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Crohn's Disease
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Posted 8/21/2007 11:34 PM (GMT -6)

So I finally had a bm from my post yesterday and the GI doc said maybe the mesalamine isn't working for me and he wants to put me on imuran.  But here's the thing...  I don't know HOW to tell if it IS or ISN'T working and I have only been on it since the 3rd so has it been enough time?  Since I haven't ever had this before.  I told him I don't want to go on it yet and to give me 2 more weeks.  I work in a hospital in Pediatric Urgent care.  School is almost starting and the colds and flus will be in the air again.  I'm not too keen on knocking down my immune system if I don't have to.  In the meantime, I started taking metamucil today since I have noticed I only fluctuate between being C and having D.  One extreme or the other nothing in the middle.  =0|

Symptoms:  My abdomen hurts all the time.  An uncomfortable ache is the only way I can describe it.  (3/10 on a pain scale) Yesterday it was turning into a painful cramp that made me double over a couple of times and feel like I was going to vomit but as soon as I had the bm, it reverted back to the ache.  It's not a stabbing pain in the right side like when I wound up in the hospital (9/10.)  Nor does it feel like I am eating glass when I eat or drink.  I also noticed that my belly looks bloated but I saw on posts that that is normal until you get to remission so I can accept that.  I also found on a med site that it takes about 3 weeks for the meds to take effect.  Is this how it is going to be forever?  (The constant irritating abdominal pain) Or are these symptoms only present when you have a flare? 

I appreciate those of you on this site for sharing your stories.  It makes that void that medicine can't answer feel a little more tolerable.

 

Posted 8/22/2007 6:59 AM (GMT -6)
The answers to your questions are . . . no answers. Every case is different, every patient exhibits different symptoms at different times. The harsh truth about CD is that doctors have to tinker with a range of medications, dietary restrictions, etc. over time to find the one combination that works best for each of us. In general, though, most CD patients can reach a level where most of their problems are contained most of the time. That is why they call this an incurable disease. So be patient and don't expect the One Big Answer right away, because there is none.

Posted 8/22/2007 11:40 AM (GMT -6)
Thanks mike for your candidness. I am starting to notice that with a lot of chronic illnesses (menangitis, arthritis and now crohns) it's basically trial and error which sucks. The only thing that bothers me is that he's telling me the meds aren't working but I don't know what it would be like if it WAS working. It would be cool if someone that had asacol and had to bump up to the next type of medicine=imuran or something else could say what made them switch or if the dr just told them hey it's not working. I'm used to the type of reactions where you break out into a rash, or get violently ill or in the case of when I got prescribed those nausea patches that you put on the back of your ear I became blind until I chewed out the dr and discontinued it. I'll wait it out... we got lots of time.
Posted 8/22/2007 12:00 PM (GMT -6)
I take 3 Asacol twice a day. How I knew it was working was within about a month I started noticing a decrease in my stools and symptoms. I am for the most part in symptomatic remission. Now I still get sick once in awhile when I eat something that doesn't agree with me, but most days I am okay. The one thing I can tell you is you are always going to have good days and bad days. But once you get your flare under control it will be mostly good days. Before my surgerys in 2002 & 2005 I enjoyed a 20 year remission where to be honest, I rarely thought of Crohns. Mine is considered pretty mild too. Hope that helps.
Posted 8/22/2007 12:18 PM (GMT -6)
Its probably too soon to tell in your case, but you would see a marked decrease in symptoms & no new ones occuring.
Also, no complications like arthritis..


Matthew
Posted 8/22/2007 1:28 PM (GMT -6)
Hi Mal If your Dr. is giving you more time that is probably good 2 weeks should not make a difference.If you are still in pain all the time then yes you will probably have to consider the Imuran or something else to get things feeling better. I don't live in constant pain but I also watch what I eat and follow mostly low roughage . Hope your feeling better soon. I will also say I haven't had any colds but then I don't work with kids so I unserstand your concern. lol gail
Posted 8/22/2007 4:19 PM (GMT -6)

I have no idea how to tell which direction you're going in. Last year, two years after a SBFT showed a footlong stricture in my small intestine and I'd been on 6MP and a low-fiber/low-residue diet for two years, I was in such severe pain that I virtually demanded another SBFT from the GI doctor. And the tests revealed that the stricture had vanished. So I learned that the degree of discomfort--or flat-out pain--doesn't necessarily correspond to what's happening in your digestive tract.

There's just an endless rise and fall to my disease, it seems. Some weeks I feel tolerable (never quite well, but manageable); other weeks I feel completely awful, with burning D, a burnt butt, no appetite, and excruciating joint and muscle aches. And then I feel a little better again, until the next round. I don't know what any of it means anymore--but at least I don't tie myself in emotional knots, terrified that the pain means that I'm on the slippery slope to another bout of abdominal surgery.

This is a really really hard disease to understand, I guess.

Posted 8/22/2007 4:42 PM (GMT -6)
There is a difference between disease activity and the level of misery you feel with this disease. Your level of misery is directly related to everything going on in your life. You have just been diagnosed with a nasty chronic illness. It is normal to expect that you will go through a period of adjustment. During this period when you are grieving the "normal" life you have left behind and coming to terms with the reality of living with this disease, it is understandable that you are going to be hyper-aware. It may be that what you are describing will become your new norm and it may be that this new norm will include acceptance of different sensations in your digestive tract than those that are considered normal. I've lived with crohn's for 30 years. I have a different normal from my healthy friends and family. I suspect that what I find perfectly tolerable would be considered unacceptable to them. I live with daily discomfort, but unless I focus on it, I don't notice it. I am in my first period of non-surgically induced remission in 30 years right now. A combination of medication and an attitude adjustment about the value of pushing myself to continue to meet the demands of a high-pressure career are responsible for that remission and yes, one of the critical meds is pentasa (a sister drug to asacal). It is working for me and I know it is working because I've learned what symptoms constitue inflammatory pain for me. (knawing, spastic pain around my umbillicus and increase in tenderness in the lower right quadrant) I have many symptoms and better and worse days, but until I feel that spastic, colicky pain, I don't pay too much attention.

You will gradually grow to be an expect too in how this disease manifests itself, but you have to give your self time to come to terms with your loss. It's a new world. It will be ok. Not a burden anyone would wish on another, but not without some positives in the long term. I have grown in ways that I would never otherwise have been challenged to grow through coming to grips with this illness -- and you will too.
Posted 8/22/2007 9:30 PM (GMT -6)
thank you so much for all your comments. It's making more sense now.
Posted 8/23/2007 9:34 AM (GMT -6)
Belleenstein,

Wow! what an inspiration you are to me. I am wondering if you please could tell us what meds, natural or traditional, vitamins, diet you are on. Anything else you take that you feel has contribute to make this disease part of your everyday life and remain fonctionnal. Thank you and keep up the good work!
Posted 8/23/2007 12:01 PM (GMT -6)
Ditto, because I too feel the same way. Especially about not focusing (have memory issues anyway) on symptoms, and living with "your normal". I have had crohn's for forty years, but have enjoyed many years of those in remission, but not sx-free.
Posted 8/27/2007 8:22 PM (GMT -6)
Hi Sad Mom and tinglebell:

You were wondering about my prescription for living. I sort of fall into the category of "been there, done that" in that I have tried supplements (probiotic, whey powder, acidiphilus, aloe gel, flax seed teas and enemas, chlorophyl etc.), and diets over the years, all in a search to avoid the reality of living with a chronic illnes. That reality? There is no magic potion, no elixir, no cure for what ails me. All the while I was seeking the cure, I was under-reporting symptoms in an effort to avoid taking the heavy duty medication that I have now realized that I need to slow down this disease.

I am currently on 100 mgs azathioprine, 3000 mg of pentasa, 100 mg ranadine, cholostyramine as needed, 1200 mg calcium, Vitamin D, and coenzyme Q-10, proflavenol and a high quality multi-vitamin and mineral supplement (usana). I eat plain organic yoghurt every day. I try to restrict fat as much as possible. For the first time in a long time I have started adding bulk and fibre back into my diet. I try to eat steel cut oats just about every day and that has helped slow some of my diarrhea, but I am only able to tolerate because I am finally in remission.

When my bowel is inflamed I can not tolerate bulk and fibre without painful cramps.

I am slowly building stamina and strength with a regular exercise program -- I had to start really slow because I was so de-conditioned after years of illness and many surgeries.

I have been practicing yoga for three years and it has been a wonderful de-stresser. All of this has resulted in me being able to get my resting pulse down from 80 to 60 and it takes a lot more activity to raise my pulse. I am breathing more deeply and using my breath to encourage relaxation when I am in pain or stressed from needing to use the washroom.

Most importantly, I have finally surrendered to the reality of my life. I can finally say, "I am sick" and be ok with that.

I just returned from a four-hour boat-ride in an open zodiac to visit a puffin colony off southwest Nova Scotia. No facilities. I would not have had the courage to do that a year ago. I would have been too afraid that I might embarrass myself in front of my freinds and strangers (there were 14 of us on the inflatable.) the difference isn't in how sick I am, it is in being able to acknowledge it. Today was a good day. I didn't expect I'd have a problem (ate light leading up to the trip and took my questran before I left) but if I had, it would have been ok. I'm not hiding my disease anymore -- from myself or from the people who care about me.

There's a tremendous freedom in that decision.

Cheers
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