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6MP, weird, but I'm happy

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Ulcerative Colitis
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Posted 9/16/2010 8:36 PM (GMT 0)
So, I have been really down because although the 6MP is working wonderfully as far as my bowel is concerned, I have been having a lot of joint pain. I didn't know if it was the 6MP or UC related arthritis. I was all ready to talk to my GI next week when I see him. I don't want to change meds, but I feel like I am 90 years old. It hurts to get up and I feel all hunched over for a minute before I can straighten up. Well, I read somewhere (a magazine, here??) that cinnamon is an anti-inflammatory. So, I decided to add it to my daily regime of vitamins and supplements. Well, today I woke up with absolutely no pain and I wasn't hunched over. Whenever I would get up from a sitting position, it didn't hurt. I am so happy and hope that I stay feeling good. I wanted to let you all know because it is an easy thing to add to your diet and I know some other people were having issues with joint pain from 6MP.
Posted 9/18/2010 1:31 PM (GMT 0)
Hi Disneynut66 I'm on azathioprene, I think tis similar to 6MP, Imuran I too have the awfull old man feeling when I rest,and try to get up. So cinnamon you say? How much and what type do you take? Did you find it helped with depression at all? Currently taking 200 mg azathioprene per day
Posted 9/18/2010 4:41 PM (GMT 0)
I am also on 6mp...major back pain and joint pain.....I am interested to know also ...what brand, it is capsule or tablet?

Thanks

Carmen

Posted 9/18/2010 7:37 PM (GMT 0)
Well, unfortunately, I was wrong. I don't know why I was feeling better, but now I am back to feeling terrible. I also took an epsom salt bath which is supposed to help for joint pains, so maybe that was it. I took another bath last night (I didn't have very much left, though) and feel old again today. I do know that glucosamine helps. When I forget to take that, I feel even worse. I need to find a good brand, though, because this brand doesn't seem to have as much effect.

So, my question is, how much pain do you exchange for feeling good in the gut? I have an appointment next week and wonder if I should have him refer me to a rheumatologist. My GI felt like I had UC related arthritis before I started the medication and now it's worse. He said he would refer me to an associate if I wasn't feeling better. I don't like feeling this way, but I'm not sure if I'm ready for Remicade or Humira. I hate this disease, if it's not one thing, it's another!
Posted 9/20/2010 10:48 PM (GMT 0)
at least give the remicade a try. its not working for me so far. I'm giving it one more infusion. then I'm going to look into Humira and then surgery. or maybe just skip straight to surgery because all the meds i've been on haven't helped one bit.
Posted 9/20/2010 11:44 PM (GMT 0)
I am starting to think that surgery might be the way to go. I just want to feel better...my whole body.
Posted 9/22/2010 9:04 PM (GMT 0)
I can totally relate. I miss being able to rock climb, and run, and exercise. or just feel normal. I have a friend with Crohn's and she does very well on Remicade. so at least give it a try before surgery. I did because I wanted to know for sure I have extinguished all my options before cutting my gut out.
Posted 9/22/2010 9:55 PM (GMT 0)
Thanks Chef Patrick. Had an awful day today. My husband had his gallbladder removed this morning, then I had to run to my GI appt. Again, I left in tears. He doesn't think that the joint pain is from the meds even though I have seen it on the side effects warnings and I also have menopause symptoms which I know are from the the drug (also in the side effects, but you have to look for it). He ordered a pregnancy test. I started laughing. I am 44, my husband had surgery 11 years ago and I have no pregnancy symptoms. Also, he doesn't like my liver blood test results even though they are going down. That means that I might be closer to Remicade...which I am dreading because it is one step closer to surgery. Although, like I said before, I am starting to get really tired of this and just want it out.

Sorry for the rant...bad day. The good news is my husband's surgery went well and hopefully his tummy problems will be better soon.
Posted 9/24/2010 2:19 AM (GMT 0)
Joint pain is a result of steroid therapy. it destroys your connective tissue over a long term. I hate the stuff cuz it makes me zitty. that and moon face.
doctor wants me to have another infusion and not give up on the meds. but I think I need surgery. it seems like most people get their life back after surgery. I can only hope for that.
this is one horrible disease we have.
Posted 9/24/2010 2:41 AM (GMT 0)
Disneynut66, Chef Patrick

Go to the ostomy site and read about life after UC. It's not a bed of roses but it ain't all that bad compared to flaring UC and prednisone. Been there.

Dan
Posted 9/25/2010 10:50 AM (GMT 0)
Thanks. I have gone over there and will be talking to my GI about surgery Monday. I hope to make an appointment for a consult at the Cleveland Clinic as soon as possible. It seems like we are all just chasing our tails praying for a cure or a better medication, but really the only cure is surgery so why wait.
Posted 9/25/2010 5:25 PM (GMT 0)
http://www.gesundheitsregionen-bw.com/magazin/index.html?lang=en&artikelid=/artikel/04648/index.html

turns out there are upcoming options I may be able to try before surgery. I def don't want a permanent ostomy bag. I would choose Jpouch surgery fo sho!
Posted 9/25/2010 5:36 PM (GMT 0)
     Chef Patrick...may I ask your age?  I have a permanent ileostomy and will wear a bag for the rest of my life.  I sure wouldn't want more surgery at my age...64.  Really, the bag isn't bad at all.  I have no problems wearing my regular clothes.  Suffered with ulcerative proctitis for twelve years.  Still have "issues" but I have to learn to be more patient.  At my age, the healing will take longer.
Posted 10/4/2010 4:21 PM (GMT 0)
I'm 30. but I miss being active. I rock climb. so the pouch would cause an issue with my harness. that and wake boarding. seems like I have to give up my passions either way. I hope that a J pouch would cure the issue. but I know there are always complications with that as well.
Posted 10/4/2010 5:41 PM (GMT 0)
Dear Fellow UC sufferers: I guess everyone has to decide for his/herself but I am holding out for the cure! As crazy as that may sound we may be closer than you think, there were a couple articles cited by members on here about recent findings on UC cause and cure so don't give up hope! I have been battling this disease since 1982 and agree it is one lousy deal. I too suffer from joint pain like you describe and it comes and goes. (I actually like Prednisone because it makes me feel young again, if only temporarily.) Wish I could just stay on it. The other drugs I have been on starting with Sulfasalazine have had equally bad side effects. Have been on some form of Asacol now for more than 10 years and it is doing a number on my nerves; I may have Peripheral Neuropathy but won't know till I see my specialist. I have had everything from panic attacks to kidney stones. My medical file looks like a Sears catalog and I still hold out hope that I will not have to have my colon removed.  Hang in there!
Posted 10/4/2010 7:06 PM (GMT 0)
Heartme:

Yeah I have been there too.  I have been with this disease for two decades now and I am hoping somethhing will come along before I am ever faced with process of removing my colon.  They say 30% of UC'ers will have surgery and I guess 70% will not.  It just seems that almost everyone here, at least a majority of people here, are opting for surgery.  They either have to or opt to.  I realize it's a personal choice but I guess all I am trying to say is that it almost seems inevitable.  I would say half of the post here are about I hate the meds, their not working and I am going to see the surgeon.  Everyday.  It makes me depressed that I too will be posting this stuff some day.  I am trying to hold the line here but I am feel like I am in the minority. 

MyUC

 

Posted 10/4/2010 9:55 PM (GMT 0)
I hope you will try and remain positive MyUC. You are young enough that there is a good chance there will be a cure in your lifetime. I would not cosider having my colon removed unless it becomes a life or death situation. Even though they say it's a cure, it can still have complications and problems and then all you have done is trade one for another. Hard as it can be sometimes I really believe in being optomistic and even if you get angry that's OK, it means you are a fighter! So, don't let this thing get you down. Wish me luck-I'm going in for my colonoscopy tomorrow! yeah
Posted 10/4/2010 10:22 PM (GMT 0)

Good luck tomorrow on your colonscopy.  Seriously I wish you the best in it.  I am having my done at the end of this month and of course will post any results.  Thanks for the advice on staying postive, I am acutally a happy person overall and I have a good attitude about this UC thing.  All I am saying is that tomorrow I am sure I will wake up to about 30 new threads.  about 10 of them will say I am going to see the surgeon, another 10 ten will say I just had surgery, and another 10 will say there is no way I am going to take any meds, I want this colon out.  I was always under the impression that a minority (30%) go on to have surgery and majority of us don't.  Maybe I am just one of those people that should just enjoy their life and stop posting on a website where most people are having trouble with their colitis. rolleyes

Again, good luck tomorrow.

MyUC

Posted 10/5/2010 1:00 AM (GMT 0)
MyUC - I am not sure what has started this trend on this site but I will say that it is fairly new... I rarely saw anyone on this site opting for surgery until about a year ago. I do think that most people with UC do not have surgery - remember many of those who are not having problems and have their UC under control are not posting on this site. I do however enjoy your posts and think that your experience helps many of us who are not opting for surgery.
Posted 10/5/2010 12:41 PM (GMT 0)
thatfield, Heartme:

Thanks to both of you.  Maybe that's all I needed to hear, I mean read.  It's good to know that someone here enjoys my posts and I hope I am contributing to this wonderful site.  It's also good to know that you have noted this trend for the surgery thing a lot more this last year.  I have been reading posts on this site for about 3 years and your right thatfield, there has been a spike in the last year.  I still think I have hope that maybe I outlive this UC thing and maybe something will come along in our life time.  It may be a pipe dream but I can still hope.  Again thanks for your kind words, I will keep posting.  I like to think I contribute just a little bit to this wonderful onsite community.

MyUC smilewinkgrin

Posted 10/5/2010 1:26 PM (GMT 0)
MyUC

I agree there seems to be a rooting section here for surgery. Weird since I think those that had successful surgery would not be posting, they'd be out living and UC would be a distant memory. I'm a person who thinks the best of people so perhaps they are here as a public service, because they feel so wonderful they want others to feel great also.

I think this and other boards go through waves of different majorities. At times I felt in a VERY small minority of people helped by the Specific Carbohydrate Diet with several individuals ALWAYS making negatives comments. But I continued posting because I have achieved significant remission with it and am paying back my success by leaving notes for others to help. I bless Elaine Gottschall (deceased) for developing the diet that doctors ignore or dispute.
I now know that I have to be the one making decisions for my health, gathering information, being my own guinea pig.

I will never go for surgery (except life-saving emergency type) now that I know my UC can be controlled with diet.
I still take Balsalazide because it has no side effects for me.
I know those who had surgery had no other choice because no one would choose it lightly.
We are all in the same lifeboat, making the best decisions we can with the knowledge we have today.
It's my life and I have approved this message :-)
Posted 10/5/2010 3:57 PM (GMT 0)
Here is an encouraging article for those who may need to hear something positive!

Potential New Treatment For Ulcerative Colitis Following Discovery
Main Category: Crohn's / IBD
Also Included In: GastroIntestinal / Gastroenterology
Article Date: 15 Jun 2010 - 2:00 PDT


email to a friend printer friendly opinions


Current Article Ratings:

Patient / Public: 4.71 (7 votes)

Healthcare Prof: 4.5 (2 votes)

Article Opinions: 1 posts

McMaster University researchers have identified a specific chemical that may trigger remission in patients with the debilitating disease of ulcerative colitis.

The team from the Farncombe Family Digestive Health Research Institute has found that people in long-term remission of ulcerative colitis have elevated levels of the same chemical, prostaglandin D2, which they previously found to be important in promoting healing and maintaining remission of the condition in laboratory rats.

"The levels of prostaglandin D2 were only elevated in those patients in long-term remission, and that suggests it is a key factor in preventing new episodes of ulcerative colitis," said John Wallace, director of the Institute and a professor of medicine for the Michael G. DeGroote School of Medicine.

Ulcerative colitis impacts 100,000 Canadians and millions worldwide, but has an unknown cause and limited treatment options. Most people are never cured, and often require surgical removal of the colon.

The discovery may lead to a new treatment for inflammatory bowel disease which would promote production of prostaglandin D2, Wallace said. "It is entirely possible our findings could extend to Crohn's disease as well."

The study by Wallace and post doctoral student Linda Vong with colleagues from the University of Calgary is being published in the prestigious journal Proceedings of the National Academy of Sciences (PNAS) on June 14. Funding for the research was provided by the Canadian Institutes for Health Research and the Crohn's and Colitis Foundation of Canada.

Source:
Veronica McGuire
McMaster University
Posted 10/5/2010 9:30 PM (GMT 0)
Disneynut-Are you SURE it's from the 6mp? I recommend getting a screening for other joint issues before going off of it. If you were on pred fora long time it might be osteopenia, so be sure to get a bone scan.

My UC: It's possible to have great success with meds, I'm living, breathing proof. I've not been ill with UC since going on azathiprine/ Imuran (though I think I might have a bit of IBS) and am doing great. But, since I'm busy and able to do a lot more now, I find it hard to get time to post. It's a lot easier to post when you're spending most of your time on the toilet, lol.

But yeah, eight months and I'm absolutely normal except I have to watch alcohol intake due to the meds and make sure I eat breakfast with them. I go to class, meetings, the beach, play soccer and do karaoke with no issues, it's great!

imagardener-I'm fairly convinced that anyone helped by a carb-specific diet has a different subtype of UC or an autoimmune disease similar to celiac's. Needs more investigating though.
Posted 10/5/2010 9:41 PM (GMT 0)
Malkavian and MyUC - Both of your stories have made me feel very positive about giving Imuran a try. Thank you!
Posted 10/5/2010 11:47 PM (GMT 0)

thatfield:

Your welcome.  Don't worry I will be around here and keep posting.  Thanks again.

MyUC

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