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I think I'm more frustrated with my husband thinking I'm overreacting over my surgeries for no reason. I have ulcerative colitis was diagnosed in 2007 it had finally been in remission for a good 5 years or so I thought any who I got scared that I was feeling so freaking awesome because I was finally gaining weight I was able to eat whatever I wanted again and the best part was not living in the damn bathroom and being able to go out and have fun with my kids (have 6 hubby is great with them other wise we wouldn't have so many lol) well the the feeling good scared me so much that I made a follow up appointment with my GI whom I love convinced him to do another colonoscopy just to be sure everything was fine because I didn't want any surprises he agreed to do it and low and behold he found a giant polyp that he didn't feel comfortable removing, he did 13 biopsies ( half the alphabet) of course the results came back stating that they couldn't exclude cancer because he was unable to get a deep enough sample. He immediately had me meet with the surgeon who recommended doing the two surgeries first one is removing the whole colon and rectum and giving me a temp bag then two months later doing a j pouch. I felt like the wind got knocked out of me when it was explained. Here I thought everything was great when it wasn't. My husband thinks I'm crazy trying to research and gather info on my surgeries and I can't seem to get him to understand that I need to know what's being done to me he doesn't get how terrafying all of this is. I understand that nothing I read is going to change what needs to be done but I'm having a hard time pretending it's not a big deal and walking around smiling like it's going to be a walk on the park when in reality I will never be the same my marriage will never be the same my family will not be the same nothing will ever be the same. Am I wrong for crying and being upset about this? Am I being selfish? Is because I'm a woman that I feel more emotional and Insecure about how this is going to affect our relationship? So many questions and no one close to me to vent to and help answer my questions. I'm surrounded by family yet I feel so alone because no one I know has ever had to deal with ibd. ����

Original Post

Hi BBE,

Ok, first off, I am so sorry. Yes, you should be screaming at the Gods, ranting at everyone who will (and won't) listen, crying your way through boxes of kleenex and kicking walls. But, because you are a woman, you are not doing that (and not the opposite!)...you are strong and taking positive action to understand what is going to be done to your body, your anatomy and your healthy. You are being proactive. You are taking control. 

You are right.

If you substituted the word colon for the word testicle would hubby be so calm about it if it were him? (mind you, would he be so calm about it if it were his colon???)

They do not, cannot, shall not and never will get it as long as it is not their body that is being sliced and diced. 

You are a mom and you have a summer camp full of kids at home permanently and need to feel strong and productive. In control of yourself, your sexuality and your energy. 

Firstly, yes, this is a game changer...for a while. Not forever, not for everyone. Just for the immediate future and the short term post op period up to 1yr. (yes, that is a long time but not a lifetime)...you will be dealing with all of the pre-op prep, the surgical week (pain, painkillers, exhaustion, surgery, scars, healing...) and the post op dealing with your new friend (the bag) for a short period of time...prepare for an adaptation period...have no expectations and you will not be disappointed. 

Then the reconnect and the first months with a j pouch (mine is a k pouch so I had a slightly different voyage but still complicated and fraught with the unknown and the terrifying)...the adaptation with your new plumbing...

So yes, this is a biggie. But so is cancer. So is chemo. So is dying and leaving behind a houseful of loved ones. (am I being overly dramatic here to prove a point?) 

In a perfect world you would not have a problem, a polyp or a need for this but your world just got turned upside down on its head and now the choice is yours...or maybe not...I think that the choice was made for you and that is the scariest choice of them all...being sat down and told that you do not have one.

Do not expect family and friends to understand. Do not expect hubby to grasp the enormity of this until you are waking up from general anesthetic and he realizes that he is the one running the household for the next month! (got to smile at that one!)...men react to immediate danger, women plan for it and deal with it before it arrives. (is my 'genderism' showing?)

So cry. You have to. You must, or you will not face things and heal. Crying and mourning are necessary parts of acceptance and healing. We understand that and will help as much as we can. 

Sharon

Thank you for  your response Sharon. I so desperately needed to hear that. Thank goodness for the Internet or I would have never found this site. I tried finding a support group in my county and it doesnt seem we have one. I will throw all my expectations to my recovery from both surgeries out the window because like you mentioned when we have them  is when we feel the most disappointed which is exactly what happened with me when I saw the surgeon. I prepared my self to hear that he was only going to be removing the tumor and everything will be quick and easy so when he brought me back to the real world it was way to much for me to process all at once. 

I can't do support better than Sharon -- she's a support group all in one woman! But I will add this, with regard to reading up on the surgeries and understanding what is happening -- YES, YES YES!!! I was too sick to understand much of it when it happened to me so I am still kicking myself for some of the decisions that were made early on. At least you know and you have time to plan -- that is very valuable, so of course you should use it!

Also, I can't help thinking that if I were you, I wouldn't want to loose an organ over not being able to get a confirmed diagnosis. Maybe I am missing something, but isn't there some way you can get a second opinion? Or some way you can be surer before you jump into this? Five years remission is great! What if this is just a benign growth? Where my doctor waited too long, could yours not be waiting long enough or looking hard enough?

Only you know you, your real mental and physical health, as well as your tolerance for risk and image altering surgeries. I wish you all the best and sincerely pray that you find answers or are delivered the information you need to help with this decision!

Jennifer

 

Thanks Richard :0)

Jennifer I have been considering a second opinion although deep down in my heart something tells me that as scary as this all is it needs to be done. I have a copy of my pathology report and saw that the pathologist suggested the surgery do too the appearance of the growth and how rapidly it grew :0( I actually woke up during my colonoscopy right when my doctor got to it and even though I was loopy from the meds they gave me I knew that was not a normal looking polyp. The report says it appears to be a Familial adenomatous polyp. Tmi but I attached a picture of it this is the one I saw on the screen during my colonoscopy before I fell back asleep. I didn't have any polyps 3years ago when they did my last colonoscopy the only thing I had was mild inflammation in that area :0(  image

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I am so sorry for your struggle and worries. All perfectly normal and valid. I won't try to add much to the other perfectly perfect replies. But, I can tell you, having a J pouch for 26 years now, some things are different forever but the things that really matter get in perspective fast. You'll find a lot of what you thought would be changed forever, either isn't or doesn't matter. I am not minimizing in the least. It is a process, but I promise you it gets better in ways you never imagined. I am forever grateful this surgery is possible. I would never want to go back. Make sure you stay in good support. This forum is invaluable!

Your husband should not think of you as crazy for researching this awful disease and what to do.  Good grief.  I am a spouse of a 'former' UC sufferer (he has had his j-pouch close to 21 years).  He should be very understanding.  This disease is awful.  Hang in there and the people here are fantastic and have strong shoulders.  

I have had a j pouch for just over 2 years now and I think you will find that after the normal healing time passes for the surgery, you will quickly adapt to the j pouch.  Any issues I have had to date are minor and can be controlled with medication.  I don't know of anything related to j pouch surgery that will keep you from maintaining the normal lifestyle you enjoy today. It has been a very good thing for me.

Finding you guys has been awesome. I felt extremely alone until I came across this site. It's hard to talk to people who haven't gone threw or know anyone with this hidden disease. The people around me think I'm over reacting because hey people have surgeries all the time. All I am hoping for is for it to not be cancer because that would mean more time away from my babies I have only been away from them for 2 days in their lives my youngest is 1 and I'm still breastfeeding him in the evenings when I get home from work so he will be forced to be cut off cold turkey and the other ranging from 3-13 keep asking me why everything needs to be done if I look fine. I guess I wish I would of had more time to prepare my children for this I've been in remission for so long that the oldest don't remember me having to be in the hospital getting iron infusions and blood transfusion when my UC was really out of control. I'm seeing the surgeon again this Friday to get fitted for my bag go over everything with my husband and getting a date for my first surgery. I feel blessed I found you guys because I'm sure I will need this support group even more after the surgeries. Thanks for being here :0)

BBE

I only know a little about FAP that I have learned from a friend who has it in her family, so I certainly won't pretend to be an expert. I hope you get more info moving forward so you know better if you are dealing with both diseases or what -- understandable that you are so concerned! But good to hear it looks like your doctors caught it early and are moving swiftly before it becomes an emergency.

I know it seems like this is all happening too quickly, but you are still healthy and  you do have some time to prepare. Cry a little, plan a little, pray a little (or whatever) -- just keep moving forward! If there is anything really big you've been meaning to get done, by all means prioritize what really NEEDS to be done (go easy on yourself) and just get that done. Anything that can be done by someone else should be and everything else can wait. You can DO THIS and your family can be stronger for it! 

Jennifer

Hi BBE,

I want to offer my condolences and try to be as sturdy a rock for you as possible, like all the other beautiful people on here <3 It's scary--all of it: the prospect of cancer, familial adenomatous polyposis, talking about it. But even if it doesn't seem like it, you have total control over what happens to your body from this point on.

Definitely get a second opinion. When I was diagnosed with FAP, my mom and I talked to two different surgeons, one she was familiar with and one my GI doctor recommended. We heard their plans for my surgery (the former wanted to do the one-step laparoscopic surgery and estimated it at three hours; the latter wanted to do something with a robot and a two-step procedure and estimated the first surgery at six hours). My parents and I liked both doctors but I ultimately chose the less complicated surgery, mostly because it wouldn't take as long.

If you don't have a family history of FAP and you're not really sure what's going on, I think the best thing for you is to get a second or, preferably, third opinion. Try to find a surgeon who's familiar with FAP. Having other options did wonders for my psyche. I was still scared, of course, but a large part of the fear is that lack of control. Life gets flipped and you gotta try to knock it back, even if it's just a couple degrees. 

I believe in you, BBE. You're so strong, and you have the support of all your loved ones and all of us on these forums. If you have any questions at all about FAP, I'm more than happy to answer them. Feel free to PM me! Love and hugs,

Leah

Last edited by LeahD

Just wanted to update to this post�� I had my surgery on 10/25/16 ( my hubbies bday) and it was in fact cancer at stage 1. I had a lot of complications during recovery while in the hospital but I'm glad I'm still here!! I really must have a angel watching over me because the doctor told me it was the type of cancer that spreads fast and usually when it's discovered they only have 6months to a year before their gone. I'm glad I didn't wait! I still have my ileostomy until I build some immunity and strength for the take down. My home health was awful and I was dealing with a very raw bloody skin around Davey Jones ( I named my stoma). Thank goodness for the World Wide Web I was able to come across Salts Healthcare who was awesome enough to send me samples of there pouches which were life changing for me since I could get anything to help with the leakage I was having with my pouches that I was using. It feels awesome to go from an hour of putting on a pouch just to change it again in a hour to 5-10 minutes that it takes me now with this new one. I actually feel like I did prior to my diagnosis happy and full of life, enjoying my family! Thank you all for being here for me during my scary moments. Now I'm just preparing for the take down but I'm not scared because of the great information everyone has shared on this site. ��

Hi Brenda,

 

Hang in there. I had the exact same situation as yourself. A routine endoscopy revealed high grade dysplasia. I saw 4 different specialists to see if I could just have it endoscopically resected. None of them recommended it. I hear you about the angels overhead, mine turned out to be a stage I Ca that was also showing aggressive features. Narrowly avoided chemo. I've just had my takedown and am now adjusting to using the pouch. Its been one hell of a year but I'm trying to focus on the positives! My recommendation is to take it a day at a time!

 

All the best,

 

Andrew

 

 

It has all been rough but worth it to be here with my kiddos. I'm having a hard time remembering to drink enough fluids to stay hydrated now that I have the right ostomy bags I feel like I can be just like I was prior to surgery and then I learn the hard way when my brain isn't thinking clearly and I get shaky. I'm a little nervous about doing the take down my surgeon had me do the pouchogram last month and everything looked great but I'm a little hesitant to do another surgery just 3 months from my first one. I think emotionally I'm exhausted. Just last Friday I had to do a mammogram and bone density and I was petrified I couldn't stop crying and my body froze during both test. The poor tech had to position me how ever it was she needed me to be. I know the testing doesn't hurt but it was the idea of having another test like I did with the colonoscopy and having them find something else wrong :0( 

Hi Brenda, 

Well, you are over the rainbow...on the other side...And things look and feel sweet again.

Take your time, get strong, focus on eating healthily, add some supplements and get strong.

The next surgery is a breeze compared to the last one but it will bring its own set of challenges.

Dealing with a brand new baby pouch is sometimes a walk in the park for some (you have about a 1 month learning curve where you and your pouch speak totally different languages, have no idea what it plans to do next and basically, acts like a newborn with colic)...after that you start to see patterns.

Food diaries, mood diaries, intake and output diaries (or just one that charts them all) will help you to learn what works and what doesn't...only to find out that what worked yesterday may not work today. (sound like a 6month old again?)

Do not fear, do not get discouraged. The surgery is worth it. 

Talk to your kids. Explain what is going on. Use words and expressions that they can understand...Include them in your healing process. Make them draw pictures of what they think about mommy's new friend. 

Do not fear the change, embrace it. You are a very courageous lady...I trust that you will do great.

Sharon

 

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