I was diagnosed with Crohn's during the summer of 2008. I just started having horrible stomach pains and the doctors decided it was Crohn's. I was on Entocort for about 2 years and now I am on Pentasa. I don't know that I can tell a difference at all between the two. In the last 3 years I have yet to determine what causes me to have a flare up. I try to tie it to food and I can't. I thought it was stress for a long time whether good or bad stress but now I just don't know. I see to have a 'bad day' once a week. I will go a week without having a bowel movement (even though I have taken fiber every day for the last 3 years) and then have 4 or 5 in one day and then every time I eat that day my stomach hurts and I have to lay flat on my back to relief the pain. The next day I may have some muscle tenderness all over my body or I will feel perfectly fine. I feel like my pain used to be completely random or related to stress and now it is every single Thursday or Friday. I am wondering if those of you that have been dealing with this disease for years have ever understood what caused you to flare up? I never know when it is going to happen. I just wish I could predict or prevent the bad days in some way. I just joined the forum today because I am stuck on the couch laying down because it hurts to bad to get up and I am really excited to get to talk to others that understand what I am going through as I do not know anyone with this disease. I worry about the future and not knowing if it can and will continue to get worse and what happens if it does? Will I have surgery? Will I be able to have a healthy child? I know the chance of passing it to a child is low but I cannot imagine my child going through this. Any advice is greatly appreciated.
Do you ever start to understand Crohn's?
- Thread starter mhaller7
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Help Support Crohn's Disease Forum:
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Hi there :0)
You definitely found the right place to come and get some support. This place is amazing. IT is really hard to have this disease, and its even harder when people just don't understand that you feel so bad- especially if you look healthy.
It can continue to get worse, but just know there are bigger and better drugs out there that can help you live a more normal life. I've been on just about everything. Some meds will work good for a while, and then lose their effect and then there's the next drug that does the same.
You may eventually have surgery, it really just depends on what happens with your disease and how bad it gets. It is really just hard to know what will happen.
Yes you can have healthy children!!! I was in a bad flare up when I got pregnant, and it continued throughout my pregnancy. I had a baby 6 months ago and she is the healthiest little girl! She's only had an eye infection since she was born, and that cleared up in a day or two. It is possible! Even on meds.
I worry all of the time about passing it on to my child. I have Crohn's and no one else in my family has anything like it, so perfectly healthy parents had a child with Crohn's, I think its just all so up in the air, to be honest. I look at it this way, if Sadie does end up having Crohn's when she gets older, she will have the most understanding parent in the world! I know exactly what its like. I will feel so terrible if I pass it to her, but I try not to get too worked up about something that may never happen.
I really hope that this helps some. It is possible to have a some-what normal life. Since I was diagnosed 12 years ago, I have yet to be in remission, but you learn ways of dealing with it and you don't let it ruin your life.
I wish you well and I'm glad you found the forum!
You definitely found the right place to come and get some support. This place is amazing. IT is really hard to have this disease, and its even harder when people just don't understand that you feel so bad- especially if you look healthy.
It can continue to get worse, but just know there are bigger and better drugs out there that can help you live a more normal life. I've been on just about everything. Some meds will work good for a while, and then lose their effect and then there's the next drug that does the same.
You may eventually have surgery, it really just depends on what happens with your disease and how bad it gets. It is really just hard to know what will happen.
Yes you can have healthy children!!! I was in a bad flare up when I got pregnant, and it continued throughout my pregnancy. I had a baby 6 months ago and she is the healthiest little girl! She's only had an eye infection since she was born, and that cleared up in a day or two. It is possible! Even on meds.
I worry all of the time about passing it on to my child. I have Crohn's and no one else in my family has anything like it, so perfectly healthy parents had a child with Crohn's, I think its just all so up in the air, to be honest. I look at it this way, if Sadie does end up having Crohn's when she gets older, she will have the most understanding parent in the world! I know exactly what its like. I will feel so terrible if I pass it to her, but I try not to get too worked up about something that may never happen.
I really hope that this helps some. It is possible to have a some-what normal life. Since I was diagnosed 12 years ago, I have yet to be in remission, but you learn ways of dealing with it and you don't let it ruin your life.
I wish you well and I'm glad you found the forum!
- Joined
- Feb 10, 2011
- Messages
- 178
Not to scare you, but to show the other side of things - here's my story (part of it).
My Mum has Crohn's and we can track it or similar way back a number of generations. I saw the guilt my mother dealt with an decided young (16) that I wasn't having children. I had my first SBR at age eight, second at 16, so she watched me growing up and dealing with the guilt the whole time. I was lucky to be able to have my tubes tied in my early 20's.
I have been dealing with Crohn's for over 30 years. I was diagnosed at 8, but had symptoms from the time I started walking. After all this time I thought I knew my body. I knew what foods and which stressors set me off. I knew that if I had more than a beer I'd be a hurting unit for the next two days. I know to avoid popcorn at all costs. I really thought I knew what was going on. My Crohn's ALWAYS hit me where the small and large meet. Never with a fistual and no meds would do anything to help. I tried them all (up to a point) and hadn't had anything good from any of them.
Christmas 2009 I had this very different pain that landed me in the hospital. I met the man who is now my GI and I love him dearly. I had a partial blockage. My GI and I went through all the testing and I went on Humira. I was on it for a year, but nothing got better. A couple more trips to the hospital for that partial blockage. Finally we decided to move over to Cimzia, but it didn't seem to do anything.
More trips to the hospital, each time I was in 3-5 days. Finally this summer I had blood pressure of 60/40 with a temp of 103.7. They couldn't find anything more than my normal inflamation. My GI was stumped and wanted me to consult a surgeon. Over two weeks I developed an abscess sticking out my side at least 4 inches and was in for surgery.
Amazing surgeon who looks at me in awe that I'm still alive after what he found when he opened me up. My intestines were tied up in such a tight ball that he barely got them apart. I had a huge fistula that was working its way out my side and had formed a 6X8cm abscess - the one sticking out my side. September 2nd he operated and I already feel better than I have the past two years. Heck, 4 days after surgery I felt better than the past two years!
I'm not telling you this to scare you, I'm telling you to show that after 30 years with this disease it can change course and completely change everything you thought you knew about your body! Crohn's makes no sense and completely threw me for a loop when I thought I knew everything going on in there. The most you can do is keep a journal or diary of foods and stressors to see if you can find anything that ties some things together.
Good luck.
My Mum has Crohn's and we can track it or similar way back a number of generations. I saw the guilt my mother dealt with an decided young (16) that I wasn't having children. I had my first SBR at age eight, second at 16, so she watched me growing up and dealing with the guilt the whole time. I was lucky to be able to have my tubes tied in my early 20's.
I have been dealing with Crohn's for over 30 years. I was diagnosed at 8, but had symptoms from the time I started walking. After all this time I thought I knew my body. I knew what foods and which stressors set me off. I knew that if I had more than a beer I'd be a hurting unit for the next two days. I know to avoid popcorn at all costs. I really thought I knew what was going on. My Crohn's ALWAYS hit me where the small and large meet. Never with a fistual and no meds would do anything to help. I tried them all (up to a point) and hadn't had anything good from any of them.
Christmas 2009 I had this very different pain that landed me in the hospital. I met the man who is now my GI and I love him dearly. I had a partial blockage. My GI and I went through all the testing and I went on Humira. I was on it for a year, but nothing got better. A couple more trips to the hospital for that partial blockage. Finally we decided to move over to Cimzia, but it didn't seem to do anything.
More trips to the hospital, each time I was in 3-5 days. Finally this summer I had blood pressure of 60/40 with a temp of 103.7. They couldn't find anything more than my normal inflamation. My GI was stumped and wanted me to consult a surgeon. Over two weeks I developed an abscess sticking out my side at least 4 inches and was in for surgery.
Amazing surgeon who looks at me in awe that I'm still alive after what he found when he opened me up. My intestines were tied up in such a tight ball that he barely got them apart. I had a huge fistula that was working its way out my side and had formed a 6X8cm abscess - the one sticking out my side. September 2nd he operated and I already feel better than I have the past two years. Heck, 4 days after surgery I felt better than the past two years!
I'm not telling you this to scare you, I'm telling you to show that after 30 years with this disease it can change course and completely change everything you thought you knew about your body! Crohn's makes no sense and completely threw me for a loop when I thought I knew everything going on in there. The most you can do is keep a journal or diary of foods and stressors to see if you can find anything that ties some things together.
Good luck.
