For those with CD 15, 20, 30+ years.....big picture

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mattzen
Regular Member


Date Joined Mar 2006
Total Posts : 28
   Posted 9/14/2007 11:59 PM (GMT -7)   
I am about to begin taking 6mp and am rather nervous about it. But thinking about it has brought me to a question..... Before drugs like 6mp, Humria, and remicade, were avaliable, how did you deal with life, symptoms, and long term managment of your disease?

I was diagnosed 13 years ago at age 19. I have been on sulfa, pentasa, entocort, currently on prednisone, just had a resection 3 months ago, and am seemingly doing as badly as I've ever been. i need to get off the pred as i've been on it since feburary now. taking vicodin daily for pain even though it doesn't help me that much and xanax for anxiety that has developed over the years regarding my guts and the impact on my life.

i just wondering what the quality of life was like for those of you before these more powerful (and more dangerous) drugs were out there. i'm also trying to weigh the pros/cons of beginning to take such drugs as i am not sure if the benefits outweigh the risks........especially long term.

as an aside and to counteract any possibility of seeming overly negative, my life otherwise is really great. just got married. spent 2 weeks in hawaii. i have a dream job (music composer) where i work on my own time (not 9 to 5) and from home and am successful. my wife is an RN who cares for me very well. still have health insurance. basically i have everything i could ever want or desire except my health.

so what do you think folks? i'm most curious to hear what your experiences are and have been......
Diagnosed with Crohn's 1994.
Resection 05/22/07
Current meds: Pred, Nexium, vicodin.  Will be staring 6mp soon.....


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 9/15/2007 2:13 AM (GMT -7)   
well as for me since 1984, i just dealt with it. still do to an extent. all we had in the 80's was steroids and azulfadine. i was able to try some remicade early on before it was approved, did not really work for me. seems each year another drug is coming out. thats good. to late for me but maybe some of the younger people will have a better time of it. or even some of the older folks just diagnosed or with a milder disease process.
randynoguts 



     http://www.geocities.com/randynogutsweb/


Kurt
Regular Member


Date Joined Feb 2004
Total Posts : 65
   Posted 9/15/2007 8:55 AM (GMT -7)   
I suffered with pain, and was on steroids. Took about every thing known to man ! Have been on Remicade for 3+ years get the max (10) every 7 weeks , only last about 5 weeks and the Doc will not put it at 5 or 6 weks. (yes) I have changed GI doc (3) times since my 1st one ( great doc) retired. I am 64. My mom died of this (CD) and I almost did (twice) . Now its just day to day. Had to go back to work just to pay the bills. My wife and I have lost everything (twice). So do what you can now ! You never know when your good luck of feeling good will change !!!
KURT HILL


Blaze
Regular Member


Date Joined Aug 2005
Total Posts : 50
   Posted 9/15/2007 8:55 AM (GMT -7)   
Same here... since 1974 I took azulfadine for a year and then prednisone was the wonder drug for crohns. Over the years I found that prednisone was a big part of my problem. For me it masked the symptoms while spreading and deepening the disease at an alarming rate. Doctors wouldn't listen to me when I told them I believed it was making things worse and kept insisting I take it. I had surgery after surgery with surgical remission only lasting a few months. By the time I was 27 I'd lost all but the duodenum and part of the jejunum. At this point I started refusing prednisone and things changed. Up until a few years ago the doctors fought me on this making me sign papers that I wasn't complying etc... but lately some seem to agree that prednisone can be a problem for some. I'm 46 now and haven't lost anymore intestine since (although I am off to a surgical consult this Monday) I have disease and strictures in what remains but the disease process slowed greatly compared to the prednisone days. In other words I think if I had to do it all over again knowing what I know now I'd probably have more intestine to work with today. When Imuran came along I had a reaction to it so I was unable to continue on it... and I just started humira in April. I don't know if it's doing any good or not, only time will tell.

It does make me happy to read of your job situation and that you have a supportive wife. Thats everything! Good Luck.

 

Crohn's disease diagnosed in 1974 at 13 years of age.  First surgery at 18 removed entire colon, rectum and 3 ½ ft of small intestine resulting in an ileostomy.  Multiple surgeries since, with only 4-5 ft of small intestine remaining at this time.  What remains is in bad shape with two severe fibrotic strictures. Very painful.  Any further surgery would likely put me on TPN, which I've been fighting to avoid with anti-motility meds and pain management.  Silver lining - My hubby of 21 years is the kindest man in the world and my hero, and our 18 year old son is a constant source of pride and joy for both of us.


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 9/15/2007 9:56 AM (GMT -7)   
Hi Mattzen:

I was diagnosed 30 years ago when I was 21 and had been living with it for awhile before. I raised a family, used guts, brains and determination to fashion a highly successful career despite living in the daily presence of this disease.

Those were my priorities -- to not allow the disease any room in my life -- and it worked for a long time.

I realized about five years ago that it wasn't working for me any more.I paid a price for ignoring the disease, for pushing it around and suppressing symptoms. I don't believe I was ever adequately medicated (my choice) and so the disease was allowed to simmer away bringing me to resection three times before I finally understood that I was going to run out of bowel before I ran out of life if i didn't make major changes.

First I walked away from a high-stress career that I loved and excelled at for a less demanding career in public relations. But it wasn't until I really started to deal with my underlying thinking and behavior that I really saw a change. After two years of ill-health, surgeries, complications and lots of therapy I was placed on permanent disability last January and stopped worrying about work for the first time since I was diagnosed.

I am now healthier than I have been in 30 years. The combination of appropriate drugs ( azathioprine, pentasa, cholestyramine, B-12) and the changes in lifestyle have finally brought me into remission and though I am walking a very fine line, most days I'm ok. The big thing for me though is that because I'm taking care of myself, I'm reacting to the bad days by taking it easy. Miracle of miracles, as a result the bad days don't become an unending morass of bad weeks that lead to bad months. I take it easy for a few days and my symptoms wane and my energy levels return. It's been a miracle 30 years in the making.

BTW what kind of music do you compose? I am a student of classical music, have always played the piano and 10 years ago took up piano lessons again as an adult student. I purchase my pianos from a company called Dr. Piano and my husband says that doctor has done more to heal me than any other I have ever seen. It's true. For me music is therapy. No matter how miserable I feel or what pain I am in, once I start working at the keyboard I am transported to another place. When I come back to this world an hour or two hours later, I might still be in pain but the break I've enjoyed makes it more bearable.

So to answer your question, I wish I had taken 6-MP in 1985 when my then GI first advised it, but I didn't and life has led my where I now am. It's still a pretty fine place to be, even though the world now calls me disabled.
Belleenstein:

30+ years living with Crohn's.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/15/2007 10:41 AM (GMT -7)   
Halloween of this year will mark my 32nd year of my living with Crohns. I was diagnosed October 31, 1975. When first diagnosed I took Pred and azulfidine and had to go on a special diet which I think would be classified as a low fiber diet. Within 3 mos I was back to normal and didn't think too much about it until 1980 when about 9 mos after the birth of my second daughter, I had my second flare. That one was treated the same and within about 3 mos I was back to normal and then enjoyed a almost 20 year remission. During my remission I didn't use any meds either. But in 1999 Crohns started to rear its ugly head again, I had a minor flare which was controlled this time with Pred and Pentasa. Everything stayed pretty quiet till Jan 2002 when I had to have an emergency resection because of an obstruction. Since then I had to have liver resection (benign growth on liver) and then another bowel resection in 2005. Now nearly two years later I don't fight as much with Crohns per se, but more with the side effects the surgeries caused. I have to keep myself pretty much on a modified low residue diet and can't eat alot of foods, but life is pretty much okay with a few blips of bad days here and there. I am now only taking Asacol and meds for those side effects from surgeries (nausea), have a few more joint problems now (part I am sure are related to being almost 50) but the rest is osteoarthritis and inflammatory arthritis. I tried 6mp and Imuran but side effects sucked too much. Haven't used any of the other big guns, but will save those for when I absolutely have too, and I don't think I am there yet. Will cross that bridge when I get there.

Belleenstein, you must have been a brilliant journalist. You write so well and you always explain things so clearly. I always enjoy your posts.

God Bless,
Gail *Nanners*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 9/15/2007 10:48 AM (GMT -7)   
My Mom was diagnosed in 1965, when I was 1. Back then Asulfasalazine and Prednisone were pretty much the only options. She was alergic to sulfa so prednisone was it. She was on Prednisone and at pretty high doses for most of the rest of her life. (Smoking killed her not CD) She had 3 resections and multiple bowel obstructions requiring hospitaliztion, at the end, she was able to stay home with the obstructions because my sister was a nurse and could give her demerol by injection and we could keep her hydrated. All that being said, she lived a good life. When the disease was giving her trouble she cut herself slack and rested. When she was feeling well, she did whatever she pleased. Basically she set a good example for me, so that when I was given the same diagnosis when my own first born was 1, I was able to take it in stride and say OK I can still have a good life, just with a few bumps in the road. When I don't feel well, I take it easy. I learned a long time ago, if I don't take care of me, I can't take care of anyone else.

As far as choosing to take medicines that might affect my life 10 or 20 years down the road, I look at it like this - No one is guaranteed tomorrow let alone 10 years from now. I want to enjoy today, and if I need to take drug X to do that and it might mean that I might not get to live an extra 30 years then, so be it. I don't want to live those extra 30 years in pain. I would rather have 10 good years.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 9/15/2007 1:45 PM (GMT -7)   
I was diagnosed in 1978, I was 8 years old at the time. Initially they had asulfadine and pred like othersd have said. They also had me on flagyl for a little while. When I was 13 that was when I was placed on imuran. I was on it until 2006 (i was in remission) my pulmonologist pulled me off of it since my lingering bronchitis post pneumonia wouldnt go away. Since I did well those 2 weeks with no imuran my GI kept me off of it. That was January 2006. The end of August 2006 was when I began flaring again (I had still been on pentasa and remicade as maint drugs). My ileum perforated in Feb 2007 and have had a roller coaster ride since. When I was on imuran my bloodwork was fine when Remicade was added into the mix was when my WBC started dropping to the point where if it went donw anymore I was going to need a bone marrow biopsy.
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 9/15/2007 8:15 PM (GMT -7)   
Hmm, I was dxed initially with UC in 1992, fifteen years ago. It was still mostly Azulfidine (which I couldn't tolerate after only 2-3 weeks), prednisone, & Bentyl. A few new ASA 5 drugs were just coming out then. After the Azulfidine was discontinued I took Dipentum, which proved worthless. Also, docs were still big on low fiber diets & cutting dairy, etc.
Shortly after my Crohn's dx, I started taking Pentassa which worked like a charm back then.
****
To Summarize: 5 ASA drugs (azulfidne, Dipentum), Prednisone, Bently, diet, also suppositories of 5 ASA & steroid combonations, & Methotrexate were my options in the early 90's.

Matthew

HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3130
   Posted 9/17/2007 5:23 AM (GMT -7)   
I just marked the 17th anniversary of my dx in August. I too was on Azulfidine and Folic Acid for the first years, then along came Pentasa (for me it was the mid 90s). I was glad because the Azulfidine made me get sunburn even faster---literally 1 minute in the sun and I was scorched. I had a couple of rounds of Prednisone in the mid 90s to 2001, but nothing really long term. I think my surgery kept me from needing more care---my opinion. Wow I just realized I have only taken 3 different meds in the 17 years.
Mostly I just cared for my CD by not eating anything that ever hurt me ever again. I was completely veggie free, only had bananas for fruit, never drank milk, avoiding any high grain items, only meat I had was chicken. Hmmm...since I started eating again, I have headed into a flare. Time to restrict the food again.
I have not tried the "bigger meds" yet. I am still weighing the thought as it seems you are too. I have to decide by 10/2 if I go to 6mp/Imuran. let me know how it goes for you :-)
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....


andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 9/17/2007 7:03 PM (GMT -7)   
Ive had crohns now for 19 years and have found it has become much worse as the years have rolled by.Had a resection in january this year i was very lucky to avoid major surgery until then, but have never really felt what remission is like, still hoping for that to happen one day. just recently started on remicade and really hope that does the trick if not they are looking at trying me on humira, most other drugs ive tried havent worked for me or have major allergic reactions to them. Day by day for me now somethings gotta give. take care

tinglebell
Veteran Member


Date Joined Apr 2007
Total Posts : 531
   Posted 9/17/2007 8:10 PM (GMT -7)   
Hi! I have had crohn's for 40 yrs. Three resections, about a foot each time, 1967, 1980 and 1995. Used to take pred, azulfidine and lomotil for short periods. Before my last resection, I took pred for a yr, to prevent surgery. I have been on pentasa, pred, and entocort a few times in past two yrs. Most recently started remicade and had 3 doses. It is not helping (Crohn's or arthritis) and they talked about doubling my dose, but I had chest pain and diff breathing last 2 times, so now my GI wants me to get a 2nd rheumy opinion. Meanwhile I am having some r sided abd discomf and am to have a sm bowel follow-through in Oct. I think I am forming a new stricture. I can honestly say though, I have mainly been very healthy since my orig dx and had 3 normal pregnancies with natural childbirth. I have had a career in nursing for 38 yrs, working full time nearly all of them, with very few sick days. Most aquaintances never even knew I had Crohn's. Two yrs ago I had to stop working because of B12 deficiency neuro problems, so NEVER stop taking your B12.
DIANNE
Diagnosed at age 19 with CD.
3 small bowel resections, 1 for perforation, 2 for strictures 
 

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