3 year flare-up, need help
ajjaxx
Posts: 21 Member
Warning: This is going to be a long post.
Background: I am just shy of 24 years old, and overweight. My ulcerative colitis onset in 2005 and was diagnosed in 2006. I initially had pan-colitis. The first flare-up lasted a year, and was finally curbed by 40mg prednisone. After that, I was on remission using just asacol.
In May of 2010 I started to suffer my second flare-up. Initially, my doc just upped the asacol (from the 8 400mg pills I'd been on to 10, and then 12) as well as putting me on hydrocortisone and rowasa enemas. After a month or so, when that didn't fix it, he put me on 40mg of prednisone. Starting in roughly late September, 2010I was on prednisone on and off for about a year. We would start at 40, I would feel better, we would start the taper, and I would get worse again. I tried immuran, but it caused me to throw up so severely I had to go to the hospital.
In the fall of 2011, I took a medical leave from school when I started to feel sick again. I was taking time off from school to work when the flare-up began, then went back to school months later. The year that I was on prednisone, I was in school, and I barely made it through. So when I realized I was still sick, I withdrew.
My doctor was able to get me in to see the gastro doctors at NIH in December, 2011. They discovered that, because of the prednisone, my blood sugar had shot through the rough. They suggested 6mp, which my doctor prescribed in January, 2012. He also put me on metformin to deal with the blood sugar. I was on 50, and then 100mg of 6mp, and for a short while I felt better. In February, 2012, I started to feel sick again. From February until July, my health tanked. Not only did I have the normal symptoms, but I had headaches, constant colds and coughs. I felt depressed and like I had a cloud in my head. I withdrew from half of my classes both in the spring and the summer, and I barely got Cs in the classes I was in, mostly because I was so sick that I couldn't make it to class. I realized in the summer that the metformin was probably making my symptoms worse. My doc took me off of it, which helped slightly, but I was still quite sick.
My doc sent me to a blood sugar specialist, who said that even a year after stopping the prednisone, I could still be suffering the effects. However, because I have a family history of diabetes, it was possible that the prednisone had just set that off and it would be a problem permanently. He put me on a very small dose of insulin for about two weeks. I felt better immediately. I felt fantastic. The cloud was lifted off of my brain, and I wasn't symptomatic. The blood sugar plummeted and he put me on prandin, which I was supposed to be on for a couple more weeks before stopping it all together, as it looked like the high blood sugar was entirely from the prednisone.
However, end of September/early October, 2011, I started to feel sick again. It escalated quickly. I couldn't make it to class. I was constantly nauseated, suffering from colitis symptoms, still getting colds all the time. I could barely function. I withdrew from school in order to work on my health. I felt awful until mid-December.
Then, one day, I woke up and I was feeling okay. Not perfect, but pretty good. Right now, I'm still in that stage. I am not back to normal, but I am not quite as terrible. But this has happened many times before, and I am waiting for the other shoe to drop, to wake up again feeling awful. I am still going to the bathroom too many times a day right now. I don't think the 6mp is working, at least not completely. I would be much worse without it, but I know I could feel better than this.
I am at a loss as to what to do. I think my doc is going to try Humira next. I have tried all sorts of different diets, during and after flares. I'm taking this opportunity while I feel okay to work on a more weight-loss oriented diet than a flare control diet. But my life has been controlled by this disease for almost three years now. And I am still too sick to really commit to any sort of regularly scheduled class or job. I feel like my life has been put on hold because of this disease.
No one I know, including my doctor, seems to know what's going on with me, so I am asking the internet for any help you can offer. Thanks for reading, and for any advice you may have. Happy New Year!
Background: I am just shy of 24 years old, and overweight. My ulcerative colitis onset in 2005 and was diagnosed in 2006. I initially had pan-colitis. The first flare-up lasted a year, and was finally curbed by 40mg prednisone. After that, I was on remission using just asacol.
In May of 2010 I started to suffer my second flare-up. Initially, my doc just upped the asacol (from the 8 400mg pills I'd been on to 10, and then 12) as well as putting me on hydrocortisone and rowasa enemas. After a month or so, when that didn't fix it, he put me on 40mg of prednisone. Starting in roughly late September, 2010I was on prednisone on and off for about a year. We would start at 40, I would feel better, we would start the taper, and I would get worse again. I tried immuran, but it caused me to throw up so severely I had to go to the hospital.
In the fall of 2011, I took a medical leave from school when I started to feel sick again. I was taking time off from school to work when the flare-up began, then went back to school months later. The year that I was on prednisone, I was in school, and I barely made it through. So when I realized I was still sick, I withdrew.
My doctor was able to get me in to see the gastro doctors at NIH in December, 2011. They discovered that, because of the prednisone, my blood sugar had shot through the rough. They suggested 6mp, which my doctor prescribed in January, 2012. He also put me on metformin to deal with the blood sugar. I was on 50, and then 100mg of 6mp, and for a short while I felt better. In February, 2012, I started to feel sick again. From February until July, my health tanked. Not only did I have the normal symptoms, but I had headaches, constant colds and coughs. I felt depressed and like I had a cloud in my head. I withdrew from half of my classes both in the spring and the summer, and I barely got Cs in the classes I was in, mostly because I was so sick that I couldn't make it to class. I realized in the summer that the metformin was probably making my symptoms worse. My doc took me off of it, which helped slightly, but I was still quite sick.
My doc sent me to a blood sugar specialist, who said that even a year after stopping the prednisone, I could still be suffering the effects. However, because I have a family history of diabetes, it was possible that the prednisone had just set that off and it would be a problem permanently. He put me on a very small dose of insulin for about two weeks. I felt better immediately. I felt fantastic. The cloud was lifted off of my brain, and I wasn't symptomatic. The blood sugar plummeted and he put me on prandin, which I was supposed to be on for a couple more weeks before stopping it all together, as it looked like the high blood sugar was entirely from the prednisone.
However, end of September/early October, 2011, I started to feel sick again. It escalated quickly. I couldn't make it to class. I was constantly nauseated, suffering from colitis symptoms, still getting colds all the time. I could barely function. I withdrew from school in order to work on my health. I felt awful until mid-December.
Then, one day, I woke up and I was feeling okay. Not perfect, but pretty good. Right now, I'm still in that stage. I am not back to normal, but I am not quite as terrible. But this has happened many times before, and I am waiting for the other shoe to drop, to wake up again feeling awful. I am still going to the bathroom too many times a day right now. I don't think the 6mp is working, at least not completely. I would be much worse without it, but I know I could feel better than this.
I am at a loss as to what to do. I think my doc is going to try Humira next. I have tried all sorts of different diets, during and after flares. I'm taking this opportunity while I feel okay to work on a more weight-loss oriented diet than a flare control diet. But my life has been controlled by this disease for almost three years now. And I am still too sick to really commit to any sort of regularly scheduled class or job. I feel like my life has been put on hold because of this disease.
No one I know, including my doctor, seems to know what's going on with me, so I am asking the internet for any help you can offer. Thanks for reading, and for any advice you may have. Happy New Year!
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Replies
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First, you have to stay POSITIVE, don't think about waking up and feeling bad. I always say to myself "ok today I feel ok, I don't know how I'll feel tomorrow, but for today I feel ok."
I know EXACTLY what you are going through. I had to withdraw from classes during two different semesters due to hospitilazaions and even more so just not feeling well enough. Plus had to miss a ton of work, and even sometimes have to be at work not feeling well.
I am on Prednisone right now, and I'm tapering off of it. I'll be glad to be off it (as long as my symptoms don't come back).
I have Crohn's Disease but my gastroenterologist put me on Remicade, which I receive at an oncology office. I receive two hour infusions and will be receiving them every 8 weeks. However, I know other people who are on Humira and it seems to be really working for them.
I can't really answer to any of the medical side of things, but as a patient I can definitely understand your struggles with trying to manage the disease, work, school and the frustrations of dealing wtih the medical world.
I too have been feeling good, but not quite perfect since I started the Remicade (started in December 8 2012).
I hope you are able to get things figured out. I know it takes a long time to find a good doctor and treatment plan! Stay Well!0 -
Thanks! Those are some great suggestions. I think Remicade is next on the docket for me if Humira doesn't work. I am doing a little better at staying positive now than I was this past summer or spring, but it is still a struggle.
I hope with the Remicade you start to feel even better soon. Thanks again for the reply!0 -
Just wanted you to know I've been on Humira since 2008 and done very well with it. I was flare free from summer 2008 until Fall 2011 (I think it's pretty good!). I flared up in late 2011 and we couldn't get it under control until a hospital stay in April 2012. Humira won't solve all your problems but hopefully it will work for you as well as it has for me. I take one shot every 2 weeks and it keeps things in check. I still take Asacol with my Humira but it's definitely allowed me to do more things in life and worry less about my Crohn's day to day. Best of luck to you!0
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That's great to hear! I am hearing a lot of good things about Humira, and I'm hopeful that it could be a positive addition to my regimen. Hope things stay under control for you!0
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I feel your pain! I was diagnosed w/Crohn's Disease when I was halfway through law school, less than 6 years ago. I had to take several terms off and was hospitalized a couple of times and my grades suffered, but I graduated.
I've been on Humira for a couple of years now, and it seems to be working. I haven't had a real flare in a long time. (I have random days where I have really bad cramping, but my GI doc claims that it isn't a true flare unless it lasts for at least 2 days. I'm only sick for 1 or 1 1/2 days.) In the past, I've had erythema nodosum and pyoderma gangranosum (both are forms of very painful red bumps that usually show up on my shins and ankles) and Humira it the only thing besides prednisone that keeps them from showing up.
So I wish you luck with the Humira!!0 -
I joined this group so I could respond to your question: I have Crohn's disease and recently had my first surgery. I was on Humira for 3 years, the last year doing weekly shots. I had good results for the first two years, then it seemed to stop working. Cimzia is another option of an injectable biologic medication and I have had good results from it. I am finally in remission, something I was never able to get to in the 6 years that I have been diagnosed. I wish you the best of luck in your journey to be flare-free.
PS If you have never been on a biologic before, be forewarned that you need to take extra precautions around sick folks because the medication will decrease your immune system, and make it easier for you to catch infections; and you may experience extra-intestinal manifestations of your disease, as others have mentioned.0
