lemonhead thankyou another question for you

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brynheulog
New Member


Date Joined Mar 2007
Total Posts : 5
   Posted 3/23/2008 9:32 AM (GMT -7)   
Thank you so much for your post [img]/community/emoticons/smile.gif[/img]
I have done double enemas for the past 2 nights and see a marked improvement although the bms are quite thin but are formed. The pain is much reduced and I have very little gas now. I feel much stronger in my abdomen but an still very lethargic. (I think a side effect of the Asacol)

My questions to you now are

1. How long do I need to stay on the double enemas (my thinking is another week)

2. Do I then go 1 enema one night and 2 enemas the following night etc if so is that for another week or should I do it for a couple of weeks?

3/When I manage to get to only one a night how long before I can try and taper them(may be 4 weeks)

Sorry to be a pain but I feel you input has given me hope at last that I can get nearer to remission. I go on holiday abroad in 6 weeks so I would like to be stable by then

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Post Edited By Moderator (tjf) : 3/23/2008 7:21:17 PM (GMT-6)


lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1028
   Posted 3/23/2008 11:25 AM (GMT -7)   

OK, so, this is what works for me, and it may be different for you, so you may have to mess around with it for a while.

I take 2 enemas at the same time.  My docs thinking is that if you take 2, it forces the medicine deeper into the colon and it reaches more of my inflammation.  There is really no need to taper off these enemas.  I know they are a pain in the butt (pun intended), but they do help.  If I feel stable, I will cut down to 1 a night.  But if for any reason I feel crummy the next day or have increased BMs the next day, I go right back up to 2.  Fortunately for me, I have great insurance and the cost of the enemas is not a problem, and it is WAY better than being stuck on prednisone.  So, my advice to you would be to listen to your body and take the 2 enemas when you think you need them.  I just went on vacation with my hubby and I just took them before we went to sleep.  Better to have to lay in bed for a couple of hours (you have to sleep sometime) than have UC ruin your vacation.  I have never tried to go completely off the enemas.....too scared of what could happen, so you will have to judge that for yourself.  Sorry I can't answer that question for you.

As for the fatigue, I don't think that is due to the asacal, although I am no expert.  I think it is you not being able to eat right and not feeling up to doing what you want to do.  When I started to feel better, I noticed a marked increase in my energy.  I went from missing 3 weeks of work to slowly getting into it.  I went half days for almost 2 weeks after that, and then full time, then I started adding back exercise.  The exercise makes a world of difference.  I also added bee propolis to my supplements.  I don't know if it is one thing or a combination of all, but I am unwilling to take anything out because I am scared I will relapse. 

Best of luck, have a great vacation, and I hope you feel well soon.


diagnosed with left-sided UC in 1997.
Currently on 10mg Prednisone
12 caps of colazal
rowasa enema nightly
35 years old, white, female


brynheulog
New Member


Date Joined Mar 2007
Total Posts : 5
   Posted 3/23/2008 11:51 AM (GMT -7)   
what kind of exercise do you do as soon as I try to do anything my colon starts to ache or burn

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Post Edited By Moderator (tjf) : 3/23/2008 7:20:43 PM (GMT-6)


lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1028
   Posted 3/23/2008 5:35 PM (GMT -7)   
Right now I am training for a short triathalon. Mostly running and swimming. It is too cold to bike right now, and I prefer to do something inside....closer to the bathroom. I also do some light lifting to ward off the osteroporosis. It actually helps my UC, but it could be different for you. Have you tried to up your asacal? I used to take 12 a day. My enema is liquid as well. I don't know if that makes a difference or not. I am also trying to cut out all processed foods, and cut way down on salt and sugar. It is not going very well, I cheat a lot, but even cutting out a little bit seems to help. I have read that anything with High fructose corn syrup should be strictly avoided. So, I have tried to abide by that. My GI doc tells me that there will be a new drug out in July that will help out a lot. He told me that name of it, but I can't remember it. There are also some really interesting things going on in Australia. NV-52 from Novogen looks really promising. I look at it this way.....lets try to get me to a "livable" state until something that will really help me out comes out.
I have also tried acupuncture and that seems to help out as well. Lots of people don't believe in that, but I am at a point where I will try anything to keep my colon and keep functioning like a "normal" person.
Oh yeah......try not to stress......it is a killer for me. Good luck and keep me posted. You will be in my prayers.
diagnosed with left-sided UC in 1997.
Currently on 10mg Prednisone
12 caps of colazal
rowasa enema nightly
35 years old, white, female


brynheulog
New Member


Date Joined Mar 2007
Total Posts : 5
   Posted 3/24/2008 5:32 AM (GMT -7)   

hi No I havent upped my tablets as I can feel a bad headache looming(used to get bad ones that lasted 5 bays when I first went on the asacol)  I am drinking loads of water as I can feel the enemas drying out my system.

I try to eat a health diet no processed foods.  I make everything from scratch.  I find anything with processed sugars are a killer for me. I also don't drink tea coffee or alcohol I definately think yeast/candida are an issue for me and am looking into the anti fungal diets at the moment.  My little boy starts school after Easter and my priority is to find something that really works for me.  I do take probiotics  but I don't think they are very good so I intend to look for vsl 3 not sure if it is available in the uk.

Stress is also a very large problem for me I have 4 children 2 grown ups who live away from home(one has a little 5 year old boy) and 2 little children and also a step daughter who visits often.  My husband works a very stressfull job with extremely long unpredictable and on call hours as a scenes of crime investigator he often gets called out at night  but this does mean I am not under any pressure to work at this time although the extra money would help with the large debts we have.(I feel the need to spoil my children as I am pretty usless to them in any other way but am hoping this will improve)

I have just had a few session of reflexology which has helped with some of my other issues but seems to make the uc worse.

I am having a day in bed today because I am also fighting a eye infection and a chest infection it never rains but it pours!!!! sad

I really appreciate your interest I no longer feel I am dealing with this on my own


Current medication
For ulcerative colitus asacol 3 x 2 daily 2 x asacol foam enemas 1 morning 1 evening(cuurrently doing them both at night) spasmonal 2 x 3 daily(anti spasm) probiotic 4 x daily
folic acid
omega 3 (helps with the depression)
For asthma ventolin inhaler serevent inhaler
I also suffer witn endometriosis

 


 


lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1028
   Posted 3/24/2008 10:48 AM (GMT -7)   
You are never alone. There are tons of people on this site that can help you. I also have 2 kids, and I feel like spoiling them as well. They are 5 and 7. I understand your situation.....I am constantly breaking promises because I don't feel well enough to do something I told them we would do. I do work, but it is a very flexible job, but I am sure it will be over in May 09, so that is a little stressful. Not sure what I will do after that.
It is great to drink water....I have issues with kidney stones as well, so it may prevent you from getting those. I take a probiotic called Dr. ohira's 12 plus. It is suppose to be pretty easily tolerated. I order it online at the cheapest place I can find. Also, I take bee propolis, and that seems to help a little. I think there is a thread on that at the moment. You may want to try that (but only if you arent allergic to bees).
I sure hope you feel better soon. Rest up and get rid of the eye and chest infection and then work on the UC. It is a long road to recovery, but well worth it.
diagnosed with left-sided UC in 1997.
Currently on 10mg Prednisone
12 caps of colazal
rowasa enema nightly
35 years old, white, female

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