Looks like this might be my new message board soon.... surgery is my next option

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geminisunset
Regular Member


Date Joined Sep 2008
Total Posts : 153
   Posted 4/30/2009 8:17 AM (GMT -6)   
Hi,
 
I've been posting on the UC board for a while. Well, I had a colonoscopy yesterday and was told that I now have two options due to how bad my colon looks. The first is to start taking Immuran in combination with remicade (I've been on remicade since Aug). But the first thing he said about that was it greatly increases my risk of blood cancer. Not cool with me. My other option is the j-pouch surgery. So I find myself scanning the threads on this board, and I have some questions. I hope my questions aren't too redundant as I'm sure newbies post questions all of the time...
 
Here are my questions....
 
How long will I be in the hospital for each surgery (typically of course, I know complications could make it longer)?
 
I have an office job, so I live in a cubical for 8 hours a day. How soon after each surgery do you think I'll be able to return to work?
After the first surgery, once I have the temp ileo (is that what its called? I'm so new to this.), will I be able to enjoy summer activities like swimming?
 
How soon after sugery were you able to eat normal foods that you could not eat beforehand?
 
I have IBS as well - do you think I will still have IBS issues or will the surgery take care of that too? What about lactose intollerance?
 
I feel so knowledgable about UC after having it for the last 2 1/2 years almost. But I feel clueless about the surgery and what to excpect. So I truly appreciate your help.
 
 
 
 
GeminiSunset
Diagnosed w/IBS: Oct. 2006
Diagnosed w/UC: Jan. 2007 (proctitis), July 2008 (pancolitis)
Medications: Canasa (helped the first flare when it was just proctitis); Rowasa enemas (did not help as the following colonoscopy confirmed pancolitis); Lialda (2 pills in the morning, 2 pills in the evening, soon to be 2 pills in the morning only once I'm off steriods); Prednisone; Protonix (only took while on prednisone); Remicade infusions, started at 5mg/kg (Aug 2008), increased to 7.5mg/kg (March 2009), increased to 10mg/kg and increased to every 6 weeks (April 2009) - 7 infusions so far, next infusion on 5/28 continuing every 6 weeks; Zyrtec-D (for allergies); Toprol (a generic form, 25 mg, for a rapid heart rate)
Supplements: Women's One-a-day multi-vitamin; Super B-complex w/vitamin C, Iron supplements, Omega-3 Fish Oil (coated, not sure how much except one soft-gel daily), Aloe Vera supplement (two daily), Acidopholis, Probiotic Align
Diet: Spinach and Sunflower seed butter diet (starting 3/21/09) (will try again once I can eat normally again)
Current Status: April, 2009 - suffering another flare-up :(


geminisunset
Regular Member


Date Joined Sep 2008
Total Posts : 153
   Posted 4/30/2009 9:20 AM (GMT -6)   
One more question to add to the list...

I'm currently on prednisone. Will that affect my recovery in any way? Should I wait until I'm tapered off of prednisone before going in for surgery?
GeminiSunset
Diagnosed w/IBS: Oct. 2006
Diagnosed w/UC: Jan. 2007 (proctitis), July 2008 (pancolitis)
Medications: Canasa (helped the first flare when it was just proctitis); Rowasa enemas (did not help as the following colonoscopy confirmed pancolitis); Lialda (2 pills in the morning, 2 pills in the evening, soon to be 2 pills in the morning only once I'm off steriods); Prednisone; Protonix (only took while on prednisone); Remicade infusions, started at 5mg/kg (Aug 2008), increased to 7.5mg/kg (March 2009), increased to 10mg/kg and increased to every 6 weeks (April 2009) - 7 infusions so far, next infusion on 5/28 continuing every 6 weeks; Zyrtec-D (for allergies); Toprol (a generic form, 25 mg, for a rapid heart rate); Prednisone 40 mg daily
Supplements: Women's One-a-day multi-vitamin; Super B-complex w/vitamin C, Iron supplements, Omega-3 Fish Oil (coated, not sure how much except one soft-gel daily), Aloe Vera supplement (two daily), Acidopholis, Probiotic Align
Diet: Spinach and Sunflower seed butter diet (starting 3/21/09) (will try again once I can eat normally again)
Current Status: April, 2009 - suffering another flare-up :( Surgery may be my next option.


Pibbin
Regular Member


Date Joined Apr 2008
Total Posts : 163
   Posted 4/30/2009 11:41 AM (GMT -6)   
Wow, looks like we have similar histories in terms of how quickly the disease progressed in such a short period of time after diagnosis.

I was prednisone dependent too, prior to surgery. Due to the extended period of time I had been on prednisone, I require 3 surgeries vs a 2 step, as my surgeon found during surgery #1 that my organ tissue was too friable due to the prednisone use to continue with forming the pouch at that time. So I was told to wait 2-3 months after surgery #1 before going on to surgery #2. I have chosen to put it off for awhile so that I can continue to lose weight and get healthy again. My prednisone was tapered down slightly before surgery (I think I went in on 20 mg/day), but within a month of surgery I was successfully tapered off completely, which was a wonderful feeling.

I can only speak about surgery #1 (total colectomy and temporary ileo), as I've only had part one so far. I was only in the hospital for 5 days following surgery. I was not permitted to drive for 4 weeks following surgery or lift anything heavier than the Sunday Paper (my surgeon's quote). I work from home, and it was about 4 weeks before I was weaned off all pain meds and feeling up to work. I know it takes some people longer, some shorter.

I was advised to have a bland low-residue diet for the first month, and then to slowly add foods back in. By two months post surgery I was eating everything except popcorn and seeds -- SALAD and COFFEE -- I was in heaven. Everyone is different, and you have to chew very carefully and drink lots of water to avoid blockages. There are certain foods like strawberries, blueberries, and grapes, that are uncomfortable if I eat them, so I avoid a few foods. But NOTHING like with UC. I don't have IBS, so can't really advise on that.

You should be able to swim, hike, play. It took me a few months to come to terms with my ileo and get used to it, but you will get there, and it is so much better than feeling sick all the time!

Best of luck to you in your decision-making!
Dx Mild Proctitis 7/06 at age 33, Dx Severe Pan Colitis 5/07, Dx Crohn's Colitis 10/07
Failed Asacol, Lialda, 6-MP, Canasa, Rowasa, Proctofoam, Entocort, Remicade, Humira
10/10/08 colon removed, temporary ileostomy
11/10/08 FINALLY off prednisone after 18 months
2nd of 3 surgeries planned for '09 to form j-pouch


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 4/30/2009 11:48 AM (GMT -6)   

I went back to work 3 weeks after surgery but most people are out 6 weeks on average.  I started eating lots of fruits and vegetables at 6months post surgery.  Today my diet is about 90% fresh fruit.  Your surgeon will determine your pred taper and most likely you will taper off of it between your 1 and 2nd surgeries.  I had IBS too and it went away when the colon was tossed.  Honestly, immediately after surgery I felt like a normal person!! 

Love the results with my jpouch, never have regretted my decision. 

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/30/2009 11:58 AM (GMT -6)   
ok, i have a perm ileo, so i can only answer those questions.

I was in the hopstial for 6 days, average time is 4-7 days. But everyone is different.

As for going back to work, for a desk job, probably 4-6 weeks. It will depend on how quickly you heal. the steriods will make you heal slower. Its best to be off them when you have surgery BUT if getting off themmakes you flare really badly, then its better to be on them.

On the way home from the hospital from surgery i drank a milkshake!!! and in the hosptial i was eating foods i hadn't eaten in years. NOW you do have to be on a low residue diet for about 6 weeks, that means no stringy meats, no raw veggies or fruits, no spicy foods. However you ccan start to introduce those things at about 5 or 6 weeks, one at a time.
Just like if you eat a salad, drink a bunch of water and eat some bread too or something. And be aware it comes out like it went in, lol.

I dont know about the IBS or the lactose intolarnce, sorry.

You can do everything you did before! You wont' be able to go swimming until your stitches come out of course. I had my surgery in April 2007 and was swimming in june, at the beach in july and pudding wrestiling in august! so it wont stop you from doing ANYTHING you want!!!

Good luck and YAY for being healthy soon!
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