HealingWell
Search Close Search
☰

What happens when you start bleeding??

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/29/2010 12:07 AM (GMT 0)
hi, all.

So, I have bleeding for 2 days. The last, and only, time this happened, I ended up hospitalized for 14 days! I am already on Asacol. Can one start AND stop bleeding on Asacol? Am I definitely looking at steroids? What typically happens to you all when you start bleeding? Should I eat anything? Should I be as afraid as I am, or is this just life? Does bleeding = hospitalization, steroids, remicade or surgery, or is it just something that happens from time to time?

thanks!
Posted 3/29/2010 12:22 AM (GMT 0)
I don't think there is any correct answer to your question. It is different for everyone. for me, bleeding is always a sign of worse times to come. I've never had bleeding and just miraculously gotten better without some kind of drugs. I was able to pull out of a bad flare a little over a year ago with just Asacol but being you're already on Asacol, I don't think it will suddenly put you into remission.

How much Asacol are you taking daily? Do you use rectal meds? Is bleeding your worst symtom? Do you have cramping, urgency, mucus, gas, frequency?

I had bleeding for a while without other symptoms and I didn't find it to be that terrible compared to my recent flare which included urgency, pain, frequency, gas... I had to go the steroid route this time and I am going to switch to Colazal but I am not sure if that will turn things around for me. I am hoping for the best.

Have you ever tried any dietary changes to see if it helps your symptoms? I have, no luck. It does help some people so it's worth a shot. SCD diet supposably has "cured" many of their symptoms.

Depending on how bad your symptoms are, you may be able to get some relief with enemas or rectal meds.

Posted 3/29/2010 12:36 AM (GMT 0)
I have been taking 1200 mg 3 times per day.
I had normal biopsies 3 weeks ago, so my doc said i could stop the drug because i didn't have UC after all. So, i did...and ate a normal diet and felt good. But last week, after eating out a lot, i got cramps, gas a watery diarrhea. I went back on asacol. i got better, except i still had cramps and gas, which i have never had before. Then, yesterday, i started to bleed. I was having cramps throughout the day, without stool. Now i only get cramps when i have to use the bathroom. I am so freaked out because I don't want to have to be hospitalized. I have some rectal meds in the closet but don't know if that would be too much mesalamine for 1 day.
Posted 3/29/2010 12:55 AM (GMT 0)
No way, not too much. Sorry, I am not a doctor, you should speak with your GI before doing anything but I use 1000mg Canasa once or twice a day and I take 1200mg asacol 3x a day. The rectal meds are mostly topical so I don't think using them along witht he oral meds is a bad thing.

It's crazy that your biopsies said you don't have UC. What did they show was the cause of your initial flare? You must have had inflammation? My last colonoscopy showed inactive colitis throughout my intestines. It has since become active but I am on prednisone and it's controlled right now. Your symptoms do sound just like a colitis flare. Did you have stool tests? Maybe you have a bug or c. diff?

Posted 3/29/2010 12:58 AM (GMT 0)
when i first got sick, the biopsies were "consistent with UC"...but could've been antibiotic associated. However, the GI docs in the hospital (all of them) said it was 99% clear that I had UC. When i got back to my hometown, my new GI doc said let's rescope in a few months and see...he didn't think I had it, despite the biopsies. And, the biopsies were normal...no evidence of inactive colitis...no evidence of colitis, period. Now, 3 weeks later, i am bleeding again.
Posted 3/29/2010 12:59 AM (GMT 0)
Hey Docgp

Are you a general practitioner?....if you don't mind me asking.

I am going to guess that the first time you bled, you may have had to go to the hosp. because, not having been diagnosed, it took a while to get you on the right meds etc. and by that time the symptoms were out of control....could this be the case?

Anyhow, it does not have to be a matter of course that you go to the hosp., go on steroids, go on remicade etc. etc.

I am confused. Ask if one "Can one start AND stop bleeding on Asacol?" but then you say your GI told you to stop asacol after a colonoscopy. If you did stop the asacol and THEN started bleeding you may have your answer there. If not, I will say yes, it is possible to start bleeding while still taking the asacol.

Sounds like you need to call your doc and get back on asacol and/or add some enemas to get yourself back into remission....of course this is complicated by the fact that your doc is saying that you dont have UC. Perhaps he/she needs to have another look "up there" now you are bleeding again (not sure here, but I believe it is very possible to have a normal biopsy while you are in remission).

To try to reassure you a bit. I have been diagnosed with moderate, left-sided uc for over 10 years and have had my share of flares for sure. But I have never had to be hospitalized and I only just had to use steroids for the first time last year. Dont freak out yet!

Oh, just read that you have rectal meds in the closet. As I am not your doc I cannot recommend you take them. I will say that I have maxed out at this dose of mesalamine: 4.8 grams of asacol (4 pills, 3 times per day) as well as 2, 4 gram enemas per day (am and pm). Thats a hell of alot of mesalamine. I was ok.
Posted 3/29/2010 1:03 AM (GMT 0)
Maybe you should get another opinion. That doesn't add up.
Posted 3/29/2010 1:05 AM (GMT 0)
i am an ER doc.

the first time, i got sick about 10 days into a course of antibiotics...and, it got to the point where i had fever, chills and bloating. In to the ER i went...and, was treated as if it was c.diff, presumably, but then, after colonoscopy, they changed their minds.

I restarted the asacol just a week after stopping it because of diarrhea. But, it wasn't bloody. It didn't become bloody till 8 days later...all the while i was on the asacol. So, i am not sure that just continuing to take asacol will make it stop.

I had 2 separate months of steroids since july 09 and hate them...and, if just 3 weeks ago my guy was convinced i don't have UC, then I am even more leery. Because, if it's an infection, then steroids will make it worse.

I hope to speak with him tomorrow. Perhaps he will order stool studies. I just don't want to end up hospitalized like last time...it's my only frame of reference and it was awful.
Posted 3/29/2010 1:06 AM (GMT 0)
I bled for 8 weeks straight with no relief, only worsening, while being of 40 mg of prednisone at the same time. I was also bleeding what I considered to be a lot, just passing blood like liquid, turning the water in the toilet red. I was completely stressed out about it but my doctor is always calm. I guess that is a good thing. I ended up on a course of 3 remicade infusions which worked like a charm and got it under control so I could ween off the prednisone. I have never been hospitalized for my UC. This was a bit over a year ago. I don't think you should panic but it is best to get it under control. I would recommend the mesalamine enemas. I don't think you should worry about the hospital at this point. I would not go unless I was in excruciating pain or could not eat and was losing weight rapidly, something like that.
Posted 3/29/2010 1:22 AM (GMT 0)
I stopped my bleeding after 10 years by removing gluten from my diet. Before that Asacol, 6mp, Balsalazide never stopped my bleeding but didn't cause it either. Rowasa enema and Entocort stopped it temporarily but it always returned until the diet change. I've never been hospitalized for UC and I bled a LOT.
Posted 3/29/2010 1:23 AM (GMT 0)
Just curious, how long have you been on the Asacol? And what is your dosage?

I had a bleeding problem with Asacol but that is not to say my issue is anyway related to yours..
Posted 3/29/2010 1:24 AM (GMT 0)
I bled every single day for 3.5 years - some days worse than others - but months on end day in day out with going 15-25/day and often only passing blood and mucus and enough to change the toilet completely red along with accident after accident. I have recently had a total colectomy with loop ileostomy - take down is in a couple of weeks.

I was hospitalized during those 3.5 years only once - I refused to go in again as the first time I was in over 10 days and on IV steroids and was still bleeding so I signed myself out (I have children!) on Imuran - which slowed things down after a good few weeks a bit until it caused hepatitis.

Anyway - my point is - I didn't need hospitalized but I did need to check my blood levels alot and go into ER now and again to get rehydrated. I was very anemic, dangerously so in the end and my iron levels were very very low - but with lots of supplements, iron injections, ect I managed miserably (or at least I managed not to die!) until I chose to get my life back with surgery and I have!

For a while Asocol slowed my bleeding (not stopped) - but it didn't last long! The best for me at slowing it down was prednisone - but that is its own nightmare!

Good luck - I hope you don't need to get admitted.
Posted 3/29/2010 1:29 AM (GMT 0)
after the normal biopsies, but still having fuzzy orange soft stools, my gi doc thought the asacol might be causing my symptoms. So, that's why i stopped it. Stayed the same for about 5 days, and then was normal! it lasted 2.5 days...then i got cramps. That was a new experience for me...then watery diarrhea...also new. So, i restarted, thinking that maybe the biopsies were wrong (i know...i am a doctor, and i know they were normal). And, i got better quickly...went from 6 episodes of diarrhea last satruday to only 1 stool a day...until this saturday...then it crept up, and then came the blood. I actually had nearly normal stool just a few days ago. And, now, THIS!

I have a history of Lyme, so i do not want to ever have to do remicade. Steroids are bad enough.

every time i take a bite of anything (even chicken broth) or drink juice, i get cramps and have to go to the bathroom. So, if it continues like this, I will need an IV. that's what I am afraid of. I guess the blood isn't too bad. I won't become anemic at this rate of bleeding, but i am afraid of it getting worse.
Posted 3/29/2010 1:29 AM (GMT 0)
Hi Doc -
Sorry about the bleeding. It always does a head trip on me. The past few years I've done the bleeding thing twice a year, and sometimes it goes on for weeks before I decide it's really and truly a flare.... don't let it freak you.

I was about out of a flare several weeks ago, took that last step of getting off steroid enemas, and zam! soon thereafter I started bleeding again. I'm bummed.

How much blood are you seeing? I don't get too alarmed if it's just blood on the TP or on the stool; I get unhappier if the toilet water turns red.

I have been on 16 asacol a day - 1600 mg, 4 times a day, for about a decade, and then I use the rectals as needed. Because the 5 ASAs are poorly absorbed and to a large extent work topically, it's difficult to overdose on them, as my new GI explained to me several months ago. The mesalamine enemas, especially, are topical in nature. So, if you have some in your closet, that sounds like a good place to start.....(I'm imagining they were prescribed for you to take if you deemed necessary...)

For decades, when I have flared, I have gotten my flares to quiet down by using steroid enemas. They'll stop my bleeding, usually in a day or two. (I'm going to break down and go back to every day on those as of tonight.) What worked for me successfully this winter was to use those at night and a rowasa in the morning. I did the rowasa about every other day because that's what fit into my life.

Eating "lightly" also helps me when I'm bleeding. If I'm not "full" after a meal I'm less likely to feel the bathroom urge.... We had a big family meal and I felt SO overfull and sure enough, just made a trip to the bathroom that might not have happened otherwise. And I figure (don't know if this is true, it's just my feeling) that if the tissue is friable, the less "stuff" sliding through there and mechanically scraping it, the better.

So - soft foods, well-cooked veggies; applesauce and canned fruits, nut butters...I find I can't tolerate nuts or multi-grain breads when bleeding; what helps me is eating all those soft things we tend not to eat these days. But it's just temporary and then I can get back to what feels like more normal food.

I feel for you, on this roller coaster of UC/ non UC. Stay in touch!
Posted 3/29/2010 1:30 AM (GMT 0)
clicky, i have no idea how you survived that. you must be one heck of a strong person...
Posted 3/29/2010 1:36 AM (GMT 0)
wow, songlady...
i guess i am over sensitive here. It's basically diarrhea and blood. It doesn't turn the water red. It's not frank blood. But, even one fleck of blood freaks me out, because there shouldn't be any!

You are all pretty amazing for living with this.
Posted 3/29/2010 1:41 AM (GMT 0)
to the ladies...
i am already old to have a first child, but i still want to...
if this really is UC and i have to be on asacol forever, does that mean no kids for me (unless i use a surrogate)? We don't do clinical trials on pregnant ladies...companies don't want to be sued.
Have any of you taken the drugs through pregnancies and ended up ok with healthy kids?
thx
Posted 3/29/2010 1:48 AM (GMT 0)
Hi doc - not strong just stubborn and scared. I should have had the operation a long time ago! I am LOVING life now! Went on my first bike ride with the kids for a couple of years yesterday and a long fabulous hike today and even with the ileostomy - it was amazing!

I hope you get this under control soon :)
Posted 3/29/2010 1:53 AM (GMT 0)
Tons if people take UC meds during pregnancy and have healthy children. Don't stress about that. You will find that there are options when you're ready to make a decision about a family. Most doctors are very in tune with treating female patients of childbearing age. My doctor always tells me what's going on even though she knows I am not looking to start a family right now. I think Asacol is considered quite safe for use throughout pregnancy. Of course, don't take my word on that, I've never seriously thought about having children so I don't study these things but I have seen it mentioned here. Best thing to do is try to get to the bottom of your condition and heal up so you're ready to get pregnant when the time is right. I would get stool tests done, it can't hurt. Have you ever been treated with Flagyl?
Posted 3/29/2010 1:55 AM (GMT 0)
Clicky, I too was diagnosed with UC a few months after I quit smoking. It is so disheartening when you try to make a healthy choice and end of feeling worse. I quit smoking 2 years and 1 month ago. I was first diagnosed with UP when I tried to quit in 93.
Posted 3/29/2010 1:59 AM (GMT 0)
i was treated with flagyl the first time...when we thought it was c.diff. And, then, when they scoped me, even though i was getting better, they started mesalamine and then steroids. I was on everything all at once.

there's so much going on...it's hard not to think about it all the time.
Posted 3/29/2010 2:39 AM (GMT 0)
Hi DocGP,

I would try Lialda (despite the fact that I hate their pushy marketing) or Colazal before Asacol. When I started showing symptoms with my third flare, I toke Asacol, and within a week, I was bleeding badly. I know they are all mesalamines, but I remember reading that some others have had similar issues with Asacol. I don't know why. Maybe someone else does.

If I remember correctly, you are somewhat new to all this. So you might not have had enough time to find out what works for you and what doesn't.

Have you started a food journal? Are you taking probiotics? How about natural anti-inflammatories such as boswella and turmeric supplements? And how about fecal transplantation? If your colitis is antibiotic-related, fecal transplantation might get it balanced. It is worth a try.
Posted 3/29/2010 3:02 AM (GMT 0)
DocGP:

So sorry to hear about your situation.  Again let me stress I am no MD, I am a dentist and person who has a long history of UC and in dealing with various GI docs.  This is just my impression about what your saying and base on my personal experiences.  It sounds like Asacol is doing squat for you and maybe I would get another pathologist to read your path slides concerning the c-scope or see a different GI doc for a different opinion.  By the way how is your blood work?  Any elevated wbc?  ESR?  C=reactive protien?  What about your Hg level and Hct and platelets, etc...

I was working with one GI doc for several years, all the while he had me on Asacol which did nothing for my UC, infact over several years my UC got worse and my colonscopies also showed spreading colitis, especailly in severity of inflammation.  That GI doc said everything was great and stay on the Asacol.  I shed a lot of blood in those years and eventually accepted it as normal.  My Hg eventually dropped to around 8.

I then went to Yale and had one of the best GI docs do a colonscopy and said nothing.  The GI doc said stay on the Asacol and the doc even questioned whether I had colits at all.  Similar to what you said.  The doc was surprised when the path said chronic and moderate inflammation however.  That said the doc said stay the course on the Asacol.  I went to another GI doc who reviewed my biopsies shortly after Yale and said it's obvious my colon is getting worse and worse and that Asacol is either doing nothing for me or is fact hurting me.  He told me to get off of it and start Imuran.  My wbc at the time was in the 20-30 with a large % being eosinophils.  When I asked him about that he said my UC has nothing to do with the high level of eos.

I then went to Harvard and found a clinical director of eosinophilic disorders (allergist/immunologist) and also a GI who only treats UC/Chron's.  They are both at Harvard.  They immediately said my UC was getting worse and to get off of the Asacol and start Imuran.  They went on to say that the high wbc and specifically the eos were definitely from the UC.  They started me on Imuran and I am doing much better with almost a perfect colon, clinical remission and histologically as well.

When I went back to the GI doc who said the high eos count was not due to the UC he told me "of course the eosinophils are due to UC."  He said this because he holds a high respect for the Harvard based work up they did on me.  They were extensive. 

The point I am trying to make is that you definitely need to stop, re-examine what you actually have.  I would have the path slides re-read by a new pathologist and see a different GI doc.  It's well known that Asacol can hurt more than help.  Sorry for the longwinded story but I thought it might be relevant to you.  If I wasn't so persistent  I would have taken the opinion of the eariler doc and would be taking a drug for leukemia or just kept taking Asacol. 

Good luck to you.  I hope this helps.

MyUCsmile

Posted 3/29/2010 3:25 AM (GMT 0)
Hi again.

So, about the kids thing. Being pregnant with uc is very possible. In fact, I am pregnant right now! 14 weeks and counting. I went through my first pregnancy with no difficulty too. I have used both asa meds and steroids during pregnancy. I have also successfully breastfed my first babe for 14 months now while taking my meds. Others have even taken remicade while pregnant with no ill effects on the child.

about this apparent flare you are in. Does seem like question #1 is what have you got right? - c. diff or uc. I too had my first flare after a round of broad spectrum antibiotics for a gum infection. So my docs thought it may be c.diff related. It was not c diff it was uc. Turns out that antibiotics can trigger uc flares, just one of the great mysteries about this disease. So yeah, maybe your doc should take another stool sample. Has your doc already taken one? You say you had a colonoscopy but it wasnt clear that they actually did test for c diff during your first flare.

If you do in fact have UC, you say you restarted the asacol a week after you stopped because you experienced diarrhea. Sometimes when you reach a certain level of inflammation the asacol alone can no longer control or reduce that inflammation - ie. perhaps you were off long enough to obtain a level of inflammation that the asacol could not control (this had been my experience at least). However, after having done some experimentation of my own over the years, I have found that when I am flaring and the asacol seems to be doing nothing, going off it makes that flare worse. So I have concluded that the asacol is in fact doing something, it just needs some extra help to put me back into remission.

If you find out you have uc there are options before you have to go the steroid route and particularly before you have to go the remicade route. I am with you about remicade....it scares the crap out of me (no pun intended). You can add enemas to the mix. And then you can add steroid (hydrocortisone) enemas before you go systemic - they have far fewer side effects.
Posted 3/29/2010 10:10 PM (GMT 0)
hi, all...thanks for the replies.
I have been seriously considering fecal transplant, as I just think it HAS to be related to altered flora. For those of you who are interested, there is a nice review article about the role of pathogens in IBD in the january journal of gastroenterology.

Gastroenterol (2010) 45:266–276 DOI 10.1007/s00535-009-0191-y
The role of infection in the aetiology of inflammatory bowel disease
Richard Hansen • John M. Thomson • Emad M. El-Omar • Georgina L. Hold

I have seen an entire group of GI docs (about 8) during my 14 days in the hospital, one who did my first scope and another who did my last scope. I am going to Mayo, so they will be more eyes on my slides and me.

My labs have been normal, except for when i was in the hospital...high-ish wbc (14...but usally I am low around 3-4), high esr, but neg asca and p-anca.

So, today, no BMs at all...noisy gut now after i ate a pretzel...but, after 7 bloody BMs yesterday, I will take a noisy gut for now. I guess we'll see what comes out the next time...ah, the things I have to be curious about these days...
✚ New Topic ✚ Reply
12