Hello, I was diagnosed with crohns in May this year. I suspect I have had this for many years so was actually pleased to be diagnosed. I was put on prednisalone and felt the best I had in many years. I was also put on azathioprine which unfortunately caused pancreatitis so I spent a very painful 4 days in hospital. I was then put on methotrexate along with upping my prednisalone again, again I felt and looked the best I had in a long time after putting on a much needed 2 stone in weight. I finally came off the steroids 2 weeks ago and since then I have started to revert back to being excessively tired all the time. I don't have any pain but I am starting to experience a lot more wind than normal and my stomach is constantly gurgling to the point people actually comment on it which is embarrassing more than anything. I don't know if this is normal and just something that as a crohns sufferer we are expected to put up with? I am not due to see my GI doctor again till March of next year but I have an IBD nurse that I can call if I have any concerns. I don't want to call her just yet as I know these symptoms I have at the moment are very mild compared to what others have to deal with. It's just annoying that after feeling great all summer I am starting to feel below par again. I am due a routine blood test next week so I may just wait for the results to see if they throw up any increased activity since coming off steroids. I think sometimes since being diagnosed I over think my symptoms even though I have "suffered" from the same thing for years but now I have a diagnosis I'm worried I just focus too much on symptoms rather than just "putting up with it" like before being diagnosed. I understand this post is a ramble more than anything, I just don't know what is "normal" with day to day crohns and when it is you should actually seek advice from your doctor/nurse!
A bit of a ramble
- Thread starter josephd85
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Help Support Crohn's Disease Forum:
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I have found with my son that most things don't change over night with crohn's. Every once an a while we will have strange vague symptoms that disappear as quickly as they come. It is the longer term picture that is important. Last fall he was having a bit of weight loss, less appetite, occasional stomach pain. They closely monitored him and it just seemed to go away, a bump in the road.
I started to write on my calendar the days he had nausea or fatigue etc so I could really get a good idea of how often he was experiencing symptoms. I never hesitated to call the nurse if I want to discuss something, which seemed to happen a lot in the beginning and they were very understanding. I don't need to call as often now, as I sort of know what to expect.
It also took over a year for my son to be completely symptom free. He was declared in remission about 4 months after diagnosis but the healing process took much longer than I expected and was filled with little ups and downs. I specifically remember him needing to adjust to not being on Prednisone anymore. Your body has to start making cortisol on its own now and you can feel a bit off until it adjusts.
Please let us know how you are getting along. ((((Hugs)))))
I started to write on my calendar the days he had nausea or fatigue etc so I could really get a good idea of how often he was experiencing symptoms. I never hesitated to call the nurse if I want to discuss something, which seemed to happen a lot in the beginning and they were very understanding. I don't need to call as often now, as I sort of know what to expect.
It also took over a year for my son to be completely symptom free. He was declared in remission about 4 months after diagnosis but the healing process took much longer than I expected and was filled with little ups and downs. I specifically remember him needing to adjust to not being on Prednisone anymore. Your body has to start making cortisol on its own now and you can feel a bit off until it adjusts.
Please let us know how you are getting along. ((((Hugs)))))
SarahBear
Moderator
Put simply, you should contact your GI anytime you're wondering if you should. You can always leave the information with whoever answers the phone and your GI will call you back or set up an appointment if they feel it's necessary. But, if your symptoms are getting in the way of your daily life (can't function normally) or there's blood in your bowel movements, it's definitely time to call. I also encourage you to ask your GI next time you go in what symptoms they want you to watch for and report to them. Also, you should go to the emergency room anytime things get bad enough to make you wonder if you should. It's all a "better safe than sorry" sort of situation.
In regards to the fatigue, it could be related to the Prednisone. I know it took me a while to get back to normal after being on it - the same could be true for you. It's definitely worth asking your GI. And the stomach gurgling… ha. Are you underweight? I am, and my stomach can be extremely loud as well. My cousin and I hypothesized that it was due to a lack of body fat to muffle normal stomach noises, as she doesn't have IBD but is also very thin and experienced the same.
I hope things get better for you soon!
In regards to the fatigue, it could be related to the Prednisone. I know it took me a while to get back to normal after being on it - the same could be true for you. It's definitely worth asking your GI. And the stomach gurgling… ha. Are you underweight? I am, and my stomach can be extremely loud as well. My cousin and I hypothesized that it was due to a lack of body fat to muffle normal stomach noises, as she doesn't have IBD but is also very thin and experienced the same.
I hope things get better for you soon!
