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Bleeding again & GI on vacation

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Posted 12/29/2007 11:44 PM (GMT 0)
Hi guys,

I noticed blood on the toilet paper yesterday and today for the first time since last May or June. I diligently take my 12 Asacol every day. I haven't used the Rowasa in about 3-4 weeks b/c my GI told me I could stop them (even though people here say to keep using them - I should have listened to you guys!) I thought I was really close to remission...hardly any symptoms for quite a while until yesterday. Now, I have that annoying constant abdominal gurgling thing going on, mucous, gas and a little blood. It's not very bad right now (yet). I called and spoke to a really unhelpful on-call nurse and she said my GI is on vacation for another week. She didn't even know what Rowasa is... She said I should come in to see someone next week "if the bleeding doesn't stop on its own," but I'm so sick of going there. It's an hour away and just seems like such a waste of time when I could just talk to my GI over the phone. This is all really stressing me out. Also, I am away from home visiting family and there are lots of stressful family issues happening now, too. Plus, I haven't had a cigarette in 4 days and don't have a car here to go buy some and my family hates smoking. Sorry to complain...hope you're all doing well.

Should I start using the Rowasa nightly again?

p.s. - I have a 10 hour drive ahead of me tomorrow to get back home...not looking forward to it.
Posted 12/30/2007 3:06 AM (GMT 0)
Yes, definitely try Rowasa at bedtime. This is when the 5ASA foam would be good to have, too-- ahead of your 10-hr drive. (Because foam doesn't slosh around after insertion.) You'll likely get back on track once you return home & can hopefully kick back & relax a bit. Good luck with the drive, take care, & keep us posted. (As you can see from some recent hostile replies in other threads, all rational thinkers are needed here on deck! )
Posted 12/30/2007 3:18 AM (GMT 0)
hehe =) Thanks, Old Hat. Yeah, I sure wish we had that foam...
Posted 12/30/2007 3:30 AM (GMT 0)
Grrr!!! Doesn't that just irk you when the doc is on vacation and nurse won't help you with anything!!! Sheesh!

Is there another doc in the practice? Anyway to talk to another nurse? Would your PCP/GP help you out with the rx?

Safe travels!
Posted 12/30/2007 3:40 AM (GMT 0)
Probably the majority of our doctors are vacationing thru the holidays. I know mine is, too. How is the weather out there, Sara14? / Old Hat
Posted 12/30/2007 8:45 AM (GMT 0)
Sara..yes, start the Rowasa.

For the drive, I would think that an imodium will help at least to keep some of the intrusive symptoms at bay during that time.

I agree to get another doctor to prescribe the Rowasa. Interesting the nurse/receptionist/assistant make the comment of the bleeding stopping on its own...sheesh.

Funny how rectal meds are so terribly discriminated against ...sigh.

quincy
Posted 12/30/2007 10:50 AM (GMT 0)
Was the blood merely speckled on the paper or was it a strong mix of blood and mucas in the stool? If it was just a little speckling on the paper then it's unlikely to be the cause of an ulceration further up the colon, especially if it's fresh and bright red. Speckling on the paper usually just means that you've got a little tear around the sphincter, something which happens to me whenever I've gone to the loo more than usual.

However, if it's within the stool along with a substantial amount of mucas, my own GP's usual rule of thumb is to give it a couple of days and if there's no improvement or if it's gotten worse I would suggest contacting your GP's secretary, to hell with the nurse because to be frank, some of them can be morons to make an appointment to be seen as soon as possible.

Also, if you're stressing out, I would make sure you take the time to relax some, high stress is never any good for any sort of stomach and gut problem.

I hope you manage to get things under control soon!
Posted 12/30/2007 10:52 AM (GMT 0)
Oh, to Quincy, I was told that someone with UC shouldn't take immodium because it effectively acts as a bung and because UC sufferers already have a fragile colon, there's a higher risk of perforation. That and it says right there in the label that immodium shouldn't be taken if there's blood present in the stool.

My gastroenterologist just about freaked when I told him I'd taken immodium just days before I was diagnosed ^^;;
Posted 12/30/2007 1:12 PM (GMT 0)
mine told me I could take immodium....hmmm
Posted 12/30/2007 2:07 PM (GMT 0)
I hate when that happens! It seems our Uc has a way of popping up at the most inconvenient times. Sara, do you have enough Rowasa to last you until your GI calls back?

Inkers, I'm not sure what you meant when you said that immodium acts as a bung - what is that? But occasional use of immodium is usually fine if taken sporadically and not frequently. The main reason doctors don't like us taking it is because it can increase the risk of toxic megacolon. I personally don't like the stuff, it makes me feel worse. But my GI said I was allowed to take only 1 a day to help slow down the D if I had to.
Posted 12/30/2007 3:23 PM (GMT 0)
in my experience if you call them often enough and ask to talk to the doctor enough eventually someone will give the dr the message and they will call you back. You shouldn't have to go to the office all the time, that costs money! I asked my old dr's nurse to give me the number to the office where i had my appt. She wasn't even in the same building as him most of the time! one of the office nurses took my question and gave it to him and he did call me back. It took 5 days for him to do it and then he called my parents house instead of mine, but if you really don't want to go in to the office, just make it very clear and eventually you'll be able to get a message to the dr. needless to say i'm going to try a new doctor after these quackers kept putting me on the back burner like I didn't matter. good luck getting a hold of your dr!
Posted 12/30/2007 11:21 PM (GMT 0)
For Sherry!!

http://www.thefreedictionary.com/bung

Inkers...you're right, not a good thing to take imodium frequently, although in a special circumstance it would be OK.  I did san "an" imodium...not meaning many.

 But, I reread Sara's posting and should have clarified in my response that if diarrhea was an issue, the imodium would help as no not have the frequent stops or possible "accidents" interfere with the 10 hour drive.

It has its place, but I don't agree with regular use of it because it stops the peristalsis.  Regarding the perforation, yes..when the colon has no elasticity left and has been stretched to its limit...it's easily perforated from toxins and gas and stool that have built up in that area because there's no natural movement in the colon to push it out of the area.

Welcome to the forum by the way.

In another posting...introduce yourself if you haven't already done so. 

quincy

Posted 12/31/2007 12:47 AM (GMT 0)

Thanks to all of you for all your caring replies! I made it home just fine and I've only had to use the bathroom once so far today (and saw no blood, yay!). I still have the almost-constant stomach gurgling/churning going on, some mucous and some mild crampy pain, but nothing too bad. I still have refills of Rowasa left and had one filled while visiting my family yesterday, so I used one last night. I will continue using them nightly.

Inkers - The blood yesterday was just some streaks on the toilet paper (bright red). I don't think it was an anal fissure though b/c my abdominal area keeps churning, my stools weren't fully D but they weren't formed like they usually are, there was mucous and my rectum kind of hurts...it feels like it's inflamed, if that makes sense. Thank you for your advice. I don't think my doctors have secretaries. Are you in the U.S.? Usually here they make us talk to our doctors' nurses, before the actual doctor. At least that's been my experience. Or did you mean just talk to the receptionist to make an appointment? Welcome to the forum, by the way. =)

Old Hat - I was in Indiana and the weather there was pretty nice..in the 40s and no snow. I'm back in Iowa now and it's a bit colder, but still okay. I had good weather the whole drive home. Thanks for asking.

On a bit of a side note, the generic Rowasa I picked up in Indiana is made by a different company than the one I get in Iowa. The packaging and enemas themselves look slightly different and the ones I got in IN seem to have a lot more lubrication on them, which was nice. And they aren't made in Isreal, like the ones I had been getting.

Posted 12/31/2007 1:22 AM (GMT 0)
Hey, Sara, it's great to read that you're safely home! Hopefully the guts will calm down quickly now. What's that about generic Rowasa being made somewhere else? Can you tell where-- from the Indiana package? I'm curious to know & hope that if it has better bottles we'll be able to get it in my area, too. My gastro said over a year ago that many patients were complaining about the Israeli bottles so maybe somebody in the pharmaceuticals finally heard about the dissatisfaction & got a different supplier. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])
Posted 12/31/2007 1:35 AM (GMT 0)
Hi. It says it's manufactured by TEVA Pharmaceuticals USA in Sellersville, Pennsylvania. The box has purple on it and the enemas have purple print on them versus the blue box containing the Israeli ones I've been getting. The bottles themselves are pretty much the same (same size), but the one I used last night had a lot more lube on it than the other ones.
Posted 12/31/2007 1:42 AM (GMT 0)
hey sara - this may not be what you want to hear, but...... you said you haven;t had a cig in 4 days, right? my understanding is that often, smokers experience a flare if they stop smoking, so it may be that the flare-type symptoms are from the lack of cigarettes... just a thought.
Posted 12/31/2007 1:48 AM (GMT 0)
THANKS! That's definitely a new company. I looked at the Israeli-made that I have left over & the company listed is Agis. It sure makes more sense to get them from a PA supplier. Maybe after all the inquiries Trixy made a while back ... ? / Old Hat
Posted 12/31/2007 1:48 AM (GMT 0)
Hi, UCinNC...yeah, I was wondering if that was the culprit, too. I have gone multiple weeks without smoking in recent months and never got symptoms though, too...so I don't know. I haven't taken my probiotics in about a week (lots of traveling and stress kind of screwed up my schedule), had a cold and took lots of cold meds throughout the past week and have been stressed out. I also first got flare symptoms around this time last year (January). It's so hard to tell what's causing symptoms or if it's all just a coincidence. Thanks for your input.
Posted 12/31/2007 1:52 AM (GMT 0)
You're very welcome, Old Hat. Yeah, my other ones were made by Agis. Now we just need to get on these companies about offering us the foam. I think I may try calling and/or writing some people about this in an effort to let them know that there is demand for it in the US.
Posted 12/31/2007 1:59 AM (GMT 0)
Right, Sara! I was thinking the other day that we should ask Knitty_Cat what company makes it in Australia, in case they have an affiliate in the U.S. We need a likely source here to aim a campaign at. / Old Hat
Posted 12/31/2007 2:13 AM (GMT 0)
That sounds like a great idea, Old Hat!
Posted 12/31/2007 2:14 AM (GMT 0)
about the generic Rowasa. The first time I had it filled, the local pharmacy gave me the TEVA ones. I had no issues. When I had to switch to mail order, they sent me the other ones that were super difficult! I've never had the "real" Rowasa. I do agree that the TEVA ones (purple) were easier to use. The Agis ones (blue) were not good :(

Glad to hear that you're home! I hope that this was all a little blurp and things will correct themselves now that you're home and can get back on schedule.

Happy New Year!
Posted 12/31/2007 6:47 PM (GMT 0)
Thanks dakotagirl! I hope it was just a little blurp, too. I'm feeling pretty good today.

Happy New Year to you, too!
Posted 12/31/2007 10:04 PM (GMT 0)
I just talked to my GI's nurse and she talked to another GI there and he said we need to rule out C-diff since I've been on antibiotics recently. So, I get to do another stool sample...yippee. (sarcasm) My last course of antibiotics was about a month and a half ago...do you think it would take this long to show symptoms if i had C-diff?
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