17 days in the hospital later....

Here is my story...

Sunday morning on Father's Day June 17th, 2012 which was also my 9 year old son's birthday and my dad's 67th birthday this year, I woke as always, felt fine, made a smashing breakfast for the family, cut fresh fruit kabobs and watermelon for the snack after my son's All Star baseball game and went to the Baseball park hoping to watch my son hit a homer on his birthday.

Then about halfway through the game it hit me. I got the chills, my stomach kinda hurt, I was feeling shaky and just plain sick. Frankly I just thought it was a hangover that was hitting me later on with the heat of the day. Had a pretty good family birthday celebration the day before!!

After the game, I still felt like crap but was to go to my mom and dads with the kids for dinner to celebrate fathers day and birthdays. Took our presents, and wend. I went straight to the couch and didnt move not even for birthday cake and singing with my son I felt so horrible. I thought maybe its the flu. I had a pretty high fever, took some advil and tried to rest. After dinner (I didnt eat) we went home and I tried to sleep but my fever was 102 and I was shaking like a leaf. I took a bath and finally got a little sleep. Then next morning I awoke with severe pain in my lower right abdomen and thought this isnt the flu this is bad. I went to urgent care and was told I probably had appendicitis and to go to the ER.

At the ER on June 18th a CT scan revealed that it looked like I may have Crohns. I was admitted put on antibiotics and I dont even know what else and started feeling better. I was on a clear liquid diet for two days and then they decided to switch from a clear liquid diet to a liquid diet and from IV antibiotics to oral meds. The next day I was in the worst pain yet! I was put on morphine then duladin and was just in gut wrenching pain. I dont even know what happened for a couple of days while I was there. Anyway after trying this, that and the other with nothing helping, they decided on the 27th that surgery was necessary. By this time I had already been in the hospital for 10 blasted days I was ready to get out!!! I am a teacher this is or was my summer vacation!

So surgery... they took out what the surgeron referred to as a convoluted mess of 3 inches of my large intestines, a foot of my small intestines and my appendix. The surgeon said it was an infected tangled mess all on top of itself. I had ifectious disease doctors in my room daily testing because my blood had an so much infection in it they put me on some other anitbiotic called micafungin. I had a central line and TPN bag of white liquid food for days and days. There was so much sugar in that space food stuff that I had to have my finger pricked every few hours and had more insulin shots than I can count. Things settled, started healing and they finally let me go home on July 4th.

Tomorrow July 11th, I am going to have the staples removed and hope to have at least a week of summer in a pool before going back to work.

I am new to Crohn's, wide awake because of 40 mg of prednisone, anxious about my Remicade, and dont know what to eat!! I feel weirded out because of all the drugs I'm still on. (pentasa, prednisone, fluconazole, and defurozime) Still waiting to for insurance to approve Remicade so I can start that and get off prednisone I hope.

I am glad this is here so I have something to read since I can't sleep. Another 3:00 AM is about to find me awake and foggy.

Thanks for creating and posting.
39 years old and new to Crohns

Welcome Krispy & welcome to Crohns!
Are you taking your pred in the morning? It's notorious for causing insomnia - so taking it in the AM can sometimes help.
I feel for you losing your holidays to the hospital - I spent my last long holiday break in the hospital and a reasonable chunk of term one recovering from surgery.
It was pretty crap.
Enjoy the one week you have left! And hope you're feeling better.

Hello there, I'm so sorry for what you went and going through I know it sucks my Crohn's like to flare up in holidays especially right after I board a plane or a bus, hopefully you will achieve remission soon. I'm on Remicade (I just had my first infusion 7/7) and Pentasa ( 2 years). I second pred ability to cause insomnia, I'm off it due to horrible reactions I develop to most steroids though.

Food tolerance differs from each Crohn's to another, I personally can't have coffee, black tea, beer, all dairy products, soda, oily or fried food, butter , corn and I drastically cut down on sugar. I avoid junk or processed food, I depend over home cooking in which you can control the ingredients and substitute if needed.
I think best thing to do is to keep a food diary, write down everything you eat and how you felt and how was or frequent your bowel movements afterwards. Start with things you know you can eat fine and try to add a new thing every couple of days so you know what caused the trouble if it did.
I hope you enjoy the rest of your holiday and keep us updated

Wow, you just jumped right into this mess with both feet, huh? Sorry you had such a rough beginning. I hope it's all remission from here on out! Good luck with the Remicade.

Welcome to the forum! Sorry you need the forum but I'm glad you found it! It's a great place for support and advice.


I take my Prednisone in a divided dose. I do 20mg in the morning & 20mg at night. My GI's have always done this because if I take it all in the morning, I'm burnt out by the time bedtime arrives. Maybe taking it all in the morning would help but that's something to talk to your doctor about.

Hopefully the Remicade gets approved quickly & it will get you in remission! If I can give you any advice, it is to drink a lot of water before the infusions, bring a good book/laptop/Ipod and a blanket. I felt like a tired mess during and after the infusions. I slept through 90% of it but before the infusions(& the Benedryl) I usually got some reading time in. Also, look into Remistart. That, along with insurance, makes a difference in your pocket! I have great insurance but with these medications, as you'll soon find out, everything helps!

Take care!

Hello Krispy and welcome to the forum, I must say you have certainly started off with bang! I agree that it is certainly worth starting a food diary so you try and pin point problem foods and perhaps try taking the pred at a different part of the day, one thing I would ask if if you have been put on any type of calcium supplement? If not ask your doc about this as whilst on the pred you need to be on something to help protect the ol' bones. Also ask to have a full vitamin panel check as it is common for us crohnies to be deficient in such things as B12, D, Folate etc especially after an op like yours and low levels can cause a whole new host of issues.

With regards to the Remi many here have found great success with it so do have a nosy at the sub forum for this, especially the club thread which is really helpful: http://www.crohnsforum.com/forumdisplay.php?f=58.

Wishing you all the best.

AB
xx

I am so sorry you started this way, but take hope, this place is full of information. I detest Prednisone but take it when I have to. Take some time for yourself, get up to speed on all the info you can, and get lots of rest. You are in my thoughts and prayers.

Thanks to all of you for welcoming me. I am going for my remicade tomorrow and started tapering the prednisone today. It has been great to read the posts about all the different drugs. I have come to grips with feeling weird on prednisone and have accepted that I will start the school year with a chubby face. I just hope the mood swings subside before the school year so I do not unjustly yell and scream and a class of frightened second graders. LOL. I have been back to my GI with a ton of questions but not getting answers I feel I should. I asked about diet and he told me I can eat whatever since the surgery removed all the inflammation and strictured part. I want to eat healthy but am afraid of raw veggies of course on the prednisone I am eating everything I can find.

Hi krispy and welcome to the community I'm so sorry to hear what you've been through, that's rough!

Regarding diet, when it comes to people with Crohn's Disease, I'm a big fan of the paleo diet and SCD diet.

A few questions:

1. Did you have any sort of symptoms prior to that initial outbreak? Diarrhea, abdominal pain, weird rashes, etc? Or did everything start right then and there?

2. Did they biopsy the portion of the intestines that was removed? If so, do you have the biopsy report?

3. Have they talked to you about monitoring your vitamin b12 level? That last foot of small intestines is where most B12 is absorbed. As such, you're at risk for deficiency and should have your B12 levels monitored.

4. What other questions did you ask your GI that you didn't get an answer to?

Again, welcome to the community!