New to Crohn's!!

[alliem419]

Hi Everyone. Im a 24 year old female and was just diagnosed with Crohn's last week after having a colonoscopy. I always knew that something was up with my stomach but I guess it takes some time to figure it out.

It is weird because about 2 years ago, I all of a sudden came down with Diarrhea that stuck around for about 6 months. I had just come back from the Dominican Republic so they thought it was a parasite but after multiple sets of stool tests, prescriptions of antibiotics and anti parasitic meds, nothing helped, until all of a sudden it went away one day. A sigmoidoscopy was also done but they didn't see anything abnormal (I guess maybe they didn't go up high enough to find anything).

So now, for about 3 months, I have had blood and mucus in my stool, and about 3 weeks ago I had terrible diarrhea again for 2 weeks, which ended up going away on its own before the colonoscopy. The doctor informed me that I had crohns (inflammation for first 10 inches of colon, and then again where the small intestine starts) after conducting the colonoscopy. He started me on asacol and canasa.

I am so confused, as I haven't even had a follow up appt. with the doctor (it is scheduled for this Friday) so I have no idea how bad it really was. I read some of the posts on this forum, and it seems like a lot of people have daily pain, but besides the bleeding, mucus and occassional diarrhea, I, for the most part, feel fine (now that the diarrhea/cramping has stopped).

Anyway, I'm wondering about long term issues with this disease...do most people with crohn's end up having to have surgery...or do only a portion of crohn's patients have surgery? I am so worried about how it will affect my job (I had to miss 2 days 2 weeks ago when I was in the flare up), or when i get pregnant in the future. I'm also getting married in September and am deathly afraid of having to run to the bathroom that day...any advice for those of you who have had weddings while having this disease? I am hoping I am not in a flare up that day!

Anyway, thanks for listening!

Alison

 

[5 iron]

Welcome alliem419/Alison Im new to Crohns also, Nov 2009, well your treating your crohns now and sure by Sept you and your doc will have your D under control and your wedding day will perfect.

currently on humira and pentasa

 

[Crohn's 35]

Hi Alison, Welcome to the forum, you have found a great place for information and experiences from people of all ages, from all over the world. If you are not in pain, it is a blessing, not everyone is in pain all the time. Flares come and go, and treatments do help and diet is alone is not enough but really helps keep your symptoms at bay. Stress is a major culprit, causes your symptoms to surface, not at that exact time but sometimes affects you later. Crohns is best to be controlled with the less invasive or mild to moderate drugs. Tests take time and medications are not always one-size-fits-all. We are unique in our symptoms and some bleed, some dont, I dont. There is some help with diahreah, and you can get Questran from your doctor.

Most people who get pregnant do very well and no symptoms during pregnanies, talk to your doctor in case of drug related problems.

Try not to worry, your wedding will be just fine. In the meantime look after yourself, and educate yourself as much as possible. Not everyone is the same! Glad you found us!

 

[InkyStinky]

Hi Alison! Welcome!

Crohn's seems to affect everyone differently. I was diagnosed as a kid and haven't had any surgeries yet because the meds I'm on handle my disease pretty well. Your flare up sounds like what mine are usually like - pain/D/bleeding until the meds get it under control, and then I get to feeling "ok".

Congrats on your upcoming wedding! I was in remission when I got married, so I didn't have to worry about getting to the bathroom in a hurry. It helps to get a lot of help planning your wedding - you don't want too much stress to trigger a flare. And talk to your family and friends about your concerns - sometimes just talking about your worries helps relieve the stress - and maybe you can have a few good friends standing by to help you with your dress if you do have to run to the bathroom in a hurry. But like 5iron said, I do hope that by Sept your Crohn's will be well controlled so that you won't have to worry about it!

I've heard many success stories about being pregnant with IBD - from what I understand there are meds that can keep the disease in remission without being too much of a risk for the baby. Once things calm down for you a bit your doc should be able to help you out with a plan to follow when you're ready to try and get pregnant.

Again, welcome!

 

[Astra]

Hi Alison
and welcome

You're in the right place for help and advice, I've had 2 successful pregnancies with Crohns (altho I didnt know I had it then) and Penny is right about the stress, try not to worry about what might/might not happen on your special day!
glad to have you here
lotsa luv
Joan xxx

 

[violetcreams]

Hey Allie, welcome.

I'm planning to try to get pregnant this summer. My gastro Dr says my meds are safe for pregnancy (azathioprine 125mg, budesonide 9mg, 6 pentasa a day, 3 mebeverine & calcium, folic acid & multivitamins). Without these meds my quality of life would be really poor & I wouldn't be able to even consider trying to conceive. It's all about weighing up the risk.

I hope you have a lovely wedding day! xx

 

[Jer's Girl]

Welcome Alliem! Listen to these people! They have helped me get through a lot lately, and they have a lot of knowledge to share with us. I know being diagnosed with Crohn's is hard, but the more you know, the easier it is to deal with it.

Congrats on the wedding! I am getting married in July and I have the same fears that you do. All I can say is that stressing about it is a self fulfilling prophecy as stress has horrible effects on Crohn's. I know it is silly to say try not to be stressed when you are getting ready for a wedding, but do your best. If you are not in a flair right now which it sounds like you are not, then there is no reason to think that you will be in one then.

I recommend navigating this site to get as much info as you can, and just really taking it easy on your guts, especially right before the wedding. Good luck!

 

[CDDad]

Hi Alison,
About your wedding - I'm the type of person that is a planner, so I would try and make sure I had some insurance for that special day. If the diarrhea comes back, experiment with Imodium. If not that, then maybe your doc can prescribe Lomotil. That will stop diarrhea cold for some folks. For me, it was low dose codeine, but that is for chronic diarrhea that will not respond to other treatments. I hope you find something that works for you.

If you don't respond well to Asacol and Canasa, many of us moved on to Humira.
Prednisone would not be great for your wedding day - unless you want to gain 20 pounds! At higher doses, it makes me eat like a wild man.
Best of luck to you - sorry about the Crohns diag!

-Joe

 

[whysoserious]

Hi Alison! I'm new to Crohn's as well--actually, I'm still in the process of trying to find out if I have it or ulcerative colitis or something else entirely. I got married on the 13th. I had been flaring up the entire week before, but fortunately the only symptom I had on my wedding day was pain. I know this is going to be hard to do, but try really, really hard not to stress about it. Be really careful of what you eat before the wedding, especially if you are food-sensitive.

My wedding day wasn't very conventional due to me being sick, but I still had fun! I will keep my fingers crossed for you.