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julsgirl
Regular Member


Date Joined May 2010
Total Posts : 37
   Posted 5/25/2010 10:51 PM (GMT -6)   
hi guys. well im from Aus & i found this sight thro a friend. im not sure how dif things r ova here but it all looks pretty much the same.
Am jst after some advice. im 28 & iv had Crohns for 10yrs. Iv been thro the wars with this hidious disease. I currently have a Stoma/Iliostomy bag which was put in about 8 months ago. my damaged/diseased part is my colone so im told. iv had excrusiating pain for yrs n yrs but after my last surgery it did go away! but the last 2 months it has returned & im told i shld have my colone out. Has any1 had their colone removed?? was it sucessful? im so afirad il go thro more horrific surgery jst to have it flair back up in my small intestines.. im so very scared & stressed as iv tried all medications n treaments n havnt responded to anything. Am temped to get more surgey done but am petrified as this will be big surgery & il have a permanent bag. i also bleed and get alot of pain around my bum so i thought if my colon is removed i shldnt have that prroblem anymore?
 
Thanks for listening, wld appreciate some advice

julsgirl
Regular Member


Date Joined May 2010
Total Posts : 37
   Posted 5/26/2010 12:01 AM (GMT -6)   
Andorable i have also been reading about u & read ur from Aus?.. would really like to know more about ur condition as i mit have to have the same surgery. Do u get pain in ur gut now?? how long ago did u have ur surgery? did u have a temp one put in 1st? did it really hurt?

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 5/26/2010 4:30 AM (GMT -6)   
Hi Julsgirl,
Im from Queensland Australia and have had crohns/colitis now for 22 years, I had a full colectomy done in March of 09 and proctocolectomy done in July of 09, so yes mine was permanent from the start as my crohns almost took my life in the end. I had tried pretty much every drug on the market as well and became what the docs described as being crohns crippled, meaning I was unable to go anywhere or do anything. My surgery was a relief to get back my life but of course it came with its set of problems as well, with the emotional side of things but as for the pain after the surgery I was surprisingly not too bad, of course it hurt but not for too long it was a relief getting rid of the severe disease inside of me. For me it wasnt an option to have a temp ileostomy done first for many reasons. Its great not having any gut pain anymore now I am battling with rheumatoid arthritis which surfaced once I was taken off all my crohns drugs. But I have to make the best of everyday, I am 47 years old and have spent the most part of my life in hospital due to crohns but now I am free of that yeah I hope you find relief soon too and if theres anything I can help with please let me know. take care
Doreen

Shaz032
Veteran Member


Date Joined Feb 2003
Total Posts : 1251
   Posted 5/26/2010 7:39 AM (GMT -6)   
Hi Julsgirl

I'm from Perth, and have had my ileostomy for 34 years due to UC. I know you'll find heaps of support here so pull up a chair, put your feet up and enjoy :)
Ileostomy for 34 years due to UC

Moderator of the Ostomy and Psoriasis Forums

_______________________________________________

I'm not a complete idiot - some parts of me are missing!


julsgirl
Regular Member


Date Joined May 2010
Total Posts : 37
   Posted 5/26/2010 10:59 PM (GMT -6)   
thanks andorable & shaz, im def full of questions as i feel very alone at times. all my my friends n fam r fit n healthy, sigh. so as much as they try? no1 really understands.
Andorable when u say uv had a proctocolectomy does that mean u have a ileoanal pouch?? or do u have a perm bag/pounch on the outside of ur tum? sounds like u have been thro the wars, u r such a brave women! all ppl with this r. when i had my ileiostomy put in last yr my life was also hanging in the balance. I guess im asking about the pain side of the surgery cos that last surgery nearly kill me! n cos i was so sick going in it took me a good 4 months to recover. Im told having the whole colone out os horific so im shacking in my boots. Aft my last surgery i was pain free for about 5 months, then for some reason the pain jst returned every time i passed mucus and its awful. I cant understnad why its all of a sudden back and as a result of it i get sooo weak n cant move around.

Shaz does that mean u still have ur colon??

am also wondering guys do any of u work?? or cld u when u were younger thro this?? i had to leave my job as a PA nearly 1 n a half yrs ago now and i havnt been able to return. aft i recovered from my surgery early this yr i started looking for work again & was so exited. but, i got ill again n had to stop. Im so worried about not working. Im on a pension but u only get so much.

Thanks for listening guys. Means alot.

Shaz032
Veteran Member


Date Joined Feb 2003
Total Posts : 1251
   Posted 5/26/2010 11:52 PM (GMT -6)   
Hi Julsgirl
 
I don't have any of my large colon - ileostomy means that the stoma is in the ileum aka small intestine (hence 'ile' ostomy) and in a permanent ileostomy, which I have, the entire large intestine aka colon is removed. The rectum and anus may or may not be removed as well (mine has been). In a temporary ileostomy, the colon, anus and rectum are not removed as it is usually planned to hook it all back up to normal function at a later date.
 
I had my surgery done when I was 10 years old and always say it's the best decision my parents ever made for me.
 
I work full time in customer service at a hearing clinic. Since my surgery, I went through some of primary school, and all of high school with my ileostomy, have travelled the world eg Singapore, Hong Kong, Thailand, USA and UK, ridden elephants and camels, go swimming every summer, been rock climbing, etc all without a problem.
Ileostomy for 34 years due to UC

Moderator of the Ostomy and Psoriasis Forums

_______________________________________________

I'm not a complete idiot - some parts of me are missing!


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 5/28/2010 2:54 PM (GMT -6)   
      Shaz.....you are an inspiration.  I suffer with ulcerative proctitis.  My rectum HAS to go, it is my major problem.  I opted for a permanent ileo on the advice of my surgeon.  He said I was too high of a risk for J-pouch because of my age, I will be 64 in August.  It would be too much stress on my system.  I have high blood pressure, which is pretty well controlled with my meds.  I have no problem with the idea of wearing a bag.  I had to go back on 40 mgm of prednisone last Wed because my condition deteriorated on the 7.5 mgm,...bleeding, urgency, cramping.  The surgeon's assistant said that I would have time to taper before my surgery on June 28th.  They just want to make sure I am off the Humira for six weeks.  I have only been off for four.  How many times do you have to empty the bag?  Do you have to get up at night to empty?
 
Ulcerative Proctitis since Sept of 1998. Hospitalized for eight days.  Prednisone, Asacol, Rowasa enemas.  Two year remission. Flare..switched from Asacol to Colazal.  Two year remission.  Started 6MP in 2002.  Flared yearly from 2003 to May of 08.  Hospitalized for ten days in May of 08.  Flaring more often since.  Off 6MP. Remicade failed.  Humira failed.   Meds: Colazal, prednisone, Cort & canasa suppositories, Benicar (Blood pressure).  Surgery scheduled for June 28th...maybe sooner if possible.  Still flaring

 


Shaz032
Veteran Member


Date Joined Feb 2003
Total Posts : 1251
   Posted 5/28/2010 9:03 PM (GMT -6)   
Hi Christine

These days I'm more likely to have to get up to empty my bladder, so I just empty my bag at the same time. Usually though, I go to bed around 10.30pm and don't have to empty until I get up around 6.30am for work. At first though, you probably will have to get up once or twice until everything settles down.

I usually empty it between 4 - 6 times a day depending on what I have or haven't eaten. A lot of people try not eating thinking it leads to less emptying but in fact, it causes your bag to fill up with more gas instead so it doesn't work.

It's funny. When I started my current job, I was talking about my ostomy website (I like educating people) and the two people interviewing each other just looked at each other and smiled but I didn't know why. Anyway, one lunchtime I was looking at my website forum (making sure people were behaving themselves) and the girl training me looked over my shoulder and said 'THAT'S where I know you from!'. She had UC and was going for step 2 of j pouch surgery in a few week's time. She'd been on my website numerous times. Of course the people interviewing me couldn't tell me that at the time. It's a small world!
Ileostomy for 34 years due to UC

Moderator of the Ostomy and Psoriasis Forums

_______________________________________________

I'm not a complete idiot - some parts of me are missing!


julsgirl
Regular Member


Date Joined May 2010
Total Posts : 37
   Posted 5/28/2010 11:46 PM (GMT -6)   
wow!! very small world.. cant beleive ud had the bag since u were 10.!!??? that is amazing!! uv come so far, well done.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 5/29/2010 3:41 AM (GMT -6)   
Welcome Julsgirl,

I live in Florida USA and have been through what you're going through. I was sick with Crohn's for 7 years and was given a temporary ileostomy in 2006. I felt good for about 8 months, but then the disease flared up (even though I wasn't using my colon) and I started bleeding from the rectum. That was when I decided it was time to have my colon and rectum removed and make the ileostomy permanent.

Just like you, I had a hard time recovering from the ileostomy surgery. My stoma took 2 weeks to start working, and when it did, it was filling up a bag with liquid every hour. I became severely dehydrated and was in the hospital for 3 weeks. The proctocolectomy surgery went much better. Since I already had a stoma, I was out of the hospital in 4 days!

I could tell right away that I was disease-free, and it was the best feeling in the world! That was 4 years ago, and I couldn't be happier with the results. I never had Crohn's in the small intestine, and my doctor says that chances are really good that it will never show up there. So far so good! :-)

Now that I'm healthy again, I have lots of energy and can work full time, exercise, travel, go to the beach every weekend, and live a normal, happy life. I eat whatever I want and do not take any medicine. Having a proctocolectomy was the best decision I've ever made... well, except for marrying my husband! wink He has been an amazing support through all of this, especially since I got diagnosed with Crohn's only one year into our marriage.

I'm so glad your friend told you about this site. Everyone is so kind and supportive here. I wish I would have known about it before I had any of my surgeries. Maybe I wouldn't have waited so long had I met people who had been through it and were happy and healthy.

Please continue to ask any questions you may have. We're all here to help!

Take care,
Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 5/29/2010 4:08 AM (GMT -6)   
Hey Julsgirl,
Honestly when I had my colon removed I didnt find the pain to be that bad, however I did get an abdominal infection 4 days after the surgery and had to go back to theatre to have the infection drained but that was it, the proctocolectomy was having my anus and rectum removed to make it final and because I also had disease in the rectum. I was diagnosed with crohns/colitis when I was 25 and Im now 47 so I have dealt with it for 22 years and I must say what I am going through now is much easier than the pain I have lived with before the surgery. Every body has their own story about the pain of surgery etc and I wont for one minute say it doesnt hurt but just know that each person is able to deal with pain differently so please try not to be so frightened at the horror stories you may hear because it doesnt necessarily mean it will happen to you. When I had my colon removed I was in surgery for 6 hours started at 2pm and finished around 8 pm that night and I still woke up at 7am and wanted to get out of bed for a shower I felt that good, it was like all the bad had been removed it was a wonderful feeling. Because I have crohns I know theres always a chance it will come back but for now Im living day by day. I do work casually in child care and also get disability pension and have done for about the past 6 years as I may not be able to work full time again also because I suffer with rheumatoid arthritis. But Shaz is right, there is nothing you cant do with a pouch, which is what I have too, its the pouch attached to my stomache. Hope that helped a bit :-) take care and hope you find relief soon
Doreen

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 5/29/2010 11:48 AM (GMT -6)   
When it comes to pain, I received excellent pain medicine (morphine) by IV in the hospital and then took pain pills (Vicodin) when I got home, so I felt it was managed well. I liked having a pain pump in the hospital, so I could press the button anytime I felt pain, instead of having to wait for a nurse to come bring me some. It's something you can ask your surgeon about. Also, make sure you get up and walk as much as you can after surgery. It helps wake the small intestine up, and the sooner that happens the sooner you can eat and go home. It's much easier than our minds think it will be! :-)
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


julsgirl
Regular Member


Date Joined May 2010
Total Posts : 37
   Posted 5/29/2010 10:22 PM (GMT -6)   
wow its been so interesting reading about this! out of hosp in 4 days after having ur colon out??!!out of bed the next day??god after my ilio was put in they had to drag me out of bed,,i was so weak and in so much pain i cld hadly beleive it!!i didnt seem to react that well to pain meds, i think its cos i was on so much strong stuff going in. i jst remember thinking "god cant i have anything storonger? the morphine didnt do much for me..i was in hosp for 2 weeks and when i got home i was also in heaps of pain on n off. I had good pain meds but as i said i think i was so amune to drugs b4 i went in they didnt have much of an effect on me? it took me about 3 months to get ova that surgety, hence me being pretrified about this one cos im told is alot worse. but these stories have helped.

flchurchlady u sound jst like me to a t!!!!!! thankyou so much for sharing ur story.it does give me hope. And ur husband sounds devine.. im single and am worried il neva find some1 who will be able to stand by me thro this. Sigh. It has definatly hurt my confidence ova the yrs.

i have an apt with my surgion this tueday the 1st to discuss it. although i think my surgion is still a bit reluctant to do it right now.. aft my ilio was put in we didnt expect to do the big surgery for yrs! but iv been sick again with pain for months now and i cant live like this.


Thanks for listneing ppls. it means alot.

julsgirl
Regular Member


Date Joined May 2010
Total Posts : 37
   Posted 5/29/2010 11:11 PM (GMT -6)   
and when u guys say u have the pouch on/in ur tum that mean u have the bag on the outside? not the j pounch on the inside??

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 5/30/2010 6:00 AM (GMT -6)   
Yes Julsgirl my pouch is on the outside. The ones inside are called a j-pouch or a k-pouch as far as I know. When I had my colon removed even though I was out of bed the next day I still spent 2 weeks in hospital post op due to the abdominal infection and I also had the morphine pain pump so I could administer it as needed but even the doc was amazed at how little I used it cause aside from the infection I felt fantastic. Keep us posted on your progress :-)
Doreen

julsgirl
Regular Member


Date Joined May 2010
Total Posts : 37
   Posted 5/30/2010 7:45 PM (GMT -6)   
wow im amazed by that Andorable. After they took the morphine off me when my ilio was put in i was still in alot of pain.. and i thought i had a good pain threshhold.. maby not lol

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 5/30/2010 9:04 PM (GMT -6)   
Juls,
We are a lot alike! We were both very sick going into our temporary ileostomy surgeries, so that's probably why we had such long recoveries. You would be going into this one in much better shape, plus you are having the diseased parts removed, so you will recover a lot quicker than you think. You don't have to walk the first day after surgery, but you should try to get up the next day, with some help.

Your bum will not hurt anymore either. My disease was in the rectum, too, and after they removed it, I've had no pain there anymore. It is absolutely wonderful!

Please don't worry about not meeting a guy who will love and support you just the way you are. It's what we all hope for, and you have to believe that he is out there hoping to meet you, too! Men seem to be really easy going about stuff like this. As boys, they are fascinated by slimy frogs, fish guts and other gross stuff, and seriously, do men ever really grow up? As long as they have good companionship and sex, they're happy. wink

Since the morphine didn't work well for you, you could ask your surgeon about other pain relief options. I have heard of people having epidurals to numb the area. You might also want to ask if he can do the surgery laproscopically, which means it would hurt less and the recovery time would be quicker. Plus, there wouldn't be a big scar on your belly.

Good luck with your appointment tomorrow! Please let us know how it goes.

:-) Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 5/30/2010 10:17 PM (GMT -6)   
I too was very sick going into my surgery, it ended up being emergency surgery as they didn't think I would make it through if I continued the way I was as I was severely malnourished and was in hospital 3 weeks prior to my surgery so was in for a total of 5 weeks that time. I was extremely weak and had no time to prepare for the surgery I was about to have, therefore I required the help of a psychologist to help me get my head around it all.

polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 5/30/2010 10:33 PM (GMT -6)   
flchurchlady
You said that all men need is companionship and sex and we are happy. You've got that all backwards!!! IT'S SEX AND COMPANONSHIP. Get things in proper order!!

HO-HO-HO

Dan

julsgirl
Regular Member


Date Joined May 2010
Total Posts : 37
   Posted 5/31/2010 9:09 PM (GMT -6)   
lol Dan.

So, had an apt with my surgion n specialist this morning. Aside from the gallons of tears i think it went well.. this surgery is going to happen!!iv actally put my hand up for it, i never thought i would do that. But my surgion seems conident with the Colon out i will be a diferent person. If i dnt chicken out Surgery will go ahead on the 28th of this month. i left the office rooms crying, but laughing at the same time. My emotions r everywere.
Any words of encouragment wld be appreciated.
Thanks for listening guys. xx

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/31/2010 11:06 PM (GMT -6)   
make a pro and con list!
If you are anything like most of us, your pro list will be like 20 pages and long,a nd you will have one or two things on your con list, i literally had three and they were stupid, lol.
And everytime i would get nervous or doubt my decision i took out that list! And then i was sure i was doing the right thing!
You are doing teh right thing and you will be happy!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 6/1/2010 12:08 AM (GMT -6)   
Wow, Jules, I'm SO proud of you!! (((BIG HUG))) I never thought the words "I want surgery" would ever cross my lips either, but there comes a time when you're done suffering and you just want your life back. I also cried when I knew that I was going to have my colon out, even though it hadn't done me any favors for 7 years!

You are doing the right thing, and I agree with Summer's advice to make a list of pro's and con's to surgery. I did the same thing, and the only con I could come up with was that I was not going to be able to wear a bikini anymore (which is so stupid, right??) Later, I found out that I actually could wear one (with a skirt). I grew up in Florida and spent most of my youth in a bathing suit, so that's why it seemed important to me at the time.

I know somewhere on here, we have a list of pro's and con's. I will try to find it and bump it up for you to read. I think it will give you a lot of comfort to see what other ostomates (oh yeah, that's what we call ourselves) have said.

By the way, Shaz has a website, www.ostomates.org, which really helped me out after surgery. Also, we have a photo page, if you want to see pictures of us. It's www.photobucket.com, username/crohnsdisease and password/6mp3asa. Please feel free to post a photo of yourself, too.

Everything is going to be okay. I promise!

:-) Cecilia




Just making links 'clickable' :) Shaz

Post Edited By Moderator (Shaz032) : 6/2/2010 6:20:35 AM (GMT-6)


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 6/1/2010 12:20 AM (GMT -6)   
LOL Dan, thanks for setting the record straight! tongue

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 6/1/2010 2:24 AM (GMT -6)   
Hey Jules,
You will be fine at least you have time to get your head around it and it will give you back your life. I didnt have time to adjust to it because for me it was we have to do it now or I probably wouldnt make it for much longer. But here I am just a little over 12 months since my surgery and I am used to life as an ostomate and I must say I am so glad I have it now, my life is so much better with it. You are stronger than you think :-) . If there is any questions I can help with Im only too happy to help out. Take care and all the best for a speedy recovery
Doreen

julsgirl
Regular Member


Date Joined May 2010
Total Posts : 37
   Posted 6/1/2010 11:28 PM (GMT -6)   
thanks guys, really does mean alot. Im pretty anxious to get it ova n done with. This pro n con list is a good idea indeed. iv done it tones of times in my head and yes one of the big cons is the bikini part as i do live in it ova summer. buttt i brought a one pice this yr for summer and it wasnt so bad. the sexual side is also a bit of an issue..but in time and with the right person im sure il get more used to it.

One of my main problems when im really umwell is the fatigue. Im sooo weak atm, i can hardly get up the stairs somtimes. Were u guys like this??and did it get better after ur surgerys???
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