So I'm only new to this site and I've been reading about a bit and I feel like lots f people have much much worse cases than I do I haven't seen a similar one to me that is. I was diagnosed in July and I'm currently on pentasa 500mg taking four pills a day. I was really surprised when I saw that people are on shots and infusions what ever they are. I was also surprised regarding the amount if surgery people seem to get. What kind of smptoms warrant surgery? My mum keeps threatening me saying that if I don't eat right I won't have a bowel by he time I'm 25. (I'm 18) and I'm just wondering because it seems like my symptoms are minimal compared to people on this site. About the worst I get it occasional constipation, bloody stool and sometimes fatigue.
I'm new and wondering about drugs and symptom?
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My Butt Hurts
Squeals-a-lot!
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Crohn's is completely different for everyone. Some people have bleeding, some don't. Some people have terrible diarrhea, some don't. Soome people have devastating weight loss.
Some people's symptoms may stay on the mild side with minimal medications, Some people may flare up and feel like they are never going to come out of it.
I was on a mild drug, sulfasalazine, for quite a number of years before it quit working and I needed something stronger. Hopefully the pentasa will work for you for a really long time.
I think one of the most common surgeries for Crohn's is a resection. That's where they take a section of the diseased bowel out and piece it back together. Also - sometimes people need surgery for a stricture. That's where the scarred tissue gets so small that food will not pass through it enough, so they cut that portion out. I have only had outpatient surgery for a fistula, which is a tunnel going from one location to another.
You may never need surgery, it's not something that will be needed for sure. You never can tell what Crohn's is going to do.
I've been absolutely horrible, symptom-wise, and I've been really reeeeally great too! It's not all bad, hopefully.
As far as eating, we're all different in that respect too. Different foods affect different people. You might want to go mild at first, and see if anything helps you feel better. A lot of us try to stay away from roughage, some avoid dairy, some avoid sugar. Some are doing a SCD diet, some do a low residue diet. A lot of this is trial and error.
Some people's symptoms may stay on the mild side with minimal medications, Some people may flare up and feel like they are never going to come out of it.
I was on a mild drug, sulfasalazine, for quite a number of years before it quit working and I needed something stronger. Hopefully the pentasa will work for you for a really long time.
I think one of the most common surgeries for Crohn's is a resection. That's where they take a section of the diseased bowel out and piece it back together. Also - sometimes people need surgery for a stricture. That's where the scarred tissue gets so small that food will not pass through it enough, so they cut that portion out. I have only had outpatient surgery for a fistula, which is a tunnel going from one location to another.
You may never need surgery, it's not something that will be needed for sure. You never can tell what Crohn's is going to do.
I've been absolutely horrible, symptom-wise, and I've been really reeeeally great too! It's not all bad, hopefully.
As far as eating, we're all different in that respect too. Different foods affect different people. You might want to go mild at first, and see if anything helps you feel better. A lot of us try to stay away from roughage, some avoid dairy, some avoid sugar. Some are doing a SCD diet, some do a low residue diet. A lot of this is trial and error.
Thanks. I'm really not sure what stage I'm at, at all right now. I've only been to my consultant once because she was so bad and when I got my colonoscopy to diagnose me, the results took a long time to come back because it was apparently the earliest case of Crohn's that they had ever seen so it was difficult to tell what it was. I don't know if it has gotten worse or stayed the same or what.
Nyx
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As MBH said, everyone's different in their symptoms and the degree of their disease. Mine progressed rapidly. I was diagnosed in 2006, was on Pentasa for 2 years and then it stopped working. They put me on Imuran but was only on it for 3 months before I ruptured my sigmoid colon and distended my bowel resulting in getting a bag (yay me!!). I don't think most people have a progression as quick as mine! lol
Get a new GI doctor, one that you like and trust and see what they say.
In regards to diet, most poeple can't tolerate raw fruit and veggies, nuts and seeds, or dairy. Try taking those out of your diet and see if that helps.
Good luck to you!!
Get a new GI doctor, one that you like and trust and see what they say.
In regards to diet, most poeple can't tolerate raw fruit and veggies, nuts and seeds, or dairy. Try taking those out of your diet and see if that helps.
Good luck to you!!
I was diagnosed at 16 and I'm 54 now and still going. I must say I'm a bit more careful about what I eat now, but I've eaten a right lot of old cr*p in the past... despite being a veggie for 20+ years. Above all, I try not to eat too much in one go, that really messes me up.
I'm not sure what constitutes a healthy diet for a crohnie, as a lot of us can't tolerate too much crunchy vegetable matter, I'm better with soggy squodgy stuff. As everyone says above, we're all different and you'll have to see what works best for (and when it works best)
I'm not sure what constitutes a healthy diet for a crohnie, as a lot of us can't tolerate too much crunchy vegetable matter, I'm better with soggy squodgy stuff. As everyone says above, we're all different and you'll have to see what works best for (and when it works best)
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I am similar to Agent. I was diagnosed at 16 and I am 31 now. Never had any surgery, but I have taken a lot of different drugs. In that time I had about 7 years of little to no symptoms. In that time I ate and drank whatever I wanted. But I think it did come back to haunt me and I paid for it the last three years. I am just now starting to feel normal again.
Diet really seems to be a trial and error system and different for all chronies.
Diet really seems to be a trial and error system and different for all chronies.
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I concur with all the above. I'm 17, nearly 18, and while I haven't had the disease long (Diagnosed in the fall of '08) it seems like diet is a unique aspect of the disease in what works for you and what doesn't. Same goes for medications. Some people catch it in the earlier stages and you can control it with milder medications. Up until this point I was only on LDN with months of no symptoms. But then I started eating badly and well I'm not doing so great now.
But I do believe the important thing is to eat right, but you have to figure out what works for you. There are threads in the food and diet section where a lot of us have said what we can't eat and what we typically eat in the midst of a flare. I would look through those threads and try cutting some of those things out and see if it helps. I would also see if you can get a blood test and see if you are sensitive to gluten. Gluten is in a lot of products nowadays and for some it really helps.
But I do believe the important thing is to eat right, but you have to figure out what works for you. There are threads in the food and diet section where a lot of us have said what we can't eat and what we typically eat in the midst of a flare. I would look through those threads and try cutting some of those things out and see if it helps. I would also see if you can get a blood test and see if you are sensitive to gluten. Gluten is in a lot of products nowadays and for some it really helps.
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I have been taking 2 grams of Pentasa (same as you) every day for almost 10 months for Crohns. For the last 6 weeks I have been almost symptom free. (No diarhea, few gut aches.)
I'm going to see my gastro doc tomorrow. Perhaps he'll tell me I can quit the Pentasa. That would be great since they are expensive. Has anyone here ever quit Penatsa? Did you have a regimen for slowly easing off it? I'm guessing something like cutting back to a gram and a half for a week, then a gram, etc.
I'm going to see my gastro doc tomorrow. Perhaps he'll tell me I can quit the Pentasa. That would be great since they are expensive. Has anyone here ever quit Penatsa? Did you have a regimen for slowly easing off it? I'm guessing something like cutting back to a gram and a half for a week, then a gram, etc.
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I was dx'ed at 18 and was fine on drugs for many years until things progressed rapidly out of nowhere. Unfortunately, one of the bad things about CD is there is no real explanation of this. So all you can do is take care of your current situation and hope that this care helps you in the future. Stay on top of your symptoms and remain in constant communication with your doctor.
Its so tempting to go on with life as if you never had this disease. As a person who was dxd at 18, I foolishly tried to keep up with my friends, in the junk food and binge drinking departments. By the time I was 23 I had a colostomy bag. Lucky for me I had it reversed and went on to have a 4 year remission. It was the longest remission of my life and I dont think it was a coincidence that it happened when I started taking really good care of myself. Sometimes you will get sick inspite of taking care of yourself, but you will always be at your best potential for that moment, even if you do get sick KWIM.
I could easily ignore the fact that I had crohns because no matter how severe it gets, I am never chained to the toilet. There is blood and cramping and pus and fistulas, but I am not one to have to know where the bathroom is when I go somewhere. It was easy for me to have fun now and suffer later.
Listen to your mom and take care of yourself.
I could easily ignore the fact that I had crohns because no matter how severe it gets, I am never chained to the toilet. There is blood and cramping and pus and fistulas, but I am not one to have to know where the bathroom is when I go somewhere. It was easy for me to have fun now and suffer later.
Listen to your mom and take care of yourself.
