Please Help - When did you finally say enough was enough...

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Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 3/31/2009 3:51 PM (GMT -6)   
and have the surgery? I'm facing a total colectomy because of Crohn's Colitis. I was dx 3 1/2 years ago. I'm 26 and haven't been back to work in a week since my ER visit #2 in 6 days.

I just don't know when to say enough is enough. Biologics are scarying the crap out of me anymore..


I'm copying this from the Crohn's forum..
I'm in such a hard spot. My surgeon is NOT pushing me, but only giving me a professional opinion. I'm frankly scared to death of BOTH options...

First, I can try Tsyabri, if no improvement in 3 months...it's definitely surgery. Once I'm in remission, I can get pregnant on Tsyabri, according to my GI.

Second, I can do surgery now. Live permanently with an ostomy bag, but likely be in remission for years to come. My surgeon's words to me today "I think you need to think long and hard about having the surgery." I'm so stuck. I haven't been back to work in a week. I'm on constant narcotics. Yes, I'm only have 1-2, and sometimes 4-5 bowel movements a day, but with all that narcotic.. who wouldn't?!?!?!?!!?! But, then there are days where I feel somewhat fine (again, WITH narcotic) and wonder why I'm even THINKING of surgery. And, one draw-back.. I'd likely have to wait a year before conceiving...but there are the benefits that my daughter would be older and *more* helpful as well.

I'm so lost.. I've cried many of tears over this decision. And, my Tsyabri paperwork has been delayed for the THIRD time now.. which makes me wonder if it's not God's way of telling me to just have the surgery and be done with it!!

I KNOW it's MY decision...but just like when I made the decision to have fetal surgery on my other daughter.. I do NOT want to make this decision.... I'm scared that maybe there isn't much wrong..and I'm just making this up and that they would do surgery and find that it wasn't that bad..

THe surgery is a total colectomy...per the GI AND the surgeon..

I'm scared of both decisions.. I just don't know what to do anymore. I already had to sign the Tsyabri paperwork which is enough to make you go "hmm" after you sign over waivers for a drug!! Heck, Remicade and Humira never required that!!

Please help! PLEASE!
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira. Onto Tsyabri. If I fail that, total colectomy.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 20 months old


lentil
Regular Member


Date Joined Jan 2009
Total Posts : 29
   Posted 3/31/2009 4:49 PM (GMT -6)   
Honestly, I would get the surgery. Life on drugs is not fun and not worth it. The ostomy is not as bad as people think, I enjoy being healthy and happy with the bag rather than sick and on drugs without the bag. It sounds like you have been through a lot in the past couple of years so I can understand why this could be overwhelming for you, but that is just my opinion for your best well being!

Good luck and keep us posted on what you decide. :)


P.S. I'm 25 (almost 26), mother to a one year old and I wouldn't change anything that has happened to me. This ileostomy saved my life and made me be a better Mother and Wife and I actually feel GOOD health wise for the first time in years. It's nice! :) By the way, I also had Crohn's Colitis.

Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 3/31/2009 5:20 PM (GMT -6)   
Lentil - Thank you! Can you tell me more in detail.. or you can email me too (kc6313@aol.com). When did you have your surgery and how long was your recovery? Easter is coming up and if I make this decision...I'm likely either going to have it right before or right after Easter based on the situation...
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira. Onto Tsyabri. If I fail that, total colectomy.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 20 months old


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 3/31/2009 6:06 PM (GMT -6)   
Kaycie-
I had UC for 3yrs. and nothing worked. I tried all of the options that were available for ulcerative colitis. WHen did I finally agree with the three doctors and surgeon? When I was hospitalized and so dehydrated that I my blood pressure was 80/40 and my heart beat was 130. When I was literally unable to get out of bed- I was dizzy and going to the bathroom 10-15 times and had blood everytime.
I couldn't work and barely take care of my kids.

But I waited and tried Asacol, Lialda, Colazal, Remicade, 6MP, Prednisone

I had surgery March 13th- total colectomy. Because I waited I will not have to have a total of three surgeries instead of two.

I have a ileostomy and getting used to it. Still in some surgical pain and stoma pain but at least my UC is gone and I will heal before I have to have surgery again in June where the surgeon will create my jpouch.

Well, that is my story in a nutshell.

When I could no longer function- couldn't work, couldn't go anywhere without fear of pooping in my pants, couldn't play with my kids, and felt horrible all of the time.


Something that helped was to make a pro/con list----


Do you have the option of a jpouch?

I truly wish you the very best.
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone from 40 mg


Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps


lentil
Regular Member


Date Joined Jan 2009
Total Posts : 29
   Posted 3/31/2009 6:07 PM (GMT -6)   
I'll email you! :)

Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 3/31/2009 7:18 PM (GMT -6)   
Jackie - That's where I'm at. I haven't been hospitalized, but the ER d/c'd me with dialudid... I've made 2 ER trips in 6 days. I'm falling and fast. I can't play with my daughter.. I can't keep up with housework. I can't work. I'm just ready. I'm struggling, but I'm ready.

No option of a j-pouch, at least I'm pretty sure not. I'm pretty sure my surgeon said no.. I have to set up a pre-surgery meeting... that's the next step.
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira. Onto Tsyabri. If I fail that, total colectomy.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 20 months old


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 3/31/2009 7:24 PM (GMT -6)   
Enough was enough for me when every medicine available failed, including Remicade, and I started developing fistulas and painful abscesses.  sad  I was very scared to have my colon removed, so the surgeon gave me a temporary ileostomy to see if my colon would heal.
 
After 8 months of bypassing the colon, I started bleeding from the rectum, so that's when I knew it was time to have it removed. I remember thinking, "What am I holding onto here? A diseased colon? WHY?!?" Plus, I couldn't believe that I actually LIKED having an ostomy!  blush
 
Having an ostomy gave me a freedom that I hadn't had during the 7 years I was sick with Crohn's. I didn't have to be near a bathroom anymore, I didn't have any pain, I didn't have to take any medicine, I could eat foods that I couldn't eat before, I had energy and could sleep through the night, the list goes on and on!
 
My husband was so happy that I was healthy again, and he didn't even notice the ostomy, which helped me accept it quickly. Our sex life also improved dramatically, because when I was sick, I didn't feel sexy, but now that I'm healthy, I do. smilewinkgrin
 
I've been disease-free and medicine-free since surgery and rarely see doctors anymore. It was the best thing I've ever done, because it gave me my life back. I wish good health for everyone suffering from IBD. Some people achieve remission with diet, others with medicine, but some of us can only achieve it through surgery, and thank God, it's possible to live a very healthy and happy life without a colon. wink
Good luck with your decision, and please feel free to ask us any questions about anything. We're here for you! smurf
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.


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 3/31/2009 7:46 PM (GMT -6)   
kaycie-
Sounds like you are ready.. And the bag isn't so bad even though I am still getting used to it -- it has its advantages. Nothing is as sweet as feeling healthy and sharing that with your family.
:)))
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone from 40 mg


Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 3/31/2009 7:48 PM (GMT -6)   

My surgeon said that the number #1 reason to have surgery is for low quality of life.  In my case I didn't even realize how much of my life was taken away from me by UC.  After 2.5 years of never being in remission and on 22+ pills per day I opted for surgery.  That wasy 8 years ago and it was the BEST health decision I have made.  No one can make this decision for you but I have not met one person who has regretted surgery for IBD.

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 3/31/2009 7:50 PM (GMT -6)   
Kaycie-First i'm sorry that you have to even face this decision. Second-Have surgery! It will be over and you will get your life back! No more wondering whether this med will work or how long it will work or what it will do to your body in the long run!
My AHA moment, that made me realize i needed to get the surgery was watching my family take my son off to play on the beach and all i could do was sit in the house and miss his first time wakling on the sand. I can remeber standing in the kitchen of that rental beach house and thinking, this is it, i'm done! this thing is GOING!!!
My story, i got UC in may, 1999 (almost 10 years, wow) and wasted 8 years on meds, dangerous meds none the less, in and out of the hosptial missign work, missing life. Then I got pregnant in 2004 and while i was pregnant i was in total remission! which was awesome. then as soon as my son was born in 2005 UC came back with a vengance, and i went on other meds and blah blah. In 2006, right after i got back from that beach trip i went to teh GI and i said, take it out, he talked me into remicade, and stupid me tried it, it worked for a few months, but i ended up just wasting 6 months on that junk. So in Feb 2007 i went back and i said to him (i relally said this) "either you get me someone to take it out, or i will take it out" I had found myself, before i made the decsion wishing i would get toxic megacolon so i wouldnt have to make the decsion myself.
So anyway went to a surgeon and on april 17th 2007 i got my life BACK!!!
Surgery is NOT fun, its tough, BUT that pain and recovery only lasts a few months, compared to the life long pain from the disease.
I know you are worried about waiting to have another kid, but it would be so much better to have the surgery first, then no meds while pregnant and you will be healthy whne the new baby comes along too!
Good luck in whatever you decide and we will answer any quesitons you have!

Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 3/31/2009 8:07 PM (GMT -6)   
I can't thank you all ENOUGH for all the wonderful messages. My inner soul is saying "DO IT!" but, I'm scared! Scared of all of it. I've talked at length with my husband and my parents.. and we're doing it. I have to call the docs and leave messages tonight and then we'll go from there.

Much to do in the mean-time. Thank you and any other words of encouragement would be awesome... because i'm not 100% on the surgery, but I'm at 95+%
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira. Onto Tsyabri. If I fail that, total colectomy.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 20 months old


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/31/2009 10:09 PM (GMT -6)   
it is so normal to be scared, you would be crazy if you weren't! And i assure you that you will probably talk yourself out of it at least 50 times between now and the day you have surgery, and you will probaboy come up with some of the dumbest reasons in the world to not have the surgery ( i was worried i couldnever do cartwheels again, how dumb) but just remeber all the reasons TO hae surgery and all the good things you will get out of it.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/1/2009 5:14 AM (GMT -6)   
kaycie, I just came along to give my two cents, but everyone has already done such a good job!!! Glad to hear you've made the choice, I don't think you'll regret it:)

My daughter was 6 when I had my temp ileo and 13 when I did the proctocolectomy...like flchurchlady said, why hold on to a diseased colon...I did this for her and my hubby (me too!) and life really is wonderful post surgery!

chelebel
Regular Member


Date Joined Mar 2009
Total Posts : 26
   Posted 4/1/2009 7:04 AM (GMT -6)   
Kaycie - just wanted to say I am going into hospital tomorrow for surgery on Friday for permanent ileostomy and whilst I am very nervous and scared I have a feeling of acceptance and lets just get on with this and start to recover. I found the period of time when I had to make the decision between the next lot of toxic drugs and surgery very very difficult. Even with everyone around you being supportive I felt it a very lonely time (cos only you can decide). I was glad when I did decide and I hope that in a few weeks time I will still feel like this!!!! Anyway can't give you any surgery and ileostomy experiences yet, but just wanted to say good luck with whatever you decide x
Panproctocolectomy scheduled for 3rd April.  Diagnosed Ulcerative Colitis 18 years ago.


Wade457
Regular Member


Date Joined Dec 2008
Total Posts : 91
   Posted 4/1/2009 7:18 AM (GMT -6)   
I was reborn after my surgery.

No, it's not all the same as it was before. But life has returned again to where I can be a functional person. I have a future again, which was very much in doubt prior to the surgery.

Surgery is not your first option. Don't be pressured into it. It's a life changing experience. I know I was mentally grasping at straws hoping the next drug would get rid of UC. It didn't. A friend of mine at work recommended I visit a health food store where they had things I could take. I remember having to sit down in the store while the clerk got a few vitamins and some other potions to take. Tried them.. Hell I tried EVERYTHING.. And all I got out of it was diarrhea and blood all over the place, low blood pressure, dehydration and frustration....

For over a year I had all of these drugs put away in a linen closet Last month, I took a box and started to toss them all away. At one point I was on 8 different drugs, suppositories, you nane it I was on it. I decided I needed the room in the closet for towels, not drugs I didn't need any more....

That never did any good for me anyway....

Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 4/1/2009 7:25 AM (GMT -6)   
chelebel said...
Kaycie - just wanted to say I am going into hospital tomorrow for surgery on Friday for permanent ileostomy and whilst I am very nervous and scared I have a feeling of acceptance and lets just get on with this and start to recover. I found the period of time when I had to make the decision between the next lot of toxic drugs and surgery very very difficult. Even with everyone around you being supportive I felt it a very lonely time (cos only you can decide). I was glad when I did decide and I hope that in a few weeks time I will still feel like this!!!! Anyway can't give you any surgery and ileostomy experiences yet, but just wanted to say good luck with whatever you decide x



Thank you for basically spelling out my feelings! This decision is mine and mine alone and although I have a FABULOUS support system..I still feel lonely making it. And, then, in real life people and internet people turn around and make you feel bad for not pursuing Tysabri "just in case." I'm just done with biologics and their risks. Isn't it bad enough all the general chemicals in today's world? Do I have to keep subjecting myself to cancer? I'm just D-O-N-E with all the drugs.. I can't take it anymore. I want to feel NORMAL again..and if that means removing my intestines...then so be it right now. I want to just get this surgery, drop the steroid weight, and start living life with my family..not worrying about where bathrooms are...if I'm going to be sick..if I'm going to be in pain.. etc..

I think a huge weight lifted off my chest last night once I finally made the decision...now I just wish others would quit trying to "talk me out of it."
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira. Onto Tsyabri. If I fail that, total colectomy.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 20 months old


Wade457
Regular Member


Date Joined Dec 2008
Total Posts : 91
   Posted 4/1/2009 7:52 AM (GMT -6)   
Kaycie ...

Before I had my surgery, the previous 7 or 8 years I started to think my body was starting to 'break down'.. I had been relatively normal and healthy before 2000. Had a horrible two weeks of diararrah in 2000, which repeated itself in 2002. I just thought it was something I had eaten and eventually it went away aftrer a week or so.. It was probably the first sign of UC but I wasn't aware of it then. Then i was diagnosed with type II diabetes. My weight was going up and my blood pressure started to go higher.. Then in 2007 the UC struck me with a vengence that led me to live a year of nothing but hell...

After the surgery, my weight.. which was about 240 prior to the UC in 2006.. (I'm 6' even), had gotten down to 153 at the hospital.. well it stablized at about 180-185 (where it had been for years). My blood pressure went back to normal, and although I am careful about what I eat. my blood sugar levels are about normal as well..

It seems that when I had my surgery.. the all what was breaking down went back to 'normal'.. I'm convinced the UC was the cause of those issues. and I really do "feel" much better each day..

It was the right choice for me. Only you know your body and only you can decide what to do.

Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 4/1/2009 12:28 PM (GMT -6)   
Wade - Interesting! Very interesting! I have PCOS which puts me at risk for diabetes. I ballooned to 265 and have lost 10 slowly with the help of weight watchers... but there is SO MUCH that I cannot eat! I know it'll take a while to get back to eating..but my hope is that it will put a normal spin on life to allow me to lose the weight.

I woke up in fear this morning..but eventually resolved to being fine with my decision yet again...this HAS to be the right step in the right direction.
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira. Onto Tsyabri. If I fail that, total colectomy.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 20 months old


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/1/2009 1:43 PM (GMT -6)   
Its awful that people try to give you a hard time about not wanting to take anymore drugs. I heard that some, and its usually people saying, "you are giving up" but that's not it at all, you are winning over that stupid colon!

Anytime someone tries to talk you out of it, and it will happen, you tell them your pro and con list too!
Also tell them, that the next time they get a stomach virus and are in the toilet all day, you will be in and out in two minutes! LOL!

Wade457
Regular Member


Date Joined Dec 2008
Total Posts : 91
   Posted 4/1/2009 4:21 PM (GMT -6)   
Kaycie said...
Wade - Interesting! Very interesting! I have PCOS which puts me at risk for diabetes. I ballooned to 265 and have lost 10 slowly with the help of weight watchers... but there is SO MUCH that I cannot eat! I know it'll take a while to get back to eating..but my hope is that it will put a normal spin on life to allow me to lose the weight.

I woke up in fear this morning..but eventually resolved to being fine with my decision yet again...this HAS to be the right step in the right direction.


If you do go though with the surgery.. I want to warn you of this. that when you get into post-op after the surgery. when you first wake up after the anastesia wears off. You are going to experience the worst kind of pain you can possibly imagine. This won't last long. perhaps a minute or so until the post-op nurse gets morphine into you. it will go away FAST.

You wil have a morphine pump attached to you DO NOT BE AFRAID TO USE IT. It will be there for a day or so. after that you won't need it

Tha was the worst part of the entire procedure. Most hospitals will allow one person to be with you all the way up to pre-op and the prep you wil get just before going into the OR.

BY the way.. the operating room does NOT look like the ones on TV :) You'll be helped to lay down on the table and there will be several people there .. besides your surgeon. They'll be doing things to make you comfortable and they'll talk to you .. as you'll be a bit apprhensive. After a few minutes the anastegeologist... whom you'll meet in pre-op will put you to sleep... it's fast.. and you'll be off in dreamland.. I really don't remember how long it all lasted. But I do remember waking up in post-op and the pain. which was taken care of quckly. And then you'll be wheeled back to your room..

You'll wake up with IVs.. pumps and all kinds of things still plugged in you. You'll be told to start doing breathing exercises to get your lungs to work fully again. It is like your entire body has been put to sleep and everything has to wake up.. This take a few days, and you'll be fine. Expect a liquid diet for a little while. and also soft food. Don't be in a hurry to eat steak and potatoes :) give your body a chance to recover...

Once most of the 'gear' that they put in you is taken out in a day or two. Walk around your room. Build your muscles back up. It all comes back pretty quickly. The UC is gone.. you're cured. And after a few days you'll be discharged....

The bag is another issue. You're going to have issues with it because you're not used to changing it. Yes, they teach you at the hospital. but that don't mean you really understand how to do it.. Expect to waste a lot of bags and material until you can manage to change it yourself. But you will.. learn how to do it yourself, rather than ask someone else. They might not be there if you have to change it in an emergency if it's leaking..

Remember.. it's just poop.. I have the cleanest hands in Atlanta :) LOL I'm constantly washing them..

And if you have questions. ASK ASK ASK.. don't be afraid to..

Good luck !!!
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