Hello all (from a real old timer)

Hey Guys! So it's been years since I've posted here, but I do lurk every now and again. It is pretty nostalgic to see a few of the other old-timers who are still around. I see Old Mike and Canada Mark et. al. are still keeping up with all the cutting edge research and quincy is still giving the best advice around, NSSG, et. al..(definitely saw others I haven't mentioned )

I have, until the last couple of weeks been doing great. I'm still using the DMSO treatment I'd started back in the fall of 2012 and still doing the cannabis oil that I started in May of 2015. I have been in a rock solid remission for several years now.

Until this previous flare, my flares always started very benign: a little white mucus, then a little black mucus/lining cells, not sure really but some type of black liquid in my stool, and thirdly would progress to blood. Although they could sometimes last many many months, they were easily managed because I only increased my frequency to 3-4 per day and the blood and mucus were my only problems.

This last flare was not so-by a long shot. I have noticed over the last many years, not sure when it started but every 6, 12, 18 months I will have a blowout day of 10-20 stools followed by another bad day of 10-15, then say 5-10. I'd be back to normal after that with the exception it might take seven-10 days to get my stools to firm back up completely. It last happened over July 4th when my wife and I were on vacation. Although I went about 40 times over three days, the symptoms started the day before we left home and had abated by the end of the third day (except for a little loose stool).

Well last Wednesday I started what I thought was another one of these. By Friday morning, probably 40 bowel movements, many of pure, almost clear water, "i'm done with scope prep" variety, I went to the ER for 2L of fluids. I still thought this was one of those other incidents and would abate. Back at the ER on Sunday for 2 more litres shattered any of those illusions, then to the ER on Tuesday evening for two more. All in all I had around 110 BMs in the seven day period. I finally wised up and called my GI and I took my first 60 mg of pred yesterday morning. Amazingly, my appetite returned within hours, say 80%, and completely by this AM. I had a few more BMs yesterday, just small dribbles of leftover waste in the colon I assume. Besides that I haven't had a single bowel movement in going on 24 hours.

My two pressing questions are:

1. I'm so scared all my flares will present like this in the future and the days of persistently long but mild flares are gone. I guess time will have to tell on that one
2. But if my state was SO negative that I could hold NOTHING down and passed just food bits of what tiny bit I could eat and otherwise pure liquid...how has one day on pred helped quell the symptoms so much? And I've see no blood or mucus with any of the BMs.

I also noticed upon waking during that week I would sweat MASSIVELY. I showed one of the ER docs my dark grey night shirt next to a clean very light grey one and he said "Holy cheese and crackers" lol.

Anyway, regardless of the circumstances it is good to be back and see some of the old posters still around!

Post Edited (Levi) : 2/7/2019 3:36:54 PM (GMT-7)

I do have Crohn’s but my flares have always been more UC-like. All my doctors initially said UC for years, and then the much lambasted Premtheus blood test showed “UC like Crohn’s” All my docs said it was wrong until I showed iliac inflammation once. That is why I always frequented the UC (an it’s so much busier).

But my blood, urine, and stool tests were all in positive ranges and negative for any baddies in the stool cultures. Every test was run 3X, except stool only 2X so a good amount of cross checking was done. Coming up on 24 hours now with no BM and I’m eating everything in sight.

Levi, when was your last colonoscopy? And have you had any MRIs, CT scans, or capsule endoscopies done to look at your small bowel?

CT scan with oral contrast? IV contrast? Neither?

That's what I figured - that's a pretty standard test done in ER situations.

To visualize the small bowel, it's really essential to have oral contrast. But that takes time, and time is money in the ER, not to mention that time could be critical in ER patients. So oral contrast is skipped.

It seems to me you're way overdue for another colonoscopy and/or an MR Enterography to get good images of your small bowel.

Do you see a GI on a regular basis?

notsosicklygirl said...
... Crazy that the CT looked okay. ...

CT scans without oral contrast can miss a lot in the small bowel (which, of course, applies to people with Crohn's more than people with UC).

Hi Levi: Yea oldmike is still at it,but not so much anymore.
Hope you are feeling better.

Would you mind going over your DMSO procedure again I forget.
I know we talked about it many times in the past.

oldmike

Thanks iPoop.

Old Mike: It's pretty simple. I wash really well on my chest with anti-bacterial soap. I used to towel dry with 'lint free' cloths but would inevitably see some evidence of lint in the bottle after a while if I toweled my chest dry. So I started just swiping the water off my chest with my clean hand so the DMSO doesn't react with the leftover H20 and burn my chest. It doesn't have to be too terribly dry. I open the bottle with my other hand and just apply it for 20-40 minutes with 2-3 fingers of my clean hand all over my chest, probably about a tablespoon.

I've experimented with glass bottles and stainless steel roll on balls, but the stainless steel ball is still encased in a threaded plastic component that attaches to the glass bottle so I was a little hesitant to keep using that and went back to the straight from glass bottle to fingers to chest method. It's 'odorless' but you can still tell it is absorbing when you get a faint taste in your throat.

Hi Levi - Good to see your name! Sorry for your issues.

I hope your GI appointment and likely subsequent scoping can give you some answers! I'm glad you've had some quality time of not having to deal with symptoms.

@ songlady & Quincy. Thanks! I didn’t see you in any recent threads songlady so I thought you may have moved on too. Sorry to read about what you’ve gone through the past several years in your sigline, but thankfully it sounds like you’re better now .

@ Mark Yes, I would say the cannabis oil has done more for me than any drug I’ve been on (except pred of course) and gave me a rock solid almost four years of remission. But just to be clear, I’m actually extracting the oil from plant material so in addtition to the CBD I’m getting quite a bit of THC as well. I extract one ounce of plant material into two cups of coconut oil.

On the WOO, I believe you used the Oregasupreme capsules? I think I need to (at least start) with the drops. I remember as soon as I took one capsule years ago it opened the floodgates and everything was watery imemdiatley following the first dose.

Hi Levi, Welcome back (although I am so sorry that you have to return) I hope that your GI can shed some light on this and that you will will be feeling better asap.
B

Thanks Levi! I pop in from time to time to see how things are going with the gang. I've had a few bumps along the way --am stable for now, but I usually run into trouble in the spring...so we will see. Also my GI is putting the hammer down on my finally getting another scope in the spring so hopefully I will remain stable after that. Those usually put me in a flare and I am from the "if it ain't bothering you..don't bother it" camp. My GI has been patient with me but I will finally have to just do it.

Wishing you to get this "crap" (pun intended) under control and enjoy a major long remission. Hugs!!
B