Some Questions -- Surgery, Maintenance Meds, and Recovery Time

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Carnival Huckster
Regular Member


Date Joined Oct 2009
Total Posts : 159
   Posted 12/30/2009 6:19 PM (GMT -7)   
Hi all,
 
As mentioned in my previous post, I am having open resection of 1-2ft of small bowel in about 2 weeks.  There are 2 areas in which I have questions.
 
Maintenance Meds: My doctors insist on using 150-200mg of Imuran OR Anti-TNF as a maintence med once I have the surgery.  I also plan to continue on the SCD and supplements.  I've heard horror stories about Remicade, but when I took it (I was in the clinical trials 10 years ago) I responded very well to it.  I understand there is a chance I will have built up antibodies to it since I haven't taken it for 10 years.  If it were you what would you do and why?  Can Humira or Cizma be given outpatient?  My health insurance plan is good, but I have a separate prescription insurance plan which absolutely sucks (capped at $4k per year.)
 
Recovery Time: I am in generally good health (aside from the CD of course), but still don't have a clear idea of what to expect of recovery time.  It seems like I should expect about 1 week in the hospital + 2 weeks of being at home but with very limited activity + 2 more weeks of limited to moderate activity + 1 week to get back to normal.  In other words, the docs said the recovery time should be about 6 weeks if all goes smoothly.  Does this coincide with what others have experienced?
 
Thanks again for all of your advice,
CH

+ 34 year old male
+ Crohn's Disease DX in 1997
+ Recently hospitalized because of ruptured small bowel; docs got it under control but have scheduled resection surgery for early January 2010.
+ Taking Cipro (1000mg / day), Flagyl (1500mg / day), and Entocort (9mg / day) until surgery
+ SCD for past 10 years


Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 12/30/2009 7:05 PM (GMT -7)   
As for maintenance meds, I don't have an opinion because my second surgery was due to obstruction more from scar tissue then crohn's activity. After my second surgery, I have had more disease activity and have gone on Humira.

Recovery time...I don't know whether it's just me being stubborn or what, but I was back at work 2 weeks after surgery, and my job was physical. I was sore, but it wasn't painful by the time I went back to work. I was just careful about how much I pushed myself to do, and took more breaks than normal. about 3 weeks after surgery I felt completely normal. After my first surgery, I didn't return to work for much longer, and I think I babied myself too much. I found the second time around that the more you move about after surgery, the quicker you feel better.
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


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13481
   Posted 12/31/2009 3:12 AM (GMT -7)   

Hi, I haven't been over here in a long time but wanted to say hi and give my thoughts on your questions. lol

After your surgery you really need to get up and walk as soon as possible. Walk as much as you can, just don't over do it. The walking with help wake your bowels up from the surgery and help get them going. Walking is also  a good form of exercise that will help you build up your strength.

If your script card is crappy Humira may not be affordable unless you can get assistance from the drug company. It is very expensive, 3 months supply is $24,000 at my pharmacy without a script card. Imuran is available in generic and affordable. I am also on both of these drugs. I have been on Imuran since 2002 and I have not had any problems. I started Humira last January because I have Remicade induced Lupus.

You rally do need a maintenance medsication because cd is a silent worker in the gut. Good luck on your surgery.


 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 12/31/2009 5:06 AM (GMT -7)   
I had lapro surgery and was back to work in 2-1/2 weeks and I have a physical job. I just took it easy not to lift over 10 lbs. until a month passed. I felt near 100% by 1-1/2 months after surgery.
I did alot of waling after surgery and during those 2-1/2 weeks at home I was walking on my treadmill 3 times/day. I believe that is what got me back on my feet sooner.
As far as meds, I did not listen to my doc afterwards and go on Imuran or Methotrexate because I was concerned about the side effects. I only took Asacol as my maint. med. Well 10 months later and feeling really good with no problems i told my doc to do a colonoscopy to see if the disease had returned or not. Well, it did return and now I am just started the loading doses of Humira yesterday. It was either remicade or Humira and I went with the Humira because it was more convienent compared to sitting in a chair for 3 hours. I'm upset that the disease has come back so soon and wonder if I would have taken Metho or Imuran if things would be different today,but is was my choice.
My opinion looking back I would hit it hard.
Good luck with your upcoming surgery i hope it goes well for you.
It's your choice on the maint meds, just don't be afraid of the side effects.

Best of luck and Happy New Year!!!
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Precription Folic Acid, 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 12/31/2009 7:06 AM (GMT -7)   
Hey CH,

If I am not mistaken you said that your surgeon is pretty sure that you are having an open surgery, right? If so, 6 weeks does sound about right. Thats what I was off after each of my surgeries. I agree with Straydog, do be sure to walk as much as possible, this helps to wake up your bowels and get them working again. It will help with your recovery too.

As for maintainence med, I am a BIG proponent of maintainence meds. I didn't go on them after my first resection and ended up with another surgery only 3 years later. You have to remember that even though feeling well, Crohns is still in there doing its damage on a microscopic level. I am maintained solely on Asacol and I am currently in remission. But Imuran/6mp are great options too.

Good luck!
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"*

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 12/31/2009 8:54 AM (GMT -7)   
I wouldn't do Remicade. I also was in a study for it, and when I tried to take it again a few years later, I had a very bad reaction. They tried pre-medicating me and going at a really slow speed, but each infusion got worse (I ultimately had about 2.1 infusions, since the third one had to be stopped shortly after it started).

I take Pentasa, and just started LDN a few days ago. My GI wanted me to stay on Humira, but I declined. After 16 months on it, I felt like it probably had lost it's effectiveness (or would shortly). From what I've read here, most people are lucky to get a year out of Humira. Plus, the biologics scare me now more then they used to. I keep reading stories of people who end up worse off because of them. My dad just stopped Humira because he's lost all feeling in his fingertips, and the doctors suspected Humira.

As far as complete recovery goes, I just got rid of the residual muscle pain in my left side where they had to cut through to get to the intestines. That was at 3 months. But I was functional very quickly. I was out of the hospital in 2 1/2 days, and only needed pain pills for a couple of more days. That was laproscopic surgery though.

Good luck!
34 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: Pentasa, Effexor XR, Zyrtec
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods

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