the basic foods that I have historically (over the past two years) found to not give me any issue, but still no luck. I haven't gotten much sleep over the last few months, so I figured I'd give the forum a try since I'm up through the night anyway! I know we all react differently to this disease, but I'm looking forward to getting some insight from all of you to get this thing back under control and back to my normal life!
Posted 7/28/2016 10:29 AM (GMT 0)
Welcome to the forum, but sorry you are struggling with a flare.

I highly recommend rectal medications -- either mesalamine enemas or suppositories depending on the extent of your inflammation. Enemas will reach further than the suppositories. For some reason doctors don't always prescribe them unless they are asked to which is a real shame because they do work pretty well. It's good to treat inflammation from both ends.

The enemas are retention enemas meaning that as you get used to them you retain them longer so the medication has time to work directly where the inflammation is. 2 tips to help hold them longer -- warm the bottle to body temperature before using them either by keeping in close to your body for a while or running hot water over the bottle, and secondly gently squeeze the bottle to get rid of all of the air before inserting.

Hope you get some relief soon!
Posted 7/28/2016 12:12 PM (GMT 0)
Welcome to the forum. It truly sucks you or any of us need to struggle like this from uc flares. What's your current uc doses of asacol and prednisone?

A frequency of 8-10 bms a day sounds like pretty severe inflammation. Generally, a standard uc flare protocol would be for your gastroenterologist to have you do a stool test to check for pathogenic causes (like cdiff), and do a flex-sigmoidoscopy to investigate how far and how severe the inflammation is.

The first line of uc treatment is anti-inflammatory mesalamine (your asacol) and the maximum effective dose should be tried when you're flaring. That's a daily 4,800 milligrams oral and 4,000 milligrams rectal route (mesalamine, rowasa, pentasa enema).

The second line of treatments is immunomodulators (Imuran, 6mp, or azathioprine). They'd be tried next.

The third line of treatment is biologics (remicade, humira, entyvio, or simponi). Although some gastroenterologists jump straight to biologics.

I'd ask for dose increases of asacol (if less than what I mentioned above), and ask for mesalamine enema. Depending on your pred dose, that could be increased as well. I'd talk about stronger medications. Explore and discuss all of your options with your gastroenterologist. We've all been in similar flares, can relate to hardly sleeping with many nocturnal poops. It's miserable and you want to get improvement as quick as humanly possible. So, I'd recommend getting much more aggressive in treating the flare for a quick exit!
Posted 7/28/2016 12:55 PM (GMT 0)
I think rowasa or cortenemas would be a good thing to try at this point.
Posted 7/28/2016 2:15 PM (GMT 0)
Thank you all for the responses, you've given me some good info to speak with my doctor about next week. iPoop - I was originally on asacol upon first diagnosis, but I am currently on balsalazide - 3 750 mg doses 3x a day. They have been working darn near flawlessly til the most recent flare. As far as the prednisone, I am holding at just 10 mg a day til I see the doc again. I started at 40 mg week one, 30 mg week 2 and so on. When I met with my doc last month, he took a sample to test for c diff and results came back negative. From all of the posts on here, sounds like I should discuss moving on to the second line of medication or the supposatories. Would you guys suggest any vitamins/minerals to take that you've seen help during a flare?
Thanks all.
Posted 7/28/2016 2:41 PM (GMT 0)
Yes, the usual Colazal (balsalazide) dose is to take 3 of the 750 mg capsules, at 3 points during your day (a total dose of 6.75 g per day). So that dose does sounds right.

10mgs of prednisone clearly isn't enough with 8-10 bms a day, so I'd expect your doctor to bump that dose upwards to 20mgs or more. I'd ask for Rowasa/Mesalamine enema 60ml/4g and give them a few weeks to work and heal you, and see if they'll work. Increasing the prednisone should reduce your bm frequency, which will in turn make it much easier to retain the enema for longer. It's generally advisable to max out the anti-inflammatory medications ( correction, balsalazide@ 6.75 g per day and 4g of rowasa enema) before going to stronger medications.

Although, another consideration is that you said you are two months into your current flare, and unable to taper down the prednisone below 10mgs, so you're currently prednisone-dependent. Certainly begin the discussion on the stronger medications like immunomodulators and biologics as they might be necessary to exit from your flare. Prednisone-dependence is often the big reason we end up going to stronger classes of medications. If you want to exit the flare quickly then another medication like these might become necessary.
Posted 7/28/2016 3:34 PM (GMT 0)
I would expect with the flare you're having for prednisone to take about 2 weeks to kick in meaning your taper was too quick. When I'm flaring equal to yours, my doc keeps me on 40mg for 4 weeks then begins the taper. I think a good rule of thumb is to not taper until you're back to "normal." I also agree with rectal meds as others have mentioned. It's possible you will need to move to second line meds but it's also possible adding rectal meds will be enough.
Posted 7/28/2016 3:37 PM (GMT 0)
I would say pred recalcitrant rather than dependent. It is possible 40mg was not high enough for inital taper, and that the automatic drop every week was unwise. Some docs have you stay at the higher dose until some control is achieved, and then taper. IF at that point you can't taper, you could be said to be dependent on pred for control (it is not an addiction kind of dependence).

If there is blood or urgency, rectal meds generally help. Sounds like you have the urgency. I did not see you mention blood. Sometimes enemas require getting up at night to void, or give some D inthe morning. Usually for just a short time.

Some supplements like slippery elm can be soothing and reduce urgency, but can also cause D. Tumeric/curcumin can reduce inflammation.

Some nutrients like oat bran promote butyerate fermentation which is associated with mucosal healing - but if you have alternating constipation and urgency, I am not sure fiber is right for you at the moment.

Probiotics can help balance gut microbes and moderate symptoms, but can initially cause D.

Some people have had results with LDN, or FMT. IF you have picked up a pathogen secondary to UC, whether it is undetected c-diff or another pathogen that does not show up in tests, FMT could help.

This is a lot to think about, and what is right for you is hard to say. I think getting input here and actively talking with you doc are good steps. I wish you good luck.
Posted 7/28/2016 5:16 PM (GMT 0)
I think I would request another C Difficil test..sometimes its necessary and worth doing. I tested clear but 2 weeks later I was diagnosed with it. Also prednisone started off ok for me but then didnt work.
Posted 7/28/2016 5:54 PM (GMT 0)
I would also like to re-iterate the rectal meds. Either Rowasa or Cortifoam...something like that. Since UC starts at the bottom and spreads upward--you can use them at the first sign of a flare and hopefully stop it in its tracks. U can also use rowasa/canasa for maintenance if needed.
B
Posted 7/28/2016 6:13 PM (GMT 0)
I agree with what others said before... I think you tapered off of prednisone way too quick before your symptoms were in full control and rectal meds will definitely help you out with urgency issues.
Posted 7/28/2016 9:50 PM (GMT 0)
Again, thank you all for your input. It seems unanimous that the prescription of tapering off 10 mg each week was not the way to go, I will definitely discuss the possibility of of keeping the higher doses until it gets under control. Ive also looked into a few of the rectal meds mentioned throughout, seems like those would greatly help deter my urgency. Thankfully I'm not really dealing with any blood in the stool, and I've done my best to stay hydrated with so many constNt movements. Db - I will also look into some of the nutrients you mentioned. I'm ztill working on the right balance for me as it seems everyone is different. I'm also curious if anyone has any tips or tricks to keep control through stressful environments. I have a few job interviews coming up soon, in which they informed me it will be roughly an hour and a half long in one case, and a day of separate pieces in another. I'm extremely nervous to go to these as going eight times throughout will not look good. Again, thank you all for your help thus far!
Posted 7/28/2016 10:54 PM (GMT 0)
And that night time having to run to the bathroom every couple hours, fragmenting your sleep is the worst. I can relate to how frustrating that is.
Posted 7/29/2016 12:39 PM (GMT 0)
See if you can schedule your interviews for your "good" time of the day, if you have one. Seems like a lot of us have problems in the morning.
Posted 8/3/2016 3:29 AM (GMT 0)
Hey everyone, just wanted to give an update after most recent doctors visit. We went ahead and scheduled a colonoscopy for next week to check things out, in the mean time he's got me on 20mg of prednisone and proctofoam in addition to the balsalazide til after the results. Has anyone ever used proctofoam? Seen any results or side effects?
Posted 8/3/2016 11:28 AM (GMT 0)
Sounds like you have a good plan moving forward. Let us know how the c-scope goes!
Posted 8/3/2016 12:13 PM (GMT 0)

Broncofan18 said...
I'm also curious if anyone has any tips or tricks to keep control through stressful environments. I have a few job interviews coming up soon, in which they informed me it will be roughly an hour and a half long in one case, and a day of separate pieces in another. I'm extremely nervous to go to these as going eight times throughout will not look good. Again, thank you all for your help thus far!


less food, more immodium
Posted 8/3/2016 2:36 PM (GMT 0)
I have used Proctofoam--it is a steroid based rectal mostly used for hemmies but can be used for Proctitis. I would have preferred Cortifoam (stronger) or Rowasa (mesalamine based enema). Keep this in mind if the Proctofoam is not enough for you. BTW, there is a learning curve when pumping the foam into the applicator. Don't lose heart, you will get the hang of it...but it's a bit awkward at first.
B
Posted 8/4/2016 7:41 AM (GMT 0)
Yes yes, the entirety of the process of using proctofoam is a learning curve indeed! Thanks for the thoughts hateuc. I'm hoping this will at least bide me some time until the c scope next week. Did you notice any side effects? Also, sophomore, immodium? I have not looked I to that before. Can you explain a little more for me? It would be greatly appreciated?
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