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JM
Regular Member


Date Joined Jan 2008
Total Posts : 28
   Posted 1/9/2008 7:42 AM (GMT -7)   
Having just been told I have UC in December, just how long do you have to be without symptoms to be considered in remission?

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 1/9/2008 7:51 AM (GMT -7)   
Hi JM, welcome to Healingwell. Everyone has their own definition of remission and the duration of lack of symptoms. For me, if I have no symptoms for about a month then I consider myself in remission. What medications are you on at this time?
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Allegra & Singulair
~Secondary Reynauds Syndrome - '04 - Norvasc~Fibromyalgia - '06~No meds
To help Healingwell - click here: DONATE
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"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 


JM
Regular Member


Date Joined Jan 2008
Total Posts : 28
   Posted 1/9/2008 10:04 AM (GMT -7)   
I was on Colazal for 10 days at 9/day. Bleeding stopped but other symptoms (bloating many trips to the restroom, aching in the left side) were still present. My Doctor cut the amount to 4/day and bleeding returned. I took my self off of all meds on the 2nd and began my own treatment and have been free of all symptoms for the last 9 days. I was within 2 weeks of my 61st birthday when diagnosed with this disease. I made a life change in a physical nature 3 years ago. After that I developed (according to my Doctor) allergies and was put on singular and claritan. I began to have arthritic symptoms in my hands and shoulders. I was also diagnosed with asthma and was given inhalers. I began to have eye problems. I was also give a diuretic for ankle swelling. I am free from all of those symptoms except ankle swelling. I am
no doctor so I will not give any advice. What I have done is a risk I was willing to take at my age.

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 1/9/2008 10:21 AM (GMT -7)   
What have you used that has helped you? Just a question about the ankle swelling, have you had your kidneys checked lately? If you have anything wrong with your kidneys it can cause swelling in your ankles (my gma had this and so did my father in law). Just curious.......
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Colocort, Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Allegra & Singulair
~Secondary Reynauds Syndrome - '04 - Norvasc~Fibromyalgia - '06~No meds
To help Healingwell - click here: DONATE
http://www.myspace.com/82595818
"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 


JM
Regular Member


Date Joined Jan 2008
Total Posts : 28
   Posted 1/9/2008 10:42 AM (GMT -7)   
I started back smoking. Within 4 cigarettes the pain was gone. Within 24 hours there was no bleeding, no abnormal gas, bloating and associated swelling had virtually disappeared and has completely disappeared now. I am back to one trip to the restroom once a day. I look like I have lost 10 pounds but haven't. It was I just so bloated. It appears from all of the reading that nicotine is an anti-inflammatory drug and that it along with the nitric oxide has some beneficial benefits. My ankle swelling is possibly a liver problem since that was the enzyme that showed up. My ankles are not as swelled as previous but I still take the diuretic every other day when I can remember to do it. I am a firm believer that genetics play the biggest portion of our health well being. No one in my family has had lung cancer and my granddad smoke Prince Albert and had to roll his own. Congestive heart failure is the only know genetic problem in my family. That is what my granddad died of and my mother. My mother never smoked and she lived to be 82. My grandmother died of blockage of the colon when she was 85. The doctor said she had colon cancer but they did not do a colostomy because of her weak condition. It is possible it may have been UC (only guessing). I have decide to take my chances at my age to smoke. I use to have to pop my thumb joints to be able to touch the pad at my little finger, but now that is also gone.

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 1/9/2008 1:18 PM (GMT -7)   
Hi JM,

I developed a kidney disease called Minimal Change Disease and I believe it was from taking Sulfasalazine and Asacol (if you are hypersensitive to 5ASA drugs it can cause it - check the drug websites for side effects, it lists Nephrotic syndrome or renal disease then you have to search that for Minimal Change - hard to make the connection). The side effect of minimal change disease is edema in your ankles. Also if your urine is frothy in the toilet bowl (means you are spilling proteins). I would ask your GI or primary care to check the protein levels in your urine.

I had edema for 7 years (right after I started sulfasalazine) and every time I went to the Dr. they had no clue, some said it was my shoes causing it some just ordered more tests that proved nothing!...........until one day GI decides that I should have yearly tests to check for proteins (everyone on 5ASA's should have them!). Had a biopsy to confirm it and now and trying to find the right cocktail of meds to put it into remission.

I was so mad at all of them for not figuring it out and I was the one that made the connection to the 5ASA's probably causing it and brought it to their attention (they can't say for sure what it was that caused it but I am 99% sure).

HTH!
Beth
Beth, 32
Major Flare Sept/Oct 07 ~ working on remission almost there
UC Diagnosed March 2000 (30 cenitmeters)
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60/40mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Potassium 600mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


JM
Regular Member


Date Joined Jan 2008
Total Posts : 28
   Posted 1/9/2008 3:03 PM (GMT -7)   
Hi Beth
My ankle swelling has been going on long before I was diagnosed with this disease. It doesn't bother in any way. I feel bad after reading all of these posts. I am just thankful I really don't have any problems in comparison to others on here and I am grateful for that. The doctor told me that 20% of my colon was affected. Is that a small amount. Anyway I will continue to smoke and may be keep this in remission. I took myself off my meds and am doing 100% better now that I started back smoking. Only time will tell if I made the right decision. I currently have not had a trace of symptoms since the day after I started back. Smoking is working for me but it might not work for others. I do not encourage anyone to smoke. At age 61 what the heck, I am just glad when I get up that I see daylight. Most people are worst off than me. The bad part about being 61 is that my mind still thinks I am 40 and I now feel that way again. Energy level is better, I am working out every day, and life is great.

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 1/9/2008 3:36 PM (GMT -7)   
Hi JM, totally understandable, I am glad that you are doing good. For the first 7 years I did not need to take meds all the time then I had a horrible flare and now I have changed my approach. Everyone is unique and you need to do what works for you!

It's funny but I used to say the same thing almost that I was really lucky compared to others, I think we all get whacked w/something in our own way. Though I feel really bad for the babies and children that are flaring and their parents and well everyone....

As for the 20% i'm not sure if that is a lot.....my last scope showed 30cm affected and it had increased 5cm from when I was first dx'd 5 years prior to that. I know compared to some on here, I have a lot less of the colon affected.

I guess what I have learned so far is to enjoy remissions and call your Doc when you start to flare.

Stay Well!!
Beth, 32
Major Flare Sept/Oct 07 ~ working on remission almost there
UC Diagnosed March 2000 (30 cenitmeters)
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60/40mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Potassium 600mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.

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