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smile1967
Regular Member


Date Joined Jan 2008
Total Posts : 174
   Posted 2/22/2008 11:44 AM (GMT -7)   
Hi Wantrelief, you said we had almost the same surgery so I have a few questions for you, you lucky girl hahaha!
I think I am  doing quite well in the D dept. I only have about 3-4 bowel movements a day sometimes less. Yesterday it was quite formed and then followed by a bit of liquid D. But it was very crampy and painful. Is that to be expected? I can usually feel stuff travelling through throughout the day and it is crampy? normal?
I got the staples out yesterday. Went well except for one that got stuck and was a bit sideways! ouch. On the biggest incision it is bit not closed so they taped it with gauze. How long before you sat in the bathtub? I don't think I will be comfortable enough yet to get in and out of the tub yet anyways, but wondering when it will be ok?
Lastly I don't see the surgeon for F/u until Mar.18th - but I was wondering if you are driving yet? I'm not in any hurry to be taxi driver yet hahaha, just wondering when they say it usually ok to start driving again?
I think that is all my questions for now so if you or anyone has any advise that would be great!!
Thanks, Shelly 
40 yr old wife and mom to two boys 8 & 10
symptoms since the age of 19
officially diagnosed with crohn's Nov.2006
meds: pentasa 500mg 2 x 3day
(just went off Entocort 3mg 2/day)
Surgery booked for Feb.11th- TI resection(stricture)


WantRelief
Regular Member


Date Joined Feb 2006
Total Posts : 261
   Posted 2/22/2008 12:19 PM (GMT -7)   
Hi Shelley, for the first 3 wks I had nothing but liquid diarrhea up to 8 times a day.  Every time I would eat I would be in the bathroom within ten or fifteen minutes of starting a meal. Now at six wks this is improved.  I can usually make it through a meal and have about twenty minutes before I have to go to the bathroom.  It is still very soft with quite a bit of liquid.  I've noticed since I've started taking a multivitamin and iron supplement every day that it seems to have firmed up slightly.  (I haven't had a "normal" bm in like three yrs though).  Right after surgery and for the first few wks I also had urgency.  All of a sudden the feeling would hit me and I had to find a bathroom NOW!!  That is also somewhat improved but not completely gone. I've noticed that I can hear my intestines gurgling and feel the movement going on inside and I know that a bm is sure to follow soon.  Sometimes this is crampy and other times not.
I also had a little area around my naval that was not completely healed up when my stapels were removed, the doc put steri strips on and I kept it clean with peroxide twice a day.  It healed up nicely. I had open surgery so I have a ten inch vertical incision.  It's still sore but I'm pretty much back to my normal activities and even able to sleep on my stomach again for short periods of time!  As for the bathtub, I took my first bath after my stapels were removed.  I sat enough water to soak my sore bottom and legs but not enough to completely submerge my abdomen.  I waited until the place around my naval looked completely healed before I totally submerged myself.
My doctor asked me to not drive until I was off of the pain medication.  Which was at about the three wk mark.  However, I do occasionally still take a pain pill if I've had a really busy day and find that my abdomen is really sore.  Plus, I have proctitis and my rectum really hurts after having a zillion bowel movements in a day.  The narcotics are the only thing that makes that pain disappear for a while.
I have to say, surgery has been totally worth it. I already feel 95%better than before.
31year 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, Flagyl


smile1967
Regular Member


Date Joined Jan 2008
Total Posts : 174
   Posted 2/22/2008 1:37 PM (GMT -7)   
Thanks Wantrelief! Its so great to talk to someone that has gone thru the same thing. Ouch, I can't believe how much more sore you must have been with such a big incision! I am so glad for you that you are feeling pretty good and happy that you had the surgery. I kind of feel the same way, I feel like a get a do-over! Start from scratch and try to keep the flares away as best as possible and stay away from the major drugs for as long as possible. The dietician advised me to stay on certain foods  for 6-8 weeks and then after that start to re-introduce foods that were a bit scary before (like maybe raw apple without peel.) Have you noticed a difference in your diet and to what you can and cannot have compared to before?
Thanks, Shelley
40 yr old wife and mom to two boys 8 & 10
symptoms since the age of 19
officially diagnosed with crohn's Nov.2006
meds: pentasa 500mg 2 x 3day
(just went off Entocort 3mg 2/day)
Surgery booked for Feb.11th- TI resection(stricture)


WantRelief
Regular Member


Date Joined Feb 2006
Total Posts : 261
   Posted 2/22/2008 2:33 PM (GMT -7)   
Shelly, as for my diet.....Both my GI and surgeon said "eat anything you want". I've been taking it slow.  Things that I would have avoided before surgery, I've been trying in small amounts and then waiting to see how it makes me feel.  So far, I haven't found anything that has caused me any pain.  Mostly raw vegetables and fruit bothered me before.  What are you on for maintenance medication?  Right now my GI has suggested that I take Flagyl long term. There are studies that suggest Flagyl will help maintain remission after surgical removal of CD.  I haven't started it yet (I really want to have a glass of wine first).  Silly I know!  I was taking only Pentasa and occasional bursts of Prednisone before surgery. I have a history of Maligant Melanoma in '00 so I have avoided immunosuppresents at all costs.   My GI said she doesn't have good solid evidence that the Pentasa will help keep me in remission so she left it up to me wether to continue it or not.  So far I'm taking 3gm/day. I feel like I want to do all that I can to keep this disease as far away from me as possible.
I'm glad you are feeling better, it really sounds like things are going good for you. Everything you have said seems completely normal compared to my experience.  So we are either good or we are both screwed up!  BTW, what state are you in?  I'm in Indiana.
31year 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, Flagyl


smile1967
Regular Member


Date Joined Jan 2008
Total Posts : 174
   Posted 2/22/2008 3:47 PM (GMT -7)   
wantrelief....right now I am on pentasa 500mg 2-3xday. I will see my GI mid-march same time as surgeon to discuss where to go from here as far as meds go. i will see what his opinion is about pentasa long term for maintenance? I am very nervous about taking anything else but like you said I will do all that I can to keep flare free. I too love my red wine!!!!!! and miss it very much. Did you start on your b12 injections right after surgery? I have the lab req. to go check my levels and go from there when to start? I live in Canada!
40 yr old wife and mom to two boys 8 & 10
symptoms since the age of 19
officially diagnosed with crohn's Nov.2006
meds: pentasa 500mg 2 x 3day
(just went off Entocort 3mg 2/day)
Surgery booked for Feb.11th- TI resection(stricture)


WantRelief
Regular Member


Date Joined Feb 2006
Total Posts : 261
   Posted 2/22/2008 4:32 PM (GMT -7)   
I started back on Vit b12 injections monthly after my visit to the GI.  Losing your TI you will most likely need those injections.

31year 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, Flagyl


smile1967
Regular Member


Date Joined Jan 2008
Total Posts : 174
   Posted 2/22/2008 4:47 PM (GMT -7)   
thanks for the advise today and it was great talking to you! talk to you soon.
Shelley
40 yr old wife and mom to two boys 8 & 10
symptoms since the age of 19
officially diagnosed with crohn's Nov.2006
meds: pentasa 500mg 2 x 3day
(just went off Entocort 3mg 2/day)
Surgery booked for Feb.11th- TI resection(stricture)

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