UC Management Strategy Ideas

Howdy! I think I have maybe one post here but I have been reading these forums for years as I've gone in and out of flares. Thank you very much to everyone for all of the insight. A while back (unfortunately not right now) I found the Spinach Diet very helpful.

I started flaring again and I believe that the cause was actually food poisoning. Following the trail of receipts it looks like it was because of a sub I had gotten at 9:45pm when the store closes at 10pm and the tomatoes were looking a little funky. It kind of stinks because I was only getting it so late because I was helping neighbors move and they promised to feed me and they didn't, but oh well. The following days I had the D and more and more frequently, which is weird because usually, I thought, flares start with solid stool with some blood and then move towards the blood and D. As the frequency increased blood and lots more pain came with it. I was at a point where I'd lose count of the number of times of movements. I did order some Boswellia and it helped A LOT but I was still in numbers around 11-15. So to cut it down tried eating nothing at all and drinking just water but still taking my meds and vitamins. That cut it to 3. Work resumes tomorrow and there is only one bathroom for males and females so having 11 urgent movements isn't going to work out. I have of course contacted my Dr. but they won't see me until July 29th which I think is just insane. So to try to keep the trips down at work and in general here is my strategy:

Breakfast: Coffee, butter grassfed/no salt butter/ MCT Oil - This is straight from the bulletproof diet. All the fat is so that my body uses it for energy instead of attacking my muscle or organs. Also I don't buy from the bulletproof site, there are much cheaper alternatives that are really good.

Lunch: A Protein Drink (Whey Protein?)(Something else?)

Dinner: 4 Eggs (MAYBE curry for topping?)

I am also taking the multivitamin Forvia so at least hopefully that helps with vitamin and mineral deficiencies I might have with such a small diet.
http://www.inovera.com/forvia

I'm also thinking about preparing a kit for work. Some paper towels so that I can wipe down the seat (with soap) and maybe a small container of bleach to put a few drops into the toilet so that it doesn't smell. I'm going to test if just squirting some soap into the toilet and flushing helps at all.

I have been trying to order a combo of Turmeric and Bromelain but first time they sent me the wrong one and the second one smelled a bit too funky and I didn't want it to make me even more sick.

Is there anything that I should add to my diet? I was thinking maybe carrot juice. I want to try to stick to as much of a liquid diet as possible. Thank you for your time and I apologize for any poor writing. Since only have water and pills the last few days I've had some headaches.

As a note my current management of UC which had been working for a long time was 1.2G of Liada. Thank you so much for your time and I plan to look at all the different resource pages too.
-Mike

PS Here are some things that seem to help:
- Usually the Spinach. In the past if I had spinach it'd give me a free day of no more urgent trips to the can.
- I did have what I think was a mild flare a few months ago caused by I believe the same thing but pain would go away if I addressed it with "stop" or "go away". That does work sometimes now but not always. I know it sounds weird but I know UC does have a mental part too.
- I found that getting extra sleep (around 9+) hours and possibly going to bed early as well, helped a lot for my energy levels the next day, especially when water/pill fasting.

Post Edited (dudester) : 7/5/2016 12:42:46 PM (GMT-6)

Have you had a stool sample tested for pathogens? Doctor should be able to order that without seeing you.

How much Lialda are you taking? Maximum dose is 4 tablets/day. If you aren't on the max you should ask your dr if you can increase. Are you using any rectal meds? If not you could ask for mesalamine enemas. Doing both oral and rectal works very well together.

Even if you can't see your dr until the 29th he really shouldn't have any problem doing these things for you rather than make you just suffer. You can get them right away and then on the 29th you can evaluate how you are doing with him.

CCinPA I think you posted right when I was. I did ask about the Rowasa Enemas, like I used to have back in NY (I live in FL) now and no response. And I was actually supposed to do the stool sample a while ago but I never did due to not really wanting to deal with it. I do have the kit still though so hopefully I can form some stool and get it tested. I'm going to send in another message about asking to use Rowasa and I am at the max of 1.2 G of Lialda.

Yes four, with the tabs being 1.2g so yes 4800mg daily. It used to work so well for so long. I really believe that I have a combo of food poisoning and UC since it shot straight into D and then more and more D and blood too. I guess one good thing is that there always seems to be some quantity of stuff every time I have to go, super rarely if at all any of the mucus/nothing really there super urgent ones. There is much much less blood since I added Boswellia to the mix and rare now with what I thought was a water diet. I'm going to do the butter/coffee/MCT oil and eggs and see how it goes and Friday try adding a little rice for dinner with curry. Also one thing that was very different about this time is I don't remember my stomach feeling nauseous whereas until my little fast, it was almost all the time.

Thanks for the heads up about the stool test, I'm going to get it done!

I messaged my primary Dr. too just to see if he can do something. UC sucks, I would never wish it on anyone!! Thanks for your insight and for correcting my misinformation. Take care!
-Mike

Post Edited (dudester) : 7/5/2016 3:40:51 PM (GMT-6)

It looks like my GI isn't even getting back until the 9th so I've sent messages to my Primary and I'm just going to call tomorrow too. I think the full blood panel is a great suggestion, thank you! Might as well since I'll be at the lab anyway!

I did look at ensure and it has a lot of sugar in it which I'd like to avoid. I did find this though and I'm excited to try it especially to see if it works with the Spinach/Sunflower Diet:
https://www.amazon.com/gp/product/B00HERPNF4

Take care.
-Mike

Post Edited (dudester) : 7/5/2016 4:36:58 PM (GMT-6)

What a super nice post, thank you! I'm not sure why I haven't posted in here earlier, I definitely should have since, as I'm sure a lot of you know, if you don't have UC or Crohns, you just don't understand what it is like. It's super nice to see how supportive everyone is and there was a time where I couldn't even sleep for more than two hours at a time, or roll on a side without having to use the restroom. That was quite the nightmare and even with my troubles now I'm just glad to still be kickin.

I have read many places not to have coffee on a flare but I don't think it has caused trouble and in fact, I think it has eased my guts "anger". I know that butter is supposed to be a no go too because it is dairy and hard to digest but I think since it is dissolved in the coffee that it handles well and maybe the butter coats from the coffee's acidic nature, maybe!! I'm going to at least give it a shot, I was out of coffee for a bit, but I've restocked.

And yeah I'm going to get every test I can for Lialda possible poisoning, food poisoning and UC/liver related.

Regarding smoothies what used to work for me on my workdays tossing in the blender some vanilla soymilk (though I guess it is bad for us guys now??), canned spinach, blueberries, and I think bananas. It wasn't the best tasting drink in the world but not the worst and it meant no more runs of the bathroom for the day. I might have to bring it back.

Thanks for the ideas on the food! I've found that white rice really helps too and eased my stomach from the nausea. Do any of you ever get nausea as well? I can't remember ever having it in a previous flare.

Regarding the spinach powder I did find a better deal here:
https://www.amazon.com/Spinach-Powder-7-Lb-Bag/dp/B000SAUVFG
https://www.woodlandfoods.com/products/spinach-powder-/c-24/p-26807

The second link is their homepage and from what I can tell it doesn't have any other additives, unlike another powder I was thinking of getting which I didn't post the link for. I think I'll send them an e-mail just to get verification, but around $7 a pound (with shipping) seems almost too good to be true.

QUESTION - Have any of you had success with Turmeric, Bromelain or Psyllium pills? I'm kind of worried about shoving too much down the hatch since I'm already trying a bunch of stuff but I'm interested.

I'm kind of tempted to go without my lialda this weekend and just see what reaction I get, hmm.

Thanks so much again for your post and I hope you are doing well in your UC battle!
-Mike

I totally agree with your idea of taking action that you can on your own in the meantime. I always did that but went overboard, trying so many things at once out of desperation that I never knew what worked and what didn't. Ha! I love turmeric and that's been really helpful to me.

As for food- you know what works for your guy better than anyone. There are so many diets out there and I think I have tried them all- keeping a careful food diary and finding what worked for me was a big breakthrough. There were elements of each one that were helpful but I had to personalize things. I'm doing great right now. Just because butter is rough on some people it doesn't necessarily mean that it is for you. Kerrygold grassfed butter is divine.

And if coffee doesn't bother you - I'm jealous! It still irritates me. Sigh. Feel better!

It does sound like things are getting better for you and I hope it continues! The blood decreasing sounds like a great sign.Keep up with getting as much sleep as you can.

I buy Dr. Danielle's Turmeric/Curcumin from amazon and really like it - they will email you coupons and stuff if you fill out surveys and submit feedback. I did cook chicken breast in turmeric during flares when having the curry blends sounded like too much, and it was really good - if you like the flavor. If you like curry it might be worth a try! You can also buy fresh turmeric root to keep in the freezer, and then use a veggie peeler to put some into your smoothies. I have done the same with ginger, which I love!

Thanks for the coffee tip - unfortunately I like my coffee like jet fuel and super strong. Which is probably part of the problem....haha. :) I've been back on the green tea train!

Glad to hear you had a good day in terms of BMs - but you may be tired due to not getting enough calories. Hope your eggs treat you right tonight - maybe add in some white rice to give you a little energy! Carrot juice is good but you may need more carbs to feel better.

You are very welcome - we have all been there!

So just an update I saw a Dr. in my Primary's Office and he was really upset that my GI wasn't going get me in until the 29th. He personally called their office and when they told them they couldn't move up my appointment he wouldn't accept it and kept suggesting alternatives. Turns out, he ended up getting it moved up to Monday!!!

Also I took the advice you all gave me and asked about the blood test and also testing for food poisoning and Lialda poisoning and the Dr. was happy to have me do those tests. I did all of them yesterday including two stool samples, one for the GI that was a few months due and the other for that Dr. for the food poisoning so hopefully I'll have a lot more info soon, woo.

Thanks so much everyone for your suggestions and I'm so glad that I went to see A Dr. period when the GI Dr. door was shut so hard in my face. What a difference it made. I'm also going to be filling in a "Customer Service Award" for that Dr. because he would not back down from getting that appointment moved sooner.

Thanks again everyone, I hope you've been doing well!
-Mike

I'm really trying to find a liquid that helps provide nutrition but doesn't drive my flares through the roof. I tried this mango protein juice that made my headaches go away and made me feel great but I went up to 11 BMs a day, the same as if I ate rice. I tried some V8 today too and I haven't even eaten anything else all day and I've spent most of my day on the can. At least the coffee and butter and MCT oil don't seem to cause any problems and eggs only add a few BMs. I know both V8 and the protein drink have a low amount of fiber in it but I wouldn't expect it to make me have so many BMs. It is only 6 a day with the coffee combo + eggs. Every day is a learning process I suppose. Thanks for the post and I hope you have a great day!
-Mike