Bennie - How is Bratcat doing?

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expecting226
Regular Member


Date Joined Jul 2007
Total Posts : 402
   Posted 8/6/2008 10:28 AM (GMT -6)   
I have been thinking of you guys.
Wearing many hats: Mother, Wife, Daughter, Professional, Sister, Friend
 
Current Medications:
- Asacol (4 pills, 3x per day)
- Rowasa (1 enema daily, as needed)
- Folic Acid (1 mg, 1x per day)
- Calcium (600 mg, 2x per day)
- Multi-Vitamin (1x per day)


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 8/6/2008 1:00 PM (GMT -6)   

Thanks for thinking of her. Bratcat is doing well. It's been 5 weeks tomorrow since her surgery. All her tests results came back good--no dysplasia, no cancer, definitely UC.  She is adjusting to the ostomy.

Most days are good. It is still an ordeal to change her wafer. It took awhile to learn the right way to put it on so it doesn't leak (we had to go back to the hospital to see the ostomy nurse one morning when we were at the end of our ropes). She still finds it hard to take the wafer off but we have gotten good at putting the new one on. She has no problem emptying the bag.

about 2-3 days after the staples were taken out (at the 2 week checkup) alot of the pain from the incision (she had a full incision) eased. The first week or so she took some tylenol during the day and a darvocet at night. Now she rarely takes anything.

She still gets tired when she walks. It might be because she doesn't do it as much as she probably should (it is very hard to during the hot summer days). She comes to the supermarket with us and uses the electric scooter carts they have (her suggestion, not mine). She has been to a few friend's houses for parties. She stays for a few hours.

She does get light-headed. From what we have learned from the ostomies forum and j-pouch.org, it is probably dehydration. She is drinking almost 4 liters a day already. She may have to up her salt intake to help this. We're hoping to straighten this out so she can drive again (she is scheduled to take her road test in a few weeks), go back to work, and get ready for school.  

She goes back to the doctor for a checkup this Friday. I am hoping we can find out more about step 2 surgery then. I know they do some sort of test to make sure the pouch is OK before surgery. We want to know how long they expect her to be in the hospital, how long will she need to recover, how long she will possibly be out of school.

Bratcat is adjusting well to this whole thing. Remember that she was in remission when she had her surgery so right now it isn't like this is so much better than what she was just before surgery. She still doesn't like the ostomy. The surgeon said she would be eligible for surgery in October. Originally she planned to have her next surgery right after Christmas and be out of school during January. On not so good days, she plans to have it in October (right after homecoming) and be out of school in November (come back just after Thanksgiving). I guess alot depends on what the surgeon says and how school is going (she has flared during the fall for the past 2 years so she really doesn't want to miss too much).

All in all, everything is good here. I kind of think of this as a 2-year process. The surgeries and then another year for the body to adjust in exchange for a lifetime without UC. The nice thing right now is that she is on no meds. She finished weaning off prednisone. She no longer looks like a chipmunk. Her face is beginning to clear up. We have to be grateful for the little steps that come. Some days it feels like 2 steps forward, 1 step back. But at least she is moving in the right direction.


--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 15 mg prednisone, Remicade
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!  7/3/08-Step 1 j-pouch surgery


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 8/6/2008 2:42 PM (GMT -6)   
thank you for sharing, glad she is doing well.  From time to time my Mom has problems w/the wafers.
 
Please keep us posted.
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 15mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 8/6/2008 2:57 PM (GMT -6)   
Thanks for sharing, Bennie. I'm glad she's doing pretty well. I've been thinking about you guys as well. I'm scheduled for surgery Sept. 23 so it's good to know someone around my age is doing alright after surgery.
Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (3rd infusion 07/08), 2.4 g Lialda, 1 Forvia, 6 Colazal/day
*surgery tentatively scheduled for September


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 8/6/2008 10:40 PM (GMT -6)   
BENNIE,

Why did your daughter have to have the full incision vs the small incision method?

Glad to hear she's doing better!!!

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 8/7/2008 5:20 AM (GMT -6)   
I'm so happy to hear that Bratcat is doing better. Even though she is still having a bit of a rough time, at least it's good thing to know that she will never flare from her Uc again eh? :)
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Allegra~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~2nd epidural injection 8/14, Neurontin and Skelaxin
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tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 8/7/2008 6:45 AM (GMT -6)   
Thanks for the update!
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Zegerid (not sure if it is working)

http://www.healingwell.com/donate
Co-Moderator UC Forum


expecting226
Regular Member


Date Joined Jul 2007
Total Posts : 402
   Posted 8/7/2008 9:03 AM (GMT -6)   
I am glad to hear that everything is going well.  Compared to how my two friends with j-pouches have described their recoveries, it sounds like she is right on track.  They have both said that it took a good year or two for them to feel "back to normal."
Wearing many hats: Mother, Wife, Daughter, Professional, Sister, Friend
 
Current Medications:
- Asacol (4 pills, 3x per day)
- Rowasa (1 enema daily, as needed)
- Folic Acid (1 mg, 1x per day)
- Calcium (600 mg, 2x per day)
- Multi-Vitamin (1x per day)


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5182
   Posted 8/7/2008 12:14 PM (GMT -6)   
Thanks for updating us. It just stinks that someone only 17 yrs old has to go thru such an ordeal! Bratcat's case really drove home to me how much needs to be done by IBD researchers + gastros to develop better treatment for UC & Crohn's. No one, let alone a high school student, should have to undergo major surgeries/organ removal because of these stupid ailments! Wishing Bratcat good luck with her road test, etc. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

bratcat
Regular Member


Date Joined Jan 2007
Total Posts : 74
   Posted 8/7/2008 7:20 PM (GMT -6)   
Hi everyone!

As my mom said I am doing better for the most part. Adjusting to the whole fact of surgery was not easy but not as bad as I expected. The only thing I still do not like is the wafer because I hate having anything against my skin but I always have to remind myself it's only temporary.

I did have a full incision and as soon as the staples were taken out the pain went away almost immediately. Now is doesn't even really bother me at all.

I just want to thank everyone for all there warm thoughts. What would I do with out my HealingWell family?

-Bratcat
Diagnosed 10/12/06
Daughter of Bennie
17 years old
Currently flaring for the 3rd time
Meds:
Asacol 4 pills 3 times a day
20mg prednisone from 60mg
Remicade start April 8, 2008


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 8/7/2008 7:32 PM (GMT -6)   
Hi Bracat...Glad to hear you are doing so well and half way there. Curious, why the full incision?

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 8/7/2008 7:58 PM (GMT -6)   

bbc, we looked into finding a surgeon who performed laproscopic surgery. The 2 surgeons we did consult with only do full incision. We got a recommendation for a surgeon in NYC (we are on Long Island) but decided against seeing him. While he is highly recommended and well-known in the field and has done hundreds if not thousands of operations, he does not take insurance and it is 2+ hours into the city. If there were no extremely good surgeons closer, we would have definitely consulted with him. But there are great hospitals and great doctors on Long Island. And they take our insurance (we are lucky to have very good insurance). Taking all that into account plus the cost of travel, hotel stay, what to do with her younger brother, etc. tipped the scales. Also, we only finally decided to consult with a surgeon at the end of May. We met with the 1st surgeon beginning of June (set that surgery up for June 27), met with the 2nd surgeon on June 16, scheduled THAT surgery for July 3. So everything was done within a few short weeks. We wanted Bratcat's surgery as close to the end of June/beginning of July as possible to allow for as much time as possible to recuperate and adjust through the summer before school starts.

Bratcat even from the beginning when we talked about surgery never seemed to mind the thought of a full incision. She knew about the 2 different types of surgery but never wanted to see pictures online. She is a beautiful young girl with a nice figure but she has never had a flat stomach and has never been overly self-conscious (or obsessive) about her body. I had more of an issue about a full incision than she did! Yes it is a scar. Yes it will be there forever. But it isn't as gross as I had imagined it would be (neither is the stoma by the way). If anyone is interested I could take pictures and send them to you.

J-pouch.org and the ostomies forum here helped tremendously. You can search for my posts (Bennie on both sites) to see some of the crazy, neurotic questions I asked. I did ask for surgeon recommendations. I did search to see if anyone used the surgeon we ultimately decided upon. I did PM several of those people.  I can't imagine going through all this the past few years without these forums.

ComedyDork--I know you have talked about wanting surgery for awhile. Hopefully with surgery you will be able to be healthy and enjoy your teen/20s! That's what we are hoping for Bratcat.


--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 15 mg prednisone, Remicade
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!  7/3/08-Step 1 j-pouch surgery


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 8/7/2008 8:15 PM (GMT -6)   
Thanks Bennie. I wonder if the insurance co. will let me go from current state max dosage of Lialda and daily Rowasa etc straight to surgery without going through pred, remicade etc God forbid? I don't want to go through pred etc..its just not worth it.

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 8/7/2008 8:25 PM (GMT -6)   
It would be a shame if you had to take drugs you don't want. Can insurance companies do that? Can they "force" you to do something you don't want to? I hope not. Bratcat did not have to take the drugs. She went on them in the hope that they would be the miracle drug.

--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 15 mg prednisone, Remicade
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!  7/3/08-Step 1 j-pouch surgery


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 8/7/2008 8:43 PM (GMT -6)   
Hi! I haven't followed your whole story. I am just curious why you chose surgery while in remission instead of while flaring?
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 8/7/2008 9:10 PM (GMT -6)   
If you have to have surgery (or choose to) it is always better to be healthy. When Bratcat was first diagnosed we were very optimistic that medication would put her in remission and keep her there (at least more often than not). Unfortunately her flares were big. She was out of school 9 weeks in 10th grade, and then 9 weeks and again another 7 weeks in 11th grade with each of her flares. Between not staying in remission with the different drugs and realizing that she would probably continue to flare, surgery was a serious option. She (and her dad and I) is hoping to lead a life that, while may not be perfect, will allow her to enjoy what normal teenagers enjoy.
We knew, given a choice, having surgery at the beginning of the summer would give her lots of time to recuperate and not miss alot of school. The options were to have surgery now while in remission or take chances that she would not flare during the school year (not a great track record the past 2 years), possibly have to have surgery when she was ill, or wait until next summer.
--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 15 mg prednisone, Remicade
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!  7/3/08-Step 1 j-pouch surgery


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 8/7/2008 10:21 PM (GMT -6)   
Bennie said...
It would be a shame if you had to take drugs you don't want. Can insurance companies do that? Can they "force" you to do something you don't want to? I hope not. Bratcat did not have to take the drugs. She went on them in the hope that they would be the miracle drug.


I'm afraid they could insist upon the least costly route vs surgery which is an actual cure...how sad.

Your Daughter BTW, is an inspriration to me and I'm 47 :-)


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5182
   Posted 8/8/2008 8:15 AM (GMT -6)   
Not to hijack the thread, but, for bbc's information-- there are at least two members here who have written about IV cyclosporine saving their colons (both treated by IBD subspecialist gastros at Mt. Sinai Hospital in NYC). If a drug can subdue pancolitis & restore normal or nearly-normal bowel function, that is still preferable to undergoing major surgery with organ removal & ostomy and/or pouch. Though insurers are always out to control health care costs, they do employ medical consultants who must know that not all surgical procedures are foolproof. There is always an element of risk involved that not only translates to higher insurance disbursements, but poorer quality of life for the injured patient. I think the worst insurance judgment I've read on this forum, though, concerned a UCer who was dealing successfully with post-surgery ostomy for more than a yr, but wrote to tell us that his insurer wanted to stop payment for his ostomy supplies & questioned why he had not gone for j-pouch connection. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])
***********************************************
 Bratcat, it's awesome to read your thank-you!

Post Edited (Old Hat) : 8/8/2008 8:26:29 AM (GMT-6)

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