Great site!! I was diagnosed when I was 16 with crohns. Had my first 6" of my small intestine taking out at 16. 21 years later and being on pred for pretty much all of that 21 years. I had another 6" taking out. I have ostro-penia now because of the pred. After that surgery I stopped all my meds and haven't been on anything for the past 7 years. I have tried all the drugs but hated how they made me feel. I am now 43 and having a few stomach pains every now and then but I can live with it.
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- Thread starter superdad
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Back when you got diagnosed there was not much available besides prednisone. I know that drug can be enormously helpful but the side effects are awful. Are you being monitored with colonoscopies and imaging? There are many new maintenance therapy drugs that will keep your disease in check without the horrible effects of steroids.
Since my last surgery 7 years ago I have not seen my Doc I forgot his name and had to look it up LOL or under any meds. I did make an appointment to see him next month. The reason is being tired and some stomach pains. A lot of this is due to what I eat.
The reason for the visit will be to have a complete blood work done. Being an X body builder I know what to eat that works for me, hitting the gym on my "good" days makes me feel better and getting rid of stress. I told myself I would never go back on drugs to control my CD but I know this isn't possible and at some point I will have to.
I do have my CD in check but don't get me wrong I have really bad days. Like yesterday all I wanted to do was come home and sleep but I couldn't. Today I felt great. Its a day to day disease.
The reason for the visit will be to have a complete blood work done. Being an X body builder I know what to eat that works for me, hitting the gym on my "good" days makes me feel better and getting rid of stress. I told myself I would never go back on drugs to control my CD but I know this isn't possible and at some point I will have to.
I do have my CD in check but don't get me wrong I have really bad days. Like yesterday all I wanted to do was come home and sleep but I couldn't. Today I felt great. Its a day to day disease.
Hi Superdad,
Do you take extra Vitamin D and calcium? That would really help your bones. Unfortunately, I now have osteoporosis so in addition to those supplements, I received a Reclast infusion from my rheumatologist. I hope you see a Gastro doctor and consider getting a battery of tests besides blood tests. It is really important that the gastro doctor knows what is going on with you.
Do you take extra Vitamin D and calcium? That would really help your bones. Unfortunately, I now have osteoporosis so in addition to those supplements, I received a Reclast infusion from my rheumatologist. I hope you see a Gastro doctor and consider getting a battery of tests besides blood tests. It is really important that the gastro doctor knows what is going on with you.
I have been taking calcium pills for the past 10 years. I did call and make an apt with my GI doc but he cant see me till Aug 15th. My Family Doc and GI are very good at sharing info with each other.
I do want to have another bone density scan done because its been over ten years since my last one.
Hi superdad, I see you requested additional support. 
You can have your GP do all the blood work now (especially checking for any vitamin deficiencies and check for any inflammation) and have all that ready to be looked at when you see your GI.
I'm glad you're going in to be seen. Even while in remission its important to have regular testing done such as a colonoscopy every few years to at least screen for colon cancer which we are at a higher risk of getting.
Back in the day Prednisone was used far too often at high doses and for far too long. As mentioned there are better treatments out there today and steroids can still be used but are only meant for short term.
Keep us posted on how you're doing.
You can have your GP do all the blood work now (especially checking for any vitamin deficiencies and check for any inflammation) and have all that ready to be looked at when you see your GI.
I'm glad you're going in to be seen.
Even while in remission its important to have regular testing done such as a colonoscopy every few years to at least screen for colon cancer which we are at a higher risk of getting. Back in the day Prednisone was used far too often at high doses and for far too long. As mentioned there are better treatments out there today and steroids can still be used but are only meant for short term.
Keep us posted on how you're doing.
Hi Superdad,
I don't know if you normally drink much soda, but if you do it's probably a good thing to avoid. The phosphorous in the soda can leach the calcium from your bones and force it to stay in your bloodstream, and it gets filtered out in the kidneys. So even if you're taking a calcium supplement, if you drink a lot of soda, you can still lose calcium.
I know my NP told me that even when not flaring, it's a good idea to see a GI on a regular basis and get a colonoscopy every couple of years just to monitor and maintain, rather than waiting for a flare and having a longer recovery time.
I don't know if you normally drink much soda, but if you do it's probably a good thing to avoid. The phosphorous in the soda can leach the calcium from your bones and force it to stay in your bloodstream, and it gets filtered out in the kidneys. So even if you're taking a calcium supplement, if you drink a lot of soda, you can still lose calcium.
I know my NP told me that even when not flaring, it's a good idea to see a GI on a regular basis and get a colonoscopy every couple of years just to monitor and maintain, rather than waiting for a flare and having a longer recovery time.