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   You know that song "Ive been everywhere" song? I feel like I could write a "Ive tried everything" song. Asacol, 6-MP, Entocort, Remicade, and Prednisone, nothing recently working, so surgery is up next for me. Its my first (an ileal resection) and Im just looking for some comforting thoughts about post-op and recovery. So if anyone whos been through this could help a nervous soul out, I'd appreciate it...

Some of my concerns:
1- How long is recovery?
2- How bad is the pain?
3- Did you start having symptoms again?
4- When could you eat after?
5- What's staying in the hospital like? (I've never been....)

Thanks,
Missy

 Reply posted for krones1066.

I am due to have surgery next Tuesday. It feels like not me going for it I am distancing myself from the thought of it for now. I am not scared but unsure  what to think.

 Reply posted for Littlestar.

Hi again everyone,

I had a few more questions for resection veterans out there. I'm having a terrible time sleeping- like, in the past 48 hours, I've slept maybe 5 hrs. It could be I'm on Prednisone (but it's a small dose-10mg), but I'm tired and just can't fall asleep. Also, if I do, I wake up covered in sweat. Are night sweats common? And I started having this really painful sensation in my lower right stomach (place of my surgery). It's like a stabbing burning sensation whenever I to stand or sit up. And lastly (sorry for all the questions, but I'm really nervous), my left arm is kinda tingly and at times it goes numb. Is post surgery numbness common? Should I be freaked out?

I've contacted my surgeon and am anxious awaiting his response, but I thought I'd throw my questions out to the endless expanse of knowledge that is the CCFA community. :)

Thanks in advance,
Missy

 Reply posted for Littlestar.

Thank you thank you THANK YOU everyone!

The people on this forum continue to amaze me with their thoughtful and sympathetic responses, but why should that surprise me? IBD people are the coolest people.

Anyway, it's been five days since my surgery and I'm recovering well (ie- able to type coherent sentences). I only spent two days in the hospital because the woman in the room with me was a moaner so I wanted to get well and get out ASAP. But thanks to all your advice, the experience was very non-terrible, almost, ok (minus the searing pain). I brought my teddy bear (thanks for everyone who suggested that) and my iPod (helped drown out the moaning!), so I was actually very at ease.

So now I'm recovering, forcing myself to take things slowly (which is so hard!) and LOVING EATING FOOD AGAIN! Omg, when the doctor told me I could have soft foods, the on the lunch tray I ate was the chocolate cake. Never has chocolate cake tasted so delicious....

But yah, I just wanted to tell you all that I'm doing pretty good. I can now look back on my first surgery without any terrible memories, mostly because of all your advice! Thank you thank you and thank you everyone!

- Missy

 Reply posted for krones1066.

I had my first surgery when I was 16 (last year) and it was interesting. Unlike the 2nd surgery I cried before it. It was scary.

1- How long is recovery?
It took a week for me to get out of the hospital and a few weeks to get back on my feet.
2- How bad is the pain?
For me it wasn't bad. I didn't take most of my pain killers.
3- Did you start having symptoms again?
Well I had an ostomy bag so I had no bleeding but lots of diarrhea
4- When could you eat after?
No ruffage. But I did stuff to help me gain weight. Mostly ice cream. I had lost a lot of weight from being sick.
5- What's staying in the hospital like? (I've never been....)
Honestly I was in a hospital with private rooms so I was ok. Of course you miss home but the pain killers should keep you pretty calm. I was lucky to always have at least one of my parents with me at all times so I never got lonely. Some people may get lonely if they don't have any one there.

 Reply posted for krones1066.

I am not sure if my surgery 8 yrs ago will be like yours but here was my experience. I had my entire colon removed.

First of all how sick are you? I was not as bad as some health wise, but like you exhausted all drug therapy. How old are you? Youth does help in recovery. I was in my early 30's.  Attitude toward surgery helps in recovery.  I could NOT WAIT to get the surgery done.  Anything would be better that what I was living with. 

To answer your questions.

Recovery- I was in the hospital for about a week. Came home very sore. Could not cough or laugh due to the incision. Moved very slow and tired easily.  I recommend having help if you have little kids.  I felt better and stronger everyday.  About 4 weeks is when I felt "good".

I ate soft foods for about 3 weeks. Lost 27 pounds in 4 weeks.

I still watch what I eat.  Never too much of one kind of food.  Especially fruits and veggies (raw).  I had colitis so without my colon my symptoms have not returned.  I am very happy I had the surgery and would do it again if I had to. 

Hospital stay- BORING.  I did not have any complications so it was just resting and making sure I was ready to go home with my bag.

Bring an I-Pod to listen to.  Hospitals are noisy even at night.  It helped me fall asleep and relax. 

I hope this was helpful.  Let me know if you have further questions.

Hang in there!

 Reply posted for krones1066.

Missy-

I am at home recovering from my first ileal resection surgery 3 weeks ago due to Crohn’s Disease. I am 28 years old and had never had any surgeries prior. I will try to answer your questions based upon my experiences over the last three weeks.

1) Recovery Time:  I am walking much faster now and the body is healing nicely.  I still can’t lay flat but that is going to happen very soon.  I’m remarkably better than last week. 

2) Pain:  I won’t lie, the pain is rough.  Pain meds and time do help.  Finding the correct pain medication with the nurses and your doctor is critical.  Initially, I was very slow moving and just about everything I did was painful.  A pillow on the stomach helped a lot and taking pain meds also helped.  The pain is manageable.

3) Symptoms Again:  I have abdominal pain but I understand this is part of the post-surgery healing process.
 
4) Eating After:  I couldn’t eat/drink anything for 24 hours after the surgery (nor did I want to).  On day two, they started me on liquids.  On day three, low-fiber, low-residue diet.  My appetite is still very low.  I am still on a low-fiber, low-residue diet and seem to be tolerating food very, very well. 

5) Hospital Stay:  I was in the hospital for 5 days.  I feel like I was at one of the best, Cedars-Sinai in Los Angeles.  The treatment and care from the nursing staff was amazing. Sleeping was tough since I was fairly uncomfortable, but with nowhere to go the next day, heck, who cares how much sleep you get!  As everyone will tell you, walking in the hospital really helps.  It actually felt good to get up and walk several times a day starting on day 2.  I had a very, very positive hospital stay. 

You will get through this and time will help.  If you have any other questions, feel free to reply to this posting.

 Reply posted for krones1066.

Hi-I just had a ileococic resection 3 months ago. This was my first crohn's surgery (was diagnosed Jan 2007) but not my first surgery. Unfortunately I've had numerous other surgeries for other health problems over the years. I was in the hospital for a week and was out of work for 8 weeks. I didn't bounce back as fast as I thought I would but I think it's because my body was just so "run down". I'm doing pretty well now. The "grumbles" as I so fondly call them EVERY time I would eat are gone for now and I am going to the bathroom less than I have in the past couple of years. The constant pain is better (not totally gone) and I've gained back 10 lbs already! I tried to just take it one day at a time, slowly increasing my activity as I could tolerate it. When I went back to work I went back at reduced hours for the first few weeks and limited any unnecessary bending and no lifting. The pillow suggestion helped me too since my surgery called for reopening my C-section scar. I also tried to have my house "ready" for my return from the hospital: stocked up on liquids/gelatins/puddings/Ensure, etc.., cleaned the house so I wouldn't be tempted to do housework, lined up friends to help if my husband/daughters weren't able too, etc..I hope all goes well with your surgery and let us know how you are doing!:)

 Reply posted for krones1066.

Try not to be scared about your surgery.  Try to focus on how much better it will make you feel in the long run.  I had an ileorectal anastomosis 5 years ago and in May 2008 I had surgery due to a perianal abcess and fistulas.  I now have an ileostomy.   I was in the hospital for about 6 days   The pain was not bad at all.  For a day or 2 I had some pain, but they give you medication to manage that.  Don't be afraid to tell the nurses that you are in pain.  Usually the doctor leaves and order for pain medication and how often you can take it, so just ask the nurses.  Don't be afraid to ask them questions about anything because they are there to help you.  They will have you up and sitting in a chair probably the day after surgery and then walking the day after that.  It may be a little tough at first, but the nurses will help you.  Just remember the sooner you can get moving on your own, the sooner you will be able to come home.  It was at least 3 days before they would allow me to have anything to eat except for ice chips and water.  Then I started off with just clear liquids and gradually moved on from there.   Take along things that will make you comfortable.  I took my own pillow with one of my son's pillowcases on it.  Take along a comfy blanket and some pictures.  Also take a good book to read or crossword puzzles.  You need something to keep you occupied while you are lying in bed.  Also remember to take along a list of phone numbers of family and friends so you can call them. When you come home, don't push yourself too hard.  Remember your body needs time to heal.  But don't just lay around either.  Try to do a little more each day.  Go for little walks and enjoy the sunshine.  I wish you well.  My prayers are with you .  Good luck.

 Reply posted for krones1066.

Krones,

I really feel for your I was 19 when I had my first surgery and not one person explained anything to me, so maybe I can help you, 

The stay at the hospital will not be bad, bring what ever makes you comfy like a pillow or blanket or stuffed animal, I bring all of these things plus pictures of my dog, she really makes me feel better. 

The nurses will make sure you are comfortable and that you are not in a lot of pain, they will though make you sit up and get in a chair next to your bed after surgery much later like the next day, they will help you walk and get you moving as the sooner you do this the sooner you will be able to go home and start to feel better.

I normally am able to eat as soon as my bowels start making sounds again after the surgery, about 3days, they will start you out on a liquid diet and then a full liquid diet and then a low residue diet.  Once you are eating and able to walk and go to the bathroom on your own they will start to think about when to send you home.

One thing to help you try to get a small pillow, you know like one of those ones for traveling in the car, and hold it against your abdomin when you laugh, or cry or cough, or you are trying to sit up and get out of bed as simple as this is it really will make a difference for you.

Once  you get home don't push yourself too much, but make sure you are moving and not just laying around, remember do a little each day and make sure you drink and eat like they tell you too and you will do just fine.

I have had 6 bowel resections and might be going in for another one soon, things do get better and the doctors and nurses are wonderful they will help you and make sure you are doing well. 

I will be praying for you, good luck and I hope to talk to you soon,

Littlestar