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Ulcerative Colitis
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Posted 12/25/2013 2:36 AM (GMT 0)
Happy Holidays,

I wish everyone battling this disease all the best this holiday season. Unfortunately, my condition has been intolerable as of late, and I am struggling with my options, since I have been in a flare that started at the end of this September.

I was diagnosed with proctosigmoiditis in 2008. I am currently on Asacol at 1600mg, after doubling the dose for 2 weeks and seeing no improvements. I have recently adopted the AIP diet (Paleo Autoimmune Protocol), and it has helped. However, mortifying a diet is never a simple task, considering the fact that everyone is unique.

The medical options that I have been attempting to decide are the following: should I change asacol for lialda? (most of my flares have been triggered by dairy, and there is dairy in asacol), and should I purchase 5-ASA suppositories as soon as possible?

In terms of remission, I have never experienced a day without urgency, which I had to fight on a constant basis throughout the day. Should I take something when my next remission hopefully rolls around? I have been wondering whether I should use Imodium everyday in order to go a couple of hours without feeling the dreadful cramps.
Posted 12/25/2013 2:44 AM (GMT 0)
I personally like to lean towards natural remedies, the colon formula I take (listed in my signature) seems to have really helped me as of late, I would encourage the psyllium seed/husk, slippery elm and mrsh. mellow rt. Theres alot of good information out about these being used for our condition, best of luck and God bless!
Posted 12/25/2013 3:15 AM (GMT 0)
I think you should get the mesalamine enemas and/or suppositories ASAP. If you don't see improvement, you may want to try a steroid enema. I would love to say your diet is the key but for me, I've tried a ton of supplements and dietary measures and I had absolutely no luck curbing a flare up. I am not saying this is the case for everyone but I've been on this board for quite a while and I've rarely seen people who are treating with non-medical treatments entirely. Most of us are on 5ASAs at the minimum but many have graduated beyond to steroids or immune supressants. i am not sure if Asacol HD and Lialda are very different. Asacol HD is 800mg and Lialda is 1200mg. I switched from Asacol 400mg to Lialda without any problems. It's been much more convenient for me. If you're looking for something different, you could try Colazal or Apriso. There are descriptions of the differences in the resources post on the top of the UC forum main page. You should really increase to the max dose for a while (4800mg) and try the rectal mesalamine and see if you get better. Find a GI you trust and ask if this is appropriate treatment.
Posted 12/25/2013 5:41 AM (GMT 0)
Thank you for your replies, I appreciate it. It feels as though the struggle with colitis will never end at times, but those small windows of hope are refreshing.

Ctech21, I agree that natural remedies are worth trying, given that they don't make you worse. I will certainly look into your advice and attempt pursuing some sort of a natural supplement. God bless.

Notsosicklygirl, I applaud your honesty and I admire your courage to remain objective even though natural remedies and dietary measures have been ineffective for you. I reckon the average person would be discouraged to the point of developing some sort of unchangeable bias towards previously traveled avenues. That aspect of your reply was moving to say the least. As for the medicines that I am currently using, I shall look into the comparisons between asacol and lialda as well as other oral mesalamines. I will also certainly start using the rectal medicines as soon as possible, it seems as though that sometimes you need someone to tell you to go for it before you feel the urge. I have been reluctant only because of the possibility that the drug may not work for me or may make me worse, and I am a big believer in the logic of rectal medicines. I know, it's an irrational fear, but there is nothing rational about this disease. Thank you, and God bless.
Posted 12/25/2013 8:28 PM (GMT 0)
OK....did your doctor actually put you on 800mg asacol daily? and you upped it to 1600?
At the very least up it to 2400mg, split the dosage to twice a day.

You need to be on the retention enemas, NOT the suppositories.

It's not the dairy...easy to blame food at this stage of the game. You're not on enough medication.

Ask the doc for an antispasmodic...I use dicyclomine.

Please don't use Imodium unless for an event you need to attend...daily isn't going to help anything, especially since you're flaring and waaaaaaaaaay undertreated med-wise.

q
Posted 12/26/2013 5:13 PM (GMT 0)
Thank you for your reply Quincy, I appreciate your input. Pardon my lack of clarity, but I was actually prescribed 1600mg and I doubled it to 3200mg by myself for a fortnight without any luck.

As for the enemas and suppositories, most of my inflammation is in the rectum, and I am considering beginning with the latter and graduating to the former if there are no improvements. I reckon suppositories are more appropriate because >90% liquid 5-ASA enemas bypass the rectum (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1773399/), and I have tried enemas before to no avail.

Your point about an antispasmodic makes a lot of sense, I will ask for one in my next appointment. However, I have one tiny concern, why should I avoid Imodium on a daily basis? I do not use it during a flare because the company warns against its consumption in case of bloody diarrhoea, but I was considering it when in remission.

Post Edited (Izzy13) : 12/26/2013 10:38:00 AM (GMT-7)

Posted 12/27/2013 3:41 AM (GMT 0)
Do whatever you think is best regarding the rectal meds. I suggest the enemas, and you can insert the med to cover all of the rectum. it's not going to be "wasted" in the sigmoid since you already have disease diagnosed in that area. Oral meds aren't going to actively treat that area enough, especially if you're only on 1600mg daily. At the least you should be on 2400mg to help keep the rest of your colon treated/covered.

Regarding the Imodium...firstly, you're undertreated. Consider fibre supplements and of course the 2g or 4g enemas. Pentasa has 100mg liquid, Asacol/Salofalk has 60mg liquid...go for the lesser amount.

You can also consider the supps to use during the day and the enemas at night. If you're in the UK, there's Asacol foam....I'd go for the higher amount of dosage rather than the lowest to start.

q
Posted 12/27/2013 7:07 AM (GMT 0)
Great post, thank you for your input Quincy. I will increase my oral dose and start with suppositories immediately, eventually working my way up to enemas. As for supplements, I have recently introduced vitamin D alongside probiotics, so I will research into fibre supplements in order to take them consistently for a long period of time.

I thoroughly value your warmth and welcoming spirit, and I am glad that you took the time to explain everything in detail. Your reminder that I am relatively untreated has brought hope to me.
Posted 12/27/2013 5:46 PM (GMT 0)
Doesn't make sense to start with the suppositories and work your way up to the enemas. Deal with the inflammation now and use the supps for supplementing the enemas or tapering and maybe for maintenance.

Thanks for your overly generous compliment.

I still suggest the enemas....
q
Posted 12/27/2013 6:22 PM (GMT 0)
What Q said...yep! Easy on the Immodium, special occasions ok. Toxic mega colon is the risk there.
Posted 12/28/2013 5:27 PM (GMT 0)
Toxic mega colon sounds terrifying, and yes, I will start the enemas promptly. Thank you Katmom and Quincy once again.
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