Hi! I'm a newbie. Just spent 9 days in the hospital so dehydrated, losing mass blood and extremely low on potassium. I was fortunate enough to be diagnosed right away with Crohns. Apparently my pregnancy ramped it up. So yes, not only do I have this stupid disgusting painful disease but I also worry about the health of my unborn child. The doctor said that my three miscarriages could be caused by Crohns. How awful is that?! I'm so sick right now and so worried and I'm getting depressed bc I don't know if I'm ever going to feel better. I take so much medication and I'm still so sick and tired. I just needed to vent and maybe talk to others that know how I feel. What's my life going to be like from now on? Pain and diarrhea and exhaustion and being scared to eat? I'm bummed and I know that's not going to make me healthier. I'm just scared I guess. Thanks for listening.
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Just diagnosed with Crohns and pregnant
- Thread starter LilB13
- Start date
Hello there, welcome to the forum.
It's totally understandable that you're scared, crohns can be a devastating illness to be diagnosed with. Honestly I don't think anyone would not get at least a little scared when first diagnosed. The positive thing is that now you have a diagnosis, you can have treatment and start getting back on your feet.
I can't tell you it will be easy, I can't tell you it will all disappear or how long it will take you to start feeling more like yourself again. What I can tell you is you are not on your own, this will get easier and your life isn't over.
Crohns is a tricky illness, there isn't a one size fits all treatment, but there are a range of treatments that can help you. I know it's hard to go from being healthy to being reliant on medication, I'm only 21 myself, I was diagnosed at 19. So I totally understand the fear of what life could hold. However, like I said there are good treatments now, it is possible to have a full, happy, productive life. Treatment can't cure crohns or garuntee you won't have a flare up (where the disease is active) but it can get you into remission, which is where you have no active inflammation and no symptoms. I can't tell you how long it will take to get there, but it is achievable. Although it's different for everyone, deep, stable remission supported by the correct medication(s) and regular follow up with your medical team can last for many years, we have members who have had remission for more than ten years, and I've actually met one person who got remission for 30 years without any symptoms. I'm not saying that will definitely happen for you, and I'm not saying it will definitely be straight forward, but there is hope, it's definitely possible, you won't feel like this forever.
Do you mind if I ask you what treatments you are currently on?
Take a deep breath, have some time to take in everything that's happening, remember that you are still the same person you were before you went into that hospital, crohns does not need to define you. You have crohns, it doesn't have you. We are all here for you, so please don't feel alone. If anything specific worries you or there's anything you'd like to know, please don't hesitate to ask us and we will do our best to point you in the right direction. It's ok to be scared. We're here.
It's totally understandable that you're scared, crohns can be a devastating illness to be diagnosed with. Honestly I don't think anyone would not get at least a little scared when first diagnosed. The positive thing is that now you have a diagnosis, you can have treatment and start getting back on your feet.
I can't tell you it will be easy, I can't tell you it will all disappear or how long it will take you to start feeling more like yourself again. What I can tell you is you are not on your own, this will get easier and your life isn't over.
Crohns is a tricky illness, there isn't a one size fits all treatment, but there are a range of treatments that can help you. I know it's hard to go from being healthy to being reliant on medication, I'm only 21 myself, I was diagnosed at 19. So I totally understand the fear of what life could hold. However, like I said there are good treatments now, it is possible to have a full, happy, productive life. Treatment can't cure crohns or garuntee you won't have a flare up (where the disease is active) but it can get you into remission, which is where you have no active inflammation and no symptoms. I can't tell you how long it will take to get there, but it is achievable. Although it's different for everyone, deep, stable remission supported by the correct medication(s) and regular follow up with your medical team can last for many years, we have members who have had remission for more than ten years, and I've actually met one person who got remission for 30 years without any symptoms. I'm not saying that will definitely happen for you, and I'm not saying it will definitely be straight forward, but there is hope, it's definitely possible, you won't feel like this forever.
Do you mind if I ask you what treatments you are currently on?
Take a deep breath, have some time to take in everything that's happening, remember that you are still the same person you were before you went into that hospital, crohns does not need to define you. You have crohns, it doesn't have you. We are all here for you, so please don't feel alone. If anything specific worries you or there's anything you'd like to know, please don't hesitate to ask us and we will do our best to point you in the right direction. It's ok to be scared. We're here.
Thank you for responding. I do feel alone so having someone reach out who knows where I'm coming from means so much. You don't even know. I guess as far as my fears, what really is scaring me right now is that when they diagnosed me they also found many complications with my baby. I worry about the medication I'm taking, if the baby is getting the nutrients he needs, if all the pain and diarrhea is hurting him. My mom said when they admitted me I was fairly close to dying. I don't really remember bc I was out of it.
So far I've started remocade, i take 20mg of bentyl every 4 hrs, prednezone, Pepcid for my ulcers, and lialda which they're gonna change since I can't afford it. Then on top of all that I also take lots of stuff for the pregnancy. I feel like I'm just a big medicine ball wobbling around. Oh, I also have probably 7 different creams and stuff for my bum since all the diarrhea for the past few months has tore me up. Gross I know.
I just want to feel normal again. Even me and my boyfriend are fighting bc he doesn't understand. He expects me to feel better and if I tell him I feel bad he says it's not cancer and to stop feeling sorry for myself. He's really been there for me but now that I'm home I guess he expects me to be better. I'm just sad right now. I'm sure things will get better.
So far I've started remocade, i take 20mg of bentyl every 4 hrs, prednezone, Pepcid for my ulcers, and lialda which they're gonna change since I can't afford it. Then on top of all that I also take lots of stuff for the pregnancy. I feel like I'm just a big medicine ball wobbling around. Oh, I also have probably 7 different creams and stuff for my bum since all the diarrhea for the past few months has tore me up. Gross I know.
I just want to feel normal again. Even me and my boyfriend are fighting bc he doesn't understand. He expects me to feel better and if I tell him I feel bad he says it's not cancer and to stop feeling sorry for myself. He's really been there for me but now that I'm home I guess he expects me to be better. I'm just sad right now. I'm sure things will get better.
I'm so glad I made you feel a little better.
I'm no expert, but when I've researched the medications in the past I think the lowest risks have been medications like lialda, and although I've not heard much about using remicade during pregnancy, I think most doctors class it as safe until near the end? What I do know is that it is almost always considered to be better to be receiving treatment than not. Having a mother that is getting the disease controlled is better for both mother and baby. A mother who isn't receiving treatment while flaring in pregnancy can be at great risk, including the risk of miscarriage as you have sadly found in the past. Your baby has a better chance if you can get this under control, and so do you.
As for the baby getting enough nutrients, you can have regular bloods to see what your vitamin levels are like, any that are low can then be supplemented and that will give a better chance of your baby getting the right nutrients too.
A lot of people find its difficult to get others to understand this illness. It's invisible. Unless you see our insides, many of us look perfectly healthy, and that can mean that even those closest to us can forget how sick we really are. My boyfriend says it didn't hit him until after my surgery when he came to see me in hospital and I kept falling asleep and slurring my words, and I was very pale. He'd known I was sick before, and always been supportive, but this was the first time I'd really looked properly sick.
Maybe you could get your boyfriend to look at some information sheets and things? Or maybe you could even show him this place? When I was new to this and I thought my boyfriend was frustrated with me I sat down and talked to him about it all, and in the end it turned out that deep down he was just as scared as I was, and that although he was frustrated, it wasn't because of me, it was because he couldn't make me better or help me, because there was nothing he could do to take my pain away. Often when loved ones lash out they are just as scared as us, so it might be worth trying to have a chat to him and seeing if he'll open up to you at all about how he feels about all this. Does he go to your appointments with you? Maybe having your doctor explain the condition for your boyfriend and the fact that you don't just get better in a couple of weeks will help?
I'm no expert, but when I've researched the medications in the past I think the lowest risks have been medications like lialda, and although I've not heard much about using remicade during pregnancy, I think most doctors class it as safe until near the end? What I do know is that it is almost always considered to be better to be receiving treatment than not. Having a mother that is getting the disease controlled is better for both mother and baby. A mother who isn't receiving treatment while flaring in pregnancy can be at great risk, including the risk of miscarriage as you have sadly found in the past. Your baby has a better chance if you can get this under control, and so do you.
As for the baby getting enough nutrients, you can have regular bloods to see what your vitamin levels are like, any that are low can then be supplemented and that will give a better chance of your baby getting the right nutrients too.
A lot of people find its difficult to get others to understand this illness. It's invisible. Unless you see our insides, many of us look perfectly healthy, and that can mean that even those closest to us can forget how sick we really are. My boyfriend says it didn't hit him until after my surgery when he came to see me in hospital and I kept falling asleep and slurring my words, and I was very pale. He'd known I was sick before, and always been supportive, but this was the first time I'd really looked properly sick.
Maybe you could get your boyfriend to look at some information sheets and things? Or maybe you could even show him this place? When I was new to this and I thought my boyfriend was frustrated with me I sat down and talked to him about it all, and in the end it turned out that deep down he was just as scared as I was, and that although he was frustrated, it wasn't because of me, it was because he couldn't make me better or help me, because there was nothing he could do to take my pain away. Often when loved ones lash out they are just as scared as us, so it might be worth trying to have a chat to him and seeing if he'll open up to you at all about how he feels about all this. Does he go to your appointments with you? Maybe having your doctor explain the condition for your boyfriend and the fact that you don't just get better in a couple of weeks will help?