Curious

So being newly diagnosed, I have been reading this site frequently and getting lots of great information.  At first, reading everything made me SO NERVOUS, but then I learned to set aside the fear as much as possible and read the posts as a way to learn about the disease. 

For those that go to the bathroom 10,20 even 30 times a day - was this because you waited too long to tell your doctor? Or did you just wake up one day and all of sudden have such a severe flare?  How many days did you have that many bms?  Were you on any meds when that happened?

I was kind of under the impression that as soon as I start to notice an increased # of bm's - like 4 or 5 a day - or any sign of blood that I would call the GI dr and get a change of meds.  Is this not really the case?

Denial has a lot to do with getting worse (increased BM's) and not wanting to admit that it's worse.

And I'll say for myself that early on when I was diagnosed and on meds (Asacol) it didn't occur to me to call the doctor if BM's were that bad. Stupid but there's that denial thing going on. And my doc never told me to call, was pretty cold and dismissive about it when I described how bad my symptoms were.

And much later, once you've been through ALL the meds you are willing to do (so far I've drawn the line at not taking biologics) you kind of think "There's nothing they can prescribe that I would take except possibly prednisone." So you try and get back on course yourself.

Congratulations on conquering your fear and facing facts and becoming more informed about treatment, etc.
I was WAY slower than you. Good job.

My flares tend to come on gradually. That could someday change; one of the myriad frustrating things about UC is that it does change. But so far for me - 27 years since dxed with UP( ulc. proctitis) they've come on gradually.
And it took me until a year ago to figure out what you've already learned - hit the meds soon into their being a sign of inflammation and hopefully turn around the flare before it really blooms!

My UC has hardly ever interfered with my life; I remember a few times waiting until doing something (like getting on a horse) until I was pretty sure I'd had all the poops I'd have on a given morning.....
Folks come here because they need support and answers, not because life is peachy - so this is not a fair cross section!

Yeah, reading everything used to make me nervous too - but it's such an individual disease in how it manifests .... your journey with it will be unique.

I hope all the replies help you some!
And - my GI now lets me have enough meds in stockpile, if I have symptoms I starts them and THEN call him. Works great!

It used to be a 30 day slide and I had time to get out of the way.

That all changed and it comes on suddenly. I was phoning the doctors nurse multiple times per day as I had a 4 hour interview to go to and was bleeding 20 or more times per day.

She said since we did the stool samples and it was negative I was at liberty to down a bottle of immodium if thats what it took to get thru the interview. I also ran thru 10 different meds until I asked to switch to sulfasalazine and Librax. Now by then I had lost 40 lbs of muscle as this happened just when I hit my personal best of 200 lbs and very strong. I had just picked up a laptop from a new client for a work at home job, was staying at a nice resort, no real stress and BAM it started Aug 3rd. Just got tapered off prednisone finally two days ago and 100mg of pred would not even stop this one so 90 days of pred wrecking my body for nothing.

Then when I was doing well and waiting out the pred taper I got a UC related stroke or thrombosis out of the clear blue sky although you could see my platelet count had been climbing all summer and was 688 at hospital admission and 466 upon discharge. I dont know where it is now but I am on blood thinners and following the neurologists advice to drink water constantly and 'get my UC under control'. He says that is the only way to prevent another Thrombosis which can become a pulmonary embolism if it moves. He said it was UC inflammation + prednisone + dehydration. I can control the last 2 100%. Very hard to control the first one.

The first time I flared, I had no idea I had IBD. It went away on it's own.

The second time, I had a very serious flare. It took three or four months for me to see a doctor, because I had to wait for insurance. I saw a GI and was prescribed prednisone and 5-ASAs. I became pred dependent. I did fecal transplantation. It put me in immediate remission.

Fast forward two years, after being on antibiotics a few times, I had my third flare. I went from a couple of drops of blood to a severe flare within a few days even while taking oral 5-ASAs. So I stopped taking the 5-ASAs. That flare went away with no medicine, a change in diet, and probiotics. I had refused to go on pred again. Not only is the medicine bad for the body, but I had become pred dependent the last time I was on it.

I did fecal transplantation again, only two treatments though, and I've been having only very, very mild flares, restricted to the rectum. My GI gave me Canasa suppositories. Now if I see any blood, I put in a canasa suppository, and I won't have any symptoms the next day.

My flares always start at the rectum; so the canana suppositories have been really helpful. I don't use them often though, because I'm concerned with 1) the long-term effects of the medicine and 2) the possibility that they will stop working if I use them all the time (this happened with the oral 5-ASAs).

I should do fecal transplantation again.

BTW. It was from this forum that I found out about canasa suppositories. I asked my GI for a prescription, because the 5-ASAs weren't working. He seemed surprised that I wanted them and gave me a prescription.

Post Edited (subdued) : 10/26/2010 9:09:47 AM (GMT-6)

when i first got sick i started out with just blood in my poo, then as it got farther along, i started having to go more and more, but it wasn't enough that it interfered wtih my life. but within a year i was having trouble with blood leaking out, and was in the hospital two years after first symptoms because i was so dehydrated and so sick, i lost like 20 pounds or something, in about two weeks. thats when i was diagnosed. from there for the next 6 years it was bad, i never had a day, except when i was pregnant, where i didn't go at least 6 times, and usually alot more than that. Esp if i ate certain foods or drank things. i took meds and they helped some, but it never was right. i ended up opting for surgery after 5 hospital stays and realizing i was wasting my life in the bathroom.
that being sad, lots of people have really good luck with their meds.

bosco...my flares are minimal and the most bms I would have might be 6. I don't have diarrhea anymore since mine are limited to the rectum now and I treat very early.

I don't think you would have to go to the hospital at 10 bms a day unless your meds didn't start to kick in or you were getting much worse.


Is there a reason you're not on oral 5ASA?

q

I was on sulfasalazine through my first pregnancy - because it was what was available then - and Asacol for my second pregnancy. The 5-ASAs are considered pretty safe - safer than flaring, actually....
Flaring is more likely to affect you than your baby - the body prioritizes and the baby gets top billing.

Have you tried doing the Rowasa on your left side? That's the way I do, might be easier to reach.

But - do a search here; we've had lots of discussions about meds and pregnancy. Asacol, Lialda, etc are in the 5-ASA family of meds.

I think it's wonderful you've responded so well to the Rowasa!

Lots of people replied already and I didnt have time to read everyone's posts yet (part of the reason Im posting, to sub). Ive got just enough time to quickly answer the op...

In hindsight, I did go to the dr when I started having diarreah with mucus when i was about 19 or 20. I had mild urgency issues, as well as feeling like I was digesting a stone whenever I ate. Funnily enough, that subsided. Then about 6-ish years later, I had kids, no problems whatsoever during my pregnancies (which is interesting bc sometimes some of my symptoms disappear during mensturation also). My youngest child was 1 1/2 when I had my first crazy, kinda scary symptom. I shat pure grease after eating a chinese takeaway one day. Then that same year I had a bout of C and almost passed out when I finally had a bm. Went to dr with that. This gp was great, was really wanting to help, investigate etc. I think he thought it was ibs, I was under MAJOR stress at the time. However, it took about a year before I had any symptoms again. It began with severe abdominal pain for about a year before the bleeding started. I went to gp for a whole year with explosive bloody diarreah which they treated as hemmroids (geniuses) without ever checking me out once. I got increasingly worse with pain and rectal bleeding, D, etc, bm's increased to the stated 20-30 times a day, always blood for a month when I rang nhs direct with the symptoms, they said get to A&E immediately and got my initial suspected diagnosis then. It took me few more months for my colonoscopy to come thru and then got my official diagnosis. That was that, but it didnt end there for me. I had never heard of ibd and the gp's and gi's were absolutely NO help whatsoever. Told me to come off maintenance meds, lost my test results, didnt recognise I had lingering inflammation and I suffered for five years with low lying inflammation that flared up from time to time majorly. Its been a rocky five years for me, but now I got a gi who seems clued up and Im finally on the road to recovery.

Thanks Amy! I really appreciate your advice. I am definitely going to ask for oral meds. It makes sense - I am just wondering why my dr didn't give them to me in the first place - could be because I am prego but I will have to ask.

When I think back for the last year or so, I can remember going to the bathroom and when I wiped it would just be like a clear snot on the paper. I would have formed bms and sometimes notice food in them, but there would be this mucus stuff when I wiped. I assumed it was normal. Must have been the beginning signs. If I could go back to that once I am no longer pregnant I would happy. I just hope more than anything things don't get worse. Hmm... maybe that is another topic for the board! :)

I honestly couldn't agree with you more Quincy. I feel I am prepared to really push him if I have to. It would put my mind at ease anyways. I really don't want things to spread and don't want to worry about this once the baby is here.

Thanks so much for all the advice. I will post something after my appt on Friday and let you know how it went :)

I just realized you're pregnant - that'll teach me to miss the important stuff!

Please take extra special care of yourself post-partum. That seems to be a real danger zone for UC, and it's very easy to ignore yourself and your needs when you're taking care of such a teeny person. I don't know if it's the hormones or sleep deprivation or stress, but that period right after you have a baby can be very difficult. Make sure you have really good support!!

aguywithuc,
I was wondering about your UC related stroke or thrombosis, He said it was UC inflammation + pred + dehydration, Im a runner and before each event/long run, I take 2 Asacol, 2/3 Pred, and 2 Immodium, No water during and drink powerade after..Seems to keep me under control, but now am a little worried Im putting myself at risk...

bosco123, I am newly diagnosed (2months) and it was a severe flare/onset that put me in the hospital, and that is where I got my diagnosis, Im still trying to figure it all out, and sometimes the info can be overwhelming. Hang in there