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Posted 1/14/2011 5:33 PM (GMT 0)
Hi,

I am newbie to this forum and to UC as well.

After 2 rounds of prednisone and mesalamine suppositories and pills - none of which helped, I found my own combination of alternative stuff which did put me in remission.

 

Now, due to stress (death of my brother to unexpectedly diagnosed stage 4 terminal colon cancer), I am having a terrible UC flare with lots of bleeding - hate to gross anyone out, but the blood is coming out like a faucet, in addition to blood clots.

 

So i went back on the mesalamine stuff - but I was reading that Glutamine intake should be at 8-20 grams daily, and during a UC flare up to 40 grams a day.

 

Anyone have any experience with this type of bleeding?

And with the glutamine supplementation?

 

Scared and desperate,

thank you

Posted 1/14/2011 6:13 PM (GMT 0)
Welcome to healing well. Sorry you are going through so much trouble. There will be a lot of urgency expressed on this forum, no pun intended, to get mesalamine enenemas in addition to the suppositories. They are very helpful in healing the rectum, moreso than the suppositories because they reach a greater area in the rectum that is inflammed.

What orals are you taking? Asacol?
Posted 1/14/2011 6:32 PM (GMT 0)
hello, I'm so sorry for your brother. Please ask the GI to test your blood levels asap - I was bleeding probably 1/4 as you and still needed 2 blood transfusions.
Posted 1/14/2011 7:32 PM (GMT 0)
I am sorry you're feeling terrible and also to hear about your brother. I bled a ton when I was flared up. I think some people bleed and others don't. I also haven't had as much luck with mesalamine as others have. It worked for me for a period of time and then stopped working. When it stopped, I had an awful flare up with tons of blood and pain. I am now taking 6mp which seems to have helped to get things under control but I am still trying to figure out what works. Try not to get discouraged. Many people try prednisone and taper off too quickly and end up back in a flare. Some people have no luck with certain medication but have a lot more luck with others. I have never tried glutamine but I've tried a lot of supplements and none of them have helped much to control my UC. Have you talked to your GI about the next step? Please get regular colonoscopies with your family history.
Posted 1/14/2011 8:00 PM (GMT 0)
Yeah I've had that kind of bleeding and lived to tell of it. But as bad as the bleeding was I was more bothered by urgency. It took a long time to get it through my head that urgency would not get better until the bleeding/inflammation was corrected.

Mesalamine enemas should be used every night until you see no bleeding.
In my own case I found that when I stopped eating gluten my heavy bleeding stopped, that may or may not be true for you. It still took me a year to get the rest of the intermittent bleeding, inflammation, urgency, etc under control using diet modification.

You've been given good ideas:
--get tested for anemia
--start mesalamine enemas
--take a good probiotic

I take L-Glutamine daily, powder form dissolved in water. The bottle says 1 heaping teaspoon =4500 mg (is that 4.5 grams?). I guess I take an average teaspoon amount, not heaping. It can help repair your gut but don't expect it to stop bleeding IMO.

Mesalamine pills never helped me either so if I were you I'd ask your doctor for the next step which could be Colazal, Balsalazide or Sulfasalazine. Although some docs like to jump into the stronger ones sooner my own opinion is to hold off on stronger drugs (6mp and similar, or Remicade) until you've given the less harsh ones a good try.

Best wishes.
Posted 1/14/2011 8:03 PM (GMT 0)

journey2health said...
Welcome to healing well. Sorry you are going through so much trouble. There will be a lot of urgency expressed on this forum, no pun intended, to get mesalamine enenemas in addition to the suppositories. They are very helpful in healing the rectum, moreso than the suppositories because they reach a greater area in the rectum that is inflammed.

What orals are you taking? Asacol?

Thank you. I did the mesalamine enemas after my initial diagnosis - the name escapes me, but they did not help.

I put myself back on Canasa suppositories (1000mg) and Pentasa 500mg. I really don't want to go back on prednisone though, as in the first 2 rounds none of these things helped. That's why I started looking for other ways of treating/dealing with this.

How long does it take to start making a difference in the bleeding?

Posted 1/14/2011 8:07 PM (GMT 0)

Alba29 said...
hello, I'm so sorry for your brother. Please ask the GI to test your blood levels asap - I was bleeding probably 1/4 as you and still needed 2 blood transfusions.

Thank you. My brother was 64 years old and had not been to a doctor in 20 years; he was very anti-establishment and anti-authority figures of any kind. Sadly when he finally went to the hospital, they gave him his terminal diagnosis. Very sad.

I just got some blood work drawn for the endocrinologist, I don't know if the right tests were done, so I will have to ask him.

Posted 1/14/2011 8:26 PM (GMT 0)

imagardener2 said...
Yeah I've had that kind of bleeding and lived to tell of it. But as bad as the bleeding was I was more bothered by urgency. It took a long time to get it through my head that urgency would not get better until the bleeding/inflammation was corrected.

Mesalamine enemas should be used every night until you see no bleeding.
In my own case I found that when I stopped eating gluten my heavy bleeding stopped, that may or may not be true for you. It still took me a year to get the rest of the intermittent bleeding, inflammation, urgency, etc under control using diet modification.

You've been given good ideas:
--get tested for anemia
--start mesalamine enemas
--take a good probiotic

I take L-Glutamine daily, powder form dissolved in water. The bottle says 1 heaping teaspoon =4500 mg (is that 4.5 grams?). I guess I take an average teaspoon amount, not heaping. It can help repair your gut but don't expect it to stop bleeding IMO.

Mesalamine pills never helped me either so if I were you I'd ask your doctor for the next step which could be Colazal, Balsalazide or Sulfasalazine. Although some docs like to jump into the stronger ones sooner my own opinion is to hold off on stronger drugs (6mp and similar, or Remicade) until you've given the less harsh ones a good try.

Best wishes.

Thank you. To date I haven't found the mesalamine products to be helpful either.

I'm waiting on some blood results back.

I am currently taking Probiotics VSL#3, Slippery Elm, as well as K2,Krill Oil supplements. The L-Glutamine I just upped my dosage from 1 scoop (yes, 4500mg) to 3 scoops which I take in my morning shake (almond milk + whey protein + chia seeds + maca powder). I now take 2 of these a day, and am on a very restricted diet: protein only.

Although I've never been officially tested for Gluten, I've found I am intolerant of any wheat/oat products...and many other types of foods as well, so consequently I stay away from all carbs.

Before this flare, I was able to enjoy cashews, broccoli, cauliflower, and salad, which rounded out my diet. But now with this terrible flare I am on protein alone.

I've been losing weight (not my goal), but right now I am much more concerned about getting the bleeding under control than enough caloric intake.

I did find that tripling the glutamine did have some effect on bleeding (lessened it a little) - is that just coincidence?

 

Posted 1/14/2011 8:30 PM (GMT 0)

notsosicklygirl said...
I am sorry you're feeling terrible and also to hear about your brother. I bled a ton when I was flared up. I think some people bleed and others don't. I also haven't had as much luck with mesalamine as others have. It worked for me for a period of time and then stopped working. When it stopped, I had an awful flare up with tons of blood and pain. I am now taking 6mp which seems to have helped to get things under control but I am still trying to figure out what works. Try not to get discouraged. Many people try prednisone and taper off too quickly and end up back in a flare. Some people have no luck with certain medication but have a lot more luck with others. I have never tried glutamine but I've tried a lot of supplements and none of them have helped much to control my UC. Have you talked to your GI about the next step? Please get regular colonoscopies with your family history.

Thanks. I'm afraid to call my GI as I don't want to go back on prednisone, which didn't help me the first time around. I guess I'm hoping I will get better soon, so I don't have to go up the steps to the next medication level (the one below remicade, the GI said). Am I putting my head in the sand? When I was initially diagnosed, he told me every 3 years for colonoscopies - that was before we knew about my brother's terminal colon cancer. Is that going to change now too?

Sorry for all the questions.

Posted 1/14/2011 8:53 PM (GMT 0)
Hi and welcome - I am so sorry for your flare and about your brother!!

Have you tried the steroid enemas? I know steroids aren't anyone's favorite thing, but the steroid enemas so far have stopped my bleeding amazingly quickly. I bleed in any kind of flare, and I've had the kind of bleeding you describe...... I have sometimes bargained with my GI, "Please let me try 3 weeks of steroid enemas and if that doesn't work, I'll try the..." whatever.

You might be talking about 6-MP, or Imuran? I know the idea of that used to scare me, but there are some folks on this forum who have had marvellous success with it (MyUC, in particular at the moment.)

This is a great place to ask questions, so no need to apologize!
Again, welcome aboard!
Posted 1/14/2011 9:56 PM (GMT 0)

InSoFla said...
I am having a terrible UC flare with lots of bleeding - hate to gross anyone out, but the blood is coming out like a faucet, in addition to blood clots.

My second flare was like this. You need to see someone ASAP. You could have toxic megacolon, which can be very dangerous. In regard to medications, you don't have much of a choice at this point. You will need to take steroids or something even stronger to reduce the inflammation. After that, you can decide to try other alternative treatments or get surgery if you don't want to take the heavy meds.

I took prednisone once. That was when the blood was coming out like a faucet in addition to blood clots. I had no choice, not if I didn't want to risk my colon rupturing. I remember my GI was in panic mode when he saw me. I think I got there just in time.

Please go to the emergency room and see someone now if you have to wait to see a GI.
Posted 1/14/2011 10:22 PM (GMT 0)
good advice from others, I've never had THAT much bleeding before. Maybe Prednisone won't help(it did take 7-10 days@60mg for it to start for me), but they must have something to help you. I'd second the steroid enema, attack the problem where it's at!

Curious what alternative treatments you did, I recently started on TCM(Traditional Chinese Medicine), via herbal teas, I'd recommend this as a try for most, but with someone bleeding as much as you I'm not sure I would go that route just yet, maybe worth a call?

I'd also say re-think your diet. Low Residue.low fiber helped me in my last bad flare. Maybe these comments on a non-wheat diet will help: http://www.livestrong.com/article/275512-non-wheat-diet/

Post Edited (beachlife) : 1/14/2011 9:24:51 PM (GMT-7)

Posted 1/14/2011 11:22 PM (GMT 0)
Wanted to give another idea: Entocort. It's a gut-specific steroid that has much fewer side-effects because it doesn't go throughout your body. People are right about maybe you need to go "steroid" rather than taking too long to get the bleeding under control.

Entocort did help me a little but was not the ultimate solution for me. I had no side effects and had great energy while on it.
Posted 1/15/2011 1:16 AM (GMT 0)

songlady said...
Hi and welcome - I am so sorry for your flare and about your brother!!

Have you tried the steroid enemas? I know steroids aren't anyone's favorite thing, but the steroid enemas so far have stopped my bleeding amazingly quickly. I bleed in any kind of flare, and I've had the kind of bleeding you describe...... I have sometimes bargained with my GI, "Please let me try 3 weeks of steroid enemas and if that doesn't work, I'll try the..." whatever.

You might be talking about 6-MP, or Imuran? I know the idea of that used to scare me, but there are some folks on this forum who have had marvellous success with it (MyUC, in particular at the moment.)

This is a great place to ask questions, so no need to apologize!
Again, welcome aboard!

Thanks. I didn't know there were steroid enemas. I have heard about the short-fatty acid Butyral enemas, but when I asked my doctor he said he didn't feel it would help me. What do you think?

Posted 1/15/2011 1:27 AM (GMT 0)

beachlife said...
good advice from others, I've never had THAT much bleeding before. Maybe Prednisone won't help(it did take 7-10 days@6mg for it to start for me), but they must have something to help you. I'd second the steroid enema, attack the problem where it's at!

Curious what alternative treatments you did, I recently started on TCM(Traditional Chinese Medicine), via herbal teas, I'd recommend this as a try for most, but with someone bleeding as much as you I'm not sure I would go that route just yet, maybe worth a call?

I'd also say re-think your diet. Low Residue.low fiber helped me in my last bad flare. Maybe these comments on a non-wheat diet will help: http://www.livestrong.com/article/275512-non-wheat-diet/

Thanks. Initially I was on prednisone in addition to some mesalamine enemas, prednisone starting at a dose of 10mg x 3 pills for 4 days, then 2 pills for 4 days, then 1 pill for 4 days, then 1/2 pill for 4 days. All of these didn't help.

Alternatives I am currently doing now:

I am currently taking Probiotics VSL#3, Slippery Elm, as well as K2,Krill Oil supplements. Also taking Marshmallow organic tea a few times a day.The L-Glutamine I just upped my dosage from 1 scoop (yes, 4500mg) to 3 scoops which I take in my morning shake (almond milk + whey protein + chia seeds + maca powder). I now take 2 of these a day, and am on a very restricted diet: protein only.

Although I've never been officially tested for Gluten, I've found I am intolerant of any wheat/oat products...and many other types of foods as well, so consequently I stay away from all carbs.

Before this flare, I was able to enjoy cashews, broccoli, cauliflower, and salad, which rounded out my diet. But now with this terrible flare I am on protein alone.

I've been losing weight (not my goal), but right now I am much more concerned about getting the bleeding under control than enough caloric intake.

I did find that tripling the glutamine did have some effect on bleeding (lessened it a little) - is that just coincidence?

I don't have any dairy, wheat/oat, carbs, fiber at all.

For the moment, I am only having protein (sardines, salmon, bison burger without the bun, piece of chicken, shrimp) that's it. 

Posted 1/15/2011 1:30 AM (GMT 0)

songlady said...
Hi and welcome - I am so sorry for your flare and about your brother!!

Have you tried the steroid enemas? I know steroids aren't anyone's favorite thing, but the steroid enemas so far have stopped my bleeding amazingly quickly. I bleed in any kind of flare, and I've had the kind of bleeding you describe...... I have sometimes bargained with my GI, "Please let me try 3 weeks of steroid enemas and if that doesn't work, I'll try the..." whatever.

You might be talking about 6-MP, or Imuran? I know the idea of that used to scare me, but there are some folks on this forum who have had marvellous success with it (MyUC, in particular at the moment.)

This is a great place to ask questions, so no need to apologize!
Again, welcome aboard!

Thanks. Yes, it was 6-mp, and then remicade. I guess I'll have to go see my GI and ask him about the steroid enemas, and whatever else?

 

Posted 1/15/2011 1:32 AM (GMT 0)

Anyone have any experience or good success with the short fatty acid Butyral enemas?

I've tried the mesalamine ones and they didn't work.

A few of you have suggested Steroid enemas, which I didn't know they had, so I will discuss it with the GI.

Thank you so much for your helpful comments.

I am pretty scared, and it is very supportive.

Posted 1/15/2011 1:35 AM (GMT 0)

subdued said...

InSoFla said...
I am having a terrible UC flare with lots of bleeding - hate to gross anyone out, but the blood is coming out like a faucet, in addition to blood clots.

My second flare was like this. You need to see someone ASAP. You could have toxic megacolon, which can be very dangerous. In regard to medications, you don't have much of a choice at this point. You will need to take steroids or something even stronger to reduce the inflammation. After that, you can decide to try other alternative treatments or get surgery if you don't want to take the heavy meds.

I took prednisone once. That was when the blood was coming out like a faucet in addition to blood clots. I had no choice, not if I didn't want to risk my colon rupturing. I remember my GI was in panic mode when he saw me. I think I got there just in time.

Please go to the emergency room and see someone now if you have to wait to see a GI.

Yes, omg, you sure scared me. I guess I'll have to go to the GI. Thanks, I figure I would wait it out, but I guess I cannot.

 

Posted 1/15/2011 1:37 AM (GMT 0)

imagardener2 said...
Wanted to give another idea: Entocort. It's a gut-specific steroid that has much fewer side-effects because it doesn't go throughout your body. People are right about maybe you need to go "steroid" rather than taking too long to get the bleeding under control.

Entocort did help me a little but was not the ultimate solution for me. I had no side effects and had great energy while on it.

Thanks. Does the Entocort have the same side effects that prednisone has? Is it an oral steroid?

How long do you need to take it for?

Posted 1/15/2011 2:00 AM (GMT 0)
(disclaimer, I am not a doctor, or nutritionist, nor do I play one on the internet!! :-))

curious, who advised the 100% Protein Diet? I would think this would cause you miss out on a lot of nutrients and more. Ex:
from : http://www.colitis-crohns.com/facts.html
Read the paragraph starting with: What causes bowel inflammation and ulcers?

have you tried cooked(vice raw) vegetables? Maybe if you eliminate the salad and cashews(nuts, hard to digest), and stick with just cooked veggies?

sorry you're going through this, if I was bleeding that much I'd run to the ER. hope things turn for the better this weekend
Posted 1/15/2011 2:02 AM (GMT 0)
I haven't been on Entocort, but I believe it is supposed to release lower in the system and therefore have less side effects. It is an oral steroid.

I think you should call you GI asap, and do ask about the rectal steroids - but it sounds as if you're losing a lot of blood, and.... as subdued said, there always is the risk for toxic megacolon. I say this not to scare you, but that much bleeding, with clots, shouldn't wait too long.

Please keep us posted! You are in my thoughts.
Posted 1/15/2011 2:06 AM (GMT 0)
I would think with your family history they will want to do colonoscopies more often than every three years. Unfortunately, with UC we have to have them frequently but with a family history, that would make it even more frequent.

I used to try a lot of supplements and diets and I was always so hopeful that the next thing would work but it never did. I know drugs like 6mp and remicade sound scary but they can also offer relief. I think entocort is similar to prednisone but it has less side effects. I've heard that it's not as effective as pred. Even if you were to start a drug like 6mp, it could take a few months to become effectiive and you would probably have to take prednisone in the mean time to keep you from getting sicker. Surgery is anotehr option if you're not interested in trying any other drugs. Most people who have surgery only regret having not done it sooner.
Posted 1/15/2011 4:04 AM (GMT 0)
Hi Sorry to hear you are going through a tough time at the moment. I noticed you said you have tried 10 mg of prednisone and reduced every four days.. I am suprised with all the bleeding you have, that the GI have put you on such a low dose.. My Gi has me on 35mg of oral prednisone at present and it has stopped my bleeding.. I started as high as 5omg a day. If you reduce your prednisone quickly it will be of no help to you and you will stay in your flare. Your Gi needs to reduce it at a very slow rate over a long period of time. I have had steroids on and off now for 11 years and have not had any surgery yet. Yes it can cause some bad side effects for some people but what medication does'nt have some great risks whilst taking. Every drug has serious side effects its a matter of if you will be the unlucky one to get them. No Drug Is Risk Free.. Good luck hope you get better soon.
Posted 1/15/2011 4:45 AM (GMT 0)
I'm sorry to hear about your brother.  I will keep you in my prayers.  I took supositories and later on enemas and Azacol.  They worked for me for a time, but for some reason my doctor cut me off when we found out the medication was working for me.  I'm not sure you should stop taking a medication if it works for you...I did have a lot of bleeding like you.  My colitis was crazy and got worse very fast.  I'm not a fan of prednisone.  My own brother had ulcerative colitis like me and he took it for years.  It worked for him, but he had a lot of side affects.  I took it for a time, and I think it made my condition so much worse.  I just want to let you know what to look out for.  I'm assuming your doctor told you that you'll probobly need surgery some time in your life - which is good, because it cures colitis.  I was having bleeding like you and eventually I needed to go to the hospital to figure out what medication worked for me.  I took Remacade and it takes a long time to explain what it is and does, but I will strongly suggest not to take it.  I should have chosen surgery first - I ended up having emergency surgery anyway because of the Remacade.  This message is very long and crazy, but so is my experience with colitis.  Just want you to know there is always hope and it will get better.  It won't always be like this.
Posted 1/16/2011 2:58 AM (GMT 0)

imagardener2 said...
Wanted to give another idea: Entocort. It's a gut-specific steroid that has much fewer side-effects because it doesn't go throughout your body. People are right about maybe you need to go "steroid" rather than taking too long to get the bleeding under control.

Entocort did help me a little but was not the ultimate solution for me. I had no side effects and had great energy while on it.

Would you be able to share with me the details in your signature- as to what put you in remission?

In remission April 2010 after 10 years of UC with no remission ever
Jan 2010 began SpecCarbDiet (modified to remove dairy, fruit & juices,)
Gluten-free=bleeding stopped in 3 days, 95% remission in 5.5 months on SCD
SCDiet: Gluten/grain-free, starch-free, low carb, honey as sweetener
(9)Balsalazide+(6)Citrucel+VSL#3 daily, mesalamine enema as needed
Curcumin/turmeric pill, D3 5000, L-glutamine.

SCD? How much L-Glutamine? I just started upping my L-glutamine to 12 grams twice a day. As far as diet is concerned, for the moment I am only on protein - no dairy, no carbs, no veggies, no fruits, etc.. Thank you.

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