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Posted 6/14/2011 12:35 PM (GMT 0)
Went to the GI yesterday for a follow up. She said the blood work looked fine, inflammatory markers normal, liver numbers slightly elevated. Good new is she does not want to change my meds and actually sugessted 2 more months on current meds then maybe decreasing the Asacol.

Have been doing pretty good, going to bathroom 3 times/day some small amounts of blood but she says it is not a cause for concern according to tests and could actually be an hemmeroid causing bleeding, I guess I never thought of that and didn't think I had symptoms of that but never really had much issues with them either. Still have occasinal urgency but not as bad as it has been. Ocassional mucous after urgency with no additional output.

So I think the current meds with the addition of the Rowasa have me headed in the right direction! Thanks to all who sugessted using this med, it works better than the Pred for me at this time.
Posted 6/14/2011 3:36 PM (GMT 0)
Hey Deuce,

Wonderful to see you here and feeling a bit better :)

It sounds like you're improving. The test sounds like it was for Imuran/6mp but I think your GI thinks you're doing well and doesn't think it's necessary at this point. If you need it in the future, it is good to know whether you can metabolize it, if you can't, it's not an option.

Urgency is usually the last symptom to clear up, in time, it will. Healing requires a lot of patience, it's a process...

Goodluck finding what works for you. Asacol + Rowasa is the magic combo for many people. Let's hope you stay in a LONG remission.
Posted 6/14/2011 7:04 PM (GMT 0)
Awesome news. Yes...it's a long process to get the meds to click and understand the healing symptoms.

Do you have pancolitis Deuce?

q
Posted 6/14/2011 9:59 PM (GMT 0)
Thanks both for the well wishes!! If urgency is the last to clear up then we are on the right path! It has been so busy for me so far this spring and summer already, working construction on off days from the FD and going on mini vacations every 3rd weekend with the new ATV (what a blast to see the state from a different view as on the trails) and planning different cabins to stay in around the state, and the past week our cat has been very ill, so I have not been being anti social, just busy! This is a wonderful website and it has helped me tremendously and I cannot thank each one of you enough for your kind words, knowledge, and stories.

I do not think I have pancolitis but am not 100% sure what it is?? This is still kind of new to me as far as terminology. I know that the area of irritation extends at the farthest point 22cm up, but not sure if that is considered pancolitis. I learn more from you all here than from my GI, but she has told me I have UC and I don't recall the pancolits term coming up.

I hope everyone is doing wonderful!

Posted 9/12/2011 9:11 PM (GMT 0)
Hi there I'm new here my wife found this site for me.  I have a question for Anthony1977 though...Did you go back to being a firefighter after your surgery?  I'm a firefighter too.  Was diagnosed last year with UC.  Suppositories worked for a few months then stopped Nov. 2010.  Since then I've been on every med that they can put me on.  Nothing is working.  Now they are saying I should go on Remicade but I don't think I'll be able to stay on job if i go on that.  How did your surgery go?  I'm going to see a surgeon at Mt. Sinai next week. 
Posted 9/13/2011 12:14 PM (GMT 0)
bear77,

Welcome to the forum Bear.

I'm sorry about your diagnosis and that nothing is helping you.

I would strongly urge you to look into LDN - low dose naltrexone. It has given quite a few of us our lives back, without severe side effects.

But you'll have to do your research on it, and I have to tell you in advance that your doctor probably won't know about it or won't want to prescribe it to you - and if that's the case, some of us have had to go to alternative docs or osteopaths to have it prescribed, BUT the good news is that it does work!

Here's some information on LDN for you to research:

Here's the Penn State research done by Dr. Jill Smith with LDN and Crohns Patients.
http://www.ncbi.nlm.nih.gov/pubmed/21380937

Here's my story on LDN: I started on 4.5mg of oral LDN on 2/7/2011, and saw no change - still continuing to bleed at a 10.

When I spoke with the compounding pharmacist, she mentioned that I may not be absorping the LDN properly, and suggested I switch to a transdermal LDN formula, which would be a cream applied to the bottom of the forearm. She told me a lot of her pediatric patients do much better with the Transdermal LDN, and in some patients with absorption issues it helps too. Bottom line is it works!

LDN - low dose naltrexone is very cheap - it costs around $25-30 a month (for pills or the transdermal cream). Gastro doctors usually don't prescribe it because they say "it isn't the standard of care". My gastro refused to prescribe it, so I found a local osteopath who did. I did ALOT of research, and the bottom line is: it works!

Once you get the script for it, you'll need to get it from a compounding pharmacy, who'll make it up for you, and ship it to you. The best compounding pharmacy in the country for LDN is Skip's Pharmacy in Boca Raton, FL. They ship all over the world - they have 20,000 patients with various conditions on LDN. That's where I get my transdermal LDN. If you contact them, they'll tell you who locally to you will prescribe it to you.

You can reach them at: 800-553-7429

www.skipspharmacy.com

Please, go to www.youtube.com write: Low dose Naltrexone in the search field and you will find a pharmacist explaining where in the U.S you can buy your medicine. You can also read these pages to find more info to bring to your doctor:
www.ldninfo.org

www.lowdosenaltrexone.org
www.ldnscience.org
www.ldnresearchtrust.org


and if you want to find what other patients have experienced when used LDN, choose UC,  or Crohns Disease at:
www.ldndatabase.com

Lastly, to help you find a doctor who will write you LDN script: http://www.ldnscience.org/find-a-doctor/search , you'll have to put in LDN in drop down box.

Hope this helps.

 

What do you think?

 

Good luck to you.

Please let me know how it works out for you.


Posted 9/13/2011 2:32 PM (GMT 0)
Thanks Insoflo, I will do some research and speak to my GI doctor.  I am on predisone right now, it will only be a week on wednesday.  I was on 6mp and it made me feel terrible and i continued to have symptoms.  I am so tired of this....monday i go to see a surgeon and see what she has to say.
Posted 9/13/2011 2:35 PM (GMT 0)
Doctors say that diet has wont help with UC.  What dietary changes of you all been doing?
Posted 9/13/2011 6:33 PM (GMT 0)
bear77,

That's the beauty of LDN, you can be on other meds, and when you start to get better, you taper off them slowly.

With regard to diet, lots of folks here (me included) have had great success with SCD - specific carbohydrate diet. It is very strict, so if you'd want to start slowly I would recommend keeping away from dairy, wheat, and gluten. I know many doctors don't think there's any connection between symptoms and diet, but I feel there is.


 

Posted 9/13/2011 7:13 PM (GMT 0)
  Hi,

  Has anyone heard of or worked with Russell Mariani. He claims to have CURED himself and many others of UC.  He is a Digestive Wellness Counselor and author of Healing Digestive Illness.  I have just started to read his

 book and his views on diet and causes seem to be very radical. So, before I waste my time just wondering if he has worked with anyone here and if it helped.

  Thank you

  

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