me...
Hello all! I have been a part of this website for a year & a half now. I am so thankful for finding this group and all the knowledge and experiences that are shared. I am constantly looking to this site and this group for information on different meds and conditions that come up in my life and to give a thought or two here or there to anyone who sounds like they could use it.
I was diagnosed about 3 years ago and though my UC has been mild to moderate, it still has not been any fun. This disease ended my military career with an involuntary medical retirement. I find myself giving second thoughts to going out on certain trips due to the possibility that I might need to use the bathroom urgently. I have been having issues with urgency almost the entire time I've had this disease. Some times obviously worse than others. I have been dealing with persistent fissures that just won't heal. I've tried nitroglycerin ointment to help blood flow to the skin to promote healing, I've tried Proctofoam but it stung really bad and didn't seem to do much else. Maybe I didn't give it a fair chance, I only used it once or twice, I wonder if it's worked for anyone else. I just don't know what else to do. It seems the only thing that has ever cleared up the fissures was when I was on Prednisone and we all know all too well that prednisone, though it works really well, is a HORRIBLE drug to be on.
Lately I've been feeling ok. Still have bleeding with most BM. As mentioned before I do still experience some urgency issues and being close to a bathroom makes me feel more at ease. I get a bit nervous when I am not somewhere I can use the bathroom if I need to. We just started house hunting for our first home and it makes me nervous.. I know there are bathrooms in the houses but who wants to say "hey (realtor) I really need to use the bathroom, do you think the home owners will mind?" How embarrassing if I can't hold it through a couple of 20-30 minute showings... I've gone back on Asacol. The GI put me back on Asacol from Lialda when i was leaving the Navy because it's cheaper. If I knew then what I know now I would have asked him to keep me on Lialda. It seemed to work AND I didn't experience any side effects from it. This time and the last time taking Asacol I have been dealing with constant pain in my elbow joint. I am convinced it's the Asacol because only when I'm on it do my elbow joints hurt. I also take Rowasa and it is SO unfortunate that one of the more inconvenient meds is the one that seems to work the best. I really only notice a difference with the Rowasa. If I miss a dose then the next day is a rough one but if I miss a does of Asacol.. I see no difference whatsoever. My UC is pancolitis but my active symptoms have always been left sided and with the worst being at the rectum and sigmoid colon. I guess this is why the Rowasa seems to help so much. I do also take Canasa on occasion to help with urgency but it doesn't seem to be helping lately either.
I have been really interested in trying LDN. I have read a bit about it but my navy GI wouldn't even entertain the notion. And if you are familiar with military medical, there's only so much you can do, especially when you are facing a medical and physical evaluation board. So, I have had to wait until I was out of the military to look into the LDN. Any one have any bits of advice for me on LDN? Any personal experiences to share regarding LDN and UC?
Well, this has become quite the wordy first journal entry. I wish everyone good health and happy days! Thanks for taking the time to read my thoughts and I'm looking forward to any thoughts anyone wants to share with me. <3
I was diagnosed about 3 years ago and though my UC has been mild to moderate, it still has not been any fun. This disease ended my military career with an involuntary medical retirement. I find myself giving second thoughts to going out on certain trips due to the possibility that I might need to use the bathroom urgently. I have been having issues with urgency almost the entire time I've had this disease. Some times obviously worse than others. I have been dealing with persistent fissures that just won't heal. I've tried nitroglycerin ointment to help blood flow to the skin to promote healing, I've tried Proctofoam but it stung really bad and didn't seem to do much else. Maybe I didn't give it a fair chance, I only used it once or twice, I wonder if it's worked for anyone else. I just don't know what else to do. It seems the only thing that has ever cleared up the fissures was when I was on Prednisone and we all know all too well that prednisone, though it works really well, is a HORRIBLE drug to be on.
Lately I've been feeling ok. Still have bleeding with most BM. As mentioned before I do still experience some urgency issues and being close to a bathroom makes me feel more at ease. I get a bit nervous when I am not somewhere I can use the bathroom if I need to. We just started house hunting for our first home and it makes me nervous.. I know there are bathrooms in the houses but who wants to say "hey (realtor) I really need to use the bathroom, do you think the home owners will mind?" How embarrassing if I can't hold it through a couple of 20-30 minute showings... I've gone back on Asacol. The GI put me back on Asacol from Lialda when i was leaving the Navy because it's cheaper. If I knew then what I know now I would have asked him to keep me on Lialda. It seemed to work AND I didn't experience any side effects from it. This time and the last time taking Asacol I have been dealing with constant pain in my elbow joint. I am convinced it's the Asacol because only when I'm on it do my elbow joints hurt. I also take Rowasa and it is SO unfortunate that one of the more inconvenient meds is the one that seems to work the best. I really only notice a difference with the Rowasa. If I miss a dose then the next day is a rough one but if I miss a does of Asacol.. I see no difference whatsoever. My UC is pancolitis but my active symptoms have always been left sided and with the worst being at the rectum and sigmoid colon. I guess this is why the Rowasa seems to help so much. I do also take Canasa on occasion to help with urgency but it doesn't seem to be helping lately either.
I have been really interested in trying LDN. I have read a bit about it but my navy GI wouldn't even entertain the notion. And if you are familiar with military medical, there's only so much you can do, especially when you are facing a medical and physical evaluation board. So, I have had to wait until I was out of the military to look into the LDN. Any one have any bits of advice for me on LDN? Any personal experiences to share regarding LDN and UC?
Well, this has become quite the wordy first journal entry. I wish everyone good health and happy days! Thanks for taking the time to read my thoughts and I'm looking forward to any thoughts anyone wants to share with me. <3
Replies
Barbi,
I am thankful for you too. This site has helped me alot by having insight from others with UC. Also it has helped me to read your experiences, so I can relate or gain some good advice. :-) I feel dumb to ask but what is LDN?
Low Dose Naltrexone... in the regular dose (like 50 mg) Naltrexone is used to treat narcotic addicts but they have found that at low doses (. I have only heard of a couple of instances of people with UC taking LND but there haven\'t been any formal studies on UC patients. Check out www.lowdosenaltrexone.org there are virtually no side effects other than possible sleep disturbances at the beginning but those go away. Basically LDN is an endorphin blocker. It blocks your brain from recognizing that the endorphins are there which in turn causes your body to create more. These endorphins give a boost to your immune system. There is a community out there that believes the reason our immune systems aren\'t acting right isn\'t because they are over active (like our doctors tell us) but because they aren\'t stimulate properly. I have heard of anyone getting worse on LDN. I\'ve only ever read of either no effect or positive effect, that\'s why I want to try it. plus, endorphins are those little chemicals that boost your mood so what\'s the worst that could happen??? I may not see a difference in my UC but I\'ll be happier?? Doesn\'t sound like a horrible thing to me. :-) I\'m really hoping I can find a local doc that is willing to help me go down the healing path that I am looking for. :-) And don\'t ever feel dumb asking a question... hell, doctors have PhD\'s and don\'t have all the answers. I KNOW that I know more about my condition than my previous primary care doc did.. if you don\'t ask you\'ll never know, so ask away and if I can answer, i will. If I can\'t i will look and we can find the answer together. :-)
AHH!! a line or two got deleted right where you see \"at low doese (.\" I should read...
...at low doses (less than 4.5mg) \"a halt in progression of their illness. In many patients there was a marked remission in signs and symptoms of the disease. The greatest number of patients within the autoimmune group are people with multiple sclerosis\" (taken from www.lowdosenaltrexone.org) Most of the formal studies that I have read about concerning autoimmune disease were on patients with MS (multiple sclerosis) but there have been a few on crohn\'s disease.