New, confused and scared

[S.Straube]

Hi, my name is Sarah. I'm new to the forum and new to Crohn's. I received my official diagnosis last Monday, 9/17. It has taken since May and tons of tests to get diagnosed. My doc hasn't been very forthcoming with results or explanations, I've looked up most things myself and had to pry the "official" diagnosis out of him.

In 2006 I had a two week period where I couldn't eat anything solid, it gave extremely painful stomach cramps and nausea, even a tiny piece of fruit in yogurt had me curled into a ball. For those two weeks my doctor couldn't figure anything out. I lived on slim fast and vanilla yogurt. Then it began to subsidy with occasional irritation. I would have liquids for 24hrs and I was good to go. The only thing I could pinpoint that irritated me was eggs. I couldn't eat them for almost 3yrs.

Then in May it started again, except this time the severe cramping and nausea lasted until July and then went to light cramping with nausea where I'm at to this day. I don't have and have never had constant diahrrea though. I have the opposite problem. Is that common in Crohn's?

I've had a colonoscopy, upper GI, pillcam, SBFT, numerous x-rays and tons of blood work. My doc started me on 60mg of Prednisone. Today was first dose and so far I'm miserable. I will slowly taper down over the next four weeks.

I dont know anyone with Crohn's. The one person I did know recently passed away after a long, horrible fight with the disease. Since he's the only person I've known with it, my diagnosis scares me! My family is sympathetic and tries to understand, but since I barely understand it makes it harder. I have a wonderful husband and three great kids. Trying to explain and understand a life long disease is complicated. My husband says to stay off the internet because I'll only freak myself out, but I don't know where else to turn, its not like I have a crazy, nasty cold that won't go away.

I open to any suggestions, recommendations or tips anyone can give on anything from family to diet. Thanks bunches!

 

[guitarjamie03]

Sarah,

First, welcome to the forum! This is a great community of people from all over the world that have Crohn's. I love coming here looking for support when I am having a rough day. Like you, I too was diagnosed this year (back in June), so I know what you are feeling and a lot of this is still new to me a well.

My first suggestion would be to find a good doctor that you can really trust, if you don't think you are getting the best care, go else where. If you can, try to find a GI doc that only sees Crohn's disease. This may not always be the case, but try to find someone that knows a lot about the disease. For me this made all the differnce in the world. My doc only sees Crohn's so he knows what he is talking about.

Second, know that you will be alright. Once you get on the right meds, you will start to feel better and know that it is going to take time. Most people that have Crohn's go on to live healthy and active lives! I just strated Humira a few months ago and even though it has taken a long time to start working, I am already starting to feel like my old self again!

I would also try to learn as much as you can about the disease. The more you know about the disease the more you will be able to tell your family about what's going on inside you. But remember, no two cases of Crohn's are the same. Like mine is totally different then what you have. Here are some good web sites that might be helpful:

http://ccfa.org/ (This is Crohn's and Colitis Foundation of America. This site will help you find support groups and events in your area and well as tell you a lot of information about the disease.)

http://www.healthline.com/health/crohns-disease (I go to this site a lot becasue it give you a lot of helpful inforamtion on diet, exercise, treatment options, medication, ect.)

That will at least get you strated.

Best of luck to you and I'll be praying that you start to feel better soon! :hug:

Blessings,
Guitarjamie

 

[Angrybird]

Hello Sarah and welcome to the forum

I can only second what Jamie has said, if your doc is not forthcoming and supportive then perhaps look into seeing a new one, it is important to feel comfortable with your doc.

With regards to meds has anything been mentioned about what comes after the pred? Do you have an appt soon to discuss this? It is possible with the right treatment for you to feel well again, it may take a little trial and error but if you look at our treatment section you will see there are a lot of options available.

Also as mentioned do educate yourself as much as possible so you can advocate yourself when seeing your doc and don't hesitate to question anything that you are not sure on.

I am glad you have decided to join, there is a lot of helpful info and support here. Please keep us updated on how you are doing.

AB
xx

 

[David]

Hi Sarah and welcome I'm so sorry to hear about your diagnosis

While your husband is correct that there is a lot of stuff about Crohn's that can be scary, considering that, at present, this is a lifelong disease, in my opinion, it is best to educate yourself as much as you can so that you can be proactive and advocate for yourself like Angrybird says. THIS is probably your best defense AGAINST the scary stuff ever happening.

We're here for you anytime you need us. Whether you need advice, to vent, or just want someone to listen, we're here 24/7

 

[S.Straube]

Thank you all so much for the positive words and advice. I will definitely check out the websites and I will get some books.
I don't see my doc until 10/16. There was never any discussion of what's coming next except possibly more tests. My SBFT, which was my last test done, showed that my stomach doesn't empty normally and he doesn't know why. My stomach was enlarged and at 50 minutes well over 50% of the dye was still in my stomach. He chose to wait to see if the prednisone does anything to help the situation, I'm assuming.
Today seems to be better, yesterday I was so nauseas and my legs hurt so bad! Is that a normal reaction for most people the first days? My doc had me start at 60mg and be on a liquid diet for the first two days. Today the nausea wasn't bad, but I've only had water and my legs haven't hurt nearly as bad as yesterday. I'm hoping this means my body is adjusting well. I just would like to feel and be normal again.
Thank you for listening. It is nice to be able to talk to people that understand!

 

[Earnellzwifey]

one thing you asked in your post was can you have Crohn's without the constant d's. the answer is yes you can. there are some on this forum that suffer from c more than d.

As far as your legs hurting have you had your potassium or magnesium levels check recently. it these levels are low that can cause major muscle cramping. I use to suffer with it horribly before my Dr started me on supplements for it. you might want to try and drink and electrolyte drink like Gatorade and see if that helps it has a lot of daily vitamins in it that crohnies lack so often.

As far as the family goes it kind of depends on the age of your children. Mine are 17 and 13 so I was straight forward with them that mommy was probably never gonna be the same mommy they use to have and that I would need them to help me more than before. it was kind of easy for me since I have been sick their whole lives. hopefully some other parents will give you some suggestions on how to break the news to them.