Burning D

[DebE13]

Anyone have any good suggestions for soothing the discomfort caused by D? My son, who has UC, is tapering off prednisone and now is starting to take steps backwards. yesterday was 8 trips to the bathroom with D and blood in the bowl. I'm not sure if he downplayed it to the nurse because they did nothing to adjust his meds. I really want him off prednisone but flaring at the end of the semester while trying to get ready for college finals is just too much. He texted me late last nigh asking if he could take more to stop the D. Now he has to call back again this morning and explain the situation. He went on a hunt for Tucks medicated pads last night in an effort to find some relief. In my experience, they have an immediate "ahhh" feeling then that's about it. I read some articles advising not to use that type of product. I've already told him the dab and not wipe, keep things clean, soaks, and maybe use a little cornstarch baby powder in the general area (not on) to keep things dry. I don't think there's much more until he can control the D. Maybe I'm not aware of something else. I can't imagine both working and going to college full time with a heavy load and trying to manage UC on top of it. He already takes Lialda and Azathioprine in addition to the prednisone not to mention the three two other drugs for his PSC. It's really frustrating to not be able to help.

[jlbattin]

Deb,

I use the cottonelle wipes when I'm away from home all the time (we have a bidet at home), but coconut oil will really help with the burning.

[tex]

Deb,

In addition to coconut oil, zinc-based ointments are a good solution. Check out this old thread:

sore rear end!

Tex

[DebE13]

Thanks for the suggestion. I'm a big fan of coconut oil. I read one article discouraging the use of ointments because they can interfere with with the anal seal and result in leakage. I suppose it's worth a try but I would feel bad making a suggestion that causes more issues. I never had any luck with Prep H. The only positive thought I have at the moment is if I didn't have MC I would not be able to offer him any useful advise. He did pick up some almond milk though. So that's a step in the right direction.

[DebE13]

Thanks Tex- that was extremely helpful. I may just message the nurse and see if I can get him the triamcinolone acetonide. It sounds pretty bad. He never complains- ever and he has way more going on than just the UC and he mentioned it numerous times last night. I remember Desitin from diaper days. I have bag balm in my cupboard. It's hard when your kids are off at school and not at home where the MC/UC arsenal is at. I've run across the butt paste in the store and it made me chuckle. I wasn't sure if some of those products would be safe for anal use. Hopefully things will settle down soon once the semester is over.

[Erica P-G]

I just recently used good old coconut oil in my baking cupboard for my bum, because I have just gone thru a flare, and it works wonderfully, no greasy feeling, doesn't stain the roos... and my bum didn't hurt, and I sit on my bum all day at work...

[DebE13]

I love the fact coconut oil is natural. I use it for everything. The nurse did give the triamcinolone acetonide so it will be good to have it on hand. He said he would try the coconut oil first. They did increase his prednisone back to 20mg/day so that stinks but he said it helped. I was encouraged that he texted me a picture of his dinner and jokingly commented he felt like me. It was a burger on a plate with a side of mustard, no bun. Hopefully this will start a trend of safer eating habits. Although, if the prednisone is working it may give him a false sense of what he can tolerate. Baby steps....

[Gabes-Apg]

Deb
as we have discussed before, all you can do is provide good sources of information and support and what he does with that information is up to him.
like all of us here, he has to find his way to live with the health issues.

coconut oil is soothing and has skin healing goodness and no risks. (and cheap!)

[Texfiend]

I was diagnosed with LC in 2007 after a terrible parasitic infection (entamoeba hystolytica). I had struggled with parasites off and on for 10 years. Had lots of antibiotics. Now it appears parasites gone, now dealing with inflammation. I’ve been on a combination of Lialda, budesonide and Imodium. I have also developed histamine issues within the past few years. So I take Allegra twice a day.
I follow a paleo diet and avoid triggers. I can’t seem to get off the budesonide entirely. Every time I do a very slow taper and then quit, the diarrhea comes back with a vengeance. And this is taking Lialda and lots of Imodium as well. Right now I’m taking 3 mg of budesonide and a couple of Imodium for just in case. I quit the Lialda. The Gastro doc wants me off the budesonide but it’s the only thing that stops the diarrhea.
I am seeing a holistic doctor and he wants me to restore my gut with the usual suspects ... l glutamine, vitamin d, omega 3s, fiber, bone broth (which isn’t a good idea since I have histamine issues) and probiotics. I took one Mega Spore probiotic and had diarrhea! I’ve tried others in the past with low histamine and one with a human strain, and I reacted the same way. I’m afraid to continue the probiotic.
All of my labs for inflammatory markers came back fine, which is interesting. I am heterozygous c677t. I take methyl b’s for that.
Anyone else have a an absolute fail for Lialda and probiotics? Will I ever be able to get off the budesonide?

[tex]

Hi,

Welcome to the group. Thinking back over the years, precious few of us have ever had any luck with probiotics. We recommended avoiding them many years before the American Gastroenterological Association Institute decided (in 2016) to recommend against using them to treat MC. And relatively few of us have been helped by Lialda. The problem with Lialda is that it's simply mesalamine, and mesalamine is derived from NSAIDs, which of course are known to be a common cause of MC. For some IBD patients, mesalamine triggers the release of leukotrienes (which are proinflammatory). Fiber is also counterproductive when treating MC, as it provides a constant source of irritation in the colon.

In a nutshell, the secret to treating MC successfully is less (not more) — a simple, safe diet consisting of very few foods (prepared from scratch), no processed foods, no supplements (except for vitamin D and magnesium if you are deficient). Almost anything else can perpetuate the diarrhea. Whether or not you are ever able to wean off budesonide may depend on how closely you are able to adhere to this simple plan.

For example, if you have to take two Allegras daily just to control histamine issues, your diet almost surely includes way too many high histmine foods. I doubt that anyone could successfully wean off budesonide in that situation.

Again, welcome aboard, and please feel free to ask anything.

Tex

[Texfiend]

Tex, thank you for the advice. I’m starting to put all of this together. I figured out the reason I was having redness and itching through my own research because the gastro and the allergist had no clue. Never thought that if histamine is still high in my body, better not even try to taper off entocort. Need to get the histamine down. Been reading tons on this sight and thanks to Gabes, have decided to give magnesium a try. I generally shy away from it for obvious reasons. But then it’s like, which comes first, the histamine or gut healing ?
I’ve been practicing intermittent fasting to help aid my gut’s Healing process and to help lower histamine and raise DAO.
Thanks again. I’ll be sitting here, reading and reading. Very helpful.

[tex]

Topically-applied magnesium can definitely help. If enough of it is used, it may eliminate the need for oral magnesium.

Some authorities believe that long-term use of antihistamines depletes DAO, so that they eventually may become self-defeating.

Here's why I feel that histamine levels are very important when weaning off budesonide: Budesonide is effective primarily because it suppresses mast cell numbers and activity. That's how it suppresses inflammation. As we wean off budesonide, mast cell numbers rebound. If we wean off too quickly, the population can rebuild quickly, and it will overshoot. High populations promote higher activity levels (degranulation), and mast cell activity promotes additional mast cell activity. When mast cells degranulate, they release numerous proinflammatory agents, including histamine. That's why taking an antihistamine when ending a budesonide treatment can be very helpful. But if ones histamine level is already relatively high when beginning a budesonide taper, it's going to be even higher when the budesonide treatment is ended. Therefore, the increased mast cell activity is going to promote inflammation, and it's unlikely that it would be possible to suppress it sufficiently (by taking antihistamines) to prevent a relapse. At least that's how I see the problem.

Tex

[Texfiend]

Tex, thank you for explaining this. I had to read it a couple of times to fully comprehend it. I am going to tell my holistic doc this when I see him in a month. He’s open to his patients bringing in articles about things he’s not ever heard of before. I’m already supposed to bring him an article about how bone broth can cause histamine issues.
I think following your stage one diet is pretty much low in histamine. I will just need to figure out how I’m going to get freshly cooked animal protein for most meals that hasnt been sitting for awhile. I had a nutritionist tell me years ago I had issues with mold (from my IGG food intolerances) andrhat I shouldn’t eat leftovers.
I think I’ll be giving her a call as well. It’s been awhile.
Thank you for your wisdom. I went back and reread several pages of your book.

[Erica P-G]

HI Texfiend,

How I get around histamine issues with bone broth is I use Cornish Hen (I cook off the bird, remove the meat set aside in fridge) then I crockpot the small bird bones in water and salt for 5-6 hours and then I immediately transfer it to a pot and add some carrots and celery and even some GF Tikiyada noodles and simmer that for 35 minutes and transfer it over to small portion containers and freeze them. Then I take them out as needed....no extra histamine at all :-)

This has been my staple healing food for 3 years now.....best thing I have ever eaten on this MC diet!

[Texfiend]

Erica, is the reason you say it’s low histamine is because it’s Cornish hen and you freeze it?
Thanks.