HealingWell
Search Close Search
☰

SCARED- TALK ABOUT FINALLY REMOVING COLON

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/7/2013 6:14 PM (GMT 0)
 

    Hi Everyone,

  

    I was on Imuran for 6 yrs and Remicade for 2 1/2 had to stop both back in August due to a cavity that developed on my lung. Most likely caused by the Remicade With both Immune and the Remicade suppressants combined together was to much for my body to handle. I also have a few spots on my liver now.

    It hasn't been an easy 4 months being off all medications. I've flared off and on. I've been so scared. I've had UC 26 YRS I was 16 when first diagnosed.

    Saw my GI last week he is the top GI in my area so I know I've been in the best of hand for the last 20 yrs that hes been my GI.

    He took my hand and said Donna it is time to talk about surgery. I just sobbed and cried. I was so upset. I know it would have to be discussed at some point but to hear it is different. Because cancer rate goes up extremely high after 20 yrs.

    Surgery scares me so much. There isn't always a good outcome with Colon removal. We talked well he talked mostly. I will see him in Feb to talk more at that time and pray I don't flare up extremely bad. If I do I'm to call him right away.  

   My lung doctor and my GI are in contact with my conditions.

   I can't stop thinking about surgery and the aftermath of what I'd have to deal with after. Its a lifestyle change. I already don't work due to have UC. I have anxiety and depression and on meds for it. I'm afraid this will cripple me after surgery and I will be afraid to go out in public with leakage and all.

 

I apologize for the long message. Advice to help me stay calm will be greatly appreciated.

 

Posted 11/7/2013 6:43 PM (GMT 0)
You're in an extremely tough place regarding weighing your options and finding one that will have less risks over the long-run.

I'm not understanding what a cavity in your lung is meaning....would you mind to clarify that for me?

In truth....I'd prefer surgery, long before the meds you've already tried..,.but that's me. It's not the majority who've had surgery.

I read very few who've regretted having it. Yes, some have had complications and required more surgeries and recuperation time, but they've healed and moved forward to function without UC, the meds and ill health.

You should seek out information on the ostomies forum as well. Remember that not all have UC on there, so complications will vary as will healing, etc.

You've already been through an extremely rough time...and while your fears are totally understandable and normal...your functioning now seems to be more crippled than you would be after surgery.

Seek answers, ask more questions and prepare yourself for the process. You will have tons of support from HW, both here and on the ostomies. Try not to believe that you'll have a worst case scenario....there are many possibilities before that one.

Hang tough....remember the strength you've got and believe that while it's normal to be scared...through information seeking, you'll be better prepared emotionally going through the process than you will be when forced out on a tightrope with no supports available to draw from.

Huge hug your way!

q

Posted 11/7/2013 6:54 PM (GMT 0)
There are always going to be horror stories involving any kind of surgery. They do all kinds of heart "surgeries" and horror stories abound. But, the fact is, most all heart surgeries go without a hitch. Ditto all other kinds of surgeries. It is a very small percentage of colon surgeries that have bad outcomes. The Jpouch surgeries have more "complications" than the total surgery but the word complications only means complications, not bad outcomes. I have seen many people come on this site and almost all had one major complaint about the surgery - that they wished they had done it sooner and not fought it for so long, getting damaged by all the bad drugs they had been taking all of those years and that the surgery had finally given them their lives back. Have you done any probiotics, supplements, or dietary changes? Some of these can and do work. There are also many other options becoming available over the next few years. Uceris is already on the market. What other kind of meds have you done before the Remi and Imuran? What is your current status/symptoms? You may very well find that in the end you will joining the large chorus of people who kick themselves for not having done the surgery much sooner.
Posted 11/7/2013 7:05 PM (GMT 0)
It just occurs to me that of the people whose posts I read, 90% of those who have had colectomy seem to feel happier with their lives than you do right now. Perhaps you don't have as much to lose as you're thinking?

I'm assuming the cavity in your lung is either TB or histoplasmosis, in which case immunosuppressives are not in your future. Apparently the 5-ASA's haven't provided you with quality of life. It's very hard to be brave when we're so sick, but sometimes life just doesn't give us a choice. Remember that everyone here is behind you and ready to provide you with support.
Posted 11/7/2013 9:48 PM (GMT 0)
I know how scary facing surgery is first hand. I lived it. I tried everything there was first but ultimately my colon was so far gone it had to go.

I just wanted to say that as horrifying as it seems now, it can be a blessing in disguise. I have my life back now and I'm done with UC forever. And no more of those nasty drugs! There is light at the end of the tunnel if you have to do this. It's tough, but the end result is so worth it. I'm sorry you are feeling so upset but it really does sound from what you have been through that it's time. All the best to you.
Posted 11/7/2013 9:54 PM (GMT 0)
Count me as one of those who would rather die than have surgery; when it came to call my bluff, I opted for surgery. That was 12 years ago. I have been grateful every day since; life post surgery has been fantastic. No regrets. I do know how difficult it is to hear the news and then make the decision. But there really is nothing better than having your health. Really.

Sue
Posted 11/7/2013 11:41 PM (GMT 0)
I had my colon removed and chose to get an end ileostomy instead of a J Pouch. It has been almost 8 months since my surgery, and I have not questioned or regretted my decision once, in any way. I have felt great and haven't been limited one bit by my ileostomy. I was MUCH more worried about going out in public and to work with UC. Would I find a bathroom if I needed it, would I crap my pants, could people tell I was wearing a diaper?? No worries now!! I know it's a huge thing to be faced with, and I hope you are able to make a decision that makes you happy and healthy!
Posted 11/8/2013 12:34 AM (GMT 0)
I had my colon removed 8 days ago, I woke up the next day and I was so happy that I didn't have to run to the bathroom.... My body just felt so much healthier and for that I am very happy. The Monster "my colon that was making me sick" is gone.

The surgery went much better than I expected, the pain has been well controlled and no complications so far. I stayed in the hospital 5 days after the 1st surgery.

I am really tired but that is to be expected and occasionally I have some pain but it's really not that bad (maybe a 2 or 3); it's never been higher than that.

I was sitting in my hospital bed on Saturday making plans for the Month of November and what I wanted to do; I would never of even dreamed of doing that with a flare and while I still had my Colon. One of my goals is to eat whatever I want for Thanksgiving.

It's not an easy surgery (I'm living it right now) but it definitely gets blown out of proportion and complications overstated. My colon was in such bad shape that they started the surgery laproscopically but couldn't remove my colon without cutting me open; I have 27 staples. The surgeon was so good that I really don't have any pain from the incision.

My only real advice is to talk to people who have had surgery so you really know what to expect and to find the best surgeon that you can.
Posted 11/8/2013 12:46 AM (GMT 0)
I just wanted to add that if you decide to have surgery while you are healthy and not flaring (and on certain meds) then you might be able to have the surgery in 2 steps and not 3 steps (like me).

I'm looking at 6+ months with the 3-step, maybe you could do it in about 3 months with a 2-step surgery if you needed to have surgery.

I expect to be back and fully recovered for the Summer.
Posted 11/8/2013 3:20 AM (GMT 0)
I'm sorry to hear of your struggles. The thing with surgery is that when it becomes the best choice, we're in our worst state of health. So you are faced with something that will change your life, and are having a hard time dealing with things as they are, let alone a serious surgery.

I haven't had surgery yet, as Remicade is working right now. However, I have woken up in pain almost every day for the last fifteen months. I've had extensive lab testing, and yet we don't have any leads really. They assume Remicade, or sickness caused by immune suppression is causing the pains, and have told me to just wait them out. The pains sapp my energy and decrease my productive work hours. There is in my mind something to be said for eliminating even this much struggle from my daily life by getting surgery.

Imagine not having UC anymore. At all. No medicines... many less doctor's appointments...no awful piercing pain from ulcerations... no fatigue... no urgency. Just the mental relief alone would be worth it.

I have a grandfather who is 75, and has been in the hospital for most of the last month plus. He is widowed now, and has been having heart problems. He had two heart attacks in September, followed by a triple bypass which turned out to be unnecessary because his problem is the veins/arteries getting inflamed and closing. He has had at least three operations lately where he was told he could very easily die. My point with this is that he is the most humble and optimistic person I know. He tells me "Sometimes in life you don't get choices. I didn't want grandma to die, but I didn't have a choice. I didn't want to lose vision in one of my eyes, but I didn't have a choice. I didn't want to lose part of my heart, but I still have enough to take care of the yard, go for short walks, and wash the car... and that's all I need. Sometimes what we want doesn't happen... but I still want to live. Life is still good."

I've been struggling with life changes personally lately, and have been very depressed at times. My sister knew I was depressed last night, and gave me a call. She has battled depression a lot in her life, and she told me "Sometimes life isn't fun or good. I've made big changes in my life that were extremely tension filled. But, even if life isn't fun or good always... I can promise you that it's worth it". She gave it to me straight, and I think it was fitting. For myself, just spending time with my fiance and getting a chance to relax are all I want right now.

I hope you can find a few moments of calm, and the strength to see yourself through to a new, better life.

Best regards,
T
Posted 11/8/2013 4:37 AM (GMT 0)
hi everyone, wow, hearing all your stories made me cry in good way and not so happy way.
i'm so sorry for all your personal life challenges Thoreau I lost my grandmother a year ago this coming sunday nov 10th. this past year has been honestly not a good one for my family for many different reason and that makes my UC not happy. Even though I was on the remicade and Imuran it doesn't cure everything going on in your life. I was depressed and sad and still am a bit. i'm wishing you the best with your grandfather. I have a sister as well dealing with a lot of the same things.
the cavity on my lung isn't from TB I was tested for everything you can think of I was in the hospital for 3 days 2 night for all sorts of tests. the result is the Imuran and remicade basically eat at me. the cavity is an inch size hole like a donut. since being off the Imuran and remi its thinned out quite a bit. GOOD NEWS.. still have a bit of a time with a pulling feeling in my lung from time to time but oh my gosh compaired to what I went thru in aug-sept with the breathing problems and pain im much better.
you've all giving me such hope with surgery. my gi wants the pouch inside not like a jpouch. so I guess that's even better news. it would do it in 2 steps he said. we will talk more in the coming months.
I had major heart surgery when I was a month old. no I cant remember it but I almost lost my life 2 times during surgery and I think that is why I'm scared. I know heart surgery is very different but i'm just nervous. I know its the best for me to have it. wearing depends I guess isn't as bad as dealing with accidents and worrying where a bathroom is everywhere you go right?
thank you all so much for all your personal experiences. I greatly appreciate so much.
stay well
Posted 11/8/2013 4:41 AM (GMT 0)
on a funnier note about surgery did anyone lose weight due to not having a colon anymore. I could stand to lose a few pounds after being on so many meds my whole life. :-)
Posted 11/8/2013 10:40 AM (GMT 0)
Colon removal is not an FDA approved diet recommendation! ;-)
Posted 11/8/2013 11:48 AM (GMT 0)

JOVIGIRL71 said...
on a funnier note about surgery did anyone lose weight due to not having a colon anymore. I could stand to lose a few pounds after being on so many meds my whole life. :-)

lol, well I lost weight during the surgeries and recovery but as soon as I was healed I was eating like a normal person again and gained it back. So now I excercise everyday and try go eat well. I keep my weight where it should be that way. So no, having no colon doesn't equal weight loss. All your calories and nutrients are absorbed in the small intestines. :)
Posted 11/8/2013 3:51 PM (GMT 0)
Surpisingly your colon only weighs almost nothingn when empty. I thought I would lose like 10 pounds just because I had no colon,lol. I did lose some weight because of not eating for a while during surgery.
Now I'm fat cause I can eat anything I want,lol.
I chose a bag, not a jpouch I just didn't want to mess with extra surgeries. I had adhesions about 2 years ago and had to have another surgery. I told my dr that I had had 5 years disease free with a good life and if an extra surgery was what I had to have then whatever it was worth it.
The surgery isn't fun, the recovery is hard and slow. It is a huge learning curve, even if you don't have a permanent bag you will have one between surgeries, and it make take a bit to get used to.
But it is all worth it to have no more meds, no rushing to the bathroom no skipping out on a favorite food or missing a concert or a trip. I have seen my GI once in almost 7 years and that was for something unrelated and I have seen my surgeon once other than the surgeries and recovery appointments. Some people have bad outcomes, most of those people are emergency surgeries or don't have good placements. A lot of the people with ongoing problems on the ostomy board have crohns.
Good luck!
✚ New Topic ✚ Reply