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nellewbl
New Member


Date Joined Aug 2008
Total Posts : 10
   Posted 8/29/2008 3:03 PM (GMT -6)   
Hi folks, I am new to this forum, although not new to UC.  Some background on me:  I was diagnosed when I was 14 and have made it to the ripe old age of 29  yeahI have been fortunate enough to have a wonderful GI doctor (the same who diagnosed me in fact) and an awesome mom and boyfriend who help me through the rough times.  I am pretty sure I told him on the first date exactly what he was getting in to  tongue .  The major misstep I have had was when I was just diagnosed and we discovered I had a severe allegry to Sulfasalazine.  I thought it was a miracle drug as it made me feel exactly as I had before being diagnosed.  But, that was just the calm before the storm cry  .  The reaction was such that my body was destroying all my red blood cells and ceased making any at the same time.  They said that I lost 1/3 of the blood in my body before they figured out what the problem was.  I do remember that the day they told us to immediately come to the hospital, I couldn't walk across a room without getting dizzy and a pounding headache.  Lack of blood in your body will do that...  I also remember that the nurses kept popping their head into my room.  Later I found out that they wanted to see what a person who had lost that much blood internally looked like.  Well, I am black, so I really didn't look that different and I think they were disappointed  smhair  .  Anyhoo, luckily I was young enough to mostly focus on the fact that I got out of school for a week, got tons of visitors, and had "room service."  And, at least now I know I am allergice to Sulfa drugs.  So, a win win situation!  Well, not quite, but you get the picture.

 

Since then, I have had about 3-4 moderate to severe flare-ups a year that last about 2 weeks or so.  And, I am sorry to say, my flare-ups are sometimes the result of my getting complacent with my meds.  The "Maintenance Drug Syndrome."  I take my meds, feel great, oh, it's okay to skip a dose or two, what's the harm?  I feel great!  1-2 weeks later of this and bam...flare up city.  Also, I tend to get flare-ups when I am under a lot of stress, mostly work stress.  I know how to fix the first problem...take your pills you dope!  The second one, well, I am still trying to figure out how to control how stress affects my UC...any suggestions are most welcome.

 

Well, here I am in a flare up and my question is, what do y'all take or do to ease the pain that is over the counter?  I am mostly dealing with bloating, fatigue, some blood and mucus, diarrhea, and horrible cramps when having a BM (Right now the BMs take a long time... lets just say, I am finishing a book solely in the bathroom right now... shakeheadMy doctor is moving his office today and I would really like to have some relief for the weekend.  What helps y'all get through the flare-ups?  Thanks so much!

  • Diagnosed in 1994 at the age of 14
  • Initally prescribed prednisone and Rowasa enemas - near immediate improvement (Yay!)
  • Within 1 - 2 months later, prescribed only Sulfasalazine - Yikes! Severy allergic reaction!  1 week in hosptial with 4 blood transfusions.  Then prescribed Asacol - Phew!
  • Mid 2008, tried Lialda - NO!!!  Caused flare, pills to big to swallow! 
  • Back to Asacol - 400 mg tablets, 3 pills, 3 times per day, and a daily multivitamin
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/29/2008 4:16 PM (GMT -6)   
Welcome to HealingWell, Nellewbl. We're very glad to have you here. I love your attitude, it's great - "okay, I messed up and now I'm flaring." Obviously you learned long ago that "why me?" doesn't work well for us.

Now let me try to think back; I've been in remission for 2 1/2 years, so things get fuzzy. I took tylenol only. I did find that warm moist heat sometimes helped - a warm bath or shower, or a heating pad. Sometimes taking some Gas-X or Phazyme will relieve the gas pressure. You may want to get back on that good old low-fiber, low residue diet unless you're having constipation.

I totally hear you about reading novels in the bathroom! I guess one way to look at it is, you're getting caught up on your reading.

Good luck, hope you have a decent weekend despite the flare. If it gets too bad, call your doctor's service or go to the emergency room.
Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


healinggirl
New Member


Date Joined Sep 2007
Total Posts : 9
   Posted 8/30/2008 12:00 AM (GMT -6)   
Hi nellewbl :)
 
I have never tried the Asacol or any drugs yet.  I've had U.C. since 2002.  I've just been afraid to try anything.  Does Anacol work? Does the Rawasa enema work?  Thanks,
Taylor
 
 

nellewbl
New Member


Date Joined Aug 2008
Total Posts : 10
   Posted 8/30/2008 7:32 AM (GMT -6)   
Thanks for the warm welcome Judilyn and healinggirl!

I will definitely try the tylenol and heating pad - that is a great idea for pain! And I never thought of the gas-x either. last night my boyfriend bought me some imodium A-D (he get's really upset when I am sick or in pain), but I have been scared to take it. I mean, if that is all I needed, wouldn't I just take that instead of Asacol? Or is it common for UCers to take anti-diarrheal drugs? I usually just kind of grin and bear it, but I am older now, no use sitting in pain if I can help it :) And, I think attitutue is so important. This is a horrible disease to go through and it can completely beat you down. We have been delt a hand of cards. Is it a bum hand, probably. Are we learning so much about ourselves, what we can handle, and the people around us, yes. Can we change it, no. So, I try to focus on what I can improve and go from there. Don't get me wrong though - no Pollyanna here! There are days I just want to lie in bed, and sometimes I indulge myself in a little pity party. "Poor me, poor me, pour me another" - well I don't acutally, drink, but you get the picture! Then, I say, "Pity party begone! I got things to do!" I will not let this disease beat me or take my joy.

Hey healinggirl, until I got on this forum, I didn't even know there were folks who had UC that weren't on meds...shows how much I knew! I can only speak for myself, but when I was diagnosed, it was pretty bad. TMI coming up...I remember the toilet bowl was completely filled with blood (Like many ****s, I thought I had done something wrong and was scared to tell my mom there was a problem. I waitited months. She actually started stalking me a bit and when it was my 20th time in the bathroom and it was only noon, she barged in and we both just started crying when she saw it. She told me it was okay and we went to the emergency room immdiately). Wow, went off on a tangent there. Anyhoo, I have had the best results with Asacol. I can't quite remember what it feels like to be totally "normal," but when I take my pills as prescribed, I have no blood, no mucous, no cramps, solid formed stools, and for me "normal" is going 2-4 times per day (pretty much on schedule, so I rarely get caught unawares). In a nutshell, it allows me to live my life. I go camping, play sports, all that. It is just when I flare that...ugh, life gets a little complicated :) As for the rowasa enemas, they go straight to the source, so they were also extremely affective. I only used them now when I get a bad flare up and my doctor wants to get it under control quickly. They take some getting used to though. Initially I could only hold them for about 20 minutes. With time, I could hold them all night and didn't even think about it. it was, bam, insert enema, fall asleep immediately :)

I do worry though if/when my body will not tolerate the Asacol anymore, what will I (and others like me do)? Hopefully by then, they will have a cure for us all! Thanks!
  • Diagnosed in 1994 at the age of 14
  • Initally prescribed prednisone and Rowasa enemas - near immediate improvement (Yay!)
  • Within 1 - 2 months later, prescribed only Sulfasalazine - Yikes! Severy allergic reaction!  1 week in hosptial with 4 blood transfusions.  Then prescribed Asacol - Phew!
  • Mid 2008, tried Lialda - NO!!!  Caused flare, pills to big to swallow! 
  • Back to Asacol - 400 mg tablets, 3 pills, 3 times per day, and a daily multivitamin
 


nellewbl
New Member


Date Joined Aug 2008
Total Posts : 10
   Posted 8/30/2008 7:49 AM (GMT -6)   
Hmm, not sure why the word "pre-teens" came out like I said a cuss word...but, just wanted to say...I didn't cuss :) Weird...
  • Diagnosed in 1994 at the age of 14
  • Initally prescribed prednisone and Rowasa enemas - near immediate improvement (Yay!)
  • Within 1 - 2 months later, prescribed only Sulfasalazine - Yikes! Severy allergic reaction!  1 week in hosptial with 4 blood transfusions.  Then prescribed Asacol - Phew!
  • Mid 2008, tried Lialda - NO!!!  Caused flare, pills to big to swallow! 
  • Back to Asacol - 400 mg tablets, 3 pills, 3 times per day, and a daily multivitamin
 


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 8/30/2008 8:42 AM (GMT -6)   
Nellewbl:

I was in the same shoes as u since 1993, I had the symptoms, but not nearly as bad as u. I told my mom once, and then the second time it happened I told her again and she accidentally scared me off. So, since I was only 11 years old, I dealt with it on my own until it totally showed up a year and a half ago. I didn't know what it was until last year. I wasn't surprised at what it was, just relieved that it was figured out, but I didn't know it was hereditary either. I have a wonderful husband who gets a little paranoid about what I eat from time to time, although I know I'm in complete remission. But I'm thankful for a husband who loves to take care of me. I am currently on Humira, and Imuran, been on that since May 2007. It does wonders for me, no flares at all. Only had one this past May, but it went away quite fast.

Lucky777
Regular Member


Date Joined Aug 2008
Total Posts : 128
   Posted 8/30/2008 8:49 AM (GMT -6)   
Welcome Nellewbl,

I am also new around these parts - but I am certainly glad I found this site. It has been a great outlet for the past week or so. As far as not taking any pills since 02, I don't know how you do it. I am not in remission, but I would hate to think what my life would be like if I wasn't taking some of this stuff. It truly has allowed me to go back to work at the very least, and although things aren't perfect (still 7-10 times a day) I was at 20+ before I was taking meds.

It seems to be a long road to remission - getting ready to try remicade shortly.

I wish you luck in your path, and don't worry about TMI - I have been on this site for about a week, and I have been grateful that there is no such thing as TMI around here. We are all dealing with the same thing, and the gross and disgusting ways it manifests itself are important to discuss with the only people you can discuss it with - those who know. You should check out the thread for "accidents". I for one (and there were others) who were so glad that someone brought it up. This disease can make you feel very alone at times. So it is good to have this outlet.

Sean
Sean - 31

UC Since April 2006, diagnosed 2007 (Flex-Sig)
4 x Liada (2 am 2 pm)
175mg Azathioprine
2 x Imodium
Remicade consult scheduled


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/30/2008 9:32 AM (GMT -6)   
There are a lot of options for treating UC now:

The 5-ASA drugs are the "staples" of treatment. For most people, they get them into remission and keep them there with only occasional flaring. They also help to protect from colon cancer; the risk of colon cancer does increase for people who have had UC for more than 10 years. The main meds in this group are Asacol (Mesalamine), Lialda (time release Mesalamine), Colazal(Balsalazide) and Pentasa (Mesalamine) for oral use. Rectal medications, used to treat the very end of the colon, are Rowasa enemas or Canasa suppositories; these are both also Mesalamine. Unless we are allergic or can't tolerate the 5-ASA's, most of us take them all the time as a maintenance drug.

Steroids are often used for short periods of time to induce remission. They won't maintain a remission and aren't appropriate for long-term use because of their serious side effects. Some of these are Medrol, Prednisone and Entocort. There are also steroid enemas and suppositories.

Immunosuppressants are used when the 5-ASA's aren't able to keep you in remission or for people who can't take them. The common ones are Imuran (Azathioprine) and 6-MP, both taken orally. Regular blood tests to check for anemia and liver problems are done when these are used.

The newest group of drugs available are the biologicals, Remicade and Humira. These are given by injection or IV, and are usually used when the other drugs aren't providing enough relief of the symptoms. They are very expensive, so if people are not insured, it can be difficult to work out how to get these medications.

Like all medications, these drugs have potential side effects, some more serious than others. When talking about starting any medication, it's important to talk to the doctor about the risks and benefits, and weigh these against how much the condition is interfering with your life.

There are also a host of "natural" remedies that individual people find helpful, and I'm sure you'll be hearing about these. One thing a lot of us do take is a good probiotic to replace the good bacteria in our colons that we sometimes lose. These can help with our colon health and our symptoms when taken along with the other treatments.
Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.

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