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10-31-2010, 06:03 PM   #1
artemis_512
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When will the bleeding stop?

Hello everyone, this is my story... In 2006 I noticed mucous and stomach upset happening rather frequently with my BM's and soon started bleeding (which I didn't get checked for about six months because it was embarrassing.. stupid, I know). My first colonoscopy (Nov 2006) was about a week after I had been treated for strep throat with Prednisone, and since I had stopped bleeding, I was like, Do I still have to have this procedure? And they said yes, to establish a baseline... That colonoscopy showed a little inflammation and ulceration, nothing serious.

In March 2008 I went to training for a few job five hours from home for a 2 week and 3 week session and my stomach issues started acting up again. It was awful - pain, bloating, gas, distention, diarrhea, bleeding, urgency, straining, and many many trips to the bathroom which often didn't result in anything but a lot of discomfort and dripping blood. All this as I was in classes with like 30 people and my noisy belly, to learn essentials of our work.

Colonoscopy #2 was done at this time, which showed a solitary superficial ileal ulcer, proctitis (moderate diffuse inflammation), and moderate anal fissure. Small bowel endoscopy showed multiple scattered shallow ulcerations in the jejunum and ileum and multiple pinpoint non-bleeding arteriovenous malformations. Doctor diagnosed with mild Crohn's disease, but acknowledged that most of my symptoms looked like ulcerative colitis. So that time, I was prescribed Entocort, Canasa suppositories, and Analpram for anal fissure. Everything cleared up and I was put on Pentasa two pills three times daily for maintenance and taken off the rest.

Followup colonoscopy #3 (November 2008) showed proctitis, and Canasa prescribed again. Symptoms cleared. April 2010 (had moved to new city with new doctor), did about $1000 worth of bloodwork (sedimentation rate, C-reactive protein, celiac test, auto blood CT with auto diff, comprehensive metabolic panel), and all results looked good.

June 2010 I started bleeding with mucous again. GI doc told me to start Canasa again and Analpram, but I hated that stuff and honestly hoped it wouldn't work so I could get the Entocort, which I "knew" would work. Finally I got my way and went on the Entocort, and it cleared up, at first. As I was tapering off the Entocort, I began bleeding again. Back up to 3 pills/day. Moved to new city, and new GI doctor (beginning of Oct 2010) performed rectal exam which showed an anal fissure. Prescribed Nifedipine cream. CBC and C-reactive protein were done again and were normal.

Colonoscopy #4 (October 2010) showed active acute proctitis and small healing anal fissure. Doctor prescribed cortenemas nightly for three weeks, which I am still on, as well as nifedipine in morning. Still on Pentasa, and tapering off Entocort over the next month or so. Bleeding is now increasing, as well as number of BM's daily and discomfort, trapped air, urgency. Oddly, most of them are just a small amount of diarrhea with some dripping blood. I don't feel like the enemas are working (have used about 10 nights? package says it should work in 3-5 days). Oddly, I am starting to think that I should try Canasa again. Maybe I didn't give it enough of a chance?

Interesting thing about Entocort which I just wrote about in another post - it makes me crazy when I taper off of it! I started seeing a counselor this week and she prescribed Lamictal to stabilize my moods. Now I am taking SO MANY medications: Pentasa two pills three times a day, Entocort 6mg/day, birth control, Lamictal, Buspar twice daily, fish oil three times daily, nifedipine cream morning, and cortenema nightly.

Feel free to contact me, I've been reading this forum for a while but this is the first day I've posted. Does anyone have any suggestions or ideas for me? Should I ask my doc if I can try the Canasa again? Has anyone else had this hard a time stopping bleeding? Should I hope for prednisone and just get the bleeding stopped? It seems that many think it's a nasty drug. How long can you bleed without causing serious injury and increasing risk of cancer? How much can you bleed and still be ok?

Last edited by artemis_512; 10-31-2010 at 07:03 PM.
10-31-2010, 08:48 PM   #2
Dexky
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What dosage of pred were you on for the strep? If it were me, and I don't feel qualified to say this since I'm a parent of and not a sufferer myself, I'd ask for the pred to stop the bleeding. I've never heard of Canasa. Does it go by other names as well? Whatever it is, it seems to work for you. Can it be taken long term as a maintenance med?

Good luck and welcome Artemis!! There'll be others to greet you with much more experience obviously. Stick around!!
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11-01-2010, 03:59 AM   #3
DustyKat
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Hi artemis and

I'm glad you found your way here. Sorry I can't answer you questions about bleeding but as Dexky said, others will be along that have experience with that. I thought Canasa was a brand name of Mesalamine which is also the same as Pentasa, Rowasa, Asacol and Lialda. Either way the treatment doesn't sound as if it is working for you so I would be onto the GI and telling them just that. Please stick around and keep us posted on how you are going. Good luck and welcome aboard!

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11-01-2010, 09:37 AM   #4
afman
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cansasa worked well for me for my bleeding hemmies but not sure if you got hemmeis along with your fisuler. i also used rowasa eneams which worked well to for the urgency and bleeding.
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11-01-2010, 10:08 AM   #5
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Canasa is a mesalamine suppository. I use Canasa everyday and it doesn't help my hemmies or my bleeding. It does help me with urgency and a little bit of pain relief, though.
11-01-2010, 11:59 AM   #6
Rebecca85
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Am I right in thinking proctitis is inflammation in thr rectum? In which case Entocort won't work, that targets the ileum mainly, so Pred would be your best bet. Yes it has bad side effects, and you will especially need to be wary of mood disorders with it, given your history with Entocort, but generally speaking it gets the job done!
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11-01-2010, 02:11 PM   #7
Astra
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Hi Artemis
and welcome

I have to agree, I think the Pred would work better than the Entocort, just from my own personal experience.
My friend has UC and has just been approved Remicade, have they mentioned one of the biologics? Her bleeding stopped with Pred too. sorry, I have no experience of bleeding.
Let us know how you're getting on, glad you found us, lots of friends here for you.
lotsa luv
Joan xxx
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11-01-2010, 08:04 PM   #8
artemis_512
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Dexky: dunno what dosage of Prednisone I was on... would have to call my college and ask. Good idea.

I have emailed my GI doc this evening and asked him about the prednisone, canasa, etc...... (copying and pasting)

"Dr. ____, I really need some advice. The past few days, I was having urgency and BM's frequently producing a small amount of diarrhea and a good bit more blood than usual. Starting this afternoon from 4-6 pm, I was bleeding about the same amount and had several more solid (but skinny) BM's where it felt like my insides were being ripped out. It hurt so bad it made me want to throw up, leaving me with chills, a sore lower left belly and my tail end was so painful it hurt to sit. I took 2 Pepto Bismol pills, then went this evening to give blood with my friends, and my hemoglobin was 13.0, BP was 90/40 on first measure and 100/58 on second measure, pulse normal, temperature 98.9F. They wouldn't let me give blood though because I'd had a hepatitis B vaccine within the last 21 days... which was fine with me because I didn't feel all that great. Had another gut-wrenching BM while there, and one last one when I got back home. At this point I was desperate and was searching through my medicine box, trying to think of something that could help. I found the Analpram and thought that the anaesthetic might help my bum, but didn't take it because I wanted to ask first. I also took some Tramadol and a long hot bath, and now I feel good as new. Belly's still a little sore, but I'm so much better. I wanted to ask if perhaps I should give Canasa another chance? I don't think the enemas are helping. In the morning I can tell there's less blood on my first BM, but after that it's back to normal, and my discomfort and frequency make me feel like it's all getting worse. Or do you think that I should consider Prednisone just to get the bleeding to stop? Are there other meds that you had in mind to try before Prednisone since so many people think it's a nightmare drug? I remember that made me stop bleeding within a week when I had strep throat back in 2006. Please let me know what your plans are for me, I feel worried that I'm going to get worse, and I don't want to go through the pain that I had this evening ever again.

Thank you,
"Artemis"

PS - Anal fissure is better, I think!"

[I hope that he can help me... I know many others have it so much worse than I do more of the time, so I have to remember to be thankful for small blessings and periods of respite... Thank you all for your replies!]
11-01-2010, 08:17 PM   #9
artemis_512
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Joan, no doctor has mentioned biologics yet. In fact, after starting my new job a few months ago, I learned that my coworker (the first fellow sufferer I've met in about 4 years of symptoms) also has Crohn's disease. He's on Remicade and has maintained remission for almost ten years. I would be willing to try it... but only as a last resort since Entocort has left me feeling like I'm coming down with something every week or so. I imagine an immune system suppressant would do even worse things to me!

I just can't wait to get this under control. It makes me feel like I'm dying every time I use the bathroom and see blood dripping into the bowl... Does anyone else feel like this? It doesn't even have to hurt that much, it's just the psychological aspect of seeing myself bleeding for so long that makes me feel anxious.
11-01-2010, 08:23 PM   #10
Dexky
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Let us know his reply Artemis!! Good luck!!
11-02-2010, 03:19 PM   #11
Astra
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Hiya Artemis

Hope your doc listens and replies!
Maybe you've read some of my posts about Entocort, I was on Pred for nearly 6 months then went on Entocort, it made me really ill, symptoms came back, I felt so confused, moody and miserable, I felt foggy and disorientated etc.
I went back on Pred in August and the effect was immediate! I finish this course on Friday and I feel really well, I think I'm in remission, Yay!
I really like Pred! It has some side effects like weight gain but it's a small price to pay to be pain free! I felt euphoric, happy and well on it.
Hope your doc lets you try it.
good luck
xxx
11-03-2010, 01:29 AM   #12
artemis_512
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Dr replied! Said that considering what happened he would like to switch to prednisone, generally use a tapering dose over 2-3 months. if it works, he may consider biologics (which scares me because just on the Entocort I feel like I'm coming down with something every week, low-grade fever and everything!)

he wants to do serology to differentiate UC from Crohn's. (but my small bowel endoscopy in 2008 said that I had ulcerations in my ileum and jejunum - doesn't that automatically mean Crohn's since UC is only in the large intestine?)

calling tomorrow AM for appt! wish me luck.
11-03-2010, 11:10 AM   #13
Dexky
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Thanks Artemis!! My son's endoscopy showed healing scars in his stomach and the doc still told us he thought it was UC because the colonoscopy showed most of the present inflammation was in the colon. I don't know why they don't just say indeterminate until they know for sure!!
11-04-2010, 09:46 PM   #14
artemis_512
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Dexky, I know what you mean. I went to see my doc yesterday and told him of my small bowel concerns, and he conceded my point but that the ulcerations could be caused by use of NSAIDS like Ibuprofen, etc... so the serology will just be for research purposes, I suppose. I don't care which disease it is as long as I stop bleeding.

2nd day on Prednisone, noticing some poofy-face stuff going on, haven't stopped bleeding yet. wonder how long till that happens?
11-05-2010, 12:57 AM   #15
Entchen
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Hey Artemis: Prednisone can take a few or even several days to really kick in for many people, but here's hoping that you stop seeing blood soon!
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11-05-2010, 11:08 AM   #16
artemis_512
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Thanks Kelly!
11-18-2010, 04:03 AM   #17
artemis_512
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Well, I have been on the prednisone two weeks, and my upset stomach is more and more under control (thank god!). I'm still bleeding, which makes me wonder if it's another anal fissure (or the same one), or ... I don't know what. Isn't prednisone supposed to fix it all? Other than that, prednisone is pretty amazing... I eat too much, and can't sleep tonight, but I have so much energy all the rest of the time, I've actually started working out at 5:30 every morning and I've been getting a LOT done. And I generally feel really happy! So I'm grateful for my blessings, I've heard so many people say what a nightmare drug it is.

I just received a letter today regarding the bloodwork I had done to determine if I have UC or Crohn's, and guess what - the serology said that I didn't have either. wtf?
11-18-2010, 05:29 AM   #18
Dexky
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Artemis, do you actually have blood dripping during bowel movements? Do you also bleed in your underpants? When do you see your GI next? It's time someone figures this bleeding out!!
11-18-2010, 07:13 AM   #19
artemis_512
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I do have blood dripping when I use the bathroom, some gas. Sometimes all it is is gas and blood, but fortunately the urgency is not like it used to be, and I'm having more formed BM's. I do not bleed in my underpants though. I see the GI Dec. 7 for a non-drugged flexible sigmoidoscopy. I really hope he does figure it out. The serology is causing me to doubt the profession, lol...
11-18-2010, 05:05 PM   #20
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Hiya artemis

Glad you're feeling much better on Pred and happy too! If you can't sleep, take your Pred very early in the morning about 6am is best.
hope you get some answers soon, and good luck with your appt, remember blood work can come back normal, a few of us have had that in the past.
xxx
11-18-2010, 09:07 PM   #21
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Is there a gush of blood when you first start to go? It just seems to me that dripping blood would indicate a more steady flow as opposed to an ulcer like ooze. And it seems like it would have to be expelled or stored if it was ongoing. I don't even know what that could indicate. It just seems odd to me. EJ never "dripped" blood but maybe his bleeding was higher in the intestinal tract???
11-20-2010, 09:28 AM   #22
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I used to be so bad I often had a drips of blood. Please see your doctor sooner rather than later.

IMO
I would think your ulcers inside are quite bad.

I can guarantee if they are and you are losing so much blood, your strength will ebb away slowly until you will be unable to stand up, you will need blood and probably a whole load of other drugs to get it under control.

I have just been through all this, I was in hospital for three weeks, the problem I have is, I was still in need of a little blood when they sent me home from hospital and on my first visit to see the doctor this week, I find I am still obviously in need and she wants wants me back in on Monday for a week or more, I am miffed.

I have had loads of drugs and they have done the job on the Collitis however I now have had to stop taking the tablets as they are making me so tired and feeling sick every day that my lifeīs not worth living, the Doc says she thinks itīs the anaemia and not the tablets doing it, funny thing is I havenīt had any blood but feel a little better after stopping the tablets.

So back in hospital for me next week, going to try new tabs, how will I know if they are good since I seem ok inside now?

Is there a drug to stop all this tiredness and nausia?

Hope you get in and get treatment all the best.
12-02-2010, 04:11 AM   #23
artemis_512
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Joan, thanks for the encouraging words. Since my last post, I gave blood (which means my iron was plenty high enough to give, yay), and the mania from the prednisone isn't as strong as it used to be. Obviously it's 4 am, and I still haven't really gone to bed (dozed once or twice). Stomach is doing MUCH better as far as urgency, but am still bleeding, same amount as before. Not a fan of the bleeding. And next week is the nondrugged flexible sigmoidoscopy... I'm sure they'll see it's bloody...

Lifesover, I'm sorry you're going through such a tough time. How did it go at the doctor? Do let us know how you are doing.
12-02-2010, 05:22 AM   #24
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Hi,

Went in hospital and received 2 bottles of blood new tablets.

I have a severe headache problem with one of the tablets but I stop taking it then start by cutting it in half (Imuran) I am now sometimes able to take a full tablet with no problems.

The problem is when you are taking about 30 tablets a day it's difficult to know which one is making you ill.

I think It was Salazaprin (9 a day) that was killing me and Making me sleep and have head aches all day and feel sick, I am on Pentassa now, I am feeling on top of the world at the moment thank you. It's a matter of doing my own tests with the medication, I just hope I can keep it under control, I am back for check up in January.

So..... it looks like there may just be life after Colitus??

Last edited by lifesover; 12-02-2010 at 05:42 AM.
12-24-2010, 01:07 AM   #25
artemis_512
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Good news! Haven't bled in about a week!

Flex Sig was delayed... stayed up worrying all night... showed up at dr's office at 9:45 AM, waited till 10:30 when they called me up and said I was supposed to be there 30 minutes before my 10 AM appt. But I had written in my planner, standing in front of the receptionist at the last visit, that I was to show up 15 mins before my 10 AM appt. Additionally, apparently there was prep that they had not told me about. The receptionist I just mentioned who told me the wrong time, also told me that all I had to do to prep was eat no food after midnight. That would have been quite the surprise for the dr! So... they said I could wait up to a few more hours for an appt, or reschedule. I chose to reschedule. Upon my request, the dr says I can have sedation for the Flex Sig, and they say I should do a tap water enema to prep (oddly when the lady called me to set the rescheduled date, she said I'd have to use magnesium citrate to prep, but in the mailed materials all it said was tap water enema). I'm starting to think their office doesn't have their shit straight... I plan to also use a laxative of some kind the day before, besides just the tap water enema. Anyone have experience with this enema thing? Only one I've had was the cort-enema... I guess I can just get the water enema thing at the pharmacy?
12-24-2010, 09:44 AM   #26
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Hi Artemis,

I also have disease at the very end (only there as far as I know). I'm using Rowasa enemas (same medicine as Asacol & Pentasa), and I put budesonide powder (which is the ingredient in Entocort) in the Rowasa before using it. I get the budesonide powder compounded by my pharmacy. My doctor can specify any dosage. This combination has helped me get into complete (well, almost) remission. I was on 5 mg budesonide/night until two nights ago, now I'm all the way down to 4.75 mg (I've found I have to taper very slowly).

But this gets the budesonide (which is kind of like Predisone Lite) right to the area that needs it.

I have a feeling that if I don't shake the enema RIGHT before using it, the powder sinks to the bottom of the bottle. But that's just a suspicion.

Hope this helps.

Best
Sandy

Dx 1963
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12-25-2010, 12:03 AM   #27
aliciars
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WOW. I feel like I could be reading about myself in regards to the symptoms artemis. I haven't even heard of a lot of these meds or enemas. I will definately ask doc about them Tues when I see him.
So much to try and learn and understand. Are you still on prednisone?? I'm finally tapering off of it - per MY orders. I refuse to take it any more, as I'm still bleeding while on it and I feel like a crazy person. I have found taking 2mg melatonin helps me sleep. I also have ambien to help me sleep if I get to bed early enough to take it. I'm also taking xanax during the day so I'm not the meanest mom in Michigan! One more week and I'm done with it.
Crossing my fingers I don't start pouring blood. Last time I tried to get off of it, within 8 hours of my missed dose, I was bleeding crazy.
Anyway....thanks for a lot of info to try and process.
12-25-2010, 12:32 AM   #28
Swirl
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I didnt read everything but it was enough. Your condition is similar to mine. i have left sided colitis. Doctors will give u steriods to stop the bleeding but when u come off it so does it. Its Expected of you to bleed. i take probiotics which clears up everything but once it stops working i switch to a new one which works.
12-25-2010, 12:38 AM   #29
Swirl
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Oh and prednisone and some enema like prednisone gave me bad side effects quick. i refuse to take those types of drugs. and a good probiotic will usually work the same day u take it unless u have really bad colitis maybe even chrons which will take longer to work. i eat whatever i want as long as it isnt junk or fried food.
07-12-2015, 04:41 PM   #30
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I realize this is 4.5 years later, but hoping for some advice. Had crohns for 11 years--was great on remicade until I developed antibodies this last winter. Bleeding and common symptoms--blood work and colonoscopy in February showed inflammation/ulceration in colon. Went on pred and some others while we tried to get a new drug approved. Pred helped with some symptoms, but not bleeding. Took hurmira for 6-8 weeks but that didn't help bleeding. Now trying cimzia and that's not helping either. Bleeding is worse than ever & I often become very weak, dropped a few lbs quickly and I'm fairy thin now. Had blood work fri. I'm wondering if the inflammation of crohns is not the true cause of the severe bleeding? Yes, every bathroom stop involves some nasty output including blood. I really want it to stop! Advice? FOr crohns I also take Delzicol. I'm on some other meds for other problems as a result of Crohns. It's now July & I began bleeding in January...
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