Crohn’s Disease Prognosis
The mortality rate for sufferers of Crohn’s disease is relatively low, and as many with the disease will tell you, it is quite possible to live a long time with the condition.
What is of greater concern to many Crohn’s patients is quality of life, or the lifestyle a Crohn’s patient leads and what they will and won’t be able to do when they have it.
I can tell you from an experiential perspective that the thing I have to think about most often, no matter what I do, is being away from a bathroom – just how far away I’ll be and for how long.
I work a full-time, 40-hour-a-week job, and I thank God for every single day I’m able to wake up at the crack of dawn and go to work.
Sometimes I need to use the bathroom at the office once, twice, or even a few times; some days I don’t need to at all. My office is a modern building with modern facilities, so even if I do need to take a trip while I’m there I don’t worry.
Now, if my friends invite me to go on a camping trip, on the other hand, I have to think. If it’s a pretty tame campground with bathrooms on the premises, I may or may not go depending on how long the trip is. When they talk about hiking up a mountain and camping on a cliff, though, I politely refuse if I don’t feel comfortable with a backwoods excursion of such magnitude.
Sure, there will be some things you can’t do because you are living with Crohns disease. Big deal! Getting to know your body and how it responds to different conditions and situations is the best thing you can do for yourself; you’ll have a better idea of what you can handle and the quality of life you’ll experience.
Comments
Comment from crohner
Time: October 16, 2009, 2:35 pm
Hi Sandee! I’m 26, and for the past two years or so I’ve been taking Humira every two weeks. It’s in the biologic therapy class of drugs and is administered as an injection. I get the medicine delivered by mail order once a month from the pharmaceutical company associated with my medical insurance. It comes in a box lined with styrofoam and ice packs, and the package contains two syringes. You can get it administered by your doctor or do it yourself, and I do the latter. I alternate between injecting into my left and right thighs each time. It’s a little weird giving yourself an injection, but you get used to it over time and it beats taking pills every day. However, I have also heard good things about Low-dose naltrexone (LDN) and that is what I want to try next. My doctor refuses to give it to me because of the supposed ‘lack’ of studies done, but if you have the opportunity I’d suggest giving that a try for your daughter as well. God bless!
Comment from Helga
Time: January 5, 2010, 12:09 pm
If everybody with the sickness would be as positive as you – it would help them a lot. Greetings from Germany, Helga
Comment from nicola
Time: June 11, 2010, 8:16 pm
Hi, im a 33yr old i have Crohns and was diagnosed last May, thought for years had IBS severe but collapsed in agony and after many scans and treating me for severe constipation they diagnosed it. I have tried Azathoprine which caused sickness changed to 6MP found it terribly hard to come off steroids and commenced infliximab every 8wk but still in pain most of day taking 8 tramadol and topping up with other painkillers, anyway just found out have a stricture so proposed for Op next week, got a barium enema booked for Mon so fingers crossed this will give me some relief and painless times!!! Take care, Nicola
Comment from antoinette
Time: June 17, 2011, 9:07 pm
I was diagnosed with Crohn’s over five years ago. The first three years were very difficult, physically. Trying to get through each day at work was a challenge. I was on Entocort for a year and a half and then decided to change doctor’s. I was lucky to find one of the top 10 GI doctors in the country. We did colonoscopies, endoscopies, capsule endoscopies, everything under the sun and each time, it showed mild to moderate Crohn’s. The problem was, my body was rejecting all the medication I would go on. When on one drug, I developed pancreatitis and my liver enzymes went up to 1700. I was very sick. Since that time, we tried many more drugs and kept discovering my body rejecting them. I was referred to a new GI in the town I moved to (70 miles away) and he tried one other drug and again, I was extremely ill. I will say that back in December 2009 when I first heard “there’s nothing more I can do for you”, after a month’s time, I chose to go into therapy to help deal with the emotional aspect this disease had on me. I’m still in therapy today and still working on the acceptance of it. I am officially classified as a “non-treatable” Crohn’s patient. I now learn to live in pain for the rest of my life. I had my first hospitalization a few weeks ago, I was constipated for 7 days and my colon was completely inflammed. It’s a good thing the 3 stool softners and the one suppository worked, or they were going to do another colonoscopy and possible removal of the colon. It’s not easy being a Crohn’s patient, we do lead an interesting life and I truly hope that one day I will come to an understanding why I am the only one in the family to have this disease and why it chose me.
Comment from STEVE
Time: August 6, 2011, 6:31 pm
I was told in March of 2011, that I have Crohn’s. My life has changed sooo much. I am in the auto business, where you are expected to work all the time. Over the last 15 years I have worked my share of hours. Now, Some days I cant even manage to come. It has started being a embarrassment, almost like I just dont want to work. I thank God that everyone around me has been so supportive. I know I could go through all this with out their help!
I get sick mostly in the mornings, not every morning, but most.
I am so sorry this disease pick me, but I am a fighter!! I want let it win!!
Comment from Sandee
Time: October 12, 2009, 9:53 pm
I don’t see on your website what medications you take. Would you care to tell me. It is for my 24 yr. old daughter who has been diagnosed with Crohn’s and is having a horrible time with pain, diarrhea, and vomiting.