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newbie to UC
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stone07 posted:
Wow where do I start. I am 25 years old as of yesterday and also as of yesterday it was confirmed I have Ulcerative colitis. I had my first colonoscopy last week and I must say that took a toll on my flare up!! I hope to never have to do that again while suffering from a severe flare up!
Well I have suffered with the UC symptoms off and on for years. I never knew exactly what the issues were and they always went away in about 2 to 3 mths and never got as bad as they did this last time. In January I wanted to lose about 10 pounds and started in a on a healthy diet. Worked out everyday, ate all whole grains, started taking fiber, started the probiotics, fresh fruits and cut out soda. Within a mth I could see the difference in my stomach. Once again I thought it would go away in about 2 to 3 mths and kept doing what I was doing. 5 mths later and steadly getting worse I had to go the dr and the weight was pouring off and I had quit eating healthy mths ago. After my one year marriage anniversary trip out of town went awful and couldnt leave the hotel room, I knew I could wait any longer. I let it get so severe that my entire colon is covered in ulcers. I havent left my house in 2 weeks and I have lost 20 pounds in the last 3 mths.
They started me on Asacol the day after my colonoscopy. Found very little relief from this medicine. Yesterday I woke up and realized that I was passing the pills whole through my bowels with an hour of taking it. Seems like my GI tract runs 50 mph! lol Of course I called the doctor and they started me on prednisone. After reading articles on prednisone, I am very nervous about taking it. The ups and downs, the weight gain, the coming off of it. I feel a lot better today and I have only taken two doses so maybe its all worth it.
My number one question is, How do you all deal with the depression from this. I dont want to take an antidepressants(its just another medicine ill have to take and more side effects I dont need) I have never in my life been a sick person but this has taken a toll on my emotions. I find myself crying for no reason!! I feel like UC is neverending and there is no light at the end of my tunnel! I am always hungry bc things pass through me within minutes of eating it, I am always thirsty and dehydrated and I get no sleep bc of the frequency of bathroom uses, and the only thing that doesnt upset my stomach right now is chicken noodle soup!
Any advice on diet tips, depression tips, positive advice is welcome! I need to know that there is light at the end of my tunnel!! My in-laws paid for a cruise for me and my husband to go on about 2 mths ago and its in 2 and half weeks!!! I have got to get back up on my feet!!
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miserable_sob responded:
Try hunting for alternative cures. From what I've been through, everything my doctor prescribed to me was a bandage cure at best that never stopped the bleeding. I'm sitting here with a J-Pouch now cuz all the meds I used (too much to remember) were a failure. Mind you I'm not saying the alternatives will do the job either, I just know from experience that everything is bunk.
 
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sheba_q responded:
Keeping reminding yourself "Rome wasn't built in a day." You've had this for years - taking meds for a few days/weeks isn't long enough to make a difference. Sadly there is no such thing as a magic pill that's going to make this go away with just one dose.

Here's an IBD starter diet. One of the fun things we get to deal with is that there isn't a set diet, other than "don't eat what bothers you" - like that helps when it seems like pretty much everything bothers you.

* eat smaller meals at more frequent intervals
* avoid eating many processed foods
* avoid citrus fruit and anything highly acidic
* reduce the amount of rich, greasy and fried foods
* limit consumption of milk and milk products
* restrict your intake of high-fibre foods
* avoid whole corn (inc popcorn)
* cut back on sugary foods
* avoid alcohol (esp beer)

As much as you may not want to take another pill, it's probably in your best interest to right now. I'm weird with antidepressants (the standard SSRI's that they prescribe do nothing for me) but I'm not against them. You're having a difficult time and you need help coping. Also small doses of antidepressants are prescribed to calm the 'second brain' we have in our belly, so taking one could doubly help.

What you're seeing may only be the shell casing and not the whole pill. It comes up on here every so often with Asacol.
 
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arbob5 replied to sheba_q's response:
While prednisone has many side effects, it is usually very effective in treating UC. The tapering of the drug can be difficult, but then again, the relief it can bring, is, as you put it, well worth it.

And there are other meds out there, similar to Asacol. I'm on Lialda, which along with prednisone and probiotics, really has me on the right track. Of course, while in remission, we always know that could change over night. Diet is important, and suggestions from sheba_Q are very good...experience shows with what sheba is suggesting. Pay attention to it....I love certain foods that I absolutely know I cannot have. So, after I realize that no flare is so doggone much better than even a minor flare, I stay away from those no-nos.

Once you find the right combo of meds, you will notice the difference. Probiotics could help you. Keep us posted on how you're doing, and don't be totally afraid of prednisone. It is a good/bad drug, but it is usually very effective in treating UC.

Bon voyage by the way. I'm sure you'll feel much better soon and will be able to enjoy your cruise. Let us know how you're doing, ok?
 
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stone07 replied to arbob5's response:
Thanks for the diet tips! Before the this last flare up, when I changed my diet around I was doing the probiotics and doing a high fiber diet. I know this could be way out there and I could be totally wrong but everytime I would eat my activa or the benefiber in my water bottle is when I was hurting the worse. Right now the dr has me on a low fiber and low residue diet and frankly I am scared of fiber bc of the way it was making me feel.
I go back next tuesday for my follow up and I know I have a lot to learn. Im just a little gun shy when it comes to eating anything! Anything besides chicken noodle, crackers, and grilled cheese sandwiches are the only things not sending me to the restroom every two seconds.
As for the pill, It was the entire pill! scared me bc I have never heard or seen anything like that. After reading articles on it, found out its pretty common. The prednisone is working amazing at the moment. Just within 2 days its like a night and day difference! Im still suffering from the frequency of restroom visits but I have cut it down to a quarter to what I was doing which is such a relief! The dr did give me a "anxiety" pill for my stomach called labrix and really didnt do much for me. But I have anxiety issues that are just awful and I know having UC really feeds into that anxiety. Im going to see how things go over the next week and see if the depression gets better now that I am finding a little relief. An extra pill just might help.
But thanks for all the positive feedback! I have a long road ahead of me of learning and educating myself and really getting ahold of this!
 
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rayeshope responded:
I was diagnosed with UC in January 2011. I was pretty severe by the time I had my first colonoscopy in January. Similiar to you, I was mainly healthy most of my life and it took a lot for me to admit I was unwell and needed help. I was started on high dose prednisone right away, along with a mesalamine enema nightly. My symptoms were relieved within a couple of weeks. I too had an upcoming trip scheduled and was so pleased to be feeling well for the trip. Unfortunately, I was titrated too quickly off the prednisone and was the worst in April. I had to go back on prednisone and am still on it. The prednisone worked within 10 days and I was feeling well. I am titrating very slowly this time. I am also taking Balsalazide and the mesalamine enemas. I was so worried about the side effects of prednisone but unfortunately, it is the only thing that seems to work. Honestly, I have no visable side effects from being on the drug for 6 months. I have not gained weight yet. I was worried about acne and it has not been an issue either. I do take an antibiotic to prevent breakouts though. I also take 1200mg of calcium with Vit D, fish oil, an antioxidant vitamin, daily. I make sure to remain active everyday. It helps with physically and mentally. I struggle with depressive thoughts. Especially, in the beginning. But, being very sick in April put things in perspective too. I try to remind myself each day that I am well so I need to enjoy the day and live. I never want to be sick in bed again. It helps me. I go through the emotions of sadness and anger, but I think I have finally accepted the fact that I have a chronic condition that I will need to deal with from now on. I worry that I may not be able to come off the prednisone again. If I can't I will need to try different drugs. It is still so early, there may be something that works well for you. Don't give up or in. There is so much research being done. There are so many alternatives. Read as much as you can about the condition. It may help you feel in control to know exactly the right foods and vitamins to take in daily. I hope you are well for your trip.
 
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arbob5 replied to rayeshope's response:
Tapering your prednisone is always a hit and/or miss thing. It is probably the best drug in controlling UC, but then again, not for everyone. Strange how that works.

I've been on it for about 4 years...sounds ridiculous, right? But I also have arthritis, having had left hip and right knee replaced because of it, thus the reason for my prednisone. When I was diagnosed with UC, I was put on a higher dose then to control the diarrhea. I tried to taper, and sometimes with success, sometimes not. It seems when I would get to a certain point, maybe 10 mg. or less, then the flare would come back. But since I started on probiotics, I am now down to 5 mg. and feeling quite good about the whole thing. I will be there for awhile, and then taper down by 1 mg. every month (my gi's doc suggestion) because he said we don't want to jolt the heck out of my colon, so we'll take it slow. I'm sure it will work. I'm thinking positive about it, and just being down to 5 now is such a improvement over the higher dose I was on (40 mg. at one time but only for two weeks). As I said tho, it usually does work for UC.

Let us know about your progress. And keep your chin up. Positive thinking really does help. If you get down, get on this site and unload on all of us. We can take it because we've been there and done that. We really do care about each other and want to help in any way we can.

Have a good day, OK? Keep us posted.


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