Might be facing membership :)

Hi


I'm from the crohn's board as some of you know And am in a similar situation as T Jane. I have fistulizing crohn's and have developed a rectovaginal fistula. For the first time since I've had CD (2 years) my GI used the word bag with me, and I just about lost it. I couldn't even look at him as he spoke to me. He had to wheel his chair over to make sure I was paying attention Anyway, I'm a ways off from having to decide on this (I HOPE!). But just the thought of it freaks me out. And I know you guys live with it every day, so thought I'd unload here.



The deal is the type of fistula I have, like T Jane, won't heal well surgically on its own so you get a temporary ileostomy. Then they hook everything back up after a few months.



I personally don't find the fistula I have to be that big of a deal right now. My GI has a different opinion. He's seen these things obviously, and knows what they can turn into. I'm just burying my head in the sand. But at least for now the plan is to try to treat it medically. I told him surgery was out of the question til the end of the summer. Even then I start grad school 9/7, I can't be laid up! Ok this is getting long so I'll get to my questions:



What made you decide to have the surgery? I'm of the stance that I better be on my death bed before they tell me I need a bag. Was this your thinking and it changed? If so what made you change your mind? How long does it take to get over the mental hump? From what I can tell that's the major difficulty in adjusting. Not that it's not painful, but mentally it's just hard. Hell it's hard now for me just thinking about it Have you had a temp and a reversal? If so what's that like?



Thanks for any advice. I hope I can stay out of the brown bag club for a while If not, I know I have a great crew to talk to here.

"What made you decide to have the surgery?"

They found dysplasia (pre cancerous cells) during a colonoscopy so I didn't have much choice.

"I'm of the stance that I better be on my death bed before they tell me I need a bag."

For a lot of people this is the case because they have that exact same thinking. However, the reality is that it's best to have surgery while you're still in relatively good health. For one thing, you'll heal much quicker.

The second thing is that if the surgery turns into an emergency surgery, you probably won't have time for the stoma nurse to site your stoma properly for you and could end up with a stoma in unconvenient places, ie on or above the belt line rather than the usual couple of inches below and to the side of your belly button.

"How long does it take to get over the mental hump? From what I can tell that's the major difficulty in adjusting. Not that it's not painful, but mentally it's just hard. "

I've always said that ostomy surgery is 20% physical and 80% mental. Your body image is now altered. However, you will probably feel so much better physically afterwards. How long it takes to come to terms with it is very much up to the individual. Some accept it all immediately, for others it takes much longer.

The best thing to do is to talk to as many ostomates as you can before surgery. That way, you should come to realise that an ostomy won't stop you from doing anything you want to do - only your mind will.

True, you probably won't be able to wear skimpy bikinis or low rise jeans anymore, but isn't that worth it to regain your health? You should be able to wear most other things. In my younger (and skinnier) days I used to wear the tightest jeans imaginable without a problem.

No one knows you have a stoma unless you choose to tell them. Did you know the Queen Mum had a colostomy for 30+ years prior to her death. Bob Hope and John Wayne both had ostomies. Rolf Benirschke, played 7 seasons for the San Diego Chargers with his ostomy. Barbara Barry, who played Barney Miller's wife in the TV series and more recently the grandmother in 'Suddenly Susan' also has a colostomy (I have Barbara and Rolf's books).

You probably meet people with ostomies all the time in your day to day life, you just don't know it. There's more of us out there than you realise :)

Hope this helps.

http://www.ostomates.org

Hey Beta,

 I'm glad you came over here for a visit... These peeps are great, just like on the crohns board... they have already helped me out.

Even though I'm very new at this, I'll try and help you out as much as possible , if not, then we will learn together... But hey, its still early with your fistulas,, remember I have been fighting these things for a few years. I dont think an ostomy is in your cards. You still got the weekly humira to try....

Tonia

Beta

    the only thing the flagyl did was like you said , it helped with the infection, it never really helped close them, i could tell a difference with the draining and bleeding when i was on flagyl.

I dont know if yours is draining,

I saw where you got your surgen's apt. , I really dont think you have anththing to worry about. Mine were so bad and I have several. My RFV isnt even the worse one. So i know the humira will help you.

Tonia

Beta, Tyler did not have a fistula so i couldnt tell you how having an ostomy could  help the healing process there but the reasons why the  Drs. decided Tyler needed a temporary ostomy was due to the fact of a preforation in his terminal ileum and severe inflammation in his gut. I am convinced this helped Tyler to go into remmission allowing his body to heal giving his gut a total rest for several months(he had his ileostomy for 5 months) and he also was taking IV Flagle and other powerful antibiotics because of the inflamation in his gut,( he took these antibotics through IV for about 4 weeks after he got home with home-health care.)  Now Tyler really didnt have alot of time to think and worry about how having an ostomy would affect his life because we were told he MIGHT wake up with one after surgery according to what they found on the inside. The first month or so he was mentally ok with this because it DID make him feel 100% better. He was able to eat anything with NO pain and ENJOY eating for the first time in almost a year. But after several months emotionally it did start taking its toll on him, but he had his family and friends  reassuring him this was only temporary and reminding him of where he was and how much better physically he was NOW. The ostomy did allow his body to heal , inflammation wise, healthy area of intestines around diseased area was able to get healthy again which made resection more of a success. Tyler was able to go into surgery for the let-down of the ostomy and the resection physically much stronger, he had regained all of his weight that he had lost when he was sooo sick. I believe this made recovery from surgery much, much better. He had his surgery on a Friday before his spring break at college and he went back to college Monday right after spring break so he only missed 2 days of school due to the let down surgery, but Tyler did have his surgery done laproscopically which made his recovery much easier. Now he did use a back pack on wheels because he wasnt able to lift anything over 5 lbs for 6 weeks and you know how heavy those college books can be.

I know from reading your post at the crohns site you have been having a hard time with this for a long time......IF the drs decide this might help your body to heal just stay focused that this is TEMPORARY....remember where you were and how strong you have been to make it through that and that same strength will get you through this, and physically it probably will be easier. Once you adjust to a ostomy, learning the tricks of care it will become routine and apart of your schedule.

AND shaz was right about getting an ostomy nurse to strategically to place the ostomy, because Tyler had his where it was above his belt line which it didnt bother Tyler but it did bug me because he didnt like to tuck the bag in his pants, he kept his shirt untucked but sometimes you could still see the bag hanging from under his shirt, but that was a minor problem.

I know I didnt have to physically live with an ostomy but I did physically take care of Tylers, he refused to learn how to care for it and yes I know I should have made him but i guess i was trying to make things as easy for him as I could due to what all he had to go through....but as a mom i was so thankful to finally see my son getting stronger and able to eat and enjoy his food.

 

Beta

It's been a long while since I posted, just getting my life back after the ileo 15m go and the decision to go permanent 9m ago.

Although I never suffered with fistula's, my CD was just dragging me down physically and mentally and they were concerned that my health would deteriorate. I was hit like a bolt out of the blue with the suggestion of a temporary ileo. I walked out of the hosital, sat in my car and cried down the phone to my wife. Six days later I was in, a temp ileo had been 'installed' and for me it felt like it was the first day of the END of my life.

What made you decide to have the surgery? 

I was so fed up with CD for 15 years and everything it had done to me. My medics suggested surgery because we had tried everything else and it had failed and they feared for my health.

I'm of the stance that I better be on my death bed before they tell me I need a bag.  Was this your thinking and it changed? 

Whilst I appreciate this is a life changing decision, don't wait until you are too weak to deal with it. Some I appreciate are not given the opportunity to think about things, it happens as an emergency but as you have time, think carefully at ALL options. If you are 'relatively' well you will get over it quicker and be more mentally able to cope with the change

If so what made you change your mind?  How long does it take to get over the mental hump? From what I can tell that's the major difficulty in adjusting. 

Fully agree, the mental anguish is the hardest to conquer. You do though because you realise that you will never get over it and don't want to become a 'martyr' to the bag. When it's new there is nothing else in life so bad but you live with it because you have to and eventually it becomes part of your life, not your whole life.

Have you had a temp and a reversal?  If so what's that like? 

Mine was only a temp for 12m, 6m after the temp ileo I 'begged' to have it made permanent because the temp nature of the ileo (bowel bypass) had not been successful and I was still suffering big time.

Do I regret - NO....

Why...

Because I live my life much more, feel a lot stronger and I'm not in any pain from the CD at all!

Hope it's not something you have to worry about, but if it does become reality, life is not as bad as people think

Good Luck

NU