My back and forth with the doc 

The so-called “natural” remedies will most likely fail you, and natural doesn’t mean safer. In any case, there are more focused ways to treat cuffitis, including local ASA medications (like Canasa suppositories) and local steroids (e.g. Cortifoam). I’d probably start with those rather than Stelara. Both of your episodes are possibly explainable by specific causes, so if you can avoid causes (like Advil) maybe you can have another episode-free eight years. In the meantime you really do have to get this episode under control, one way or the other. 

The risks of Stelara in general are less significant, IMO, than just avoiding a long-term medication when you might only need a shorter-term treatment. Just because your cuff is sensitive doesn’t really say much about its baseline level of inflammation.

Good luck!

This business with the abscess and severe cuffitis is more serious than you report, according to your doctor’s assessment. Rather than thinking that the abscess surgery led to your bleeding episode, consider that your cuffitis led to the abscess. Serious business, and this stuff can lead to fistulas and pouch failure.

Generally, doctors do not go with a biologic as a first treatment for maintenance, so have you tried the topical steroids and or mesalamine (Canasa) in the past? I think we tend to simply adapt to chronic issues. I certainly understand, as I was the same, since cuffitis was better than my colitis before colectomy.

You might get some effect with natural treatments like tumeric or CBD, but probably not enough to put you in remission. You can talk to your doc about this and he should be able to explain the reasoning behind his treatment recommendations. Of course, it is up to you to decide how to proceed, but remember there is also a risk factor for choosing not to treat.

As for myself, I have been on biologics for over a decade without issues.

Jan

Jan Dollar posted:

This business with the abscess and severe cuffitis is more serious than you report, according to your doctor’s assessment. Rather than thinking that the abscess surgery led to your bleeding episode, consider that your cuffitis led to the abscess. Serious business, and this stuff can lead to fistulas and pouch failure.

Generally, doctors do not go with a biologic as a first treatment for maintenance, so have you tried the topical steroids and or mesalamine (Canasa) in the past? I think we tend to simply adapt to chronic issues. I certainly understand, as I was the same, since cuffitis was better than my colitis before colectomy.

You might get some effect with natural treatments like tumeric or CBD, but probably not enough to put you in remission. You can talk to your doc about this and he should be able to explain the reasoning behind his treatment recommendations. Of course, it is up to you to decide how to proceed, but remember there is also a risk factor for choosing not to treat.

As for myself, I have been on biologics for over a decade without issues.

Jan

 

Thanks so much Jan. I’m just so worried about pumping medicine into my body. I get married in 3 months and lost my dad to colorectal cancer two years ago. I’m an anxious mess when it comes to my health. 

 I am most likely going to at least try the stelara, if anything, to really knock this bout out. I have been reading up on great results with makuna honey that I plan on starting to take some with warm water every morning. Just want to start taking care of myself as the past 8 years I’ve just had non worries with my pouch. 

Im also currently doing Canasa suppository daily, which I really don’t mind and I can only imagine its helping. I wouldn’t mind that for a long term treatment. 

I cannot comment on manuka honey, but cannot imagine much bang for your buck. But, no harm in it. I do understand cancer anxiety. My dad died of pancreatic cancer. Can’t blame it on drugs. My step-mom was so careful with diet, exercise, and medications it made her nuts and difficult to be around. She still wound up with lung cancer and she never smoked.

So, life is risk and we all die of something. Sort of a fatalistic view, but I like to choose my risks, especially if they improve quality of life. I have been dealing with UC and complications for nearly 50 years and decided to get off the worry train a long time ago (like before I was out of high school). Worry just generates a bunch of stress hormones and makes you miserable.

Good luck on your choices and best wishes on your upcoming nuptials!

Jan

I have been on Manuka honey for almost a year either 10 UMF or 15 UMF, by Comvita, and it has improved my reliance on Cipro for pouchitis greatly. I take 2 spoonful's in the morning and wait for 30 minutes before I eat, and I take another 2 before bedtime. I have not had to take antibiotics in a long time. 

Now with that being said there are tons of Manuka honey suppliers out there as well, but you have to pay attention to the UMF (unique Manuka factor), I myself only buy Comvita, and I have found it the cheapest on Amazon. If it keeps me off antibiotics, then it's money well spent. I believe it works, and does alot of good for me personally.

Good luck!

Diesel