My dr wants to wait to do my reversal:(

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Nutz
Regular Member


Date Joined Jul 2009
Total Posts : 149
   Posted 11/3/2009 7:42 PM (GMT -6)   
I had an appt with my surgeon today and I am 4 weeks post j pouch.  I was really anxious to discuss my reversal because he said he could do it 6-8 weeks after given that my insides have healed properly.  Well, when I went in today, he told me that he would rather wait a little longer.  I did not (and do not) have any complications from the first surgery but am still tapering off of Prednisone.  He wants to see me back in 2 weeks (which would be 6 weeks after j pouch) to do the gastrographen (spelling???) to see how I have healed.  He mentioned that he may do a scope as well but does not want to stick anything up there now.  I told him I had a couple dates in mind for the reversal but he said it would probably be a good idea to wait until after the holidays.  There is a small chance I could have it done on Nov 30th which is 8 weeks post j pouch but he is not sure at this time- depends on my test  results.  So, my question is:  Is it better to wait longer in between the 2 surgeries?  I know that I am still healing but why do they say 6-8 weeks if they really want you to wait longer??  Also, I have been having this ridiculous (I was in tears last night praying to fall asleep) back pain.  I am still taking Vicodin but trying to wean off of that too!  I started feeling better 3 weeks after surgery and was doing stuff around the house again like dishes, laundry and I even bathed my girls (while sitting on a step stool) twice.  I think I over did it and now I am paying for it.  Any thoughts?  I have decided to let things go again and just deal with a dirty house, lol.  My mom comes over quite a bit to help but still, it's just not the same...  I am bummed about having the bag for the holidays but maybe I will be feeling better by Thanksgiving and will get to enjoy being with the family.  We will see...
 
Darlene (Nutz)
Darlene "Nutz"
Diagnosed with Ulcerative Proctitis 1999, changed to Ulcerative Colitis 2002.  J pouch surgery Oct 5, 2009


Wade457
Regular Member


Date Joined Dec 2008
Total Posts : 91
   Posted 11/3/2009 10:07 PM (GMT -6)   
Hi Darlene...

What's the rush ? Let your body heal. Get weaned off those evil drugs.. The J pouch is there and give your body a break from the hospital room. Your surgeon will be there after the holidays and enjoy LIVNG free of looking for the closest bathroom...

Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 11/3/2009 10:27 PM (GMT -6)   
I bet is seems very disappointing to get that news. Does sound like the Dr. just wants to be sure on everything. Back pain is not good going into surgery either. Hang in.
This heights by great men reached and kept, were not obtained by sudden flight, but they while their companions slept, were toiling upward in the night.
H.W. Longfellow
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
Trying


BetterHalf
Regular Member


Date Joined Oct 2009
Total Posts : 39
   Posted 11/3/2009 11:21 PM (GMT -6)   
Darlene - I remember that you had your surgery about one week before my husband had his. His doctor told him that he would have the reversal surgery three or four months after his colon was removed. Also, he is slowly weaning off the Prednisone. That should take another two or three weeks.

I'm sorry that you are feeling disappointment in not having the reversal surgery sooner. But, hang in there!

crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 11/4/2009 4:19 AM (GMT -6)   
Hey Darlene, I know its dissapointing i was told i would get mine reversed 3 months after my op but when i went for a check up i was told it was to soon i was so upset was told to go back 6 weeks from then when i did my surgeon wasn't there so had to see one of his side kicks who basically fobbed me off, so yet another let down but finally have a date. I think docs should not say when they think we'll get it done it only building up our hopes to then be dashed. Hang in there though sweetie your day will come remember its not for ever. Bev x smilewinkgrin
Diagnosed with crohn's at 13 now 42
resection, right hemi 1993 In remmision from 93 till last sept with no meds or docs
2 resections small bowel  and fistula jan 09 and given temp stoma.  reversal 1st week of Jan. Meds:Pentasa 500mg 3x day,  B12 shots, every 3 months, iron syrup,loperimide,folic acid,  citalopram 60mg (for Anxiety.)


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 11/4/2009 1:51 PM (GMT -6)   
Back pain is normal at 4 weeks post op...it was major surgery! I would suggest taking it easy on the housework...if you need the pain meds take them...It does take the body time to heal and everyone is different. Personally, I am a veteran of abdominal surgeries and I was down and out for a good twelve weeks when I had my colon removed (perm ileo--no jpouch).

Some people have surgery in one step, so I don't think there is a blanket time period, between surgeries, it's more about your body/amount of illness/doctor's preferences/meds.

If you want to have the surgery in November, have all your holiday shopping/chores done!!!

Nutz
Regular Member


Date Joined Jul 2009
Total Posts : 149
   Posted 11/4/2009 3:43 PM (GMT -6)   
Thanks to everyone for your replies. I am a little more accepting about waiting for the reversal after sleeping on it, talking to family, and reading your responses! I guess I would rather go into the next surgery feeling 100% than how I am feeling now... Now, to deal with the fact that my skin is starting to breakdown! I don't want that to get any worse. I have one more visit with the home care nurse and she gave me a powder (stomahesive or something??) to put on the breakdown before I put the barrier cover on. My stoma has retracted quite a bit and has shrunk in size so some of the juices leak to the side and are causing breakdown:( My surgeon said it will all go back to normal after the reversal... now, to pick a date to have something to look forward to:)

Thanks again!
Darlene "Nutz"
Diagnosed with Ulcerative Proctitis 1999, changed to Ulcerative Colitis 2002.  J pouch surgery Oct 5, 2009


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 11/4/2009 3:46 PM (GMT -6)   
It's best to leave the date up to the surgeon. This is their area of expertise and they only have your best long term health results in mind. Most surgeons wait 3 months between surgeries; some go longer, some shorter. I think it's wise to be cautious especially since you are on prednisone. There is no way my surgeon would have done my reversal if I was on prednisone. The wait will also help you to get off pain meds. I'm surprised you are still on them?

I had nasty skin at the time of my reversal. I thought it would never heal but it did.

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


Nutz
Regular Member


Date Joined Jul 2009
Total Posts : 149
   Posted 11/4/2009 3:52 PM (GMT -6)   
Hi Sue. As far as the pain meds, I guess I just have a low tolerance for pain. My dr didn't seem concerned that I was still taking them. I usually take 1 reg strength vicodin during the day and 2 extras strength at night with an ambien! does that sound like a lot? I definitely need the night time dose to help me sleep. My body aches so bad in the evening that I don't know how I will ever get off of them:( any suggestions??
Darlene "Nutz"
Diagnosed with Ulcerative Proctitis 1999, changed to Ulcerative Colitis 2002.  J pouch surgery Oct 5, 2009


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 11/4/2009 4:09 PM (GMT -6)   
I think you are using the Vicodin to offset the effects of prednisone withdrawl. I know that pain, I had to endure it too. Before you take Vicodin it might be a good idea to ask yourself why you are taking it. Incisional pain is what vicodin was prescribed for. And I do think that 2 extra strength vicodin and one Ambien every night is too much. Are you getting any exercise?

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


Nutz
Regular Member


Date Joined Jul 2009
Total Posts : 149
   Posted 11/5/2009 7:34 PM (GMT -6)   
actually, my incisional pain is gone. i am taking vicodin for the other aches and pains. my back has been bothering me so much lately but my doc thinks that it is b/c i am using different muscles rather than my abdominals. i only took one extra strength vicodin last night without an ambien and did ok. i didn't sleep much- but i wasn't in pain which is good. the only exercise i am getting is walking around the house and up and down the stairs a few times a day. i haven't asked my dr but when am i allowed to use a treadmill and whatnot?
Darlene "Nutz"
Diagnosed with Ulcerative Proctitis 1999, changed to Ulcerative Colitis 2002.  J pouch surgery Oct 5, 2009


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 11/5/2009 8:10 PM (GMT -6)   

You can walk more; my surgeon made us walk an entire mile before being discharged and made us build on that after getting home.  Good to see your trying to cut back.  Ask your GI what he/she would recommend for the pred-withdrawl joint pain that is non-narcotic.

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


Nutz
Regular Member


Date Joined Jul 2009
Total Posts : 149
   Posted 11/6/2009 8:47 AM (GMT -6)   
Hi Sue! I am proud to let you know that I did NOT take any Vicodin or Ambien last night before bed. I woke up at 3am with all sorts of aches and pains and simply took two Tylenol and went back to bed. I am going to try to cut off completely and just rely on the Tylenol. Thanks for the eye opener on the Vicodin- much appreciated!
Darlene "Nutz"
Diagnosed with Ulcerative Proctitis 1999, changed to Ulcerative Colitis 2002.  J pouch surgery Oct 5, 2009


ruissarr
Regular Member


Date Joined Jul 2009
Total Posts : 80
   Posted 11/6/2009 10:46 AM (GMT -6)   
wow, we really help eachother out here! glad ur doin ok darlene...i remember coming off the pain meds, i was on 7.5 norco, it wasnt fun and i think i was getting addicted, but now that i am completely off them i feel better and like i dont need them at all, i think i stopped taking them about 3 weeks ago
my name is Isaac, 24 year old guy,Jehovah's witness UC since I was 17
remicade for two years, worked OK but got married and was told it could cause birth defects so I quit feb 08. my wife reminded me that i still had D most of the time while on remicade.
ALWAYS sick with something either mild or serious, all related to UC and the medication
Wanted to start a family Jan 09 so dr stopped 6mp, wife got preg in may so I am back on 6mp also lialda and 20 mg pred

we will have our new baby boy January 25, 2010 :)


Had first of to surgeres, sept 11, 2009! Had proctocolectomy with temp ielo, i will be med-free! oh and I'm getting laid off, last day of work is march 26, 2010, just enough time...
 
ileostomy takedown scheduled for november 9


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 11/6/2009 11:12 AM (GMT -6)   
Darlene,

Awesome! It's great that you are looking for other options to vicodin for pred-withdrawl pain. You might also post your question at www.j-pouch.org

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


Sofee
Regular Member


Date Joined Sep 2009
Total Posts : 90
   Posted 11/6/2009 11:55 AM (GMT -6)   
Hey there, I am starting to think I should visit this site more often...I usually hang out in the Crohn's forum pages.

NUTZ:

I know how U R feeling, I couldn't wait to get my reversal done as well. My stoma retracted as well and boy oh boy there was such a mess - it was no different - I always stayed close to the bathrooms because of leakage!!! I got the powder and stuff to help too but nothing seemed to work for me. It just kept eating away at my skin!!! I was horrible!!! In fact - before long when that started to happen I was pretty much rushed in to get the reversal done. I almost had no skin left!!! :o(

Hang in there, I don't mean to scare U. Just sharing my experiences.
Hope your holidays with your FAM is a good one!
Don't take no guff from those doctors!!! Sometimes it seems like they just want to do it when its convienient for them!
But I agree, it is good to get off those meds and take the time to heal.
For me it was not quite a year, Nov of 1998 I had it done and in August of 1999 I had my reversal.
I often BLOCK out that time of my life because my boyfriend left me - because of it - and it just was a BAD time of my life overall.
Something I hope I never have to go through again!
Every nite I pray that my crohns will not beat me down and make me have an ostomy again!
I will continue fighting until I win the race!!!! U 2!!
:o]
 
Sofee
praying for a good night's sleep and a happy bottom!! :o]
1998: Colitis - removal of colon, temp. ostomy 10 mths.
2000-07: disease free & doing well with j pouch.
2007-09: rectal pain & discomfort, loss of bowl control. diagnosed with Crohns March '09 currently on: Emtec, Azathioprine [Imarun] & Remicade. Med History: steroids, predizone, cipro, loperamide [imodium], gravol, previcid, cholestramine, xylocaine jelly, zinc oxide creme, etc.
 


Nutz
Regular Member


Date Joined Jul 2009
Total Posts : 149
   Posted 11/6/2009 2:33 PM (GMT -6)   
Thanks everyone!! Although I have been off of the Vicodin for about a day now, I am not feeling awful. I still have pains but not from my incision. I am glad to be done with them- hoping I won't find the need to go back... I am not going to do it!

Sofee, thanks for the response. Wow, you have been through a lot. Hoping that you stay healthy:) I love your optimistic attitude! I have come to peace with waiting to do the reversal until afte the holidays. My home care nurse advised me to use a convex appliance today which should help with leakage around the stoma since it is almost flush with my skin. It only measures 7/8" and has retracted so much in this short time. I also have a belt which I am using for the first time to hold the appliance down. I am hoping my skin stays protected in the meantime...
Darlene "Nutz"
Diagnosed with Ulcerative Proctitis 1999, changed to Ulcerative Colitis 2002.  J pouch surgery Oct 5, 2009

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