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Posted 5/14/2010 11:36 PM (GMT 0)
I am sure this post has be talked and explained to death. I need more info from you folks again. My colon/rectal has recomended today, that I have a permanant colostomy and rectum removed. I have had temp.colostomy,resections,multiple fistula's sx,well you get the idea.  Please tell me anything and everything I need to know. I do not scare by most things,however today, right this second I am very uneasy. Please talk to me. thank you, Mary Lynn
Posted 5/14/2010 11:56 PM (GMT 0)
Hello Mary Lynn smile

Quite normal to feel uneasy I would say as it sounds as if you have already been through a lot with surgeries, fistula's etc.

I have a permanent Ileostomy so a little different but I have also had my rectum removed so I can tell you a little about that.
Although I know that everyone is different and don't recover in the same way, for me personally I sailed through recovery amazingly well compared to what I thought I would. As for the rectum removal I hardly felt any different down there and was sitting quite comfortably even after only a couple of days. I did get an urge to push as if to expel something from a rectum that was no longer there occasionally but it didn't last long and it didn't effect my daily life at all. I had Illeo in 2003 and rectum removal in 2005 and I have been physically fine ever since and don't take any medications anymore.

Ask away, and I will try my best to answer whatever you throw at me lol.
Posted 5/15/2010 12:38 AM (GMT 0)
Suzy, please just tell me anything. The reason for this sx is due to crohn's. I am 51 and cannot catch a remission. my hands are shaking tonight, please just throw anything out you can think of.
Posted 5/15/2010 2:21 AM (GMT 0)
well if you have already a temp ostomy you probably know the ropes of that.
What do you want info on?
Posted 5/15/2010 11:25 AM (GMT 0)
rovin1959~since you don't have specific questions listed, I'll give you a quick version of my story...

I had had many surgeries, resections, setons for fistulas and lived with constant joint pain. I had a temporary ileostomy from surgery complications and had it reversed as soon as I could. My life went back to no quality of life so I asked my GI and C/R Surgeon if I could have another ileo and they both laughed!!! They knew I'd want another, but it was a decision I had to make, and they weren't going to direct me into another stoma unless I had no other choice.

I lived with a temporary loop ileo for 8 years and while I was feeling 'good' my rectal disease was getting to the point that meds weren't doing a thing anymore. Thats when we started talking about a Proctocolectomy...it took me one phone call to my hubby and in 5 minutes I scheduled the surgery!!!

I was 40 (happy birthday to me!) when I had it and expected to bounce right back...I didn't, but many do, so I took a good 10 weeks to feel more like I wanted to go out and do things. Every day did get better, it's just that it was slower than I anticipated, but around the 4th month I woke up one day a couldn't believe that I didn't 'feel' sick anymore and didn't have any joint pain :-) (knock on wood)

Today I am a very active person who travels and lives life without caring where the closest toilet is!!!!!

Whatever happens during recovery is temporary and the long term effects are so worth it smilewinkgrin
Posted 5/15/2010 11:01 PM (GMT 0)
Mary Lynn I am sorry I didn't get back here after your post last night.

I spent 5 weeks in the hospital altogether when I had my first surgery to remove the colon and form the Ileo, 3 of those was trying to control the UC. It got to the point where the meds they were giving me just were not working. As a last resort they tried a new tablet and for the life of me I cant remember what it was called but it is 7 years ago now. It was a green rugby ball shape and every-time I took one I felt really sick and would vomit. I told the Docs that I literally felt like this new medication was poisoning me and I knew that my body did not want it. It did bring the inflammation levels down a bit but not enough by far!

In the end I said "Take it! please just take my colon!) and to be honest I was at a point that there was not really any other choice for me anyway. I remember waking up the next morning after surgery and thinking how well I felt already. It was wonderful to not have to dash from the bed to bathroom and as I had just had surgery I had a catheter in so didnt even have to go pee lol. I will never forget the rush of well being I felt once that diseased Colon had gone and I am still doing great today.

I can't promise you all will go as smoothly as it did for me surgery wise but at the same time you may hopefully do just as well as I did!

When anyone is at a point where they have no quality of life anymore due to a diseased bowel I really do believe that surgery can be and is for many a way to begin to live again.

I am aware though that UC and Crohns are different in that with Crohns it can effect a much larger area where as with UC which I had, once Colon had gone that was it no more disease. My understanding is though that there are many people that have had surgery for Crohns and they are much better afterwards. Am I wrong? any one?

I just read through OH1076 post and it seems that she has/had Crohns and after surgery now has a full active life again so it can happen Mary, it happened for us and it can happen for you too.
Posted 5/16/2010 4:39 AM (GMT 0)
I had my permanent ileostomy 7 weeks ago. I am now living a new life.
However, I walked as slow as a snail in the first week after the surgery. I bent myself forward like a hunchback when I walked. I took painkillers for 3 weeks.
I started to feel much better after 3 weeks, meaning that I could walk as fast as before without leaning forward. LOL
Now I can eat whatever I like.
The only thing I don't like about my pouch is the gas. I wake up every morning with a balloon on my waist. I tried to take Beano, use a pouch with a charcoal vent, change my pouch everyday, keep myself from being hungry, etc., but nothing helps.
Posted 5/16/2010 5:45 AM (GMT 0)
aa
I had the surgery Aug.4th 09. I wondered if i would every really be healthy again. No drugs worked and it got more and more unbearable. I had fought to find another way for so long.

Finally I said OK after much Dr. encouragement. SO thankful I made the decision. Now I have no one to blame but myself and wonder why I didn't do it sooner. The support here is amazing and I am still slowly finding my own answers.

Being afraid of the unknown is very common. It does take a leap of faith. But usually the ALL and MIghty has helpers to catch us all and they do.
Posted 5/16/2010 12:06 PM (GMT 0)
burnabygirl~is your mouth dry when you wake up in the morning? You might be sleeping with your mouth open, which is giving you more air in your system, and it only has one way out now. I 'retrained' myself to keep my mouth closed and breath through my nose and it has made a difference. It's not easy but can be done! When we get hungry the gas usually gets worse, too, and to make matters more complicated, what works for one doesn't necessarily work for the next personrolleyes

Filters don't work when you lay down (gravity thing) but do work again when you get up :-)
Posted 5/17/2010 2:17 PM (GMT 0)
I cannot thank you enough. I have been in quite a funk. My husband is totally against it. My friends and family(such as my family is) will be here. I am taking pain pills to live. Today, I have started tapering off. I soon will realize how bad I really am. Another question??? How long is the hospital stay for these procedures? Do I sound scared? Bet on it! Thank you so much. Mary Lynn
Posted 5/17/2010 4:48 PM (GMT 0)
Mary Lynn,

After my proctocolectomy (colon and rectum removal), I was out of the hospital in 4 days! I could tell that the disease was gone, because the pain I had felt on the left side of my abdomen for 7 years was completely GONE! It was the best feeling in the world! :-)

I had a temporary ileostomy for 8 months before my proctocolectomy, so I think that made my surgery a bit easier. It takes a few days for the ostomy to start working, so make sure you get up and walk as much as possible after surgery to wake the bowels up.

Please don't be scared. They will give you excellent pain meds by IV that will keep you comfortable, plus they will send you home with pain pills. Once you are healed up and pain-free from the surgery, you are not going to need them anymore.

Hugs and prayers,

Cecilia
Posted 5/17/2010 6:29 PM (GMT 0)
rovin: I had a complete proctocolectemy at the U of Chicago in 2006. Couldn't be happier. You already have an ostomy so you're familiar with that part of it. I had staples going up the backside which made it rather uncomfortable to sit - except on a pillow - till they were removed about a week later. In the hospital 7 days - when they tell you to get up and walk - get up and walk. After the staples were removed - I'll be honest it wasn't fun - but it only took about 5 min. things moved pretty quickly. I was back at work in 6 weeks. Surgery, as you already know, takes a lot out of you so it takes several weeks to get your stamina back. The "phantom rectum" mentioned above went on for a little over a year - episodes happened maybe once a week and lasted about 20 seconds. Deep breaths and blow thru them! I had a catheter after surgery which wasn't removed till a few hours before discharge - DON'T let them wait that long. I had a 1 1/2 hour drive home from the hospital and the urge to urinate was with me the whole way. That was a nightmare. Anyway, try not to worry and keep in mind that you're about to get your life back. I wish I'd had it done six months earlier because I was in a living hell with the rectal symptoms.
Posted 5/17/2010 6:48 PM (GMT 0)
rovin: for what earthy reason is your husband against you having this done? I could go off on a tirade here but I'm trying to hold back :)
Posted 5/17/2010 8:17 PM (GMT 0)
Feel free, to say what you want. My girlfriend would like to kill him. luckly she lives very far away.He is a spoiled rotten,raised very wealthy guy. He does not have acess to much of his trust fund now. (I honestly thought he was as poor,well struggling,as I was.) his lawyer told him to at least look sorry in court. Yes, he loves me in his own way. But i have to hide my pain pills,and then he drives me crazy until they are gone. That and his drinking,and other things are killing me. I am telling you this, not wanting you to feel sorry for me,just want you to know what I am up against. His mama called today. She had a fit.Not a fit, but under her words,do not do it. Tommy is younger the I am and he cannot deal with it. Wish my mama was here,alive,she would,very nicely,in a southern way tell him to drop dead. My daddy,a doc,and his mama died of colon cancer. I want to run away. I will take this old laptop if I go. I think, I love you folks. 
Posted 5/18/2010 10:43 PM (GMT 0)
(((((((((((((Mary Lynn)))))))))))))))

Wow! You really are under such a lot of stress! This is just my opinion of course but I believe that regardless of how your Husband and his mother feel about you having surgery, at the end of the day this is your life and your health physically and emotionally too that is the priority here. From what you are saying to us it sounds like your family are only considering how surgery is going to effect 'them! and they are forgetting that you are the one that is doing the suffering.

Doing what is right for you in this situation is not selfish it's survival. I am sure that you must have tried to explain to your family why you need to do this, if they can't deal with what you tell them then that is their problem and certainly not yours, you have enough to deal with.

Ask yourself this, Is your quality of life good right now? do you need to do something to change it? if so, exactly what is needed to change things? And last of all, if you do nothing and carry on day to day as you are now what are things likely to be like in 6 months time?

It's a very difficult time for you Mary Lynn but you can and you will get through it!

Suzy x
Posted 5/19/2010 2:59 PM (GMT 0)
You folks are good. No BS, just hit the nail on the head. My doc/surgeon, is a Mayo Clinic resident and worked there for a few years. I had the head of Duke,gastro surgeon comfirm. This is like the deff. of insainity. I keep doing the same thing, expecting different results. Just to let you know,I used to be very tough. Now @ 51???? trained horses, ran 10 k's,could do a beautiful,side,front,and swinging round kick.(on a bag). Now I hang around the house and isolate. Messed up my bed again last night. sphinter musc. destroyed. Ok,now it is up to me. Da** I hate decisions. Thank you again.
Posted 6/13/2010 1:19 AM (GMT 0)
Thank you, OHIO76!
I took your advice and kept my mouth closed while I sleep since 2 weeks ago. It makes a great difference. I no longer wake up with a balloon! And I don't need anything else, no special pouch with a vent, or Beano.
I just cover my mouth with a piece of cosmetic cotton pad and put tapes on both sides to make sure it won't fall off during the night. I get 8-9 hours of sleep every night now without an intermission.
I think summerstormr has also mentioned the 'keep the mouth closed in sleep' method, THANK YOU ALL!
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