UPDATE: I'm home! Added a post to the end of the thread. - I had my surgery and THIS SUCKS.

New Topic Post Reply Printable Version
32 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 2/6/2010 4:47 PM (GMT -7)   
But I obviously made the right decision by having it. Even in the 11th hour, while in preop the surgeon came through and said he looked at my small bowel follow through I had in Dec and he thought I just had a small section of scar tissue that needed to come out. Easy peasy. So I was ready to bail right then and there! I mean, I have had pain but I was popping Vicodin and still working so why go through recovery period for just that?

I went ahead and glad I did. He told me that once he got in, there was a whole 'other story. He said my small intestine was so inflammed and hardened that it had perforated, got the appendix involved, and there was a hole in my colon that we didn't know was there. He said he ended up doing 2 resections - one on each side, taking out 50 cm total plus the appendix. The "mass" as he called it wouldn't fit through the lap holes so I have a lovely bikini cut similar to a csection that really hurts in addition to the 3 lab cuts.

I was honestly not prepared for the pain but he told me that he couldn't believe I was even functioning with what was going on. He called my GI the next day to fill him in and my GI was astounded, too. I always think of myself as a wimp but perhaps I have a better pain tolerance than I thought? Or, the pain tolerance just went up as time went on. I've been dealing with this for months.

He wants me to take it slow. Today I got a little water - surgery was Wed afternoon. No word on food yet. I got the catheter out today and made it around the floor twice. The cough I have is going to eat my lunch it's so painful. I am relying on heavily on the pain meds so I'm not asking to leave anytime soon. Being so codependent on other people just to get out of bed is really proving difficult for me.

I'm an internet junkie and this was the first time I felt up to sitting on a laptop for any period of time.

So, word to the wise - medical tests dont always give the whole picture until you get a camera and surgeon in there to check it out himself.

Thanks for all the pre advice given - it really helped me be prepared for a lot of the post op stay so far. Anyone else have surgery and find out it was a different picture than previously painted?

Post Edited (Aimee =)) : 2/12/2010 3:20:04 PM (GMT-7)


wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 2/6/2010 5:27 PM (GMT -7)   
I am so sorry you are going through this but so glad the drs caught it in time!  That is tough to be in the hospital and I hope your recovery is fast. 
 
I just had a bunch of tests (like CT scan, blood, stool, etc) come back normal but am still having so many issues - my dr wants a sigmoidoscopy next week and even though I am having so many of these problems thought maybe I would wait a week and see if my next Remicaide (this week) helps at all - after reading what you wrote I am going to make it a priority so what you are going through is helping someone else!!
 
I hope you feel better soon!!  Thanks for posting that!
32 yr old Female
Crohn's Colitis
DX 12/06
 
Currently on Remicade, trying to remember to take Multivitamin and Calcium, need to start taking Probiotics and Omega 3-6-9 and Vitamin D
 
 


debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 2/6/2010 5:39 PM (GMT -7)   
Do you always have to have a catheder when you have surgery? I do NOT want a Catheder in me. (Male)

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 2/6/2010 5:45 PM (GMT -7)   
Wow! I am glad you went through with it...you aren't alone either:( This disease is sneaky and I've had similar problems. Use a pillow over your stomach for sneezes/coughs so it doesn't hurt as much and don't worry about needing pain meds. When you are feeling better you can taper but your body needs to be able to heal.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 2/6/2010 5:57 PM (GMT -7)   
Debilitated, just to respond to you, I just had surgery on my bladder, and I have a catheter right now...it's not comfortable but it's not horrible. It's WAY better than peeing would be, I'm sure. If the doctors say you should have one after having surgery for IBD, I'd say just have one. It's no big deal and i'm sure if you're bedridden it's better than having to use a bedpan or whatever, whether you're a guy or a girl.
28 Year old Female
Diagnosed with Crohn's Colitis March 2000
Recent possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Rowasa Enemas.
 
Currently on: 25mg Prednisone (Tapering SLOWLY from 60), 100mg Imuran, Psyllium Seed Powder, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D/Calcium, Flomax (for urinary retention). 


Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 2/6/2010 6:03 PM (GMT -7)   
I'm so sorry, Aimee. I just found out that I need surgery and I'm afraid that they may open me up and find some nasty surprises like they did with you, because it seems like it happens a lot. Good thing you got it done though, I'm going through something similar to you, I perforated as well and I've got fistulas and abscesses. I, like you, had no idea that I was in such bad shape. It's funny what can be going on inside of you with you having no idea. I hope your recovery goes well and you keep us all updated. Good luck!

randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 2/6/2010 9:40 PM (GMT -7)   
glad your done and can maybe heal up now...

debilitaed., if you have a open op your almost sure to have a catheter after untill you can satrt going by yourself.. with the anesthesia and moving everything around inside during surgery, things stop working for a bit.. they will put it in while your under in the OR so its not too bad.. of course women got it easier than we do, but youll survive. the hardest part is having it removed or removed too early and then having a new one put in while your awake.. by a hot nurse! then things can get tricky.
randynoguts 



     http://www.geocities.com/randynogutsweb/


WantRelief
Regular Member


Date Joined Feb 2006
Total Posts : 261
   Posted 2/6/2010 9:46 PM (GMT -7)   
It's interesting what they find when they open you up. When I had my surgery it was supposed to laprascopic. The surgeon got in there and discovered a grapefruit sized mass of intestine that couldn't be removed without a full out open surgery.  None of the scopes or CT scans that i'd had showed this mass.  I hope you start feeling better soon, just take it slow...
33 year old female
CD of Terminal Illeum and Rectum Diagnosed 12/04
Unable/Unwilling to use immunosuppressents due to Melanoma history in 2000.
Illeocolonic Resection 1/08  (18 inches of terminal illeum, illeocecal valve, right colon and appendix)
Current Meds: Pentasa, Fosomax, Iron, Vitamin b12 injections, Vicodin as needed, Entocort 6mg for maintanence.
November'09 colonoscopy shows reoccurance at anastamosis and active disease in sigmoid and rectum


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 2/6/2010 9:54 PM (GMT -7)   
Take care!
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


artist guy
Veteran Member


Date Joined Jan 2010
Total Posts : 1373
   Posted 2/6/2010 10:36 PM (GMT -7)   
I think we have all had that, when they open us up like that, I had ng tube for 6 wk's i went from 110 lb's to 75 at my sickest, but once they got that disease out wow what a turn around, until it reserfaced years later. yea, i would have to cough for the nurse, but not without pain shot first, they know.

artist guy


Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 2/6/2010 11:21 PM (GMT -7)   
Hey Aimee

I just checked here yesterday looking for you. Glad you posted!

Just try to move around as much as you can, and you'll start seeing some improvement in your pain.

Glad they did decide to do surgery! It sounds like things would have gotten way worse really quickly had they not gone in there.
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 2/7/2010 12:30 AM (GMT -7)   
Amiee, So glad to see you posted! When I had my resection it was to remove 3-4 inches and ended up removing 9 and the surgeon said it was way worse than he expected. I have a big old scar from it as well. The trick to healing well is getting out of bed once you can and to walk. Expect to go real slow on the diet, it's going to take your bowels at least 3 weeks to begin working properly again. Sounds like your pretty tough and it's going to be hard for your Dr.s to disbelieve you in the future. Be patient and get well! Rob
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.


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 2/7/2010 1:26 AM (GMT -7)   
Wow, it is amazing what they find when the open you up that tests don't show. Good thing they did the surgery. Sounds like you are doing ok. I hope you get a lot of relief from this once you are all healed up.
diagnosed 1/09 with "diverticular colitis" ?? location: sigmoid colon
localized scleroderma, IBS, asthma/allergies, prediabetes, high BP, fibromyalgia
low thyroid,claritin, advair, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D
zoloft
latest CT scan showed marked inflammation in descending colon/sigmoid colon. Sigmoidoscopy showed inflammation with negative biopsy.
switched from colazal to lialda 1/16/10
ALLERGIC TO SULFA, AND ANTIBIOTICS GIVE ME DIARRHEA!
Blood test positive for Crohn's via prometheus ibd serology panel


pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 2/7/2010 1:35 AM (GMT -7)   
Few things are as easy and thought. I'm glad to hear you're doing relatively well, don't be afraid to hit the medication button. For me at least, after the first couple days I did a lot better. Maybe it was figuring out how to sit up without pain or maybe it was less pain, but things got a lot easier. All I can say is walk as much as you can, it will make everything better, even if it seems the opposite. Good luck, girl.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.
Resection December 2009

Amor fati - Nietzsche


lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1719
   Posted 2/7/2010 6:54 AM (GMT -7)   
Aw Aimee, I'm feel for you. My surgery was 1/15 so I'm about 3 weeks into recovery and getting better every day -- so there is hope! If you tolerate the water, they will likely move you to other clear liquids before discharge. The hospital & surgeon offer nerve blocks in addition to post op pain meds and I would recommend to anyone who has the option. It makes things so much easier to move afterwards. Just remember it will take time to ease back into eating, go slowly once you get home and add soft foods slowly. Don't be discouraged if you have D when you get home, this will be normal for awhile.

Hope you are home soon!
 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/7/2010 7:30 AM (GMT -7)   
Aimee glad to hear your surgery is over and you are on the mend. With my first resection which was done on an emergency basis they had told me that they would do it via lap, but they got in there and like you, found a big mess so they had to convert to full open surgery. So I had the lap incision and a open incision. That pain was bad for me. It was like I was afraid to take a deep breath because the pain was sooo bad, and I have a high pain tolerance. I was in ICU for the first two days. But I was given great pain meds. Remember to do everything slowly, i.e. walking, getting up, adding new foods etc. Just remember slow and easy. Here's hoping your surgery leads to a long long remission.

Hugs
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"*

champagnekindofgal
Regular Member


Date Joined Jan 2010
Total Posts : 221
   Posted 2/7/2010 1:49 PM (GMT -7)   
Aimee:

Glad to hear you are well enough to even surf the web and find us! Don't worry about the catheter. I had one after a breast reduction surgery and the idea grossed me out ... but then when I REALLY had to pee and couldn't due to the anthesthia and couldn't I was happy to have it. If you have any discomfort at all, with this or anything, let the nurse know. You are the consumer and they are there for you. We are here for you. It is hard to be out of control, but you will gain control every day. I was in the hospital recently for a flare and learning every day how to manage my disease. You will need to learn how to do this with your 'new body' now.

Amazing story ... my labs and tests never match up with what is really going on in my body ... amazing isn't it? Thanks for sharing with us!!! We are here for you!
44-single mom diagnosed with Crohn's 2004 via pill camera    6MP kicked into remission (along with modified diet) so went off in 2006.
 
2009/2010 acute flare and hospitalization - now on Imuran. Currently taking 55 mg prednisone.
Current problem - protruding thrombosed hemorrhoids (external as well as internal).
 
Fibromyaglia; migraines; herniated disks C5,6 and arthritis in neck; asthma; scolisis in back/arthritis.
 
 
 


Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 2/12/2010 3:22 PM (GMT -7)   
I came home yesterday around lunchtime - so I was there 8 days. Each day is better. Honestly getting a full night's sleep last night at home in my bed was some of the best medication I've had. I didn't sleep for more than 2-3 hours uninterrupted while admitted.

I'm eating normally really. Surgeon told me to eat smaller meals and take it easy. He said in a few weeks I could try things like fresh veggies, fruit, etc that I have steered clear of for a long time.

Not sure how long I'll be out of work - guess I'll just follow my body. Thanks for all your support =)

artist guy
Veteran Member


Date Joined Jan 2010
Total Posts : 1373
   Posted 2/12/2010 3:33 PM (GMT -7)   
nice post aimee, keep that positive attitude, it's amazing how good you're going feel, i reflect back about my first 3 surgeries, this 1970, they didn't have the med's like today, they opened me up because of blockage the first time, and said i had typhoid fever, but I still was getting worse and worse, then they did a bowel bypass (whatever that was) which made it worse, then i had total obstruction, thank god, because it forced the surgion's to go and there and remove my 8ft of disease in small intestine, I was back working in 8 wk's after that, it felt like a monster was removed from my body

artist guy


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 2/12/2010 5:32 PM (GMT -7)   
Glad to hear about the progress!
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


Former58D
Regular Member


Date Joined May 2009
Total Posts : 173
   Posted 2/12/2010 6:07 PM (GMT -7)   
Here's to a nice, loooooong time without having to worry about CD!
"What can't be changed must be endured" - unknown

DX with distal Crohn's colitis Oct 2007, predominantly in rectum
Colozal (750mg): 3 pills 3xdaily
Cortifoam - 1 nightly
6MP - currently at 100mg and waiting for response......


champagnekindofgal
Regular Member


Date Joined Jan 2010
Total Posts : 221
   Posted 2/12/2010 9:04 PM (GMT -7)   
Yahoo!!!! GO Aime!!! Keep us informed, gal! And when you are ready, go eat something you haven't been able to for a long time ... and ENJOY for all of us!!!
44-single mom diagnosed with Crohn's 2004 via pill camera    6MP kicked into remission (along with modified diet) so went off in 2006.
 
2009/2010 acute flare and hospitalization - now on Imuran. Currently taking 55 mg prednisone.
Current problem - protruding thrombosed hemorrhoids (external as well as internal).
 
Fibromyaglia; migraines; herniated disks C5,6 and arthritis in neck; asthma; scolisis in back/arthritis.
 
 
 


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 2/12/2010 9:11 PM (GMT -7)   
That first night home in your own bed is a fantastic feeling! I guess hospitals make us appreciate the little things more ;-). Glad to hear you're getting better every day :-).
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


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 2/12/2010 9:58 PM (GMT -7)   
glad your home... get better soon
randynoguts 



     http://www.geocities.com/randynogutsweb/


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 2/13/2010 5:46 AM (GMT -7)   
Glad to hear your surgery went went and that your home now.
Good luck with your recovery.
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.

New Topic Post Reply Printable Version
32 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Thursday, December 08, 2016 7:07 PM (GMT -7)
There are a total of 2,735,099 posts in 301,275 threads.
View Active Threads


Who's Online
This forum has 151370 registered members. Please welcome our newest member, calvin1242.
401 Guest(s), 13 Registered Member(s) are currently online.  Details
Tnmproject, JJ2511, Fl Drifter, JNF, Girlie, getting by, LG13, DennisinNY, Gabzz, platinumpixie, bdavis, straydog, julymorning


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer