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Trying Not to get discouraged.........need some support

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Ulcerative Colitis
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Posted 9/11/2009 9:28 PM (GMT 0)
I have lower end colitis and just cannot seem to get it under control. Urgency with a lot of bleeding and passing small amounts of formed stool. Went to GI doc and he upped my Colazol to 12 pills a day and rectal Rowasa enemas nightly, which I had been doing for 14 weeks already. He is trying not to put me on an immunosuppresant. I also do not do well on prednisone. He said I am having false feelings of having to have a stool due to the nerve endings will all the inflammation. Just do not seem to be getting any where and like all the rest of you am tired of it. :shakehead
Also on top of this I am losing hair due to the meds. Just needed to vent to people who know where I am coming from. Thanks
Posted 9/11/2009 9:54 PM (GMT 0)
Not to make light of your situation...but I would have a party if I had a formed stool!

I feel the same way which is why I've decided to stop fighting my GI and go for the Remicade! I start on 9/22 and I'm praying constantly that it works because my next step will be ileoanal pull through.

Hope you find something that works for you!
Posted 9/11/2009 10:00 PM (GMT 0)
I lost hair for a long time when I started taking Asacol but it seems to have stopped and my hair is growing back. Maybe it is a temporary problem? I hope the increase in dose helps you. I know some people really only have luck with pred and since you can't tolerate it, you have to be patient if you're serious about staying off the immunosuppresants. Have you thought about using a canasa suppository in the morining along with your other meds? Can't hurt. Have you changed your diet at all? I notice when I avoid grains and sugar, I am a little better. I can throw myself into a flarelike condition from eating really bad foods. Yesterday I was crapping all day because I ate poorly.
Posted 9/11/2009 10:06 PM (GMT 0)
psychocolon I understand exactly what you are going through. Its ok to get discouraged because its all a part of our lives. The fact that people may have it worse than you is of very little comfort to you I bet. There is ups and downs with disease so hang in there until you experience your next Up. You are not alone and maybe talk to your GI about adjusting your meds to make you more comfortable.
Posted 9/11/2009 10:13 PM (GMT 0)
psychocolon - been there. It sure does get old, doesn't it?
Have you tried probiotics?
I hope you can get that bottom part healed up because that sure will help with the feeling of "needing to go."
You say you don't do well on pred, but have you tried cortifoam or cortenemas....?
And, yes, the hair loss tends to stop at some point, I've found.
Hang in there! You sure have company here that know how you feel!
Posted 9/11/2009 11:48 PM (GMT 0)
Love the name, psychocolon!!!!!!!!!!!!!! Hang in there, like others say, the hair loss seems to slow down. Mine has for sure. I am on colazal. Didn't know you could take 12 a day. I may try that as I am experiencing some problems right now. Some people take biotin for the hair loss. I bought some and never took it. Just forgot about it till now.
Posted 9/12/2009 12:52 AM (GMT 0)
Hang in there...just wait it out and it will go away!!
Posted 9/12/2009 2:03 AM (GMT 0)
I didn't lose hair on Asacol, but I lost it a bit on Rowasa; I'm tapering now and it seems to have stopped. I would also go ahead and try a steroid enema. At least it's less systemic than pred so it shouldn't bother you as much. Good luck
Posted 9/12/2009 3:45 AM (GMT 0)
Maybe ask your doc for cortifoam rectal meds, it's the only rectal meds that help me and alot quicker than 14 weeks too.

:)
Posted 9/12/2009 3:56 AM (GMT 0)
Yes, I can relate to where you are coming from!!!!!! I am in the same boat, but have been trying to get this latest flare under control with Pred for the last 2 months.. I was doing fine until I got the taper down to 15mgm then my flare kicked back up so tomorrow I go back up to 40mgm until the bleeding stops again and then start tapering again all over... I'm seriously going to start thinking about my diet now too... I eat pretty much what I want most of the time since I don't have many other symptoms except bleeding.. (if I had major cramping and D, I'm sure it would be easier for me to modify my diet and stick with it) but now that I'm unable to get the bleeding to stop... I'm seriously going to do some research and see if there is a diet out there that will help... I don't know... I'm just totally frustrated right now... I am even considering surgery but after reading some stories about people getting ostomies.. that even scares me too....
Posted 9/12/2009 5:08 AM (GMT 0)
psychocolon...was Colazal the first 5ASA oral med you were on or were you changed from another one?

I agree to try the steroid enemas.....

When were you last on pred?

q
Posted 9/12/2009 5:20 AM (GMT 0)
In the last month I lost about half my hair and eyebrows. My hair is now starting to grow back. The new growth is very soft and silky. I had my hair cut very short to hide the hair loss. My kids tell me it looks better than before! I have not had this happen before with a flare but the one thing I've learned with this disease is to expect the unexpected and just roll with it.
My heart goes out to you. UC can be very overwhelming and depressing. It will get better. Please know that you are not alone.
Posted 9/12/2009 6:05 AM (GMT 0)
Lost 25% of my hair to Asacol years ago. google SCD (Specific carbohydrate Diet) I'm 10 days in and it is awesome. i thought I was going to die 10 days ago. So So severe. I also hate this disease but am realizing on the diet how crappy I used to eat. I can not believe I am starting to feel so good - I know it's a long long long road for me but I am finally getting excited about my life again. Get that gut re-populated. Get on a good Lact-acidophilis probiotic - NO BIFIDI.
P.S. all the hair has come back - curly that is but thick! Good luck to you!
Posted 9/12/2009 10:01 AM (GMT 0)
Thanks for all the replies. I was on Asacol for a long time when I first started 6 years ago and then it did not do much so switched to Colazol which helped till now. Spoke with doc about that and did not feel that switching back to Asacol would make a difference due to where my disease is. Tried oral pred years ago and could not even hardly get out of bed. Tried the steroid enemas for a week last month and could not tolerate the side effects also. So you can see where I am getting frustrated. Also used the SCD diet for quite awhile when first getting the disease. However, do not know if it was a combination of the diet and Asacol or just the Asacol that got me better but not completely. Actually, have been trying the SCD as we speak. And yes, I take tons of probiotics........VSL#3 so I have most of my bases covered. That is why this is so depressing.
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