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!
Post Edited (nene205) : 5/13/2008 3:43:43 PM (GMT-6)
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.
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.
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.
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.
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!
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.
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.
Post Edited (Bennie) : 5/18/2008 12:57:15 AM (GMT-6)
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!!