Hi, my name is Malia and I was recently diagnosed with IBD but I don't yet know what specific type of IBD I have. I must admit that this illness has made me quite depressed. I used to love going on walks and yoga and now I feel like I'll never be able to do things I love. A lot of people treat me like I'm just being dramatic or anti social when I tell them I can't do a lot of active things. Do you guys get that? Or people treating you like you're a hypochondriac? It hurts. I'm pretty much in pain all of the time and get fevers nearly every night. I'm also pretty stressed out because my husband and I are struggling financially. I feel like I need to get a job, but how can I work like this? I swear I'd be crying from the pain and/or spending the entire day in the bathroom. I was really sick at my last job as well and it was a nightmare. I'm scared to get a job. Is that relatively normal? I just feel useless sometimes. :/ Also, the painful joints make it pretty hard to work with my hands as I'm sure most of you know. How do you cope?!
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Newly diagnosed and learning to cope.
- Thread starter Forestq
- Start date
- Location
- Circle Pines Minnesota
Hi
I'm also newly Dx and currently in a flare up I work and its tough not sure some days how I do it. The joint pains are bad shoulders, back, hips hands and feet. Currently I'm waiting to start Humira I was on Imruan and had a reaction to it so I'm waiting for my blood work to go back to normal. Also with this Dx came a Gluten allergic so not fun big diet changes!
Can you apply for Social Security. That is what I'm going to have to do I went from full time to part time I work at a hotel at guest service so on my feet all day and do laundry!!
I have a hard time sleeping at night because of the joint pain!! I'm on 40mg of steriods and that dont seem to work or maybe it is and the pain would be much worse. The depression is tough I have had that for about 3 years and have been on a anti depressive for that long it helps I think. The less stress you are the better but that is easier said then done!!!!
Good luck!!!
Blessings Lisa
I'm also newly Dx and currently in a flare up I work and its tough not sure some days how I do it. The joint pains are bad shoulders, back, hips hands and feet. Currently I'm waiting to start Humira I was on Imruan and had a reaction to it so I'm waiting for my blood work to go back to normal. Also with this Dx came a Gluten allergic so not fun big diet changes!
Can you apply for Social Security. That is what I'm going to have to do I went from full time to part time I work at a hotel at guest service so on my feet all day and do laundry!!
I have a hard time sleeping at night because of the joint pain!! I'm on 40mg of steriods and that dont seem to work or maybe it is and the pain would be much worse. The depression is tough I have had that for about 3 years and have been on a anti depressive for that long it helps I think. The less stress you are the better but that is easier said then done!!!!
Good luck!!!
Blessings Lisa
Welcome Forestq,
What meds are you currently on? Sometimes it can take some time for all the meds to work and for you to start healing. It seems so overwhelming in the beginning and reading some of the posts can seem like there is just a lot of problems but remember there are tons of people out there not posting because they are just living life relatively symptom free.
I do not have Crohn's but both my husband and oldest son do. My husband was diagnosed 20 years ago and besides a few issues here and there it has not been 20 years of suffering, we are raising 2 children, he works full time, we go on vacation and just enjoy life.
Our son was diagnosed nearly 4 years ago at age 10 and it took a good year to get to where he felt pretty good but we still had issues with growing/gaining weight until recently and I can say as of right now he is in remission and enjoying all the things a normal teenage boy does.
I understand about financial struggles we have been there and still in some cases continue to be there. Most hospitals will work with you on payments and we just keep paying until we get things paid off. We don't live in a big house as we long ago decided that we needed to be able to afford it on one salary just in case those health issues came up.
A lot of people feel that others think they are "faking" it, that is why it is called a silent disease a lot of the time you don't look sick. My son has had this problem at school where he doesn't look sick but the extreme fatigue sets in and he has problems going to school or staying at school but we have worked with the school as having Crohn's qualifies him as having a disability so we have accommodations set in place.
I hope you get to the point where you are feeling better soon and you can go back to walks and yoga, when you are feeling better these things may help you to stay feeling well in conjunction with meds.
What meds are you currently on? Sometimes it can take some time for all the meds to work and for you to start healing. It seems so overwhelming in the beginning and reading some of the posts can seem like there is just a lot of problems but remember there are tons of people out there not posting because they are just living life relatively symptom free.
I do not have Crohn's but both my husband and oldest son do. My husband was diagnosed 20 years ago and besides a few issues here and there it has not been 20 years of suffering, we are raising 2 children, he works full time, we go on vacation and just enjoy life.
Our son was diagnosed nearly 4 years ago at age 10 and it took a good year to get to where he felt pretty good but we still had issues with growing/gaining weight until recently and I can say as of right now he is in remission and enjoying all the things a normal teenage boy does.
I understand about financial struggles we have been there and still in some cases continue to be there. Most hospitals will work with you on payments and we just keep paying until we get things paid off. We don't live in a big house as we long ago decided that we needed to be able to afford it on one salary just in case those health issues came up.
A lot of people feel that others think they are "faking" it, that is why it is called a silent disease a lot of the time you don't look sick. My son has had this problem at school where he doesn't look sick but the extreme fatigue sets in and he has problems going to school or staying at school but we have worked with the school as having Crohn's qualifies him as having a disability so we have accommodations set in place.
I hope you get to the point where you are feeling better soon and you can go back to walks and yoga, when you are feeling better these things may help you to stay feeling well in conjunction with meds.
Thank you so much. You gave me hope and eased my mind a lot! I still need to go to the doctor to discuss my treatment options. Right now I'm just on Dicyclomine but I know I need further treatment. I'm going to schedule an appointment with my doctor on Thursday if I can. I had to wait until payday to go in again. I'm a little scared to be on a lot of medication. I just got off of a lot of medication awhile ago for other problems and I was so proud not to be on as many. As long as it helps me heal I suppose it doesn't really matter how many different medications I'm on. I don't want to cause further damage just because I'm a little scared too. I will admit that I'm terrified of the idea of steroids though. My brother was on some and they made him so sick and miserable. :/ gah!
I think it's so great that your sons school is being so understanding about his illness and that he is able to be a normal teen right now!
Can I ask another question? Do you think it would be a good idea for me to tell my future employers about my illness, or should I keep it to myself. I have no idea what I should do there.
I think it's so great that your sons school is being so understanding about his illness and that he is able to be a normal teen right now!
Can I ask another question? Do you think it would be a good idea for me to tell my future employers about my illness, or should I keep it to myself. I have no idea what I should do there.
My husband generally did not say anything until after he was hired then he would mention he had Crohn's I don't think a lot of people go into an interview saying they have a disease whether it be diabetes, crohn's, asthma or what have you.
We've done the steroid route, we call it the drug we love to hate. It has been a wonder drug to get things quickly under control but the mood swings, weight gain were not pleasant. But it kept things at bay while allowing the other meds the time they needed to be effective.
There are many different treatments out there and it can take a little while to find the right combination but check out the treatment section here http://www.crohnsforum.com/forumdisplay.php?f=16
and be sure and read through success stories here http://www.crohnsforum.com/forumdisplay.php?f=72
Hope you can get into the doctor on Thursday and get things moving in the right direction and are soon feeling better
We've done the steroid route, we call it the drug we love to hate. It has been a wonder drug to get things quickly under control but the mood swings, weight gain were not pleasant. But it kept things at bay while allowing the other meds the time they needed to be effective.
There are many different treatments out there and it can take a little while to find the right combination but check out the treatment section here http://www.crohnsforum.com/forumdisplay.php?f=16
and be sure and read through success stories here http://www.crohnsforum.com/forumdisplay.php?f=72
Hope you can get into the doctor on Thursday and get things moving in the right direction and are soon feeling better