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Could anyone shed some light on my surgery confusions?

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Ulcerative Colitis
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Posted 2/16/2013 9:45 AM (GMT 0)
A little back story to help. I'm 25 and was diagnosed at age 12. I used to be somewhat controlled by Colazol, but now it does nothing. Lialda was a huge failure, Prednisone puts me into false remission, and after trying Imuran against my better judgement nothing happened at all. I am being offered Remicade, but I am uncertain on how I feel about being on biologics long term. My doctor basically said I am lucky that I have kept my colon this long and surgery is a good option because most likely it will become necessary anyway. We both feel I stand a better chance of healing better at 25 than I will as I age. I am working up my nerve and collecting information about surgery, but there are somethings I can't seem to find online. I don't know why nervousness is setting in. I knew at 12 this was coming. It's a numbers game at the core and the younger you are when you develop something the longer it has to try and kill you. I was wondering if anyone could help me with a few facts, figures, and testimonials. Here goes..

1. I keep reading articles that mention things about people who "are not good candidates" for ileonal reservoir surgery, but no one actually says what criteria make one either a good or poor candidate. Does anyone know?

2. My Mom is concerned about how much surgery would decrease my life expectancy should I not you know.. croak on the table. What, if any, effect does surgery have on how long one lives?

3. Is there a way to collect data on the mortality rate during surgery as per your local hospital?

4. For anyone who is married or in a committed relationship: How did you prepare your significant other for the changes that would take place after surgery? How do you prepare them for the idea that you could die?

5. For those of you who have already been through surgery what was your experience? Would you do it again?

And I know the last one is a hot button issue. If you don't share my beliefs please be respectful enough to just exit the thread.

6. I never really cared about dying, but after meeting my husband I am afraid of being without him even postmortem. I know he will be going to Heaven. I am a Christian, but one with an extremely guilty conscience. I'm mortified at the idea of being away from my husband as much if not more than the idea of going to Hell. I was never Baptized and feel it is something I should do before going under the knife. Is that completely insane? Did anyone find that making a further commitment to your faith and/or beliefs gave you solace and courage?
Posted 2/16/2013 9:58 AM (GMT 0)
I think whatever you need to do to help you get ready for surgery is perfectly natural. If you feel you need to be baptized then that is the right thing to do. No one should question you on that. You have to be the one to feel safe and if being baptized adds to that safety go for it. It is not like it can hurt you in any way shape or form.
Sorry I don't now anything about the actually surgery part.
Posted 2/16/2013 1:29 PM (GMT 0)
IMO, you are considering surgery before considering ALL options.
There is a lot of information under the U.C. resources tab. Take a look at the 11th post where InSoFla discusses her regimen and a later one where LDN is discussed.
Others on this forum have had success with other diets and/or alternative therapies.

You seem to be most concerned about dying but IMO it would be worse to have surgery that results in a lot of post-surgical complications/issues that could go on for years.

Most, but not all of us, who post on this thread are trying to save our colons.
You should also post your questions under the Ostomies thread and read the posts of those who have had surgery.

Many of us have agreed that our mental state has an effect on our physical condition, so if you will feel better being baptized, you should do it.
Good luck to you.
Posted 2/16/2013 3:32 PM (GMT 0)
Hi, I'll try to answer your questions as I'm one of those mentioned by ItsAlwaysSomething who isn't "trying to save her colon" anymore.

1. I'm not a doctor, but my understanding that there are three main reasons that someone would be a bad candidate for j-pouch (IPAA):
- Crohn's disease: there actually are some surgeons who will construct j-pouches for Crohn's patients, but most will not (and I've even read about hospitals that refused to allow it!). If there are signs that your UC is actually Crohn's colitis, the likelihood of developing Crohn's in the pouch and other problems is just too high, and IRA or permanent ileostomy is recommended.
- Anatomical issues: I don't know too many details about this, but I understand that sometimes it just isn't possible to build/hook up the j-pouch because of the size/shape of your body, blood vessels, etc. Only a surgeon can tell if this is the case, and unfortunately often only during surgery. I don't think this is very common.
- Overall health: some people on the Ostomies board can tell you more about this. Basically if you're in very poor health, suffering from other ailments, etc, the surgeon might decide you wouldn't be able to heal properly from j-pouch surgery, and recommend an ostomy instead.

2. I haven't seen any research on this. I think it would be very difficult to compare because you would want to compare the life expectancies of people with equally severe UC, but most people with UC that is severe enough to warrant surgery will need it eventually no matter what... or would die from toxic megacolon, perforation, colon cancer, etc without surgery.

3. I would ask your surgeon about that -- it sounds like a statistic that most hospitals would have available. However, if you do opt for surgery you are NOT obligated to use your local hospital. Ileostomy and j-pouch creation are not simple procedures and I would recommend going to the most experienced surgeon/hospital available to you. We can make some recommendations if you can share your general location (though many people fly from all over the country to have their surgery performed at Cleveland Clinic, you might be lucky enough to have a high quality facility closer to you).

4. Can't comment on that, except to say your spouse should be prepared for "the idea that could die" already because we could all die at any time, surgery or no, UC or no. A friend of a friend just slipped on the ice, hit his head, and passed away. Not trying to be macabre, but it's the truth.

5. I'm doing the three step j-pouch procedure, and have only done the first step so far. The first step was to remove my colon and create a temporary ileostomy. The aftermath of surgery was no picnic, but all in all it was a lot less painful than my previous hospitalization for a UC flare. I have absolutely no regrets. There are a lot of challenges to having an ileostomy, and I'll admit I have cried from the stress of dealing with it, but I would pick an ileostomy over the symptoms of UC any day. I have no more crippling pain, I sleep through the night, and I can eat a wide variety of foods, including fruits and vegetables and dairy, for the first time since my diagnosis. I've been able to stop taking the wide variety of dangerous drugs I was dependent on (you can see all the ones I tried in my signature), and tomorrow I will take my last dose of prednisone. I've written a lot more about my experience with the surgery on my blog (in my sig) so I'll stop there for now. Happy to answer more questions if you have them.

6. Our beliefs couldn't be more different, but I absolutely think you should do whatever you can to feel confident and happy before you go in for surgery. If that means being baptized, then absolutely do it. I think this ties into my earlier answer to you too... you could die crossing the street tomorrow, if being baptized is important to you, you should probably do it whether you have surgery or not.
Posted 2/16/2013 3:36 PM (GMT 0)
I think a person who is not a good candidate would be someone with Crohn's disease or people with other conditions. I would ask the surgeon this question and whether you're a good candidate.

I have never heard anything about life expectancy and surgery. You should expect to live a normal life after surgery. Not having a colon wouldn't have an impact on how long you live.

I would ask the surgeons you consult with about mortality rate but I would image it's VERY low. I saw one woman post here who had a son who died a few weeks after surgery & that's the closest thing I can think of.

4. you should post this on the ostomy forum. Most of us have not had surgery - we are treating with medicine on this board.

5. same as above. I can tell you I haven't seen anyone who said they had regrets about having surgery.

6. I think you should do whatever makes you feel comfortable. I personally am not religious but everyone has their own beliefs and if I felt it was the right thing to do, I would do it!

One more thing, you should ask about the ability to have children after surgery. It's not impossible but it can become more difficult. It's one thing that young women need to consider before undergoing this surgery.
Posted 2/16/2013 3:52 PM (GMT 0)
Yes, definitely, great point asking about fertility. I consulted with a few surgeons and I really appreciated that one of them actually brought it up without my having to ask. It wasn't a big concern of mine so I haven't seen the numbers myself, but surgeons I talked to told me that "fertility rate is unaffected but fecundity is significantly decreased." What that means is, basically, your likelihood of getting pregnant just by having unprotected sex is significantly decreased -- BUT your overall likelihood of getting pregnant eventually is the same (assuming you're willing to do things like fertility awareness, etc).
Posted 2/16/2013 3:55 PM (GMT 0)
     I agree with Ted about the baptism part.  As far as surgery is concerned, you must not have such a negative outlook!  I was two months short of my 64th birthday at time of surgery, my overall health was deteriorating rapidly, I had uncontrollable high BP, prednisone induced type 2 diabetes and I was prednisone dependent for two years straight (suffered with UP for twelve years).  I was on 6MP for seven years, Colazal for ten years (nine a day all that time), numerous rectal meds.  I then tried Remicade which failed after my 3rd infusion and then Humira....no change after three months use.  I had portapots stationed throughout my house because I could not make it to the bathroom.

     What you have to do is measure your quality of life as it is now compared to life without UC.  You are young and relatively healthy.  I was old and NOT a candidate for j-pouch because of my other health issues.  That fact did not deter me from surgery.  I even had to pass a stress echocardiogram before my operation or my surgeon wouldn't operate!  Was I frightened to undergo the surgery?  My hubby would answer...does a bear poop in the woods?  I was scared stiff!  However, the thought of dying under the knife never even occured to me.  I think I was more concerned about how I would manage with a "bag".

     It was a long recovery for me, but there is not a day that goes by that I don't thank GOD I had that surgery.  I am now 66 and living life to the fullest.  I only take one pill a day and that is for my well-controlled BP. I no longer have diabetes. My hubby of almost 44 yrs has never left my side.

     Now for the religion part.  I consider myself a "lapsed" Catholic.  You could say...I believe in my faith but not so much the "church" or the people running the churches.  Never in my life would I ever dream I would come to this point because there was a time I seriously considered becoming a nun.  I received all the sacraments of the church...minus Extreme Unction of course..lol,  and I prayed wholeheartedly before my operation and placed myself in God's care and prayed He would guide the hands of my surgeon and residents.

     You just do what you feel is in your best interests.  If surgery is in your future, seek out the best colorectal surgeon you can find.  I had my surgery in Philadelphia even though I live in south Jersey.   I don't trust the local hospitals enough to want to undergo major surgery here.

     The best of luck to you!

Posted 2/16/2013 4:04 PM (GMT 0)
1. Yes, Crohn's would not make you a good candidate, or an indeterminate diagnosis.

2. Surgery does not reduce your life expectancy. Tell your Mom that chronic disease has more of a possibility of decreasing life expectancy.

3. My surgeon did over 2,000 jpouch surgeries and lost one patient. I believe that individual had other complicating health factors. The surgery is complex, but not high risk. All surgeries come with risks, just get to know what they are.

4. Have your significant other attend surgeon appts with you to prepare.

5. I would do it again in a red hot minute. I have had my jpouch for 12 excellent years. No more medications and no more unpredictability in my life.


Sue
Posted 2/16/2013 4:04 PM (GMT 0)
I would try the Remi before surgery. Like I am right now )).
Posted 2/16/2013 4:48 PM (GMT 0)
6. I never really cared about dying, but after meeting my husband I am afraid of being without him even postmortem. I know he will be going to Heaven. I am a Christian, but one with an extremely guilty conscience. I'm mortified at the idea of being away from my husband as much if not more than the idea of going to Hell. I was never Baptized and feel it is something I should do before going under the knife. Is that completely insane? Did anyone find that making a further commitment to your faith and/or beliefs gave you solace and courage?


Babe, give it all to God, because He has abundant love and grace.. there is nothing you have done that makes you unloveable. All He wants you to know is how much He loves you. Give it to Him.. In the end, that is all any of us can do.

I met God through this process and as absolutely hard as it has been.. He has always met me in the Shadow. I had alot of shadowy places in my heart of shame and brokenness.. I had lived a life very far from perfect.. I went so far as to thumb my nose at Christianity for several of those years as a wiccan. God forgives us our youth ;)

Its good that your love for your husband inspires you.. that through it, you see glimpses of God. Give your heart to God in all ways and then that love just becomes an instrument in a love song.. somehow he makes it greater. You stop living scared because you know that no matter what.. the worst thing is Heaven.. and you know what, that is pretty awesome.

And well.. I just dont believe my story has to be that turmoil filled one to be powerful. It doesnt have to be tragic. God wants to give me awesome.. So I trust my gut when it asks questions.. and I chase down rabbitholes trying to find a "cure".

Im so sorry that you have known this disease for so long. I hope so much for you that you find a treatment plan that brings you confidence and health. When I dont know what to do, I pray and journal.

Best of luck.

www.youtube.com/watch?v=TCunuL58odQ
Posted 2/16/2013 7:00 PM (GMT 0)
My apologies for using the wrong forum. I need to explore the site further, obviously. I know going for the surgery seems extreme, but to be frank I, like Pluot, am sick and tired of being sick and tired. I've dealt with this over half my life and I am just tired. Things were really bad at diagnosis and for about 5 years and then I had a period where it was easier to handle. It's over and I feel like warmed over crap. My doctor and I already discussed fertility and he said I can expect it to go down as much as 70%. I already have polycystic ovarian which closes that gap a bit more. Fortunately due to the state of this terrible, terrible world my husband and I have decided against reproducing. Plus the way I see it if I did have a child what good am I to it on days where I am crippled up in bed questioning if it's worth the pain of getting up to pee? about the bag, I have been conditioning myself to the idea for quite some time and it seems better than living a life where carrying underwear and diaper wipes in my purse in case I have bad seepage, the blood leaks, or I just crap my pants. I seems better than pain. It just seems better than this thing hanging out in my abdomen trying it's best to make my life hell. As far as the death aspect, hell yeah it scares me. If I'm dead my husband has NO ONE. You try hearing the man you love cry many, many times about how you are the only person who ever actually loved him and not being scared of taking that from him. I am scared of dying at any time and being away from him, but somehow my chances of dying feel slimmer chilling out at the house than with someone wrist deep in my guts. Call me crazy, but they just do. Thanks for the answers, guys. Special thanks to Pluot, Christine, and PathogenKiller. I My apologies for the seemingly ruffled feathers.
Posted 2/17/2013 2:46 AM (GMT 0)
Your statement about raising a child while sick is spot on. That's the way I was with my son, which is why i had surgery. about your questions.

1. everyone has pretty much answered that. Steroid usage can also be a factor in how long you have to wait between surgeries and if you have to have 2 or 3 steps. Basically, the worse health you are in when you have surgery the harder it's going to be.

2. its not going to change your life expectancy, if anything it would lengthen it, no more dangerous drugs and sickness. But, I am a Mom, and I can tell you that no matter what you tell your mom she's still gonna freak out. That's what Moms do, we worry about our kids. :D

3. I have no idea.

4. My husband was glad, he's a nurse so the medical part was easy for him. And he is just glad I can do stuff, he doesn't mind the bag at all. Because of it we can go out to eat and on vacations, we just got back from a cruise today. Lots of things we couldn't do before. As for the dying part, I don't think you prepare someone for that, I think we just all have to come to terms with that. One day we will all die, death and taxes are the only things that are certain. And again, no matter what you tell him, he's going to worry he's your husband he loves you. He probably worries when you go to the store, or when you are in a horrible flare.

5. Surgery is rough, the recovery is hard. But i would do it again, i would have done it sooner if i had known

6. If being baptized makes you feel better then you should do it. Sometimes letting our problems be in the hands of a higher power is easier and helps us cope. And if that's how someone copes then that's understandable and there is nothing wrong with that. Not everyone believes that, but it doesn't matter what I believe, or what anyone else does, it's only important what helps YOU be more comfortable with your life and decision.
Posted 2/17/2013 3:06 AM (GMT 0)
It is going to be okay. No matter what you decide you and your family are the ones who have to live with it. Get all the info you can. I think you ask some great questions. My doctor has told me that due to the fact I was diagnosed at 24 it is highly likely at some point I will have to have surgery as well. I am terrified. I appreciate your questions because they have given me new things to think about when we get to that point.
Posted 2/17/2013 4:23 AM (GMT 0)
Thanks for the answer SummerStorm. It's nice to know someone feels the same way I do and understands the decision. I don't want to leave kids in a situation with no mother. I could praise my husband to bits for hours, but he isn't a mother. I am hoping after surgery I can have a better life and get my butt to college and get a decent job. I dropped out and got my GED at 17 because I was out sick so much that I was never getting out because I was failing on absences. After that I think adoption fits my situation best. I just want to be able to feel better and get on with my life.

Sherrie,
You can prep yourself for it as much as you can, but when it comes down to the wire you panic a little. Educate yourself on the things you can stand to know without making yourself too upset. Not a word more. Worry, at least for me, REALLY exacerbates the problem. I started reading when I first was diagnosed so I could be prepared for as much as possible, but there is a shock in the situation when you get down to the wire. I have been watching youtube videos of how to change your bag and healing and things so I am not in as much shock when I see "the bag." I am a private person and I abhor pity so I usually don't talk to people about my problems. Most of my family doesn't even know that I am considering surgery because they never know the state of things. I am finding it helps to talk to the people you KNOW have your best interest in mind. My husband knows, my mom knows, and a friend I have had almost 20 years and her family know. I feel safe asking questions on here because it's full of strangers and while I really do appreciate the answers and advise if people make me angry I don't have to deal with it. (Borderline personality disorder... I am really good at being angry mad , lol.) I hope you have a long time to keep your butt pipe (as we call it at my house for humor.) It seems the later you get it the better so you have a leg up on me. I am working on my mental checklist of pros and cons and the pros just seem to outweigh the cons. I know pouch failure is a real risk, but when things are really bad pooping in a bag doesn't seem so bad. It just takes more effort to rouse your courage some days...
Posted 2/17/2013 12:07 PM (GMT 0)
Hi kittiesgomeow,

I have read through these posts and some great advice and info has been given. I think anyone facing surgery no matter what kind thinks about dying on the operating table. I know I sure thought about that. But the odds of that happening this day in age are so rare. I'm Christian and I totally understand where you are coming from about being baptized. If it would ease your mind, I would definately follow through with that.

I had j pouch surgery 2.5 years ago and it's been a God send. I did the whole list of pros and cons prior to surgery and the pros absolutely outweigh the cons for me. It's a tough surgery(s) I won't sugar coat it, but the end result has been so worth it.

Best of luck with whatever you decide to do. :)
Posted 2/18/2013 2:18 AM (GMT 0)
Thank you for sharing your story, ByeByeUC. I love the name by the way. I am feeling more optimistic. Can I ask you a kind of weird question that I'm sure everyone wonders? What does it feel like when your colon isn't there anymore? Like can you feel the absence of the actual organ in there?
Posted 2/18/2013 3:35 AM (GMT 0)
You can't feel that it's not there. I thought it would feel weird, like there was too much room in my stomach or something. But it's not noticeable. What you will hear almost all post surgery people say is that when we woke up from surgery we could feel that the UC was gone. It was almost like a clean feeling. I can't really describe it, just that I could tell, right away, that the disease was gone.
Posted 2/18/2013 4:09 AM (GMT 0)
That sounds marvelous. I figured you would feel it; it's like 5ft long afterall. I guess since the skin and what not are just sort of hanging out on the surface and not a magical floaty orb that makes sense though.
Posted 2/18/2013 11:40 AM (GMT 0)
If lots of people (or even a few) had died during ostomy surgery, I'm sure we'd hear about it and it would make the list of objections people have to having ostomy surgery. I've been in the ostomy internet world for over 15 years and have yet to hear of anyone dieing during the surgery (and believe me, we would have heard if it happened). The fact that we haven't, and it hasn't, means that the probability is extremely miniscule (although of course, you can't say 'never' as there's a risk in ANY surgery) so please, try and set your mind at rest in that regard.

I've had my ileostomy for 36 years and never ever regretted it. I LOVE my ileostomy - it gave me my life back.

I know of a lady who has had hers for 60 years - it certainly hasn't shortened her life.

The Queen Mum had her colostomy for over 50 years and lived to be 100 :)
Posted 2/18/2013 12:16 PM (GMT 0)

KittiesGoMeow1988 said...
Thank you for sharing your story, ByeByeUC. I love the name by the way. I am feeling more optimistic. Can I ask you a kind of weird question that I'm sure everyone wonders? What does it feel like when your colon isn't there anymore? Like can you feel the absence of the actual organ in there?

It doesn't feel any different than when it was there expect of course I had no more pain!! :) I will say this though: in the absence of my colon, my small intestine must have "shifted" inside so even though I am thin, I kind of have a little lop sided pot belly thing going on. It looks pretty ridiculous but its not noticeable with my clothing on. My bikini days are over though, lol. I don't know what else it could be. My stomach was perfectly flat before surgery. I have seen pics of other j pouchers and folks with ostomies and they still have their nice tummy so I don't know what happened to me. All in all, not a big deal. :)
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