Losing

[Jaano711]

Just sent weekend in hospital having abcess and fistula surgeries. Apparently butt completely knackered and has to go. My worst fear. Been fighting this disease for 20 years with out remission, but have never let it stop me from doing things I want to do.

Feeling like I have lost that battle now. Have to go in for permanent colostomy in the coming weeks. Feel like this can't be happening. Have been very brave and strong up until now. Have spent the whole weekend bawling. Can't look at my husband or kids (3 of them under 10). I don't want them to see how sad nd scarred I am cause they don't deserve to go through this all again.

I just want to run away and leave this all behind. I have never been a depressed person before. I am really not dealing with this very well at all.


Will the stoma freak my kids out, how will my husband ever find me attractive again, will we ever have sex again or will it just completely revolt him.

Help. I am soo scared.

 

[robbo87]

Sorry to hear you are having problems It's perfectly natural to feel scared and anxious but this will make things better for you! Having a colostomy certainly doesn't mean you have lost a battle. I'm sure your children and husband will adjust just as you will have to.

 

[stickman7755]

Hey, I have been there. Last fall I thought just as you do. You are gonna be just fine
! I know it sucks now, but everything will be ok. Just take things one step at a time. I hope all goes well. Good luck!!

 

[DMac]

Hi and welcome

It is perfectly natural to feel the way you do. Having a permanent stoma seems so final, but speaking as one who has a permanent stoma, and battled with all the same concerns and worries you do (although, admittedly I was in my mid 20's and a previously very healthy, athletic male) I was convinced my life with the ladies was over.

As with many things, it took some time and a lot of encouragement/assistance to help get me through some difficult times, but I can hand on heart tell you, that having this permanent stoma has dramatically changed my life for the better. I have no more Crohn's disease, I am able to eat what and when I like and I have a fantastic quality of life. I speak as one who has had numerous ops, issues and complications as a result of Crohn's.

I can confidently tell you that your husband and children will not look at you in any different way, and that you will look back on your initial fears and concerns as things that have strengthened your resolve. It does get both easier and better as time goes on and you will get into a routine, in re to your stoma, and will go on and enjoy life.

All the best

 

[Terriernut]

My heart goes out to you, and I can certainly understand your fears. Very much so in fact.

You will have alot of adjustments to make yes. But the adjustments you think you will have to make, will probably not be the ones you are actually worried about. As for your kids being frightened....no. They are probably more frightened because you've been ill for so long. Once you've recovered from the operation and are busy and in full health, they will probably feel much more secure. And stomas are hilarious...trust me, Stan has his own fan club with my grand kids.

As for being attractive...well. If you have a nose around this stoma subforum, you will see some GORGEOUS young ladies who are certainly not having any problem in the relationship area whatsoever. I would bet you wont either.

The worst bit about stomas, is actually the FEAR of having one. Once you have one, and make adjustments to it you have your health and life back. We have ostomates that sky dive for heavens sake! (Rygon) We go to mosh pits. Some drunkenly change their bags on a train. (that was not me by the way) But, we dont stop living...we so seriously get on with it and have fun. Sometimes for the first time in years, because finally...WE CAN!

It is a serious op though. And recovery can take some time. About 3 months actually to feel like a normal human. Shorter if you go in with better health, shorter still if they can possibly do it laproscopically? Do you know yet if it will be open surgery or lapro?

Please give yourself the time to process this sudden turn of events, and dont feel bad about being angry and depressed. It's almost like grief that you can go through with this. Look up the 7 stages of grieving, and you will understand. And you will probably go through this. It's normal. And its normal to have some bumps in the road occasionally.

Please, take good care of yourself, and let us know how you are getting on?
:hug:

 

[bigtruck]

Is a loop colostomy to let the butt rest an option? It would also mean the anus and rectum wouldn't have to be removed just at the min. I've had a loop colostomy from feb as perianal disease is my biggest problem.

 

[2thFairy]

I think that your husband and kids will react to your stoma based on your own feelings about it and how you present it to them. When my doctor first suggested surgery to me, I didn't even tell my husband about it for almost 2 months...and that's the first time I have ever withheld medical information. However, once we started talking about it, a little bit at a time, we both became more comfortable with the idea that it needed to happen. By the time the surgery day came around, we were laughing about it and already had a ton of jokes established.

I found that by having him directly involved with everything starting with the first bag change in the hospital seemd to make a HUGE difference to both of us. It was awkward, but because we were both experiencing the new stoma at the same time, we both got comfortable with the idea that it existed fairly quickly.

If you present it to your kids as a really neat medical experiment sort of thing, I bet they will either be fascinated and want to help or just forgot you even have it. Peristalsis is really cool to watch...I bet they will get a kick out of it!

 

[sammies]

Glad you reached out here. You questions and fears are normal and valid. I suggest you go to www.australianostomy.com to visit the ostomy organization like the US United Osotomy Association---there is terrific info at this site including a link for those facing such surgery. Form this site or from you doc's office, you might find an ostomy or crohn's support group in your area. Mine ostomy support group has been such a saving grace Also, will your doctor or surgeon send you to a stoma nurse ahead of time? I don't know how old your children are but there are some great resources on that site for telling children.

My experience was 24 years of disease that never went into remission. Then, the disease got incredibly aggressive with strictures, fistulas, and perforation. I have a permanent ileostomy and am now at 28 years with Crohns.

My husband of 16 years now was so relieved that I was no longer pooing in the shower, in such massive pain, and so weak. The pouch has never bothered him, in fact he's much more apt to approach for relations bc he knows I'm not in pain.

Keep asking questions and keep us updated.

 

[Crohn'sGirl]

Trust me I was nervous at first too. I did as much research as possible in a week to prepare myself as much as I could. I just wrote a thread about my experience, check it out. Also you can check out ostomysecrets.com for wraps that cover your ostomy during intimate moments. That was a concern of mine. For everyday wear I bought silky high cut panties that I wear over my regular panties that keep the bag close to my body so no one even notices.

 

[Susan2]

I'm so sorry that you are feeling like this, but it's quite understandable when faced with such a big happening in your life. I, too, used to cry whenever I thought about needing a stoma - I couldn't even talk to the ostomy nurse without bursting into tears. But now I've had a stoma for 13 years!! And it's made a radical difference to my life.

Your husband will probably be so pleased that you are free from the pain and other problems that you have been having that he will welcome your stoma. There are lots of practical, and even sexy, products available to cover up your bag if you need or just want to. This list is from 2thFairy:

http://vblush.com/index.php?route=common/home
http://www.pouchpals.com/ostomy.htm
http://www.ostomysecrets.com/
http://www.whiterosecollection.com/index.html

Thanks 2thFairy :thumleft:

The way that your children cope with it will probably depend a lot on how you tell them and how you deal with it yourself. There are plenty of people on here who will be able to give you advice from their experiences with their own children - most of them have very positive stories to tell.

Hang in there and please come back to ask any questions that you might have or just to get support. :hug:

 

[Nyx]

I don't have much to add beyond what others here have said. My kids think Oscar is hilarious and are always asking me to make him fart...lol I just told them that I was really sick and that when I got out of the hospital I came home with a bummy on my tummy. You don't need to go into great detail with them, just that you now go poo differently than they do. My kids were 10 and 4 at the time of my operation and they dealt just fine with it. I can't speak to preparing them for your op, as mine was an emergency surgery so wasn't planned at all. They just say that I'm much more fun now and that I'm getting fat...lol

Good luck with your surgery, hopefully it will bring you the relief and good health that we all want.