worried

It sure is a tough road isn't it? I've been dealing with it on and off since 1980. I'm also taking 9 Asacol per day, I quit the mp6 about 3 months ago, and currently doing the steroid e's. I just started those last evening. Colazal seemed to make me worse so I quit that after a week. I'm trying to avoid Prednisone.

Mine is usually only left-sided, so I've never really opted for surgery.  I just didn't want to alter my body or cause any more complications, etc.

You may wonder...how I endured this for 30 years!!! Well, it comes and goes. Right now I'm also pretty bad, but I always have faith that it will settle down in about a month...and life goes on. I eat differently now, almost no preservatives, no soda, not as much alcohol, and more greens, vegetables, etc. For a while I went into a complete remission, so I think there is some connection between diet. Anyway even though I'm like you right now I'm still managing to get to work. Amazing huh? So when it settles down (hang in there, it always settles down) I usually feel like I'm in heaven, and even the greatest problems on earth seem like nothing to me.

-John

Post Edited (desdwel) : 10/21/2009 9:00:17 AM (GMT-6)

I have not been in remission since the begining of February. That is when they started the prednisone (40mg) and cort enemas, and had some relief, but not full remission, that is why they started the 6 mp. I haven't had a drink since that time ( no big loss), but like you have been eating a bland diet (LOTS of turkey sandwiches)

Also with the bloody stools, most mornings are fine; soft stools. But then in the afternnon it gets worse....they tel me to sleep with the cort enemas, but usally I can'thold it in for more than an hour or two. So I just lay on my left side on the couch and watch hockey while the meds absorb.

Just frustrated.......

my advice would be to just keep trying new things and hopefully you'll find something that works for you, wether its a change in diet, probiotics, the spinach and sunflower seed thing, things like turmeric and ginger, or the fecal transplant thing thats been discussed recently.

also if you're worried about having to go the surgery route then maybe you should do some research on it to put your mind at ease. i've looked into it and most people who have done it are happy with the results.

i wont go for surgery until i've tried everything and exhausted all the options but i know that if thats what happens then i'll be ok.

good luck, chin up, i'm sure there's something out there that wiil help

I've realized that everybody's UC is very different and like what others have said, keep searching for what might work for you diet-wise and treatment.

In an acute situation like what you're having, unfortunately, the Western medical/drug route is pretty necessary to get things under control. You HAVE to watch your diet and rest a lot. If you're not finding results or feeling better with turkey sandwiches, change it. Go for soups, something that could calm the stomach like chicken noodle or winter squash. The less the ingredients the better, the purer the ingredients the better. I've found that miso soup, not the powdered kind but the paste kind, really helps when my gut feels upset. Also nothing raw, no fruits or veggies, for me is another. Diet is huge and you gotta listen to that body because if it doesn't settle it, it's not gonna help, especially in your condition.

Seek alternative practices. I have seen acupuncturists, homeopaths, chiropractors, herbalists, yoga etc. to help me with this. Some worked and some didn't do a thing. What has kept me on some path is Chinese Medicine. I found out that my body was thermally cold so I started eating warm foods and who would have thought that red meat (organic and grass fed), 4 times a day is what my body needs to start digesting food. In the mean time, I've read that red meat causes stomach irritation but not for me. It has totally helped me out but for certain, it might not be what you need.

I guess what I'm really trying to get across is that you have to think outside the box and help yourself with all this. I believe it can get under control and stay that way once I realize what my body needs to function properly and it is such a slow process and in our world, patience is hard to practice. I've been in your situation. Tons of drugs and little to no results, big time anemia, weight loss, hospitalizations, you name it. So I stopped putting my fate in the GI's hands and started to do research and figure it out for myself. I ain't there yet and might never get there, but I'm getting better.

Oh last thing. Try and work on distracting your mind from the fear and worry this disease puts on you. The mind's part of the body and emotions like that hinder you from getting better. Don't fear the drugs or even surgery. I realized once I surrender to it all, my symptoms get better and I end up not having to take the drugs or better yet consider surgery. Geez, I hope this all helps...

Six-10 is not too, too bad. I'ved been there many times. Are you feeling OK? You probably need to up your prednisone, which do you fear most, prednisone or surgery?? Sorry, not a fun choice.

I kind of wish I had surgery when I was younger...but now there is Remicade which has put me in remission, so I guess I'm glad I didn't...

rudeman said...
I've had UC (left sided) for 5 years now, now gone to moderate to severe disease.  I am on asacol 9 pills/day, steroid enemas, prednisone ( now tapered to 10 mg/day) and 125 mg 6-MP.  My last 2 blood tests, my liver enzymes has been elevated, asacol switched to Colazal, still having some issues with bloody stools, tons of gas, Will I have to go back up on my predisone (big fear of mine), if they have to stop or decrease my 6-MP?  Still haing 6-10 BM/day(some formed/ some bloody D), I just feel like I am delaying the end-point of just having surgery ( another fear of mine) , or am I just being more nervous than I should be?

   Any feedback or personal history would be great.....................

Thanks,

much depends on whether an overall health progression can be seen after each relapse.