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Posted 8/29/2008 7:26 PM (GMT 0)
I have been reading the posts about the Jpouch because I am thinking of having this done next year.  I say next year because I have to wait for my hubby's vacation time at work to renew itself so he can take some time off to care for me and the kids.  So anyway, I have been researching this and reading all the info I can get for the past 2 years.  I feel that I am ready for the leap but I still have some doubts.  I am one of those people that think ok well I am doing ok this time, do I really need to do something so drastic?? And then I flare again with my UC and think ok! I want this thing out!  I know no one can make this decision for me and that I must come to peace with it myself.  I would say that I am 95% at peace with my decision.  I have yet to bring this up to my GI but I see him in September and I plan on bringing it up then.  I have had this horrid disease for 16 years, I am tired, I am disheartened, I am getting frustrated because I am still flaring even after being on an immune suppressor that is failing me but then I tell myself well I am only going to the bathroom 4 times a day with D, is it really that bad???  But then I think about being Uc free after surgery and I see light at the end of the tunnel.

How many of you who have had the Jpouch see sawed on your decision?  What was your final declaration for having this surgery?  What was the straw that broke the camels back?  I am not talking about dysplasia or cancer making that decision for you.  I am talking about elective surgery.

Posted 8/29/2008 9:39 PM (GMT 0)
Red, I think I'm in a similar boat as you. A flip flopping one anyway. I've come to terms with almost everything... the temporary (or maybe even permanent) bag, the surgeries, the risk of infertility, the time off work, the recovery, the pain, the scars, the lack of UC, the lack of cancer, the lack of meds... Right now the only thing that worries me when I think about it is the prospect of being in debt for a long time after paying off the remainding hospital bills. But then I think of all the money I spend on meds, doctor visits, colonoscopies (this last one cost me $700!!!!) and think well, I'm sure it's worth it. Oh, I also worry that my boyfriend would end up leaving me because of it, but I'm just paranoid and always think he's going to leave me over one thing or another.

But, I still get scared and sometimes I wish, as stupid as it sounds, that they would find dysplasia or something and I wouldn't have a choice but to have surgery. Then I wouldn't need to think about the what if's and put it off.

It's such a huge step! I'm sure everyone had their doubts, I bet the majority even woke up after and thought "what the heck have I done?" But I'm pretty confident that in the end it would be great.
Posted 8/29/2008 11:26 PM (GMT 0)
I'm also thinking about it. The Remicade helps a lot, but I still have close calls and accidents, fortunately not in public yet, but that's because I severely limit my outings -- no way to live. My problem is I am self-employed and we depend on my income. Fortunately I have fairly good insurance through my husband, but the eight weeks off work (I have a fairly physical job) would cost me quite a lot in initial missed income, and I'd probably have to rebuild my business again. Also, there are expenses that would remain even while I am not working (I wouldn't have to pay for gas, but the grooming van payments would still be due, as well as insurance and other costs). While I wouldn't have to rebuild from scratch, I will probably lose clients. Since I started up my mobile dog grooming business about a half dozen others have opened in my area. We're "friendly" competition, but we're competition nonetheless. As I am researching the factual aspects about the surgery, what life would be like, what I could expect -- I am certain that not working would be extremely stressful for me and I wonder if that in itself would cause complications and problems. Whew! If only I could be 100% certain that this would be the right decision and that everything would work out with my business.
Posted 8/30/2008 12:39 AM (GMT 0)

You all know Bratcat's story from the UC forum. She only had UC since September 2006. She only flare 3 times. But those flares cost her to miss out on quite a bit of her high school years. She never had accidents but when she flared, she would go to the bathroom 40-50 times in a 4 hour period. The only "real" medicine to help her was prednisone. As a family, we talked alot about her choices. As we (especially her) came more and more accepting of surgery, we realized this would be a better time for it. No job worries (other than a part-time afterschool job), no insurance worries (still under ours), no money worries (at least not for her). The hope is that with surgery, she can go to school, enjoy being a teenager, and go on to lead a healthy adult life.

It was very hard because she was in remission by the time surgery came (she was down to 5 mg of prednisone from a high of 60). Going in to surgery, the surgeon reminded us that if it turned out to be Crohns, she would get a permanent ileostomy. She had as many tests as possible to rule it out but the thought still lingered. After her step 1 surgery, we asked the surgeon about her colon. Truthfully, he said it was somewhat inflamed. Not great. Not horrible. Not, you are so lucky to have had the surgery right now. He and the GI feel that was mostly because she was in remission. Which is a big plus going into surgery.

Bratcat is looking forward to being on the other side of surgery. Finished with the surgeries, finished with the recoveries, living her life in a new better way. For now, she is accepting of her ileostomy (no, she still doesn't like it). When the surgeon asked, she told him that no, she doesn't feel better now than before surgery (but that is because she was in remission). But she is very happy not to have to take medicines, excited about not having to worry about flaring again. She is going out more and more with friends. She didn't in the beginning after surgery because of her lack of energy not because of the stoma. She is counting the days (73) until her reconnect surgery. She worked it around her school schedule so as not to conflict with too many things she wants to do. She has been sick for the past 2 years in Sept-Nov. She plans to use the month of November to recuperate and hopefully be able to go back to school in December.

I think alot of choosing this surgery electively is your mindset. You have to go in knowing that it is a major surgery and will require major recovery. It will be a better change but it will still be a change. Life won't be as it was pre-UC. Her bathroom trips may be more frequent and much looser. There may be some issues to face in the future. But she should have no urgency, no horrible cramping, no fear of future flares for the next 60+ years. It also helps to have a great support system. Our family understands what she is going through and accepts her as she is. Ostomy jokes have become an extension of the many bathroom jokes in our family.

I am sure you are hoping to hear from someone other than who you have heard from before. And they will be along. But I am a proud mommy who has watched her bratcat of a daughter face a tough situation. She had to process alot of information about her life now and in the future (not easy for most and especially not easy for a teenager).

If you ever want to talk, I am sure Bratcat would be there. Of course, I am always here too.

Posted 8/30/2008 2:42 AM (GMT 0)
i didn't choose the j-pouch surgery, but i did choose surgery, and the proverbial straw for me was when we went to the beach and i couldnt go out there with my son, the first time he really got into the water to play, and the first time he made sand castles and i missed that. And when that happened, and it hit me that if i stayed this way i was gonna miss everything in his life, and i asked my Mom if she would be grossed out by me if i had surgery and she said NO!!! i had already talked to my husband about it and he was all for it! it was hard for me to make the decision, honeslty, i had been secretly hoping i would get toxic mega colon so i wouldn't have to decide on my own, itsn't that awful???
I went in to get the surgery, and my GI talked me into trying remicade, stupid decision on my part, it only worked for a while, and even while it was workign i was always waiting on it to quit working!
So, i went and i said, either you take it out or i will! and he set me up with a surgeon. I went and i talked to him, i talked to people on here, i read stories and i did lots of research. I chose a perm ileo, i thought that was the best choice for me, i honestly, after being so sick for so long, never ever wanted to use the bathroom the regular way again!
anyway, it was hard to decide, but i KNEW i hated life and that i was unhappy and there was a CHANCE i would hate it after i had it, but i had to take the chance, i listened to so many stories of people who are so happy now!
When i went in for the surgery, i was very very nervous, i just kept thinkign of my list i made, when i was takign the prep, i got through it by thinking, this is the LAST time i will ever have to do this again! I thought of all the things i would be able to do, even the stupid things. And i worried about not being able to do dumb things too, i have a post on here where i was worried that i could never do a cart wheel again, i hadn't done a cartwheel in 10 years, and i had no reason to think that i would ever want to do oen again. But since i had surgery i have done a cartwheel, not a good one, but still, lol.
Anyway, after i woke up from surgery and i looked down and that bag (they put a clear one on you, and the stuff that comes out at first is this nasty lookign green stuff) and i thought, What the (insert bad word) did i do??? and then i felt clean, i could tell it was gone, and then i thought yay it's over.
And it didnt' take long until i was feelign so much better, i mean i had surgery pain, but that was diff cause i knew that that pain was going to go away, and i knew that the UC pain never would!
anyway, as for the finacial cost, it wasn't cheap, but i think, that over time, factoring in drs visits and medicines (i was taking two meds plus five immodium a day!) gas to get to drs visits, other random things that it is was actually cheaper to have the surgery. now i only take the occasional immodium, like today when i knew i wouldn't really have time to go to the bathroom at work, and i take some gas-x.

I am not gonna lie to you and tell you that i am always 100 percent happy there are times i get annoyed with the bag, but that doesnt' last long. And when i do i think of all the things i can do now, and it amazed me how happy i was to do some of the stupidest things, i was excited beyond belief to get to mow the yard! and to stop and get some fries and actually eat them in the car! wow that was amazing! I know it sounds dumb, but ya'll know what i am talkign about how many little things you can't do.
anyway 99.9 percent of the time i am super happy with my decision!
Posted 8/30/2008 11:08 AM (GMT 0)
Yes, I've had those thoughts too about thinking if I had toxicmegacolon or even dysplasia that it would make my decision much easier! I am horrible when it comes to down playing my symptoms and my disease that I am a master at it. So I think it's time for me to reconstruct my whole mental attitude and comes to terms with what I may be facing. I am even afraid to broach the subject to my GI. He's a great guy and very understanding. I think he is waiting for me to say the final word. I think I remember in the beginning of our medical relationship, he said something to the effect: "This is your body and your life. We are partners in this fight. I am here to merely guide you and keep you healthy, it is your job to help me along and decide the best course of action for you" or something like that. But I have such a horrible independent and stubborn streak that it's tough to back down and call it quits. However, I have changed my whole perspective over the past 2 years. I know surgery is not going to be a walk in the park nor the recovery. But I am looking forward to the day when I can wake up and not have to plan my schedule around taking my pills, not having to make extra time in the mornings for my mad dash bathroom runs, not have that FEAR AND DEPRESSION hanging over my head for the next flare.
Posted 8/30/2008 2:55 PM (GMT 0)

Sherry,

I was one of those who chose elective jpouch surgery.  Elective meaning that I was not severely ill when I made the decision.  Believe me, it took a lot of mindful struggling to get to the point of having surgery, along with months and months of research and education.  What sealed the deal for me was meeting another jpoucher face to face and hearing her story.  I happened to be langushing in the hospital on best rest when she told me that she formerly had UC and opted for surgery.  She had the same issues I had; lack of quality of life with UC.  I was amazed at how healthy she looked, amazed that she worked 10 hour days on her feet, and amazed that she ran marathons and ate anything she wanted.  She had everything I wanted.  I wanted my life back.  I wanted to hike and backpack.  I wanted to make travel plans and keep them.  I wanted off medication.  I wanted a life that was free of knowing where every toilet was in town while I was out doing errands.  I was sick of compromising and felt cheated out of two years of my life.

Four months after meeting the nurse I had surgery.  It has been a blessing and there is not one day that goes by that I don't silently thank my surgeon for giving me my life back.

Sue

Posted 8/30/2008 5:34 PM (GMT 0)
I'll give you my perspective, as a Crohn's sufferer, why I chose elective surgery...Like most people, I wanted my life back!! I was diagnosed 20 years ago, had a resection, lived for 10 years without ANY major issues, then BANG I was in full flare. I had several surgeries and one day, after surgery complications, an ileostomy. I thought my life was over, got through the 3 month colon rest, and had it reversed. My life went back to the same agony it was prior to the ileo and I realized I loved my active life, even if it included an ileo. I lived for seven or so years with a "temporary ileo" waiting for a "cure" and then realized I was still not living...I guess I am basically saying it IS OK to want to have surgery. No one should have to suffer, with UC or Crohn's, as long as they are okay with the alternative...good luck with your decision.
Posted 8/31/2008 5:48 PM (GMT 0)
Hi Sherry! I choose to have elective j-pouch surgery.I actually just had the first part on July 8th and i can honestly say i dont regret my decision for one second and it has not since been an easy road to recovery for me. I had only struggled with UC for about a year and half before i made my decision. I know it doesnt sound like a alot of time but the only thing that could calm my flare a little was prednisone and i hated the effects of it and didnt want to be on it. Even when i was on prednisone i still never entered remission. The first time surgery was mentioned by my doctor was last december and i immediately opted for trying methotrexate. I was nervous about having a bag. The methotrexate was able to bring me down to about 6 bowel moevements a day, and only occasional urgency. I hated giving myself injections, my doctor eventually added Humira to my regimen i sat down with my parents, im 22 and still in college, and had a long talk. The truth, i had gone from being an active person with so much energy, to someone who took 2 hour naps during the day and would still sleep at night, i barely had an appetite. I didnt want to be sick anymore. A year and a half was enough for me! So i met with a great surgeon and in July started the process. I did have some problems after and im still recovering, but every day i wake up and i dont run to the bathroom. I can leave the house without worrying about where the nearest bathroom is! Its great and i dont mind the bag at all! Im scheduled for takedown surgery October 7th and am looking forward to it! Good luck with your decision, i know its not any easy one!
Posted 9/3/2008 10:53 AM (GMT 0)
Thank you everyone :) I guess it's natural to second guess a decision that could change your life eh? I see my GI next week so I am going to talk to him about this. You know what I find amazing??? Is that I have people who I have known for quite some time that have been trying to talk me out of surgery! Maybe that's part of my doubts too. They make me doubt I am doing the right thing but then I stop to think........what do they REALLY know about what I have been dealing with for the past 16 years??? Like I said, I am a master at hiding my symptoms so they haven't seen me at my worse nor do they know what it is that I have to do everyday just to leave the house. So when I finally tell these people what it's like living with UC, they are astounded that I have made it for as long as I have.
Posted 9/3/2008 1:12 PM (GMT 0)
I had friends try to talk me out of surgery too. They are no longer my friends and probably never were.

If I could trade you one day of my life post UC so you could see how much better you would feel, I would. Finally I feel like what a normal healthy person must feel like and there is not a day that goes by that I don't reminisce over how bad it used to be and how lucky I am for what I now have.

Sue
Posted 9/3/2008 6:29 PM (GMT 0)
Sue, I read your posts every time and especially when it involves having your Jpouch. I think you are an awesome inspiration for anyone who has an IBD! I believe it was you too that opened my eyes to the Jpouch world. Thank you for taking the time to help everyone out even Uc'ers who are still fighting their fight.
Posted 9/5/2008 1:40 AM (GMT 0)

Hi Red,

Surgery was a big decision for me.  I think I was ready to make the decision because I went back-and-forth about it in my head but what really did it was when the doctor fussed at me about re-filling my prednisone.....I was denying that I was steriod dependent....I could not get off it without getting super super super sick.   I felt like I was addicted to prednisone and that I was begging for it.  I scheduled my surgery the next day. 

I gotta tell ya, I remember the first time that I looked at a stoma on the Internet a long time ago and I was determined that there was NO WAY that I would have one of those......NO WAY!!!  Well, I do now and it is not so bad.  I gotta tell ya, a couple of days ago I was feeling kinda sick.....I had a very slight fever......I felt alittle nauseous and it reminded me of when I had UC.  It about put me into tears because it reminded me of how I felt everyday when I hit 10 mg of prednsione.  Boy, that really reminded me that I am so grateful to get that nasty and diseased colon out of me.  I fought and fought and fought to keep it but I really sacrificed precious life/living because all I did was suffer with it.....bleed, dehydrated, urgency, mucous, nauseous, fever.......  I was choosen for the 3 step procedure for the j pouch and I have step 2 in like a month or so.  I know that I was sick.  The surgeon said my colon was like tissue paper.

I have to say that someone was right when I read a few years ago:  "you should consider surgery when UC is affecting your quality of life".  I don't know if I wish I would have done it sooner because I think it was good that I exhausted all my options so I know that I did all I could do but I was just not meant to have a colon. 

Sincerely.....the bag is not that bad.  Now that I found a perfect fitting bag, I pretty much do not notice it. I wear a bathing suit and swim etc and my family looks at me in a suit and they can't even see it.....they often say that they forget that I even have it.  You can have a normal life with a stoma.

Posted 9/7/2008 1:52 AM (GMT 0)

I have had my ileostomy for a long time.  Just last month, a good friend of ours just found out that I have an ileostomy and she was so shocked.  You see, the four of us (my DH, her and her husband) go to sprint car races, NASCAR races, etc.   Some of those events are all day long events, esp considering the drive to get there and the cookouts before and after the races.  She just had no idea.  She wasn't grossed out, but just really had no idea.   She knew that I had CD, had had multiple surgeries when I was younger, and have a hard time gaining or keeping weight on. 

For what it's worth, her response made me feel good...  you see, even really close friends don't Have to know unless you want to tell them.  They sure can't see it.

Good luck in your decision.

Posted 9/8/2008 12:33 PM (GMT 0)
Thank you for all your replies. :) Yes, I do believe it is affecting my quality of life. I am not willing to go onto the more heavier duty meds for Uc such as Remicade or Humira. Because I have it in my head that my colon is just not going to work right ever so why suffer? I am just plain ole tired. I was thinking last night, I was on the couch watching tv and I was extremely tired. I didn't want to get up to take my nightly dose of medication. But I trudged to the cupboard, got my pill organizer and swallowed all 9 of them - yes it one swallow...I'm a pro :) So I was thinking, boy if I had the surgery I could eliminate about 17 pills everyday I take just to have a barely functional life again! That is no way to live life. I want to go out there and do the things that I used to do - the things that I've had to put on hold because of the pain in my gut, the fatigue, bleeding, and bathroom urgencies. I want to enjoy food again instead of looking at my dinner plate and dreading what that food is going to do to me.
Posted 9/8/2008 2:59 PM (GMT 0)
Red,
As I was reading your post this morning, it occured to me that I really did take a lot of medicine when I had UC. All that medicine and all those enemas did little to help my UC. In fact, many of the medicines I took harmed me. The predisone puffed me up and has made my skin so thin that I bruise easily. The 6MP caused my liver to malfunction. And the enemas hurt my rectum. Why didn't I find this site while I was in pure-d misery? Life has become virtually med free, now. The surgery was my savior. Best wishes to you!!!

Another thing to consider,the FDA has issued an alert on certain drugs taken by UC patients. Serious problems with fungus.

http://www.fda.gov/cder/drug/InfoSheets/HCP/TNF_blockersHCP.htm

Post Edited (nene205) : 9/8/2008 9:12:48 AM (GMT-6)

Posted 9/8/2008 3:10 PM (GMT 0)
Red-34

No matter which surgery you choose, your life will be .................1,000,000 times better.
I just got my ileostomy after 12 years of UC and after this last year with it, it basicly made the dicision for me. I had the option of the J-pouch, but I knew that if I got the ileostomy, I would only need one surgery and a ton of people have ostomies, so it's a proven thing. The J-pouch sucess rate is alot better today, but wanted the proven method. Someone correct me if I wrong, but is the J-pouch surgery a 2 surgery thing?

HOW DO I FEEL?
Well it was a learning curve with the ostomy, I had to over come my new body, and get over the fact that I will not be a normal human was a stumbling block, but when I finally stood up from the fall...........I took off running!!!
I have never felt so good in my life!!!!!!

I have never felt so good!!!!!! and my surgey was 2 weeks ago!


I was up walking 5 hours after surgery!
Posted 9/8/2008 3:20 PM (GMT 0)
The jpouch can be done in 1, 2 or 3 steps. It depends upon how sick patient is, how long they have been on prednisone, and ultimately the patient's physiology which isn't known until opened on the OR table.

Sue
Posted 9/8/2008 6:18 PM (GMT 0)
Nene, thanks for the link :) We had this link over on the Uc forum and many who are already on Remi or Humira are doing double takes. Right now, I am only on 6mp and Colazal but I found out recently that my body is just not metabolizing the 6mp properly even after dosage increases. My GI won't raise my dose anymore because of possible liver toxicity. So I keep flaring and even my GI is getting frustrated. He is one of those rare docs that only prescribe steroids unless it's the last resort. I have never ever been on oral steroids, only steroid enemas. But I was on those enemas for almost a year once - that was the transition period of me starting on 6mp. I had all the typical symptoms that steroids do to you even moonface. And I think after being on them for so long, my body is now sensitive to them. If I start the steroids again, it's like I never stopped and I get instantly all jittery, moody, my thighs ache something fierce, food cravings etc. Heck even now if I get cortisteroid shots (for other health issues) I get flushed, jittery and I can't sleep. So by having my LI removed, I hope my body will get over this steroid sensitivity in time.

Tardofit, you've given me hope :) Thank you!
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