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Taking my diagnosis more seriously

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Ulcerative Colitis
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Posted 6/21/2018 3:21 AM (GMT 0)
I was diagnosed with ulcerative proctitis almost a decade ago and my doctors treated it like a mild case of IBS. I managed it through diet, and may have done more harm than good in retrospect. It wasn't until 2016 that I had another colonoscopy and had it explained that my condition is a mild form of ulcerative colitis.

I don't have much bleeding, but I am constantly inflamed and swing between loose stools and constipation. I have a number of health issues that I'm certain are attributed to malnourishment via weak digestion. I had been taking LDN, but after a string of bad diet decisions I caved and started taking Balsalazide. It had noticeable effects the first few days, but seems like it is doing nothing now. I had diarrhea this morning and then constipation this afternoon. I'm now looking into taking Pentoxifylline, maybe in conjunction with very low dose naltrexone as it effects my sleep at the higher doses. Anyone have experience with this drug?

I also want to ask for diet recommendations. My needs are slightly unusual. I tend towards constipation, and need to keep my stools soft so that they don't tear my inflamed rectum (TMI?). Low residue-type diets make me constipated and sluggish. Eating more of a vegan-type diet / fiber indiscriminately makes me more inflamed, and probably worse in the grand scheme of things. I'm not getting enough calories/nutrients and its taking a huge toll on my body. Please help
Posted 6/21/2018 3:38 AM (GMT 0)
Did your doctor put you on any mesalamine meds? I would suggest both oral and rectal (Rowasa enemas or Canasa suppositories). I had never heard of Pentoxifylline, but looked it up. Says it is an anti-inflammatory. Did your doctor suggest that? Usually, we are told to keep away from things like NSAIDS and ibuprofen, but I'm not sure if Pentoxifylline is in the same class as those.

As far as diet goes, have you tried easier-to-digest veggies and fruits, like applesauce, mashed potatoes, cooked canned green beans and soft cooked carrots, pureed soups, nut butters (lots of calories), vegan yogurt and milks? You'd still be getting fiber, but since it is cooked down and soft, maybe it would sit well with you? I really think you should be on rectal meds though. Diet isn't going to cure your inflammation. Do you take a multivitamin?
Posted 6/21/2018 3:50 AM (GMT 0)
Nevermind, I see it is used for UC. Never heard anyone mention it though.
Posted 6/21/2018 1:39 PM (GMT 0)
If you want to begin taking your UC seriously, then you MUST take both oral and rectal-route mesalamines. oral Balsalazide is good. You should also be on either a Canasa suppository or a Rowasa/Pentasa/Salofalk retention enema. If you predominately have constipation and rectal involvement (an Ulcerative Colitis with Proctitis involvement), then going straight to the source will produce the best results for you.

You're in the 10-year club, make sure to continue with colonoscopies for colorectal cancer (CRC) screenings. Having long term inflammation makes you a lot more prone to getting a CRC then those who've had a well-managed case in a remission over that same time period.

Going forward, your CRC odds increase by the decade, so getting your UC under control and into a sustained remission should be your priority.
Posted 6/21/2018 2:29 PM (GMT 0)
Have you ever tried psyllium husk powder? It's a mix of soluble and insoluble fiber that keeps things formed and moving.
Posted 6/21/2018 4:51 PM (GMT 0)

Sara14 said...
Nevermind, I see it is used for UC. Never heard anyone mention it though.


They stopped studying it because the patent expired (no $$$). It's a very cheap drug, and very safe. Like LDN, it's also useful for other conditions (diabetes, angina, HPA axis dysfunction to name a few).

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3921497/
https://www.gastrojournal.org/article/0016-5085(95)27688-2/abstract


Sara14 said...
Did your doctor put you on any mesalamine meds? I would suggest both oral and rectal (Rowasa enemas or Canasa suppositories).


My insurance doesn't cover the suppositories or enemas unfortunately. I have some qualms about taking 5-asa. It makes hair fall out, and has been shown to be no better than placebo for some people. I would like to get off it if I can get decent results from another drug.

Sara14 said...
As far as diet goes, have you tried easier-to-digest veggies and fruits, like applesauce, mashed potatoes, cooked canned green beans and soft cooked carrots, pureed soups, nut butters (lots of calories), vegan yogurt and milks?


Yes, I eat lots of fruit, carrots, sweet potatoes. The only nut-like thing I eat is coconut. I think nuts and seeds are generally bad. Full of polyunsaturated fatty acids, trypsin inhibitors, phytic acid, lectins, etc.

iPoop said...
You're in the 10-year club, make sure to continue with colonoscopies for colorectal cancer (CRC) screenings. Having long term inflammation makes you a lot more prone to getting a CRC then those who've had a well-managed case in a remission over that same time period.


LDN is anti-cancer. Yes, I should have been aware of the long term consequences of forgoing medication. Like I said, my first doctor made it seem as if I just had a particularly angry case of IBS.
Posted 6/21/2018 6:07 PM (GMT 0)
Yes, it looks like a super safe and cheap drug -- so of course no one is telling us about it! Ugh, how frustrating.

I hope you can find something that works for you soon. Dr. Joel Fuhrman (author of Eat to Live) thinks nuts and seeds are one of the healthiest foods to eat, in small quantities. But with a damaged colon, the nut butters may be a better option. Was just trying to think of high-caloric options for you.

I wouldn't beat yourself up too much. How were you supposed to know if your doctor didn't make it clear to you?
Posted 6/21/2018 6:55 PM (GMT 0)
Sara14, I'm sure you've heard of Colazal before, well it's generic is Balsalazide Disodium. One of those old-school mesalamine-precursor drugs (meaning made of a more complex molecule then mesalamine). gut bacteria cleave that more complex molecule into mesalamine and a byproduct. It's just a different and older mechanism of delayed-release delivery then the plastic, MMX-coating of asacol/lialda/apriso/delzicol. Studies have not shown the newer MMX coatings to be any more effective then the old methods. Sulfasalazine is another older medication of a similar mechanism. They're crazy cheap compared to mesalamines, and just as effective according to research. Dipentum/Olsalazine is the last in that older class and I seldom here it referenced here. Colazal/Balsalazide Disodium is the most popular and safest. Sulfasalazine is known for headaches in some...
Posted 6/21/2018 7:14 PM (GMT 0)
We weren't talking about Colazal. We're talking about Pentoxifylline.
Posted 6/21/2018 7:37 PM (GMT 0)
oh ooops, carry on as you were lol
Posted 6/21/2018 7:47 PM (GMT 0)
Lol!!
Posted 6/21/2018 9:58 PM (GMT 0)
Do you have a G.I. doctor? Have they said anything about medications they recommend?

Do the nut butters affect you negatively? I know you are dubious as to the health benefits, based on what you wrote, but nuts are very beneficial and like Sara14 said, would be more gentle on your colon. I would do a bit more research on the benefits of nuts before ruling out such a high calorie food source, unless they are definitely causing issues for you.

https://www.health.harvard.edu/blog/eating-nuts-linked-to-healthier-longer-life-201311206893

Fruit causes issues for me, so I eat it sparingly, like one would (or should) dessert. Coconut oil by the spoonful. : ) I do that when I need more calories quickly, usually accompanied by some kind of protein (I get nauseous if I eat oil on an empty stomach). Avocados are great; mashed potatoes (unless you want to try SCD), mashed squash, homemade soups, fish, chicken, etc. It seems like usually people end up ruling out gluten and dairy when the diet route is pursued.
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