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Ulcerative Colitis
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Posted 10/24/2012 9:36 PM (GMT -5)
Well, I've been going downhill for a few days. Found out my GI was on holidays and two attempts to see my family doctor didn't work. Last night I was seriously worried about toxic megacolon. I hadn't passed any real stool all day, just blood and poop residual every time I took a drink. Sooo tired, chills. My BP was 92/60. I was so hungry at suppertime last night, I went and got myself some sushi because it was the only thing that sounded appetizing. Well, I was up and down all night, by the time 7 o'clock came around I had been to the toilet(mostly sharting, but a few times it was a bit more)14 times since midnight. Between 7 and 8 I had actual bowel movements which completely exhausted me but I was relieved, I felt I could dismis the toxic megacolon.

So I took a couple of naps between showering, toileting and getting dressed. I was so tired that I figured I'd better haul off to emerg before I collapsed. I was in tears with exhaustion just getting down there but I did it. Thankfully emerg wasn't busy and I was in and out in 2- 1/2 hours. (I had blood work, urine sample and given a stool sample kit to do at home...plus a script for prednisone. cry

Back on the couch at home, I got a call finding out that my well water has a high coliform count! Crap...I never suspected that. I have a complete water system with UV light and filters that's maintained every six months/ UV light is replaced once a year.

It's a roundabout reason why my water got tested which I won't go into, but I'm not supposed to need to test it, so here I am with UC and sicker than a dog, and I might be putting contaminants in my body from my really expensive tap water. smhair

So it's possibly a good news/bad news story.

I'm experiencing the urgent sharts with every sip of clear juice I drink. I'm just hoping the dehydration is keeping at bay. I should just stick with clear fluids for a couple of days, but I need something to put in the stool sample bottles so I can know for sure if I'm being 'poisoned'.

I have to read about the prednisone thing so I can decide if I should take it now or risk waiting it out. I'd appreciate input on that.
Posted 10/24/2012 11:23 PM (GMT -5)
Bummer!
So the water that was tested, was it right out of the well or from your faucet?
I assume you've quit drinking the water or boiling it before you drink?
Are you on some good probiotics?

If you're planning to do a liquid diet, I have no idea how pred will affect you vs. how you'd do on it with food in your belly.
Can you do enemas at all?
Posted 10/24/2012 11:59 PM (GMT -5)
Wow, water with a good filtration (UV) system and high coliform...not good, but at least you know.

It's good you're doing stool samples...no matter whether it's "stool" or sludge with mucus, blood and poo...it'll still show if you have any other bacterial infection.

I would say you're flaring considering your increase of symptoms over the recent past.

when you were originally diagnosed, what meds were you put on?

I see you're using olive oil and coconut oil..do you mean for cooking or taking it alone?

Can you eat soft boiled eggs or scrambled with just a drop of water?

I think you should get back on the Mesasal...how much were you taking?

Any rectal meds in the mix before this?

What was the dosage of the pred and the course you're to take?

Hope you start to have some improvement soon.

q
Posted 10/25/2012 5:25 AM (GMT -5)
Do you think that the water contamination is causing your symptoms or just making them worse?  I had a water filter installed and I can taste the difference and that is will city water, not well water.

 

Posted 10/25/2012 6:45 AM (GMT -5)
Lodi,

Sorry to hear about it all.

How long will it take to clear up the coliform?

I second the advice: boil your water or start getting bottled water for a bit, double up on your probiotics.

What about doing some protein shakes too?

I hope you start to feel better soon.

Posted 10/25/2012 1:44 PM (GMT -5)
Thanks everyone for the comments, advice, and commiseration. After just a day of not drinking my water, I feel like a different person..still tired, but there is energy getting to my muscles now. I was away from home in early Sept for four days and the same thing happened, the severity of my symptoms went away like a switch was flicked. I posted about that because I was unable to use my Salofalk enemas when I was away and this led my GI to consider that I might be reacting negatively to the Salofalk enemas. Now I'm thinking my water may have been contaminated for awhile. It would make sense because nothing I'm doing is working like it should or it just works intermittently. If I improve over the next while, I think I'll have my answer.

When you test well water, you check it at the drinking source ie the kitchen faucet. I brought more samples in today and I should now by tomorrow afternoon. This will verify if it's contaminated and then I'll have to start the process of figuring out what to do to get it clean. Tomorrow the filters and UV light get maintained, so that's a start. For now I'm drinking bottled water only, I'll boil water for dishes etc just to be safe.

Doubling up on my probiotics sounds like a plan...thanks, insofla. I'm avoiding dairy at the moment because I had almost instant D the last time I put cream in my coffee. If this continues to clear up, I'm going to give liquid dairy another experiment...I want to do yogurt and kefir for the beneficial bacteria I also enjoyed my Miracle whey protein shakes, they were delicious.

Scarecrow, I'm going to investigate if my first bowel trouble symptoms coincide with the installation of my water system. It would explain why I have intermittent problems because my filtration system should've been working most of the time, but if it got overloaded (like during rainy season)coincidentally when the UV light was nearing the end of it's functional life, I may have been chronically contaminating my system.

quincy, I had to go to the lab to get more sample bottles...the hospital gave me the wrong ones. The doc put me on 1000mg Mesasal twice a day when I was originally diagnosed earlier this year. Worked for a few weeks, but I still had trouble when I got my period, so he upped my dose to 2000mg twice a day. The Salofalk enemas are more recent and they seemed to be helping and then not. I tried one a few nights ago and had zero retention.

I only missed one dose of Mesasal, I'm too scared or unknowlegeable to cut out medications without the doctor. I was too sick to take that dose anyways.

I'm going to wait on the prednisone now since I feel so different.

I use coconut oil and olive oil for cooking, I get super nauseated if I take coconut oil by mouth and I've never tried olive oil like that. I have an appetite again today or rather, I'm not too nauseated to eat.

I know I'm jumping the gun, but if my UC is caused from a longstanding chronic bacterial infection, doesn't that mean if I get rid of that...? My wonderful immune system may not have to attack me anymore?

Thanks again for helping. It's so great!
Posted 10/25/2012 1:59 PM (GMT -5)
Depends regarding the long-standing infection. I would have assumed the doc would have checked that during the process of elimination.

If you do have an infection, it needs to be treated.

i get extreme gas from yogurt and protein shakes, so just a heads-up that it could be part of your problem.

Sounds as though you need to get to step one with the water.....

If you do have UC, the continuing coliform intake could definitely exacerbate your symptoms.

Once UC is triggered, the flares will come and go...most of us ingest a lot of "bugaboo invaders" throughout our lifetime with few effects, but if the balance in the digestive tract becomes out of whack, it could be a nice trigger for a flare.

Probiotics are definitely a good friend, as well will fibre supplements to help feed the probiotics and sweep/carry out what shouldn't be in there.

q
Posted 10/25/2012 2:24 PM (GMT -5)
I did do a stool test when I first saw my doc about rectal bleeding. I know now it wasn't comprehensive because I have different sample bottles now. I'll question this when I see my doctor, but I think he only checked for c-diff. I'm going to be ticked off if that's the case.

Some coliform infections cause lactose intolerance from my preliminary reading.

I do believe I have UC, I'm just surmising that a chronic bacterial infection "could" be the cause after all they don't know why. I've been reading about this theory on Paul Jaminet's website: theperfecthealthdiet.com . His theory is that most, if not all chronic disease are caused by chronic infections. It really fits. His posts on bowel disease are quite fascinating. He talks about the bacteria creating biofilms around themselves which protect them against our own immune system.
Posted 10/25/2012 2:48 PM (GMT -5)
I've been thinking a lot about this lately. I wonder if the medical community could check us out and if it is found that we have bad bacteria living in these biofilms, possibly doing limited surgeries, laser zapping, or maybe even radiation to remove just the biofilms? Of course I know they won't do that, but what if they actually would? It kind of ticks me off that the regular GI's just go by the book and don't investigate anything (other than C-Diff). No one seems to care about finding out the nuts and bolts. They just leave it to researchers to think of these things and if the researchers don't think of them then it just never gets done.
Posted 10/25/2012 5:07 PM (GMT -5)
Gary, I'm 100% with you but it seems to be the nature of the business eh? Hopefully this fecal transplant protocol gets started soon. That one seems to be the least destructive and the most promising at this point.

Anyways, the website I mentioned earlier has info about biofilms and how we can use diet to battle them. This guy is really smart and I think he's really on to something. I think there's been talk on here a couple of times too.

I've wished many times that I had some sort of science degree so I could have a little more understanding of the science and know how to help myself more. In the meantime, I'm keeping my fingers crossed that something good will come out of this for me.
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