I'm finally having surgery! My 1st! Would love suggestions on making it easier

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Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 1/29/2010 3:50 PM (GMT -7)   
I've been thisclose to surgery before and each time, a great med worked magic and I avoided it. Sadly, Cimzia didn't hold up it's end of the bargain and I am left without a choice. Once I finally resolved myself to the surgery, I was ready right then to do it. I finally saw the surgeon yesterday and they are getting me in on Wednesday!
 
He is confident it can be done laparoscopically. Says to plan a week in the hospital and about 3 weeks at home following. I'm franctically trying to get an entire month's worth of work covered but so far, things are falling into place.
 
What kind of diet did you eat following your surgery? They are removing part of the terminal ileum and possibly some additional parts in order to get rid of fistulas. We have people wanting to bring over food as soon as I'm home, and I think that'd be helpful to have on hand, so I just wonder what kind of food issues I may have so I can tell them. My DH will also want to stock the fridge with some things I can easily eat while he's at work. 
 
Once home, were you able to lay on the couch? Sit in a chair? What was comfortable for you? How long before you could drive?
 
What was your pain level like in the hospital? What kinds of things did you bring with you to the hospital?
 
Sorry for all the questions - thanks for any additional info you can give.

artist guy
Veteran Member


Date Joined Jan 2010
Total Posts : 1373
   Posted 1/29/2010 4:10 PM (GMT -7)   
aimee, I can tell you with experience they will put what is called an NG tupe in your nose that pumps bile out of your stomach. they should any way. an that is a good thing very uncomfortable but it is one needed tool. they will remove that when you either move your bowels or pass gas. I had so many on every trip to hosp. but at my sickest I had one for 6wk's. if you wake up from surgery with one in your nose, don't complain. eat what you can tolerate. after my surgery when they removed 8ft of disease, and ng tube was gone. I felt healed(not counting wires to hold my stomach together) I wanted to eat everything and anything, and they gave me an open menu, steak fries, I evan asked for mellons that weren't in season and someone from the kitchen went to a store somewhere an I had mellons for my lunch. I think back and they were 1 sick of me, 2 so happy to see me well. when I was discharged the nurses blew up some surgical gloves and tied them off and put smiley faces on them and came to my room and threw them in the air. To much info. eat smart, eat healthy, good luck you'll do great

artist guy


hld4good
Regular Member


Date Joined Jan 2010
Total Posts : 193
   Posted 1/29/2010 4:50 PM (GMT -7)   
All 3 of my resections have been from 4cm to 14 cm. of terminal ileum, plus the ileocecal valve and the cecum. The cecum seems to be a transition from ileum to colon. Since I was instructed to have only clear liquids 3 days before, I didn't need an NG tube last time. What a relief to wake up without that thing in my nose. But if you have to have one, it won't last long. My pain was controlled very well in the hospital and I didn't need prescr. pain meds when I went home 5 days later. I had the full vertical abdominal incision, so if you have a laparoscopy, you'll have even less pain. The incision is tender for awhile, but mine never felt true pain. The hardest part is that you begin to feel better and soon discover that you are exhausted all the time. You will nap alot and that is good because your body is healing. I was always told to re-introduce solid food slowly. For me, organic chicken broth with crackers, then I would try oatmeal and toast the first day at home. From that point on, your body will tell you what you can handle next. I could do all the things I normally did at home, except vacum. The doc told me not to lift anything heavier than my spoon. He was pretty funny. You can lay in bed but that gets boring. You can lay wherever you are comfy.

I was allowed to get out of bed in the hosp. only for bathroom visits, and since the pain meds made me loopy, that was fine. I slept most of the first two days. It's not a good time for visitors unless they like talking to themselves. I wish you the best. You are going to feel like a new person right away and strong in a few weeks!
58 years old;
Crohn's since age 21
3 bowel resections, 1980,88,95
1 fistula repair, 2005
probiotic
digestive enzymes
L-glutamine powder 3 times a day
sublingual B-12 and B complex
2 T. cod liver oil
2 tsp. tart cherry juice concentrate
Multiple vitamin, 2,500mg vit. C, 1,000mg calcium mag.


Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 1/29/2010 5:44 PM (GMT -7)   
#1 thing to take with you to the hospital....TOILET PAPER! The crap (no pun intended) they have in hospitals is like sandpaper. I always bring my own!
Becky

31 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D, sublingual B12, Coumadin


Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 1/29/2010 5:45 PM (GMT -7)   
Oh, forgot to tell you good luck and I hope everything goes well! Let us know how you're doing when you can!
Becky

31 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D, sublingual B12, Coumadin


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 1/29/2010 6:06 PM (GMT -7)   
Good Luck...don't worry too much and walk as soon as you can! It will keep things moving and get you home sooner:)

I always use an ipod or mp3 player to sleep with- it drowns out noise at night.

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 1/29/2010 8:32 PM (GMT -7)   
I wrote all about my surgery last fall here: http://www.healingwell.com/community/default.aspx?f=17&m=1601270 . about 18 posts down, I gave the rundown all the way from prep to going home. After that I answered some more questions people had (like what I brought to the hospital), and even included a pretty picture of my surgeon's handiwork.

Good luck! I think you'll be happy with the way you feel once that dang stricture is gone.

*activated your link*

Post Edited By Moderator (Nanners) : 1/30/2010 7:43:35 AM (GMT-7)


Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 1/29/2010 8:49 PM (GMT -7)   
Thanks, Spookyhurst, for posting your link.

Will I have to have a catheter? I've never had one... and would really rather not ;) Is that standard?

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 1/29/2010 9:14 PM (GMT -7)   
If you have a catheter, they'll probably put it in once you're put to sleep and it will be taken out in the recovery room.
Becky

31 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D, sublingual B12, Coumadin


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 1/29/2010 9:39 PM (GMT -7)   
Lots of good advice. Make sure the person who controls the pain relief you get post op gets you enough. (let's the nurses add more if needed.) The first night can be uncomfortable if not enough is given.
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 1/29/2010 9:57 PM (GMT -7)   
I think a catheter is standard. They put mine in when I was knocked out, and then pulled it the next morning.
34 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR, Zyrtec
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, Magnesium, Coconut Oil, Garlic Oil, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 1/30/2010 7:31 AM (GMT -7)   
I had a catheter, they put it in when I was sleeping and took it out 3 days later. It's not that bad coming out.
As for surgery, walk,walk and walk some more. That worked for me. I did not have any fatigue as I was on pred.
Good luck! I wish you all the best!
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications:Humira,  Asacol, FolicAcid,  Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Pepcid Complete, Questran,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/30/2010 7:51 AM (GMT -7)   
I have had two open resections. I won't lie mine hurt alot when I woke up (pain is very individual), but they give you good pain meds. My suggestion about pain meds is to ask the anesthesiologist for a pain pump for after surgery. This way you are able to administer your own pain meds as needed instead of having to wait for the nurse to bring it. Don't worry you won't o.d., you can only give yourself so much medicine every so often. Also, walk walk and walk as much as possible. Also, in the hospital I used the mens pj pants when I walked so my backside wasn't shown to the world:)  I do hope you are able to have it laproscopically, but sometimes when they get in there they do have switch to open because things are messier than they expected. Thats what happened to me with my first surgery, I am not telling you this to scare you, I just want you to be prepared for the possibility. Also, bring your own pillow, the ones in the hospital suck.

As for diet, keep things light and soft for a bit. I ate things at home like baked chicken, rice, mashed potatos, oatmeal. Things that are easy to chew, and easy to digest. Within a short time you will be able to start different foods. But I ate light for the first few weeks. Just remember when you start adding new foods to do it slowly so you can see how you manage.

And most important of all, make sure you get on some maintainence meds afterwards, so you don't have a repeat. I had a doc (now fired) tell me after my first resection, oh you don't needs meds now. Well I ended up with a repeat surgery only 3 years later. So do take maintainence meds to help you maintain remission. I am maintained now with only Asacol. I wish you the best and I hope this surgery brings you to a well deserved and long remission. Big hugs and good luck!

Gail*Nanners*


Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
*~* http://www.healingwell.com/donate *~*

Post Edited (Nanners) : 1/30/2010 7:54:44 AM (GMT-7)


Sir WipesALot
Regular Member


Date Joined Nov 2009
Total Posts : 42
   Posted 1/30/2010 9:30 AM (GMT -7)   
Best of luck to you, aimee. I just had ten inches of terminal ileum removed last Friday (22nd). They got me eating pretty quickly. By Sunday, I was eating the hospital version of "dijon chicken" as well as pork tenderloin. Also, lots of soft stuff like cheerios and bananas. I haven't been able to update my thread yet because it's uncomfortable to sit up straight for any length of time.

My surgery was 7.30am on the Friday morning, and I was out of the hospital on Wednesday. It was laparoscopic, with hand assist, meaning I have a three inch or so incision vertically under my belly button. My progress has been great. I was up walking briefly late Saturday. And my stomach muscles, which have been cut, feel like they're healing nicely.

One thing to watch for after the op is coughing, laughing, and the absolute worst, sneezing. I have had to hold my scar, and even now coughing and sneezing really hurt. I wish you the best of luck, and hope you have someone close to you who can do things like type posts when you cannot. My beautiful, gorgeous, ravishing wife is typing this post for me. And she swears that last sentence came from me. Really.
20 mg Prednisone, 3000 mg Pentasa, 75 mg 6MP, Bactrim, Flagyl, Fosamax, Prilosec... probiotics......

DX May 2004
34 YO M


onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 1/30/2010 11:13 AM (GMT -7)   
Hi Aimee= so u r having your first surgery on Wednesday u sound more prepared than most people well I had 17 surgeries now but I'm no expert but getting people 2 drop of food is a great idea but try avoiding anything rough on your body stick 2 a soft diet such as soup and sandwiches and suppers like mac and cheese ask your dietician for a diet plan for a soft diet till your bowel begins working properly again.Don't do any lifting when u go home just relax and yes u will be able 2 lay on the couch or sit in a chair however 4 my I did a lot of lying down till I got on my feet and got my strength back.Driving is always 6 weeks I am not sure how long it is for u ask your doc.After surgery there is going 2 b pain but they usually put u on a pain pump that is just where the IV goes in and the pain meds r on a schedule so u don't OD all u have 2 do is press a button and u get your dose instead of waiting 4 a nurse 2 help u...I hope this info helps u a little bite keep us posted on your recovery and best of luck 2 u on Wednesday...Ask 4 something 4 your nerves if your nervous before u go down 2 the OR...Jenn
Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 1/30/2010 11:33 AM (GMT -7)   
Its wonderful you have people who want to bring you food! Casseroles are a good choice because you can pop it in the oven without any effort and its all in one, just ask that they don't put corn or peas in them, the skins are too rough for you, at least to begin with. You may be able to handle them later but only time will tell.

The one thing I always bring to the hospital is my own pillow and pillow cases. Have someone bring them in after you are put in your room following surgery. Hospital pillows just aren't the same as the one you are used to, and it is just wonderful to sleep on your own pillow case cause it smells like home instead of the hospital. Just make sure that when your bed gets changed they don't take your pillow cases! I have flowered ones I keep just for the hospital so there is no mistaking them.

I hope you get a long remission from your surgery.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

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