Never stop bleeding...

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kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/10/2009 12:01 PM (GMT -6)   

Seems from all I read that this is the hardest area to heal.  I have also used Canasa (allergic), hydrocortisone enemas (made it worse), Rowasa, Proctofoam and colazal (which is supposed to work down further).  Who knows what will really stop the pain and put us in remission?  Prednisone worked for a month - now at 20 mg. for two weeks and bleeding and pain returning. 

ElaineNY

,

mudua
Regular Member


Date Joined Apr 2007
Total Posts : 459
   Posted 3/22/2009 4:59 PM (GMT -6)   
Vitamin e enema stops bleeding within a day

kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/22/2009 5:13 PM (GMT -6)   

Prednisone stopped it too.  I just don't find any medical evidence of the vitamin E enemas working.  A mute point as I cannot administer the enemas and will not ask my husband so stick with what I have for now.  I am not "bleeding" - just find some blood mixed with mucous occasionally now.

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008  Cannot tolerate mesalamines, Canasa, etc. Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred.
Started on prednisone Feb.7, 2009 - tapering to 20 mg. for two more weeks and then down to 15 mg.etc.  Added 6-MP Feb. 28.
Added Anusol suppositories - March 16 - see doc in 3 months. 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


Southernbelle
Regular Member


Date Joined Feb 2009
Total Posts : 33
   Posted 3/22/2009 6:21 PM (GMT -6)   
Elaine.. I understand your not being able to do this but you may want to look over this FYI.It was just published in Oct.

http://www.wjgnet.com1007-9327/14/5990.asp.

(I've got to learn how to post this as a link!!)
58/F/Hairdresser
Dx leftsided UC July 08.Can't handle any masalamine or 6-MP
Been on steroids twice. Do well on those.
Suppliments: Aloe MPS, probiotics, enzymes, C and E, Curcumin,CoQ10,Grapeseed extract, Selenium, Cal.-Mag w/D, Multi., Vit.E enemas, Three-lac
Meds: mild blood pressure. Prilosec, Wellbutrin, steroid suppositories
 
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/22/2009 6:32 PM (GMT -6)   

southernbelle - thanks but I could not find the article.  I did get to the website which I am not familiar with.  Anyway, if what I am doing does not work in a timely manner - I would only try it if my doctor insisted and agreed.  I cannot do the enemas alone - physically and will not ask my husband to help unless matter of life and death - he is too sick himself!

Thanks anyway - so happy it works for you.  I am sure I can do just fine!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008  Cannot tolerate mesalamines, Canasa, etc. Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred.
Started on prednisone Feb.7, 2009 - tapering to 20 mg. for two more weeks and then down to 15 mg.etc.  Added 6-MP Feb. 28.
Added Anusol suppositories - March 16 - see doc in 3 months. 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


Joylu
Regular Member


Date Joined Jan 2008
Total Posts : 362
   Posted 3/22/2009 6:34 PM (GMT -6)   
I was wondering when you all speak of passing blood, how much blood are you talking? When I go to the bathroom, the toilet bowl is pretty heavy with blood. When I pass gas in the toilet, it splatters all over the inside.
Is this much bleeding happening to anyone else?

kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/22/2009 6:36 PM (GMT -6)   
Only one day I had really red blood - loose from stool and that was day after my colonoscopy but went away and now only find it mixed with mucous and outside of stool occasionally.  ElaineNY

 
Senior - New diagnosed with proctosigmoiditis - 6/2008  Cannot tolerate mesalamines, Canasa, etc. Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred.
Started on prednisone Feb.7, 2009 - tapering to 20 mg. for two more weeks and then down to 15 mg.etc.  Added 6-MP Feb. 28.
Added Anusol suppositories - March 16 - see doc in 3 months. 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


Judy2
Forum Moderator


Date Joined Mar 2003
Total Posts : 9298
   Posted 3/23/2009 10:44 AM (GMT -6)   
Joylu, I did the same when in flare. Remember that a small amount of blood in the toilet can look like a lot, so we really aren't hemorrhaging when we do this. Some people bleed more than others, and the more inflamed and ulcerated your colon is, the more blood there will be. You may want to be sure you're taking an iron supplement to prevent anemia.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


BigPanda
Regular Member


Date Joined Mar 2009
Total Posts : 54
   Posted 3/23/2009 10:47 AM (GMT -6)   
Bleeding is also my problem. Almost half a year.
Blood stops and easily comes back again...
I am on Canasa now.
Whithout Canasa, blood everytime...

Joylu
Regular Member


Date Joined Jan 2008
Total Posts : 362
   Posted 3/23/2009 11:30 AM (GMT -6)   
Thanks Judy. I will look into an iron suppliment.

healing herbs
New Member


Date Joined Mar 2009
Total Posts : 1
   Posted 3/24/2009 12:42 PM (GMT -6)   
This is what has helped me:
Calcium stops bleeding with magnesium
Black walnut hulls stops bleeding and inflamation
Goldenseal drying and antibiotic alternate after black walnut
Vitamin K stops bleeding
Vitamin U tablet from cabbage
Slippery Elm bark
DGL licorice root
Marshmallow root
Alkaline Diet

1) Bleeding is a sign of a mjor lack of calcium and vitmain K. Calcium is a muscle toner so it stops bleeding. Calcium needs to be taken with a smaller dose of magnesium (muscle relaxer) so that the two compliment each other so calcium does not build up in heart tissue or keidneys. Calcium is found also not only in milk, but soy milk, carrots carrot juice, cabbage. See www.Food-Info.com and www.unhinderedliving.com for info. on CALCIUM
2)Black Walnut hulls found at WEGMANS PHARMACY or mothernature.com stops bleeding and reduce inflamation in intestines and colon, is also an anti biotic and a very mild laxative, is safe for children and animals too. If Wegmans is out they can order it.
3)Goldenseal is an anti bioitc, dryng (anti acid) and anti inflamatory for ulcers, intestines and colon. Can be bought at WEGMANS or mothernature.com
3) Vitamin K can be found at GNC
4)If cabbage agrees with you drink cabbage juice, or buy the vitamin U tablets or powder.
5) See www.GreatTasteNoPain.com for alkaline Diet get the free recipes and at least the newsletter if you can't afford the cook book.
6)Slippery Elm bark, Marshmallow root can be bought at Wegmans too. It coats the stomach and intestines so acid cannot burn. But these are starches and cannot be taken at the sametime when eating meat. IF you buy the licorice root make sure it is the DGL(Deglycerized licorice) as if it is NOT DGL it can elevate blood pressure. Hope this helps you too- God Bless-

kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/24/2009 1:03 PM (GMT -6)   

They sound wonderful!  My IBS would not like most of them.  Anyway, they stop bleeding but do they heal - there is an ulcer in there - deep and bleeding - just wondering. 

I hope others will check carefully into all these although most should not really hurt if they don't help!  I guess I will stick with doctor's choices for now.  Always happy to hear what has helped others!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008  Cannot tolerate mesalamines, Canasa, etc. Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred.
Started on prednisone Feb.7, 2009 - tapering to 20 mg. for two more weeks and then down to 15 mg.etc.  Added 6-MP Feb. 28.
Added Anusol suppositories - March 16 - see doc in 3 months. 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


Zippy123
Veteran Member


Date Joined Feb 2009
Total Posts : 735
   Posted 3/24/2009 6:43 PM (GMT -6)   
Yes I am having a hard time getting the bleeding to stop completely too. Might stop for a day or so, then starts up again. With me I get blood at the end of my movement, pretty much always. Stools are usually pretty well formed for the most part though.
It is frustrating to say the least. Seem so close to remission, but can't quite seem to cross the line and stay there.

AnxiousMom
Regular Member


Date Joined Nov 2006
Total Posts : 30
   Posted 3/24/2009 7:02 PM (GMT -6)   

Bleeding is a prominent sign of my son's ongoing flare. He has been flaring for 3.5 yrs with the occassional time of no bleeding. The last and longest time by far was 5 months only to start bleeding about a month ago. We have tried it all!!! Even high doses of steroids did not stop it-it's like his colon has a mind of its own.

Right now we have upped his RF+ and Isatis cooling but the bleeding is still there...we'll see.

 

~Sally

mom to 17 yo with UC

RF+, Isatis cooling, Krill oil and a variety of vitamins

 


Conansmom
New Member


Date Joined Jan 2011
Total Posts : 6
   Posted 1/25/2011 8:50 AM (GMT -6)   
I'm the wife of a UC sufferer. He had it in his 20s and now it's flared up again in his 50s. Please don't any of you take this the wrong way but in a way it's comforting to know that he's not the only one in this situation. This flare-up has been going on since October 2010, probably brought on by the stress of me having a serious medical issue at the time. In a nutshell, he's bleeding every time he goes to the bathroom, his GI has prescribed various combinations of Lialda, HC enemas, steroid enemas, probiotics, you name it. Right now he's taking two Asacol three times a day, and a hydrocortisone enema before bed. The cramping and pain has got better, but there's still the blood and mucus. I see from other posts that Prednisone appears to stop the bleeding for the majority of you. And it worked for him when he had the earlier flare-up. BUT HIS DOC IS ADAMANT HE DOESN'T WANT TO PRESCRIBE IT! I don't get it! The other thing I wanted to ask other posters, is have you changed your diet? We usually eat fairly healthy - whole grains, lots of fruits, vegetables and salads. But those things go right through him, give him gas and don't even get fully digested! so now he's eating white bread, white rice, no vegetables or fruit (except for a small glass of V8 each day.) He takes vitamins and supplements but does anyone have any tips for introducing the healthy stuff back into his diet? Sorry this was so long, I'm new to this!

Post Edited (Conansmom) : 1/25/2011 7:45:29 AM (GMT-7)


Michelejc
Forum Moderator


Date Joined Jan 2011
Total Posts : 1199
   Posted 1/25/2011 9:04 AM (GMT -6)   
Conansmom: With regard to diet, I think foods effect people differently. Start keeping a food diary to keep track of the foods you eat and which ones bother you and which ones don't.

I said this in another thread, this disease is like pot luck.
52, female - diagnosed with ulcerated proctisis/mild colitis
Canasa - one to two times a week - 1,000 mg
Sulfasalazine - 500 mg - waiting on doctor
Centrum - multi vitamin
Zocor - 40 mg
Acidophilus
Boniva - once a month
Calcium with Vitamin D
Fish Oil - 1000 mg - once a day
Vitamin K - one a day; 100 mg
Herbs -
Horsetail, Stinging Nettle, Boswellia, RedYeastRice

Dsm4life
Regular Member


Date Joined Jul 2010
Total Posts : 445
   Posted 1/25/2011 10:59 AM (GMT -6)   
I bled for almost a year being on canasa only. I changed GI's and the first thing the GI did was put me on nightly enemas. Within days the blood was gone.

IamCurious
Veteran Member


Date Joined Jan 2010
Total Posts : 2176
   Posted 1/25/2011 12:55 PM (GMT -6)   
Cut out the whole grains and white bread. You should know in a few days if he is gluten intolerant. While you are at it avoid milk to see if casein or lactose intolerant.

You don't want pred unless absolutely necessary.
Male/59 DX ulcerative colitis Feb08, possible Crohn's colitis DX Mar10.
No Meds, allergic to Mesalamine. Remission since Mar10. Food journal instead of SCD. Psyllium seed + VSL3 especially helpful.

Boswellia, E. Coli Nissle (Mutaflor), turmeric, fish oil, S. Boulardii, OLE, resveratrol, multivitamin, extra D3, K2, C, high gamma E, magnesium, phos choline, glutamine. Lots of vegetables & fruit (but no plums), no soda, no HFCS, no trans fat, no shellfish, tea instead of coffee, watch gluten, few processed foods, no carrageenan.
Nature created all of the locks, therefore Nature has all of the keys

Post Edited (BabeintheWoods) : 1/25/2011 10:59:01 AM (GMT-7)


jray1971
Regular Member


Date Joined Jun 2011
Total Posts : 34
   Posted 7/15/2011 3:58 PM (GMT -6)   
Is anyone still out there on this thread?  I was diagnosed Dec 2009.  Merry Hanukkah to me.  Severe UC thoughout every quadrant.  Now I've been bleeding since well before Memorial day this year and almost contstatntly before that.  Preds and cort enema didnt stop the bleeding this time at all and I dont think the Asacol has done much either.  I am now taking a whole bevy of supplements to try and figure out how to find my way to some relief.  I am also doing a wheat and gluten free diet to see if that helps.  Digestive enzymes, butyrate, glutaloemine, VSL3 Probiotic, vit d, vit a, Lauricidin, cal-mag, potassium calcium, muit-vita, IV therapy...still bleeding. Drips out of me everytime I take a seat on the throne. cry
 
Any suggestions?

InSoFla
Veteran Member


Date Joined Jan 2011
Total Posts : 4679
   Posted 7/15/2011 6:23 PM (GMT -6)   
 
How long have you been gluten and wheat free?
Are you also dairy free too? Dairy is a big offender.
 
Sounds like you're on all the right supplements. What kind of IV therapy are you on?
How much L-Glutamine powder are you on? IMO, you should be on at least 15 grams a day.
 
I have 2 suggestions:
1) What do you know about food mis-combining? That can often create havoc. Here's a good explanation of it:
 
2) Have you given any thought to LDN - low dose naltrexone?
Here's the Penn State research done by Dr. Jill Smith with LDN and Crohns Patients.
http://www.ncbi.nlm.nih.gov/pubmed/21380937

I can give you links to resources about LDN, if you'd like.

I hope you stop bleeding soon and feel better.

 



Dx with UC in Sept. 2010.Tried various Mesalamine enemas/suppos/pills with Prednisone for several rounds without any help.Diet consists of mostly only protein: protein shakes w/almond milk, Liquid Minerals& Vitamins,Maca powder,L-Glutamine 15g, D-Ribose 5g, chia seeds,5-Loxin.VSL#3,K2,VIt. D3 100,000 IU every 10 days.Canasa suppos. as maintenance. But Transdermal LDN is working!!

InSoFla
Veteran Member


Date Joined Jan 2011
Total Posts : 4679
   Posted 7/15/2011 6:48 PM (GMT -6)   
 
One more thought: how much VSL #3 are you taking? Maybe not enough?
There is a prescription version of VSL, called VSL #3 DS (double strength) which is supposed to be more helpful.
Also, check out the thread on psyllium powder vs. husk, that might be helpful to you as well.

Dx with UC in Sept. 2010.Tried various Mesalamine enemas/suppos/pills with Prednisone for several rounds without any help.Diet consists of mostly only protein: protein shakes w/almond milk, Liquid Minerals& Vitamins,Maca powder,L-Glutamine 15g, D-Ribose 5g, chia seeds,5-Loxin.VSL#3,K2,VIt. D3 100,000 IU every 10 days.Canasa suppos. as maintenance. But Transdermal LDN is working!!

goldenhawk
New Member


Date Joined Jul 2012
Total Posts : 1
   Posted 7/5/2012 3:20 AM (GMT -6)   
Hey, kops2da. The stomach is on the left side, not the right side. If you wonder why you should believe me, I have been a nurse for over 25 years. I've had UC since 1994 and just recently I've been bleeding for 4 months now and it's getting worse. Without health insurance anymore, there aren't many options for me to get well again. Sulfasalazine always worked for me but I need a prescription to get some. I don't have a family doctor either and any new doctor would want a colonoscopy before prescribing the medicine for me since it's been over 5 years since the last one. I don't care to ever have one of those again! And without insurance, the cost of one would be outrageous!

InSoFla
Veteran Member


Date Joined Jan 2011
Total Posts : 4679
   Posted 7/5/2012 8:09 AM (GMT -6)   
goldenhawk,
 
Welcome to the forum.
I am sorry you've been bleeding for 4 months, have run out of meds, and have no insurance. That certainly sucks!
 
I know the meds are very expensive, especially without insurance.
 
Here's my suggestion: look into LDN, low dose naltrexone - it has been put quite a few of us on this forum in remission.
It costs around $29. per month.
 
What are you doing about: probiotics, diet modification?
 
The meds I was paying $$$ for didn't work for me, so I had to find my own way. BTW, I have insurance but it's lousy insurance, everything is out of pocket, including my $5,000 colonoscopy.
 
I found a combination of supplements, probiotics, diet modification + LDN put me in remission.
For more info on the protocol which has put me into remission, please go to this link: http://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.
 
Let me know how we can help you.
 
 

Rx meds didn't help me. But 4.5 mg LDN +Paleo diet +supplements=REMISSION.Protein shakes w/almond milk,Maca powder,L-Glutamine,D-Ribose,chia seeds.VSL#3,K2,VIt. D3,slippery elm bark powder.For more info,my protocol is the 11th post at this link: http://www.healingwell.com/community/default.aspx?f=38&m=1666318
If you have any questions, you can find my email address at my profile.

IamCurious
Veteran Member


Date Joined Jan 2010
Total Posts : 2176
   Posted 7/5/2012 8:51 AM (GMT -6)   
Sulfasalazine always worked for me but I need a prescription to get some. I don't have a family doctor either and any new doctor would want a colonoscopy before prescribing the medicine for me since it's been over 5 years since the last one.

Don't give up finding a doctor who might help you. Or a nurse practitioner is even more likely to be able to provide a prescription for Sulfasalazine.
Male/60 DX ulcerative colitis Feb08, or maybe Crohn's colitis.
No Meds, allergic to Mesalamine. Remission since Mar10. Psyllium seed mixed with VSL3 is very helpful. Food journal instead of SCD.

Lots of fruit & vegetables (but no plums, kale, or carrots), no soda, no gluten, no HFCS, no xylitol or sorbitol, no trans fat, no shellfish, few processed foods, no carrageenan.
Probiotics, fish oil, multivitamin, extra D3, K2, high gamma E, phos choline, magnesium, boswellia, curcumin, glutamine.
Nature created all of the locks, therefore Nature has all of the keys

A.S. Kaler
New Member


Date Joined Oct 2013
Total Posts : 1
   Posted 10/17/2013 11:35 AM (GMT -6)   
I was diagnosed with UC in 2001 i was 13 years old, now i am 25 years old and i am eating MESACOL since then, I am fedup to hear Doc's response, he says it has no cure, when it stops bleeding he reduces the dose of Mesacol from 6 tablets (800 mg-two each mrng,aft and eve) to 2 tablet (1 each mrng & evening). When it starts bleeding after 1 year he again increases the dose, i asked him and he says it has no cure, because of this response i have stopped visiting my GI and the increase and decrease the MESACOL myself, and i am doing this from last 8 years n i have never visited my GI.
let me tell u how it starts, when I have constipation it starts bleeding after some days, and I have to increase the dose, it bleeds for 1 to 2 months and then it stops, i decrease the dose myself and then after 1 or two years it again starts bleeding , and i repeat the same.
crap i am fedup of this.........Once I saw on Discovery Channel, that there is a Research center or Hospital somewhere in Massachusetts and they give some worms to the patient to swallow (mixed in water,itsa thick paste like banana shake),,,these worms sit on the infected part of the intestine and it stops bleeding - no need for medicines ......but i have searched a lot about it on internet and I never found any info, is there someone form MA who can look for this center i guess it might be in BOSTON.

A.S.Kaler - INDIA
diagnosed in 2001
Medicine- MESACOL
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