Met with surgeon today

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Bennie
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Date Joined Nov 2006
Total Posts : 550
   Posted 5/12/2008 9:56 PM (GMT -6)   
We met the surgeon today for my daughter. He seemed very patient, explaining lots, letting us ask lots of questions. He said my daughter would have a 3-part surgery. Sub-total colectomy would be the first part. We also met with 2 nurses. All told us to call or email with any more questions. The doctor also offered to find a patient of his so we can talk to them about the whole ordeal.  All in all, we came away not feeling horrible about the whole thing.
 
Now, how do we make this decision?  Both she and her dad and I are feeling about 50-50 about surgery (not really for it but definitely not against it). 
When she starts a flare (and there have been 3 in the past 1-1/2 years), it is horrible. 30 bathroom trips within 5 hours, totally wiped out, missing almost 2 months of school each time. And since it looks like each progressive medicine doesn't really keep her in remission, she goes back on the terrible prednisone. And the side effects of that get worse each time.  BUT, when she is in remission (or even on the road to recovery) she can function like a real person.
On the other hand, she is running out of drug options. And who knows what triggers the flares. She flared twice this year (her junior year in high school). Who knows if she will flare in her senior year.
She is toying with the idea of having the first surgery done during the summer. This would allow her to recuperate and come to terms with it before school starts. Future surgeries could be done during time off from school. It would probably be better to have the surgery when you are ready rather than have to be an emergency situation.
 
But again, how do you finally make that big decision? We know how bad she is when she flares, but we don't know how bad (or good) she will be if she has the surgery. And there is no turning back once you make the decision.
 
Thanks for letting me babble.

--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 2 tabs 6-mp/1.5 tabs 6-mp every other day, 50 mg prednisone
 
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!


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 5/13/2008 4:28 AM (GMT -6)   
Bennie,
I'm so sorry your daughter has this disease, and I understand how hard this decision is to make. I lived with Crohn's for 7 years and tried every medicine and natural diet available to try to achieve long term remission, but nothing worked for me. sad It's a terrible disease, and the long term effects of the medicines are not good either. I finally decided to have surgery when I felt like I had tried everything, and nothing was working.

The good news is, surgery removes the problem and would allow your daughter to be healthy again, without having to take any medicine. I can't tell you how wonderful it is to be disease-free and know that I will never have to go through the pain of that disease again. Surgery has given me my life back. It was the hardest decision I've ever made, but also the best thing I've ever done.

If you or your daughter have any questions about the surgery or what it's like to have an ostomy, please feel free to ask. We are all here to help. :-)

Take care,
Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3115
   Posted 5/13/2008 5:08 AM (GMT -6)   

Bennie-I definately agree that surgery was the best thing I did, I just waited too long.  I was 18 when I started to have problems, first surgery at 20 (Crohn's) was a resection.  Moments of good and bad for many years...forward to when I turned 30...I was literally incapable of taking care of my daughter/husband/house/self for a LONG time.  Had gone in for another resection and after some complications came home with my first ileo.  I had it reversed as soon as I could, only to become sick again.  Called my doctor within a few months for my second ileo.  Just this past February, I went and had a proctocolectomy with permanent ileo. 

Since hindsight is 20/20, I should have done this when I was 30!  I have a great life that is packed with activity, no worries about finding bathrooms while out, can go to a weekend horseshow with my daughter and have a great time, I can travel by car/train/plane and so many more things I thought I would never be able to do.

Your daughter is still young and has so many opportunities in front of her!  Being chained to your house is not a great way to spend those years.  Recovery may be challenging, but it is worth every minute for the great life at the end of it.  Make sure she does talk to someone (her age or not) about it, your doctor was right to offer that!

Good luck and keep us posted!


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 5/13/2008 7:02 AM (GMT -6)   
Surgery is by far the best decision if faced with long term prednisone use. I know how difficult the decision is, I had to make it myself, but in the end I have never regretted the decision. Instead of living for my next UC flare, I now live medication free and don't have to worry about where bathrooms are located or be unable to keep commitments.

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


nene205
Regular Member


Date Joined Jun 2007
Total Posts : 302
   Posted 5/13/2008 3:35 PM (GMT -6)   
I really feel the pain your daughter, you, and your husband are going through. UC teases us during periods of remission into thinking maybe we have it licked. Oh but in my case it would come back with a vengeance!! I know your daughter doesn’t want to think of surgery if she is only a junior in high school. If only she could realize that her life will be so much better without UC ravaging her body. And being so young, she will be able to have the J-pouch.

I suffered way too long with ulcerative colitis. I started out with proctitis and “progressed” to full blown ulcerative colitis. This progression took about twenty years of suffering intermingled with periods of remission. I was in denial about what my doctors were telling me concerning this disease. I would rather take massive amounts of prednisone and asacol than even think about surgery. I took prednisone practically all of my adult life. It didn’t matter that I would puff up like a giant marshmallow and bruise at the slightest bump. It didn’t matter that 6mp caused my liver enzymes to go crazy and I was too tired to take a step. I didn’t want to hear any talk about surgery. I thought I could handle it. When I think back, I don’t know how I did handle it because I had a husband, three small daughters, and I worked full time in a very stressful profession. It finally took a diagnose of dysplasia in my colon to make me realize that surgery was the only answer. Having witnessed both my parents dying of cancer in their early fifties, I knew my denial had come to an end. I had surgery this past summer. However, because I waited too long, I was not a candidate for J-pouch surgery. My life has changed for sure, but it isn’t as bad as I thought it would be. And for once in a long, long while, I am not taking any harsh medicines that make me look and feel so miserable.

nene205
Regular Member


Date Joined Jun 2007
Total Posts : 302
   Posted 5/13/2008 3:37 PM (GMT -6)   
 
I didn't mean to submit this twice. I wasn't paying attention. I'll be praying for you all.
 
Jennie in Alabama

Post Edited (nene205) : 5/13/2008 3:43:43 PM (GMT-6)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/13/2008 6:11 PM (GMT -6)   
it would be much better for her to go on and have the surgery, before she gets worse, and also, since she is still young, she will heal faster, the older you get the harder the recovery, and the longer the disease has to tear at you, the harder the recovery. I know how hard it is, and i am sure it is even harder for her, being so young, but i really think she will be so much happier. If she does it now, she will be fine, or close to fine, by the beginning of school and able to enjoy her senior year, she will get to go to prom, to senior week at the beach (or whereever they go there) without having to worry about being sick. She won't have to worry abotu missing graduation or exams or anything.
I will be thinking of you and your daughter

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 550
   Posted 5/13/2008 6:49 PM (GMT -6)   
Thank you everyone for your strength. She is trying to imagine not having to worry about whether or not she might flare during the next school year.
 
Many of you have mentioned that UC kept you "chained" to being near the bathroom. And of having accidents. And of not being able to get a good night's sleep. Knock wood, this isn't her "typical" flare. Hers is the 30-40 trips to the bathroom in 4-5 hours that knocks your body out. But when that starts to get under control, it isn't horrible (except for the prednisone which is horrible in and of itself).
Sorry if I ramble. I think writing this out (I am getting tired of talking about it) helps a bit. It seems that in our minds surgery is in the lead (it's like a race eyes ).  But then I think about the fact that it is my 17 year old daughter and none of us can make this decision.
Arrrrgggghhhh!!!
--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 2 tabs 6-mp/1.5 tabs 6-mp every other day, 50 mg prednisone
 
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!


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 5/13/2008 8:31 PM (GMT -6)   

Bennie,

That's the problem, she feels good and can function on prednisone.  Unfortunately prednisone is not a maintenance drug and the long term side effects can be horrendous.  Everyone who has to make this decision struggles as we all hope that maybe the next time we see signs of remission that we are headed into it.  Or the all so consuming, what if I have surgery and next month and a new drug is released that might induce remission?  None of these things we can predict which makes this decision extremely difficult.

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


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 5/13/2008 11:19 PM (GMT -6)   
Bennie,
I know this might sound strange, but agreeing for your daughter to have surgery would be doing her a huge favor. You have to think of all of the benefits. She'd be disease-free for the rest of her life, she would never have to take prednisone or any other medicine again, and she would never have to worry about having an increased risk of getting colon cancer. The only cure for this disease is surgery, so you shouldn't feel guilty for wanting your daughter to be healthy.

If she's a candidate for a j-pouch, that's great! You can find out more about it at www.j-pouch.org. I have a friend who has one, and she's doing great. Sue Bear on here has one, too, and is very happy with it. Please keep us posted on what you decide to do.

Take care,
Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 5/14/2008 11:32 AM (GMT -6)   

I think almost all of us struggled with this decision. Let me give you my story, maybe it will help.

I was Queen of focusing on the times I felt great. When I wasn't flaring, I felt relatively normal (so I thought). So I put off surgery. I tried all the drugs, and I used prednisone constantly. I really thought I felt normal inbetween those flares. Well, continous use of these medicines (I was on prednisone, asacol, immuran, and remicade, to name a few), took it's toll. The medicines cause my liver to shut down. I almost died last summer as my liver just stopped working. I had to stop all meds in order to save my liver and save my life. Of course, the UC came back with a vengence. I was very ill and couldn't take meds to help. I was in the hospital for 3 1/2 weeks on TPN with a picc line. I had been putting off surgery for so long, and now I no longer had a choice. I had to go through my colectomy and ileostomy while I was super sick - which made my healing so much harder. How I wish I had done this when I was 21, and not at 31!!

After my surgery, I realized I had not ben feeling fine OR normal, even inbetween flares. All the meds and the toll of the disease itself had left me exhausted and frail. I had just gotten used to it, and called that normal. Now that I am not on ANY meds (hallelujah!), I feel energized, and healthy. It's an amazing feeling.

I just want to say that the disease itself is bad enough, but when making the decision to have suregery, also take into account the fact that, while she may feel fine between flares, the meds she has to take are extremely taxing on her body. She's so young, does she want to continue to poision her body for the rest of her life? Unfortunately the meds for UC are not side effect free, and they DO affect other organs. Also, the risk of Colon Cancer is very high. And the longer you have UC the more risk you have. BEcause she is so young these reasons may trump having surgery because of the UC itself. Does this make sense at all?

The surgery is difficult, and adjusting will be hard, especially for a young girl. Have her talk to others - have her talk here. But, at least for me, surgery was well worth it, and I regret not having it earlier every day.


If at first you do not succeed, then skydiving is surely not meant for you.
 
Jo - UC, total colectomy and ileostomy on August 24, 2008.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/14/2008 6:22 PM (GMT -6)   
i did the "what if there is a cure tomorrow" thing too. And i think that is one of the hardest things to get past. Because i kept thinking, what if i wake up from surgery and the news comes on that a cure for UC has been found. logically, i knew that was really really really unlikely, but when it comes to having your body cut open you don't always think logically, lol.

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 550
   Posted 5/14/2008 7:25 PM (GMT -6)   

We're not so "what if there is a cure in the future" thoughts. Honestly the drugs are beginning to scare me more than the UC.  I think it's more how quickly it's gone from never having any problems (she didn't have bathroom issues growing up) to looking into surgery within a year and a half.  And the thought that maybe we should look into alternative medicines and treatments first (that's been a big thought by concerned friends).  And the fact that we "forget" how bad she really gets when she is fully flaring.  And especially the feeling that we are letting the UC win. 
I spoke with her GI today (weekly check-in about how she is doing on meds).  You can tell he feels bad that he thinks surgery is the best thing but he openly discusses it all with us (helps that we get alot of information from here too).  He offered to refer us to another GI and another surgeon if we wanted second opinions. On one hand, I know it is what they say you should do. On the other hand, this doctor (and it seems the surgeon too) have been open, honest and talk to us (almost as equals rather than thinking that they know it all). And so we will keep thinking about it.


--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 2 tabs 6-mp/1.5 tabs 6-mp every other day, 50 mg prednisone
 
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!


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 5/14/2008 8:03 PM (GMT -6)   

Bennie,

You can find hundreds of people who have had UC for very short periods of time, from 2 weeks to 1 year, that had to resort to surgery.  There seems to be no rhyme or reason nor any way to predict who will need surgery.  I had UC for 12 years, 10 of those in complete remission.  It was the last flare that I never could conquer without prednisone.  My very good pouch friend had UC for 3 weeks when she had to have surgery, and for her that was 17 years ago.  So, you can review your daughter's history but don't be surprised if you can't make any correlations that make sense.  I had surgery 7 years ago and other than regaining perfect health and freedom I no longer question why I had surgery, why I couldn't gain remission, why my body failed, etc.  I have made peace with this mostly because I am living a very full life with a jpouch.

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 5/15/2008 9:06 PM (GMT -6)   
i dont' think you shoudl of the surgery as letting "UC win" i think you should think of it as kicking Uc's butt (no pun intended) because you are literally taking it out and throwing it in the trash!

i had UC for 8 years before i decided to have the surgery, and i didnt' try everythign, i didn't try any natural treatments, i didnt' try many oral meds, and i didnt' try any meds from the other end, i would rather have surgery than do that eveyrday, ugh. I had some people tell me, you shoudl try this and this and why didnt' you try this and this? and my answer was i coudl waste tons of time trying all those things, or i coudl be better, now.

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 5/16/2008 10:54 AM (GMT -6)   
I have had Crohn's Disease for 5 years. Remicade helped for a couple years, but it never worked really well. I have tried every drug available, most with horrible side effects (heck, I'm trying Tysabri now!). I have fought and fought thinking I would not let Crohn's win. I felt I was strong for fighting. And, I am realizing now, as I consider surgery myself, it is strong to fight when it's reasonable to fight. At some point, fighting the disease becomes the weak option... It is allowing the disease to control me and responding to fear (of surgery and the unknown). Surgery could well be seen as the strong option. Having the courage and strength to make the change and put an end to the battle.
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 5/17/2008 4:13 AM (GMT -6)   
It's liberating to take back control of your health after having had it held hostage for so long. I agree with Summer that surgery gives us the option to win the battle.

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 550
   Posted 5/17/2008 12:15 PM (GMT -6)   

It's great that you are all here for us! I know most of the time the people on forums are the ones who are having trouble (5% of the people who are having a problem with something are on; the other 95% are out there enjoying their lives).  Glad you are here to remind us that life can be good.

Is there any place that we can read up on what to really expect? I have been reading many of the posts here and on j-pouch.org. I know it isn't as cut and dry as going in for surgery, taking out the colon, letting the body heal, learning to deal with an ostomy, and living life. I know recovery has its ups and downs and even living with an ostomy (and hopefully a j-pouch) will have its problems. It seems many people still have to take meds daily. But do those problems outweigh having to always worry about having another flare, having to take lots of meds, worrying about colon cancer, etc. even if you can possibly get into remission for a few years?  I know the probability of her having another flare is pretty high. I know her chance of having colon cancer increases over the years. Are there any statistics about surgery, ostomies, j-pouches and problems that come along with them? My mind like math so I sort of like to see things that way sometimes.

Also, her surgery would be at Schneiders Childrens Hospital on Long Island. Anyone have any information about that? The surgeon is head of pediatric surgery and has performed these operations close to 100 times. Is this good?

Thanks all. Hope you stay happy, healthy, and here! We need you!


--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 2 tabs 6-mp/1.5 tabs 6-mp every other day, 50 mg prednisone
 
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!


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 5/17/2008 12:25 PM (GMT -6)   

I think your information is a bit wrong,  most of us who opt for surgery no longer have to take RX meds.  There is a small minority of patients who will have bouts of cuffitis (UC of the remaining rectal cuff) but that is easily treatable and those who do have it still say life is better post colon.  We are all prone to pouchitis which for the majority of pouchers is an infrequent condition that is treated with a course of Flagyl.  I have had my pouch for 7 years and have never had pouchitis or cuffitis.  I don't take any meds, either RX or OTC.  I do take probiotics but I have been taking them since I was a teenager and long before I was dx with UC.  Life is not perfect without a colon, but it's far better than cycling disease.  At least I now know what to expect and my pouch is predictable.  I can backpack again and compete in 200 mile international hikes.  I couldn't do that with a colon. 

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


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 550
   Posted 5/17/2008 4:39 PM (GMT -6)   
Thanks Sue. This is one of the many reasons we are here...asking questions, getting real answers from people who have experienced this first hand. Maybe someday, bratcat and I will be the ones answering everyone's questions!

--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 2 tabs 6-mp/1.5 tabs 6-mp every other day, 50 mg prednisone
 
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!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/17/2008 9:23 PM (GMT -6)   
with the meds you may have heard people with chrons talk about that, some of them do still have to take meds, cause surgery doesn't cure chrons, but most of them don't have to take meds.
The only meds i take for my stomach now are gas-x and i occasionally take an immodium. Like today, we had a party scheduled at work and i thought we were going to be really really busy so i wanted to slow my output so i took some immodium. I always take 2 gas-x before i go out somewhere, just helps to keep the gas down.
i'm not sure what kind of info you want on what to expect, do you want a step by step of how our recoveries went, or step by step of everyday life now, or both? tell me and i will answer whatever i can!
I don't know if 100 surgeries is a good number or not, sounds good to me, and as odd as this sounds, just making a perm ileo is not a "hard" surgery for a surgeon to perform, not like say a heart transplant or soemthing like that. It's fairly basic, in a sense of course. I am not explaining that well, lol.

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 550
   Posted 5/18/2008 12:10 AM (GMT -6)   

Summer, you are explaining everything very well. I'm not sure what information I'm looking for. Maybe someone to tell me that bratcat won't have any problems or complications. Maybe that if she has the surgery over the summer, she'll feel great by the time school starts and have a terrific, painfree, healthy school year and not have to worry about feeling sick. Maybe (me being selfish) that it's the right decision to make for our daughter even though it is so drastic. Recently I think the UC is just a pain to have but the side effects from the prednisone (even though she is tapering) and probably the other meds is worse. Aches, pains, headaches. She just wants to feel better again.

I think surgery is looking better and better. I guess I have to get over the guilt. Then we just have to say "let's do it". Then not fall apart leading up to the surgery date.

I hope some of this makes sense. I'd like to think that many of you have had some of these thoughts and fears. It's hard to talk to people who aren't/haven't gone through this. The people I would probably talk to (other than my husband, bratcat, and her brothers) would be my parents. And they passed away many years ago. Our extended family (brothers, sisters, etc) will be supportive but it's not the same.

Wow, you really should charge for these therapy sessions! :-)

Update--I had a good cry and decided to do some web searching. Turns out that over the past year and a half, every time someone posted a link to an informative site or discussion, I bookmarked it. Some were about surgery. At the time, most of it overwhelmed me (some still do). But many made sense now since we saw the surgeon. It made me a bit calmer and my outlook seems a bit more optimistic. Still have lots of guilt but hey, I'm a Jewish mother! It comes with the territory.


--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 2 tabs 6-mp/1.5 tabs 6-mp every other day, 35 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!

Post Edited (Bennie) : 5/18/2008 12:57:15 AM (GMT-6)


Booka
Regular Member


Date Joined May 2008
Total Posts : 60
   Posted 5/18/2008 5:47 AM (GMT -6)   

Hi Bennie,

I do understand the quilt...I to have to make decisions w/ regard to my daughter...she is much younger she just turned 11,but I have had to make major medical decisions all of her life. Although now she can put input in she is still to young  to understand all the outcomes and side effects etc...in the end she always tells  me she just wants to be better,that she is tired of being sick evetyday,she wants to be a kid :-) !! My daughter does nothave  UC,but she has CI/Motility Problems.We have already had 2 major colon s/x and on 6/12/08 we will be taking the big plunge and having a total colectomy done...and like I have also read there are side effects to everything,but which is harder to deal w/? I feel we have to take whatever chance we can to give our kids the best quality of life that we can !!!My biggest fear is that when she gets older and can truly understand everything that she will ask me why I made the choices I did...so for me anyway I have come to terms w/ that I am willing to do what it takes and make hard decisions to give her the best shot at being sympton free,or least better than what she is now...  Its the long run that counts and quality of life...w/ my daughter we have to get to point where she is not taking tons of meds daily or being hooked up to  the 2 machines  daily....she can,t even play outside for long perods of time,can,t swim,run,jump etc,,,her sickness takes evetything out of her,so I quess I will make decisons as hard as they are to give her a life she has never known...Hope that helps you fell better...just keep telling yourself, you are giving her the chance to have the best life possible!! :-)   And pray...w/out GOD in my life I could not have even made the choice to move forward.

As far as the hospital your going to I have heard good things about Shrinners Hospitals...we used to live in NY also,about 45 minutes north of NYC, and it took me six years to find doctors who would even give my daughter a diagnosis,and that was at Childrens Hospital Boston...so even though we live in Tennessee now we travel back and forth to Boston...I can't say anything bad about all the care we have gotten...ask around like your doing,and I'm sure you will get feedback. If you want to go for a 2nd opinion I can give you all the info on Boston. Hope all this helped!! Talk more soon!!

Booka


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1246
   Posted 5/18/2008 6:05 AM (GMT -6)   
My parents' biggest fear was that one day I would turn around and say to them 'Why did you let them do this to me?' I never have. My ileostomy gave me my life back and I have never ever wished I'd never had my surgery.

As parents you are probably worrying way more about it than your child ever will :) I can tell you that from my own experience and from talking to others who have had ostomies since childhood. I know you want the best for your child, so give them the gift of life - a life where they don't have to worry about where the nearest loo is, when their next flare will come upon them, what meds they have to take each day and a life of no more pain.

Yes, it's a big surgery and it will be a learning curve afterwards. But in the long run, the pros far outweigh the cons in my experience.

Good luck to you all.
I have had an ileostomy for 32 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/18/2008 7:14 PM (GMT -6)   
i will tell you this, if my son were to get UC (god forbid) before he was old enough to make a decision i would have his colon taken out. Actually a while back, he had some blood and mucus in his poo and i told my husband, if this is UC we are taking it out. and my husband agreed. Turned out he was just having too much dairy, and sinus run off together were irritating his stomach.
But as for being better by school, recovery is diff for everyone. But i had my surgery on April 17th, and then we had my son's b-day party in the middle of June and i was feeling pretty good for that. and she is younger than me and may recover faster.
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