Hi everyone...just diagnosed

[ktyler]

Hi everyone, I was just diagnosed with Crohn's disease two weeks ago. My name is Kim, I'm from Louisiana. My husband and I have two beautiful little girls, Madisen is 9 and Lindsey is 6. My sister also has Crohn's, so when my symptoms started I kind of figured this is what it could be. Mine came on very sudden, I was passing blood in my stool and then started throwing up because the stomach pain. So my dr. put me into the hospital after doing a ct scan that showed my colon was inflamed. They started me on medicine, entocort and flagyl in the hospital. I was in for 4 days and had a colonoscopy while I was there, that showed I had Crohn's. It was in my ileum and three spots in my large intestine she said. They sent me home with with two antibiotics and the entocort but it only continued to get worse. I couldn't eat anything and was loosing weight and passing nothing but blood. I also developed really bad hemroids from going to the bathroom so much, I thought it could only be caused by constipation, but I guess not. I went to the ER last tuesday and was in the hospital until Sunday afternoon. They started giving me solumedrol (sp??) and multiple antibiotics by iv while I was there. I came home Sunday afternoon and am now taking prednisone and flagyl. I go see my dr. on Thursday, I can't wait, I have lots of questions for her. She was gone to a GI convention the whole time I was in the hospital, so I was just seeing who was on call for her. I also developed a yeast infection in my mouth because of all of the antibiotics, so they had to treat me for that too. I'm feeling a little better now that I'm home. I have noticed that the blood seems to be coming back though when I have a bm, is this normal? I'm guessing it will take the medicines a while to kick in. Also do you always have diarrhea the whole time you are having a flare up? I have noticed my stomach pain is not nearly as bad but the diarrhea is still there. My daughter is playing in an all star softball tournament this weekend and I'm really really not wanting to have to miss it, but I'm also nervous about being away from my house for that long. This sucks and is hard getting used to, I've never in my life been sick and this hit me like a ton of bricks. I didn't even have a regular dr. to see, I had to call my ob/gyn for him to get me in to see someone when the symptoms started. I seem to have gotten really fast results compared to some of your stories I have read on here. I look forward to meeting everyone. I talk with my sister about it, but hers is in complete remission right now, so she's not really dealing with it. She found out 6 years ago she had it, and ended up having to have a resection done 5 years ago and she has not had one problem since.

Kim

 

[bethyd78]

Hi Kim
I am new to the site also but not new to this disease it can be very mean. Sorry to here you have it. It hits everyone different. This is the best place to have all of your questions answered too! Sounds like its pretty tough for you right now. All that bleeding sure got you attention fast. Well I am from Mandeville, La so we have something in common other than Crohns. It takes a while for the meds to kick in and for them to find the right combo for you. Are you using anything for the Hemmroids (sp?) b/c that may help some. Also I found out about this wonderful cream that everyone on hear uses its called Calmoseptin it is wonderful it puts the fire out down there I mean now. I had to ask Walgreens to order it for me I got it in a couple of days. I hope this helps.
Bethy

 

[sandylou]

Welcome to the club!

Hi Kim!
Welcome to the wonderful world of Crohn's. I was diagnosed 19 years ago, and have been around the Crohn's block several times. I just posted my story -sandylou- this morning. As far as the diarrhea goes (no pun intended), my Gatro doctor has me take Metamucil every morning. This helps slow me down at the start of the day. If I don't take it, I'll have 5 or 6 diarrhea bouts before 10:00am.
Flagyl and Prednisone are stand treatment for a flair that really gets going. How much Prednisone are you on? Prednisone turns me into a insomniac-cranky woman. The yeast infections go with the flagyl, just part of the fun!
--Did they tell you to go on any special diet? It sounds like you might be challenging your system with too much fiber, just coming out of the hospital.
You might want to try to stay with what I call my 'calm' diet, white bread, eggs,
no to little fruits and veggies. Ask your doctor for Lomotil for your diarrhea, it will help calm your guts down.
---Be patient with yourself, you'll learn what works for you as far as diet and drugs. I love this forum already. I have never talked to another adult with Crohn's...until now!!!!

 

[ktyler]

Thanks for the replies. They have me on a low residue diet, they told me to do completely opposite of a high fiber diet. I've been eating scrambled eggs for breakfast. I've been nervous to try any kind of meat really. I've nibbled on a small amount of chicken and ground meat since I've been home, but not much at all. But mostly living on potatoes. I find that after I do try to eat I get a hard pressure feeling right at my belly button, it's hard to the touch. This is where most of my pain was when I was first diagnosed a couple weeks ago. The pain is not near what it was, now I only notice the pain when I need to go to the bathroom, not every time I eat like before. Bethy I'll check out that cream, actually they don't bother me really. When they first came out I was in alot of pain, this was on Friday and when I went to the ER on Tuesday morning they freaked out and said I needed to have surgery to remove them. But after Saturday the pain wasn't bad with them. The surgeon we met with really didn't want to operate with me having crohn's so close to the rectum, so he put me to sleep and put it back inside and packed it and then has been treating it with suppositories while I was in the hospital. They sent me home with a hydrocortizone cream to use. I just worry now that I may have issues with this every time I have a flare up now. I've never in my life had a hemroid before. The prednisone that the have me taking is 5-10mg tablets for 5 days, then 4 tablets for 10 days, then 3 tablets for 10 days, then 2 tablets for 7 days and finally one tablet for 7 days. I'm quite nervous about the side effects, I've never really taken any kind of medicines before and am so worried I'm gong to turn crazy on my poor family. And the flagyl is 250 mg 3 times a day. It's good to talk with other people dealing with the same issues.

 

[sandylou]

Hi Kim!
I know your head is full of Crohn's thoughts right now...try not to anticipate drug reactions until they happen. We all react differently to this disease and the drugs.
Always have something to look forward to, and think about that. If you feel the need to go crazy, do it here, because we've all been there!

Sandy

 

[misscris]

Hi KTyler. Welcome to the forum. Looks like you have a lot going on right now. I hope you get all your answers when you see the GI Thursday. This seems to be a great place to get some answers to your questions as well. I hope things improve for you soon!

 

[JillianB82]

Hi Kim!

We are glad to have you I hope your GI has lots of answers for you! Keep us posted!

 

[ktyler]

Thanks for the welcome everyone. I've got another question. When I was in the hospital I had my IV in my left arm after a few days I started really swelling alot, the dr. said that it was a combination of the medication and me not moving as much that when I got home I should see a difference. Well I have noticed I'm not near as swollen any more, but my right ankle is still really swollen, can't see the bone, and my lower back and stomach is still really swollen. My stomach hasn't looked like this since I was pregnant for my daughters. I'm 5'6" and about 115 lbs right now, I normally would carry my weight around 127-130 before the crohns diagnoses, so I'm down a good bit, and it's pretty easy to see the swelling. Does this seem normal?

 

[kello82]

hey kim and welcome!
to try and answer your question, yes crohns patients can have swollen stomachs due to the inflammation or also due to malnutrition.
have you told your doc about it though? it should get checked and make sure its not something serious, but a distended abdomen is a syptom that we deal with.
also the swelling in the ankle, does it hurt as well? arthritis is yet another thing that we crohnies deal with and can cause our joints to inflame and swell up.
i would get both of these things looked at though, to make sure its just the crohns acting up.
good luck!

 

[ktyler]

Thanks for the reply. I go see my dr. tomorrow, so I have lots of questions for her. She was out of town at a GI convention the whole time I was in the hospital last week so I didn't get to see her. The swelling in my ankle doesn't hurt, just swollen. I figured that's why my stomach was swollen. I do notice that when I stand up, I feel really weak and shaky feeling. But I was also laying in a hospital bed for 5 days before and not eating a whole lot, I'm just hoping its all coming from that.