Hello everyone I have had what was first called UC since 2003 at that time I was placed in the hospital and was put on a massive dose of steroids for two weeks .Then I was released and Was able to get Married have a son get my amazing job duing EEg's and just loving life.Then last November hit and it was like all the years that I did not have any symptoms decided to hit me all at once I was first placed in the hospital in November I was put on prednisone @ 40 mg and stared several different medications then I winded up back in the hospital 3 more times before I was transferred to UVA where I was diagnosed with crohn's and then back to UC and now they are not sure. We tried Remacide I had my first infusion but unfortunately it didn't help and three days later started to have muscle spasms that I still have. Then I had to have a colostomy bag placed hopefully only for a temperay time but this whole time I was still on steroid's .So 8 hospitalizations later I haven't been able to work for the past 9 months so I have lost my job and gained 80pounds from the steroids that I haven't been able to lose due to not being able to workout at all I can hardly work up a flight of stairs with out my hear rate going in to 150/160 (svt). Me and my doctor just stated Imuran and pentasa and canasa with tramadol for pain and Zofran for Nausea I finely am starting to feel a little better but I am still having a muscle spasms and I am still having shortness of breath and chest pain I just want to feel like me again. If anyone can help I would be very grateful since my next spot is complete reconstructive surgery.
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Feeling hopeless
- Thread starter melinda20
- Start date
nogutsnoglory
Moderator
I'm so sorry but I'm not sure what to say besides to keep trying the other med options. I know it might seem hopeless since you haven't had success but you never know which drug might be the answer for you. Have you tried any of the other biologics? I truly hope you find the right answer so you can resume your life.
afidz
Super Moderator
I am so sorry to hear everything you are going through, this disease can be so frustrating. Do you know why they can't make a clear diagnosis? Have you gotten a second or third opinion? Try and obtain a copy of your colonoscopy so you can just bring that to a different doctor instead of having to go through the procedure again.
As far as you lack of energy, it is probably from being laid up and being sick for the last 9 months. There are a few things you can do. Have you had your blood levels checked recently? When my iron count or B12 count is low I have a really hard time even walking to the mail box. Do you know where those levels stand? Also, the quick weight gain is very hard on your body. Are you eating a lot of things with salt? Edema (water retention) is common with IBD's. I have gained 12 lbs in the last week and a half alone because of it and my body can certainly tell the difference. I also push myself to walk everyday. Even if its short distances like to the end of your block or something and then build up to going longer and longer everyday. That is a great way to start building up strength you have lost from being laid up for so long.
Your muscle spasms could also be a cause of dehydration, or your electrolyte balance being off. Potassium is a great source of electrolytes, so if you don't already, try adding that into your diet. Calcium also helps muscle spasms so if milk doesn't upset your stomach you can add that into your diet as well to see if that helps, if not you can buy calcium supplements over the counter. Like said above, walking everyday would really be beneficial in your situation. Your muscles aren't being used as much as they were in the past, and they can be spasming from inactivity. If your muscle spasms get really bad you could also try taking a muscle relaxer and see if that helps, but those are narcotics and really just a bandaid.
How long ago was your surgery? Your shortness of breath may be pneumonia from anesthesia that got settled in your chest. That is why you have to do those breathing exercises in the hospital after surgery to try and clear your lungs. I would try and get a chest x-ray to make sure that there is no fluid build up in your lungs.
I hope you start to feel better soon
As far as you lack of energy, it is probably from being laid up and being sick for the last 9 months. There are a few things you can do. Have you had your blood levels checked recently? When my iron count or B12 count is low I have a really hard time even walking to the mail box. Do you know where those levels stand? Also, the quick weight gain is very hard on your body. Are you eating a lot of things with salt? Edema (water retention) is common with IBD's. I have gained 12 lbs in the last week and a half alone because of it and my body can certainly tell the difference. I also push myself to walk everyday. Even if its short distances like to the end of your block or something and then build up to going longer and longer everyday. That is a great way to start building up strength you have lost from being laid up for so long.
Your muscle spasms could also be a cause of dehydration, or your electrolyte balance being off. Potassium is a great source of electrolytes, so if you don't already, try adding that into your diet. Calcium also helps muscle spasms so if milk doesn't upset your stomach you can add that into your diet as well to see if that helps, if not you can buy calcium supplements over the counter. Like said above, walking everyday would really be beneficial in your situation. Your muscles aren't being used as much as they were in the past, and they can be spasming from inactivity. If your muscle spasms get really bad you could also try taking a muscle relaxer and see if that helps, but those are narcotics and really just a bandaid.
How long ago was your surgery? Your shortness of breath may be pneumonia from anesthesia that got settled in your chest. That is why you have to do those breathing exercises in the hospital after surgery to try and clear your lungs. I would try and get a chest x-ray to make sure that there is no fluid build up in your lungs.
I hope you start to feel better soon
Thank you guys for the advice or support it does mean a lot I did have a second opinion the doctor even did a blood test that was suppose to tell them if it was chorn's or UC but it came back inconclusive I had my surgery about 3 months ago my doctor is still running tests to try and figure out what is going on . I am going to try taking the B12 and vitamin D to see if that helps with the lack of energy thank you.