My story - looking for someone to talk to

[Domsmom]

Hi! I'm new here and am really looking for some support right now.

Here's my Crohn's story:

For about 2 years I had a lot of GI symptoms, but my Dr. kept dismissing them. One time she told me that it's impossible to have symptoms that affect so many parts of my body. So I stopped asking about it.

In Nov '07 I got married and my symptoms became quite bad. A lot of diarhea, pain, mucous... I waited until Feb. 08 to go to my Dr. again because I my previous experiences. She was finally willing to refer me to a GI specialist...though she told me it was probably just IBS and nothing could be done about it. My appt was in July. When July came I was 5 weeks pregnant! I had my first colonoscopy 3 days later and was diagnosed with CD and very scared. I was pregnant and did not want to start meds.

I began Asacol, which never did anything, and when I was 13 weeks pregnant I started prednisone. In January (after several months of GI appts and high risk OB appts) I had a beautiful, healthy baby boy! Things seemed ok...to the point that I went off of all meds for about 2 months. In June/July '09 things started up again and I was put on prednisone again and now Imuran...a few weeks later I had pancreatitis. I tried probiotics, which didn't work. We began talking about Remicade and things were in the works...then I was pregnant again!! On no medication again... When I was 20 weeks pregnant I again began prednisone. And have been on it since then. My beautiful baby girl is now 3 months!

Today...we are now talking about Remicade again and it scares me like crazy!!! I've read about several of the side affects and the cost...I'm ready to cry just thinking about it. I'd like to have more children, I'd like to be the best mom and wife and daughter and sister that I can be. I'm just so confused right now as to what to do. I don't have the most severe form of Crohn's, but I can't get off of prednisone and be ok.

I know this has been a long story, but I'm really looking for someone to talk to. Preferably another mom/wife, but anyone who is willing to listen and give me some info.

Thanks so much! I'm hoping that I can get to a point where I can help support someone else as well.

 

[Domsmom]

I've been reading some other parts of the forum today, and I'm really hoping that people don't think that there is nothing to me or my story...so many people have it sooo much worse than me, but it still doesn't help me to feel more assured about everything that's going on with me (I feel very selfish). I just want to stop feeling like crap every day, having no energy, up and down emotionally...and be able to just enjoy my children. Being a wife and mom is all I've ever wanted and it feels like I can't do it some days! Any information on natural treatment is also welcome.

 

[Astra]

Hi Domsmom
and welcome

You'll find that a lot of peeps on here are probably asleep at this time of night, we're not ignoring you, honest! Time diff, ya see!
You'll always be a great Mum, don't ever forget that and in time you will be able to manage this disease, not control it as such, but manage.
Having a good doc helps, your GP at the beginning is a bit flippant isn't she?
Have a read thro our sections on here, lots of info on diet, such as the low residue diet, meds like Remicade, there is also a Remicade Club Thread for you to read, lots of success stories!
http://www.crohnsforum.com/showthread.php?t=4544&highlight=remicade+club


I can totally empathise about the Pred, I was on it for nearly 6 months, now on it again, but tapering off now.
You're no longer alone with this, lots of friends here for you, any questions, just shoot
lotsa luv
Joan xxx

 

[Cat-a-Tonic]

Hi Domsmom, welcome to the forum. No need to apologize, you're not being selfish for wanting support and information - that's what we're here for! I haven't been on Remicade personally so I can't answer those questions, but like Joan said the Remicade Club would be a good place for you to start. Welcome again and we hope you stick around!

 

[TMos]

Welcome Domsmom! This place is great. You no longer have to suffer in silence!!! I'm not even diagnosed but people answer my questions.

I'm not sure how healthcare works in Canada but I'd get a new primary physician. Sounds like yours blows.

I think everyone can relate to stomache flu symptoms, and to have them all the time with a chronic condition like Crohn's, well, I don't think you're selfish at all. In fact, take some time to be selfish. I assume your husband understands everything you're going through. If not make him read up on it. Have him go to your GI appointments. Having two little ones is a ton of work when you're healthy. I hope you have a good support system that can help you out.

Hang in there!

 

[TMos]

Oh, and stomache (spelled wrong but that's just how I roll) flu is about the closest thing that people with healthy digestive systems understand, so I'm not downplaying CD at ALL and I want everyone to know I realize it isn't like stomache (lol!) flu obviously.

 

[DustyKat]

Hi Domsmom and :welcome:

I'm glad you found your way here. There are many different people on this forum, some like me that don't even have IBD but we a child or a loved one with it and some people are undiagnosed. It doesn't matter what degree of severity your disease is so you never have to apologise for that. I know you have found the Remicade Club so I hope you find some answers there.

I understand your fear about the side effects of medication. I think we all have experience that to varying degrees since many of the meds to gain or maintain remission have some damn scary side effects. I faced those feelings with my own daughter when she commenced Imuran but then I had seen what untreated Crohns can also do and medication in her case was by far the lesser of two evils.

You have found a fab place here for support and info and there is bound to be someone that has the same or similar experiences to you whether it be about treatments, symptoms, tests, feelings, relationships or doctors. So stick around and browse the forums and any questions just fire away, no such thing as TMI here! Good luck and welcome aboard!

Take care,
Dusty

 

[archie]

Hi Domsmom, I am a mum of 2 lovely young children (4 & nearly 2) and wife of an equally lovely husband, and recently diagnosed with crohn's and i totally know were your coming from with the lack of energy. Before I was diagnosed I thought I was cracking up as I simply found juggling the kids and work etc etc physically exhausting and believe me that just isn't my nature i've always always been really energetic and laid back.

Since starting the steroids though I do feel a million times better (nearly 100%) but like you really want to get off them, i'd be quite willing to take the risk and stop them but I have a very 'sensible' GI doc who under NO circumstances will allow me... (yet!!)

Don't forget you've just given birth so you've a lot to deal with physically and emotionally so don't be too hard on yourself, once you find the right medication for you you too will feel more normal again. Hope you start to feel better soon.

 

[rottengut91]

I've been reading some other parts of the forum today, and I'm really hoping that people don't think that there is nothing to me or my story...so many people have it sooo much worse than me, but it still doesn't help me to feel more assured about everything that's going on with me (I feel very selfish). I just want to stop feeling like crap every day, having no energy, up and down emotionally...and be able to just enjoy my children. Being a wife and mom is all I've ever wanted and it feels like I can't do it some days! Any information on natural treatment is also welcome.

Please don't ever feel selfish. The severity of this disease can vary, but even in it's mildest form can be debilitating when dealing with it day in and day out. I'm in the midst of a pretty bad flare myself. I just had a mental breakdown at the doctors office this afternoon. I am literally fed up with it. I am operating on about 30-40% at the moment. I am not a half-assed person and right now I feel like I'm living my life half-assed. My bedroom is grand central at the moment and has been for weeks. I don't know how much more of this I can take. My life is passing by and I'm not doing much living at the moment. I have been on every med imaginable, except the biologics. I'm waiting on my Humira to arrive, supposed to be tomorrow. I'm truly hoping this is my saving grace. If it doesn't work, I'll be having surgery. I'm really fine with that. Anything that will bring relief at this point is welcome. I don't have a job outside the home at this time. All I want too is to be a great mom and wife. I see my performance slipping as far as that's concerned and it really makes me feel worthless. It's nice having this forum to come and unload.
Anyway... Gee thanks for letting me vent. Welcome to the forum. Hope to see you around.

 

[caligirl]

Hi Domsmom - I'm very new to the forum too, but wanted to say that you should never feel selfish or allow anyone to diminish your symptoms/suffering. I get angry when I hear about drs who dismiss complaints about these symptoms. 40+ years ago the same thing happened to me and I'm so saddened to hear that it's still happening today.

I'm glad you found this forum and I hope you can at least find some comfort in knowing that you are not alone!!!

 

[Domsmom]

Thanks everyone!

It's been a depressing couple of days trying to figure everything out...I think that between my pregnancies and being on the steroids so much I've actually forgotten a lot of the symptoms that we're caused by the Crohn's in the first place. It's quite amazing how I'm remembering the severe D, fevers, pain now that I'm reading other's stories.

I feel much less alone knowing that there are other mom's out there with the same concerns as me. None of us want to be a burden to our husband or children, but I guess I can't feel guilty about something I can't control.

I hope to as some of you more specific questions in the coming days.

 

[Domsmom]

Please don't ever feel selfish. The severity of this disease can vary, but even in it's mildest form can be debilitating when dealing with it day in and day out. I'm in the midst of a pretty bad flare myself. I just had a mental breakdown at the doctors office this afternoon. I am literally fed up with it. I am operating on about 30-40% at the moment. I am not a half-assed person and right now I feel like I'm living my life half-assed. My bedroom is grand central at the moment and has been for weeks. I don't know how much more of this I can take. My life is passing by and I'm not doing much living at the moment. I have been on every med imaginable, except the biologics. I'm waiting on my Humira to arrive, supposed to be tomorrow. I'm truly hoping this is my saving grace. If it doesn't work, I'll be having surgery. I'm really fine with that. Anything that will bring relief at this point is welcome. I don't have a job outside the home at this time. All I want too is to be a great mom and wife. I see my performance slipping as far as that's concerned and it really makes me feel worthless. It's nice having this forum to come and unload.
Anyway... Gee thanks for letting me vent. Welcome to the forum. Hope to see you around.

Hi Julie,
I'm glad that you posted this, but definitely not glad that you are feeling so bad. I hope that the Humira works for you.
I was thinking about your post and some of the others last night and in a weird way it made me almost happy. Happy that I'm not the only one who feels this way, happy that someone in this great wide world has some understanding.... Crohn's seems to be at times as debilitating as cancer, but I find that I haven't shared that I have it with many people. If you have cancer people know, and people have empathy for what you're going through. If I have a bad day (or several), and my housework and laundry pile up, I feel that people start judging me and I just want to tell them...but never do.
Anyway, this went off track a little bit. Let me know if the Humira helps you feel better.

 

[Mia Butta]

Donsmom,

Congrats on two healthy babies! (It is incredible how tough the little guys are -despite what our bodies go through). I am so glad that your pregnancies went well.

I was taking prescription Kapidex for LPR (The "silent acid reflux). When I was pregnant, I felt great and thought I didn't need it anymore so I went off of it thinking that it was better to take less drugs for the baby -even though it was considered preg safe. Within a week I was choking and coughing very badly.

That let to bad hemorrhoids. Which after pregnancy led to all kinds of ass problems which is why I'm here on this board. My son is almost 4 months and I deal with butt pain every day. It is beautiful out and I cannot even enjoy taking him for a stroller walk without my baboon swollen butt giving me grief.

Alas enough about me. I wanted to drop you a note and let you know that you are not alone fellow mommy. I heard pregnancy can "rearrange" our bowls where Crohns becomes evident. If I had this before I got pregnant, I never knew it. I feel angry, depressed and helpless -especially being a new mom. I feel robbed of this time that I am supposed to be in "infant bliss". If one more person tells me to enjoy my son because "time passes sooooo fast" I am going fart in their general direction and make them gag on their words. (Of COURSE I am enjoying my son! I have a million pictures to prove it!) But time has not passed by fast for me at all. It feels like a century that I have felt like crap. I would enjoy this experience so much more if I was not plagued with an incredibly painful butt hole.

Everyone has there own personal hellish experience with this dastardly illness -no matter to what degree they are ill. I understand now the demands of motherhood. As an added bonus, I have a deeper appreciation for what life is like for someone who is chronically ill. I hope we feel better soon.

 

[Domsmom]

Donsmom,

Congrats on two healthy babies! (It is incredible how tough the little guys are -despite what our bodies go through). I am so glad that your pregnancies went well.

I was taking prescription Kapidex for LPR (The "silent acid reflux). When I was pregnant, I felt great and thought I didn't need it anymore so I went off of it thinking that it was better to take less drugs for the baby -even though it was considered preg safe. Within a week I was choking and coughing very badly.

That let to bad hemorrhoids. Which after pregnancy led to all kinds of ass problems which is why I'm here on this board. My son is almost 4 months and I deal with butt pain every day. It is beautiful out and I cannot even enjoy taking him for a stroller walk without my baboon swollen butt giving me grief.

Alas enough about me. I wanted to drop you a note and let you know that you are not alone fellow mommy. I heard pregnancy can "rearrange" our bowls where Crohns becomes evident. If I had this before I got pregnant, I never knew it. I feel angry, depressed and helpless -especially being a new mom. I feel robbed of this time that I am supposed to be in "infant bliss". If one more person tells me to enjoy my son because "time passes sooooo fast" I am going fart in their general direction and make them gag on their words. (Of COURSE I am enjoying my son! I have a million pictures to prove it!) But time has not passed by fast for me at all. It feels like a century that I have felt like crap. I would enjoy this experience so much more if I was not plagued with an incredibly painful butt hole.

Everyone has there own personal hellish experience with this dastardly illness -no matter to what degree they are ill. I understand now the demands of motherhood. As an added bonus, I have a deeper appreciation for what life is like for someone who is chronically ill. I hope we feel better soon.

I hope we feel better soon too! But some days I don't have much hope of it ever going away...as much as I try to put it to the back of my mind. It's hard to ignore as a mother, especially when you're sitting on the toilet and your child comes to you with a book and says "up please"...do you think I might be on it to much ?!?! Or ignoring a screaming baby because you have to go...or don't have the energy to get out of bed...

Have you been to a GI specialist yet? What are they doing for you?

The hemmeroids are the worst! Anyway...speaking of crying baby...gotta go!

 

[don1jones]

Hi Domsmom--I have had crohns for many many years. I had a very bad experience with prednisone so I don't take that. I have taken pretty much all the other medications. I haven't found any that helped a tremendous amount but I just started Cimzia. Never had the Remicade. It has only been one week since I started. No side effects to speak of. One medication that has helped me personally is Norpramine. This is an antidepressant that slows down intestines. One side effect is constipation which is what I needed. I take one every morning when I get up. I don't think that taking it once a day will control depression but it has helped my crohns issues. I cannot take the generic tablet as it is not candy coated. It has just the opposite effect on me. The generic is disepramine (sp). This may not help you -- but it has helped me. It has taken many years for me to see that anyone that has crohns--should expect depression. I used to be embarrassed about that as well as just having crohns. But crohns patients have every right to be depressed. Picking yourself up is hard sometimes but--what other choices do we have. I don't have the disease like some of these people on this forum. But we all fight the same battles. I hope you can get the help that will keep you in remission most of your life anyway.

 

[rottengut91]

If one more person tells me to enjoy my son because "time passes sooooo fast" I am going fart in their general direction and make them gag on their words.

:stinks:
Oh Mia, this makes me laugh so hard. .:rof: Now that, that is how people like us get through the day. :ylol2:

 

[Dexky]

Hi Domsmom, I'm sorry I missed your story til now. Seems you've been given some great advice thus far. I wish you well!! Welcome aboard!!