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Greetings from Bennie and Bratcat

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Ulcerative Colitis
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Posted 7/4/2008 12:42 PM (GMT -7)
Hi all. Just wanted to let you know that Bratcat is out of surgery and doing well. Her surgery was yesterday. Her sugeon said it went very well, exactly how he wanted it to go. Watching her go off to surgery was traumatic. She ended up getting an epidural so I wasn't able to go in with her. The OR nurse was great. She called us in the surgical waiting room about 45 minutes after we left Bratcat to let us know she was wonderful through the whole prep, and that the surgeon was about to start. 4-1/4 hours later, she was done. We were able to see her for a bit in recovery and then she was moved up to her room.

She is on the pediatric floor. Right now it is virtually empty so it is very quiet. Yesterday evening she was in alot of pain. She has lots of different tubes coming out of different places but they removed one today and will continue to remove them daily. She slept a little last night. Today she is sitting in a chair. She's going to walk a little later. Every doctor, intern, fellow, resident, etc has been it to check on her.

All in all, Bratcat is terrific. I know she is my daughter but she amazes me. She is alot tougher than I would be in her situation. And she still feels like this is the right decision.

Thanks again for your good wishes. I will check in as soon as possible.

Bennie

--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!

Posted 7/4/2008 2:22 PM (GMT -7)
Bennie, she's a brave little lady. Her determination will help her recovery, I'm sure. Thanks so much for letting us know how things are going!
Judy

 

Moderate to severe left-sided UC (21 cm) diagnosed 2001.

Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.

Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.

 

Co-Moderator UC Forum

Please remember to consult your health care provider when making health-related decisions.

Posted 7/4/2008 3:21 PM (GMT -7)
So happy to hear everything went so well. Hope she has a speedy recovery. good luck to her.
Rona

synthroid .088 mg, lowpressor 50 mg x 2, cozaar 25mg x2, imdur 30 mg
nitroquick, proventol, plavix 75 mg, protonix 40 mg x 2, asacal 400mg x 9
carafate 1 gm x 4, zyrtec 10 mg, rhinocort aqua nose spray, fish oil,
potassium.

Posted 7/4/2008 3:22 PM (GMT -7)
Thanks for the update! Please tell her we are thinking of her!!!!
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

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

Posted 7/4/2008 3:56 PM (GMT -7)
Thanks for updating us. Great that Bratcat has such resolve! Wishing her all the best ... / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])
Posted 7/4/2008 4:44 PM (GMT -7)

I am glad to hear that all went well!  I will keep all of you in my thoughts!

Beth

40 mgs of Pred

50 mgs of Imuran

3 Lialda

1 Canasa at night

 

 

Posted 7/4/2008 5:20 PM (GMT -7)
That's great news...........Hope she recovers quickly. She will be able to enjoy life so much more now. She sounds like such a brave girl. Good for her.....
*******Donna*******

diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)

In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............

currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema once a week. Omega 3, Probiotics, multi vitamin, calcium supplement, Biotin....

Posted 7/4/2008 5:33 PM (GMT -7)
I am so happy she is doing well and getting good care. She is so brave. I hope she has an easy recovery.
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08,  Humira started 4/4/08, 6MP started 6/24/08

Posted 7/4/2008 6:09 PM (GMT -7)
She's one amazing little lady....and so is her Mom. Thanks Bennie for letting us know how she's doing, and let her know we are thinking about her! Awesome news...smile.

Carol

Remicade - will have my 22nd infusion on June 12.

Vitamin B-12/Biotin, Probiotics

Co-Moderator for the UC Forum

Posted 7/4/2008 6:10 PM (GMT -7)

Bratcat has an amazing attitude; she will do fine no matter what's thrown her way.

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

Posted 7/4/2008 10:05 PM (GMT -7)
Bratcat has amazing strength and you're an awesome supportive mom!

It's wonderful the surgery went smoothly...I hope she recovers quickly. been a long road!

Thank you for letting us know Bennie.
quincyxx

*Heather*Status: mini flare Dec 28... tapered to every 4th night

~diagnosed January 1989 UC (proctosigmoiditis)

~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)

~Bentylol (dicyclomine) 20mg as needed

~vitamins/minerals/supplements 

~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally

~multi-digestive enzymes as needed ....zymactive 3 - 5x daily

~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)

~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)

My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Posted 7/5/2008 7:05 AM (GMT -7)
I know you don't know me, but I have been reading about your family's ordeal, and you all have been in my thoughts and prayers. I am so glad to hear that all went well, and I hope she continues to recover quickly and can enjoy some of her summer. You all are an amazing family and I only wish good things for you.
diagnosed with left-sided UC in 1997. (45cm)

Currently on 10mg Prednisone

12 caps of colazal    9 caps Colazal

2 rowasa enemas nightly

35, female

Posted 7/5/2008 8:08 AM (GMT -7)
Glad the surgery went well. Here is to a speedy recovery.
Diagnosed July 2005 with Pancolitis

Asacol 4 tabs 3 times daily

Pro-Bio

Forvia

calcium

Diosmin(for leg and vein support)

http://mysite.verizon.net/vzewor6c 


Posted 7/5/2008 8:14 AM (GMT -7)
I'm glad to hear that bratcat is doing so well! Thanks for keeping us updated, Bennie.
Female, Age 19, Dx w/ UC August 2007

9 Asacol, Rowasa, 1000 mg Canasa, Proctofoam, Rifaximin 2/day

Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, 1 DanActive, Remicade (2nd infusion 06/26/08), 2.4 g Lialda

*exploring the option of surgery

Posted 7/5/2008 5:28 PM (GMT -7)
I hope that today brought more healing! Glad to hear Bratcat is doing so well :) I hope in time she'll be able to log in and tell us her story.
Pan-colitis and GERD diagnosed May 2003

Osteopenia (hip and spine) diagnosed Feb 2006

Status:  close to remission?!?!?

15mg Pred, Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio

1st Remicade infusion on 06/17/08:  Next infusion on 07/01/08

Co-Moderator for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate

Posted 7/5/2008 7:31 PM (GMT -7)

Bratcat is still doing well. They removed the abdominal drain that they use to remove excess blood and stuff after surgery. Her ileostomy is outputting something (I guess bile and juices). Today she was allowed to start on clear liquids. She maybe had 2 small glasses of water and about 1/2 a glass of juice. The doctors and nurses say that is OK. She sat in the chair again for several hours and walked a little bit.
So far, she has less pain than I imagined she would have from her incision and ostomy (I guess because of the epidural and pain killers). She is tolerating the foley but they can't take it out until she is off the pain meds. What hurts her the most is they gave her Heperin shots to prevent blood clots. They really hurt her. She has several bruises from IVs, bloodwork, and the shots. She doesn't have the best veins so they have had trouble getting bloodwork daily from her. Tomorrow I will insist on someone with lots of experience. Same will go for her IV (they change it every 3 days).  Also I find I am not as grossed out about the ostomy as I expected to be. We haven't seen it without a bag on but I've watched it output. It is pretty interesting. I watch the nurses empty the bag and can't imagine being able to do that without making a big, big mess.
Hopefully tomorrow we can get Bratcat to walk a little more. They may let her have soft solids. No rush though.

--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!

Posted 7/5/2008 9:21 PM (GMT -7)
Sounds like she's making great progress, Bennie. I'm so glad to hear things continue to go well for her.
Judy

 

Moderate to severe left-sided UC (21 cm) diagnosed 2001.

Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.

Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.

 

Co-Moderator UC Forum

Please remember to consult your health care provider when making health-related decisions.

Posted 7/7/2008 6:28 AM (GMT -7)
Use some Aspercreme on the bruises. It really helps them fade fast and get rid of the pain.

Three cheers for Bratcat and her family! Hip hip hooray! Hip hip hooray! Hip hip hooray!
Pan-colitis and GERD diagnosed May 2003

Osteopenia (hip and spine) diagnosed Feb 2006

Status:  close to remission?!?!?

15mg Pred, Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio

1st Remicade infusion on 06/17/08:  Next infusion on 07/01/08

Co-Moderator for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate

Posted 7/7/2008 7:32 AM (GMT -7)
That's great Bennie! I'm so happy to hear she is doing well and am excited for her to get back to living her life!
James
Asacol 4 tabs 2x daily www.myspace.com/gardenerjames
Forvia once a day - Probiotic twice daily - Methotrexate 3 pills once a week - Actonel once a week
Calcium supp. - 1 mg Folic Acid daily - Omega-3 once daily
13th Remicade infusion End of April

Posted 7/7/2008 9:30 AM (GMT -7)
thanks so much for sharing, you are all very brave, especially bratcat, my thoughts are with her and wishing her a speedy recovery!

please keep us updated!
Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's

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 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!

 

Posted 7/7/2008 9:53 AM (GMT -7)
On the long holiday weekend the more experienced phlebotomists may have taken off. Hoping that Bratcat gets more gentle attention re needle issues-- gads! I, too, have small veins & understand that problem very well. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Posted 7/7/2008 6:23 PM (GMT -7)
Bennie, my son is 17, and I can't imagine what you are going through.  I admire your strength and courage.  The hardest part is being strong for your child.  You have got that down!!  Bratcat is lucky to have you fighting this with her.  Good luck to you both.  Love, UC Mom.
UC Mom

Son diagnosed 10, 2006 at age 15

6MP 75 mg. per day

Vitamin Supplements

Posted 7/8/2008 12:59 PM (GMT -7)
Bennie,

Glad that your daughter is doing so well after her surgery. I don't know if I could have gone through with it.


When I was in the hospital and when I had colonoscopies my GI would put this numbing cream on the area where they were putting an IV and it would help to ease the prick. I think it's left on for about 30 minutes so the numbing can take effect. It's called EMLA Cream (lidocaine 2.5% and prilocaine 2.5%) then the tube says AstraZeneca. My mom saved it for future reference. :-} I don't know if it helps prevent bruising or not, but you can always ask the doctor about it.

Good Luck
Age 18
Diagnosed September '01 : Remission since July '02
Asacol- 4 pills 3xday
Azathioprine- 75mg 1xmorning
Centrium A-Z multi-vitamin
Took Remicade 3 times, BIG FAN!!!!
Have Taken: Prednisone, Flagyl, Zantac (for acid reflex)

Posted 7/8/2008 2:33 PM (GMT -7)
EMLA Cream is great, they used it all the time when I was a pediatric patient but as soon as I started seeing an "adult" doctor they stopped and now they just jam the needle in. I kind of miss being a kid because at least then people are afraid to hurt you so they're very gentle. Usually needles don't bother me anymore but there's always the occasional sucky nurse who doesn't know how to do it and leaves you with a bruise the size of a baseball.
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)

Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine

4800mg Asacol (Four 400mg tablets, three times a day)

 

Posted 7/9/2008 7:49 PM (GMT -7)

We're home! 6 days after surgery. Bratcat is eating a bit. She is only limited to a low residue diet but so far she doesn't have much of an appetite.
The epidural pain management that they used was great for her. She was able to push the button to get more drugs when she felt she needed it. The heperin shots (to prevent blood clots) were the worst! She has black and blue marks on her arms and thighs from them. The nurses finally tried putting an ice pack on immediately after the shots. Still got bruised but less pain (it is not the needle that bothers her, it is the burning of the medicine going in).
Drawing blood daily got easier as soon as they started sending a phlebotomist. Gosh those people are amazing!
She was able to empty her bag a few times this evening with almost no problems. The incision (she did not have laproscopic surgery) hurts a bit but looks good (for an incision). We go to the surgeon next week.
A home health provider is coming either tomorrow or Friday to go over how to care for the ostomy. And in about 2 weeks we will see the hospital ostomy nurse again.

Hoping that each day brings Bratcat another positive step even if it is slowly. I keep having to remind her where she started 6 days ago. I took a few pictures in the hospital (thanks for the idea Mark & Megan) but I am not as diligent as them.

--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!

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