Hard decisions...Hello!! New with a few questions..

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aspenblue
New Member


Date Joined Jul 2007
Total Posts : 12
   Posted 7/27/2007 7:18 PM (GMT -7)   
Hello everyone!! I am new to the forums, but reading several of your posts has given me hope. I am 24 years old and was diagnosed with crohn's 7 years ago. I had a colonoscopy 2 months ago and my GI told me that he didn't see surgery in the near future for me. I have been having a horrible flare for the past year and I just haven't been able to kick it. I have lost 40 pounds, and I have been on steroids for a year also. Two weeks ago I started having a lot of pain in the "hiney area" and I was sent to a colo-rectal surgeon yesterday to find out that I only have two choices. Surgery or Remicade...so I went from, "no surgery or remicade" to now I have to make the choice. The surgeon told me that the remicade might not work and that I might have to have an ileostomy anyway. I have been looking at the side affects of remicade and they don't look pleasant. (Increased risk of a basically uncurable cancer). I am really nervous about making the jump into surgery...fear of the unknown I guess and that like two months after I have it done, they will come up with a better solution. But like all of my friends and family keep telling me...I have no life now, I can't work and had to withdraw from school last summer...so it couldnt be any worse. I don't know anyone my age that has to wear a bag, so I was just wondering if you all would be so kind as to let me know about some of your experiences.  I am curious about my clothes, I love to wear tight shirts and pants. I love scuba diving and swimming, riding roller coasters, hiking, camping and things like that. And like everyone keeps telling me...being as sick as I am right now I cant do any of those things anyway.  Thanks for your time...and if any of you have any experiences with remicade I would love to hear about them too.
 
confused  Amber
"Happiness doesn't mean that everything is perfect, it means you have decided to look past the imperfections and enjoy life anyway!!"

Post Edited (aspenblue) : 7/27/2007 10:20:53 PM (GMT-6)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/28/2007 7:08 AM (GMT -7)   
HI! You sound just like me a few months ago! It's such a hard thing to deal with it, isn't it? I am sorry you are even having to go through this. THat being said, this is what happened to me.
When I was 21 (1999) i first got sick, and two years later was diagnosed with UC, I ended up in the hospital 4 times, had to take steroids so many times i couldn't even count ganined all kinds of weight from them, then I got pregnant, in 2004 and i was great while i was pregnant, and I after i had my little boy (june 2005) i got worse again, I stayed sick for over a year, and in August 2006 i went to my GI and I said, "Can you just take the whole thing out?" He said, that would be an option but that he wanted me to try remicade, and I really didn't want to, but I did it anyway. And at first it worked great, but only for a few months, and even while it was working, i was still nervous that at any time it would quit working. And when it did stop working it made me wish i had never taken it, because i had wasted more of my life on something else that didn't work. So in Feb 2007 i went back and I said, I want it out! My GI tried to get me to take all these other things and blah blah blah, and I said, no. I acutally told him, "Either you find me a surgreon or I will do it myself!" He wasn't too pleased with me, lol. So he set me up with an appt and my GI kept trying to push the J-pouch but I did research and I decided against it. So on April 17, 2007 I had the surgery and had my colon removed, and i have a bag now. And it has been great! I actually felt better (even though I felt icky from the surgery) overall than I had in years within a week. It was amazing.
I was like you though, I was terrified, what if I wake up from sugery and they have a cure? And my Mom told me the same thing your frineds and family told you, lol. I have been swimming since and I have been fine. I am 30, so I am a little older than you, but I honestly wish that I had had the surgery when I was 21 and not wasted so much of my life!
As for the clothes, the bag shouldn't keep you from wearing anything, but for the first couple of months your tummy will be tender, and kind of swollen, so tight clothes might be out for a while, but all that should go away. My stomach was tender for abotu 3 motnhs, and still is at times, and most of my swelling has gone down, I don't know that mine is going to go away, i have had a baby and all though, so that makes it harder.
I am so much happier now though! I have a job again, I can take my son places, I can eat whatever I want, no more meds!
Good luck!

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 7/28/2007 7:28 AM (GMT -7)   
Aspenblue,

You don't mention what other, if any, drugs you're on or have tried besides prednisone. There are other options, and trying Remicade may be worth it, especially for someone so young. I've never heard that Remicade users have a higher incidence of cancer, I thought that was only if used along with other cedrtain drugs, and then only in a certain age group (which would be your age by the way).

Having said that, GI's can tell usually when disease will be responsive or when it's too far gone and surgery is your only option. I would get a second opinion for sure, but keep an open mind.

One of the reasons I'm so happy with my ostomy is that I can continue to do all the things I love like walking, hiking, horse back riding, working, shopping, etc. It has given me back my life. However, lots of people have had great results with the Remicade and it has also given them back their lives.

Every person has to make the decision of treatment based on their own disease and life style. No one can tell you what decision to make, but you must talk to as many professionals as possible, educate yourself on the different treatments and their effectiveness, and make your decision for you.
Judy
25+years diagnosed with CD. 
Numerous surgeries, permanent ostomy, adverse reactions to Remicade still on Prednisone (my worst enemy), Finally had another surgery hoping for a long remission. 
 
 


Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 7/28/2007 8:00 AM (GMT -7)   
I was doing the Remicade thing for about 2 years. Went once every 8 weeks and i'm pretty sure they upped me to the highest dose possible. It really did nothing for me. Nothing good, nothing bad. It made me a little tired, but what meds for this stuff doesn't. As far as it giving you cancer like problems, i don't really know. I'm pretty sure people with some sort of cancer are actually given Remicade for one reason or another. I know i had to have my Remicade dose done in the cancer wing of the hospital, with plenty of others who didn't have Crohn's. In my experience the Pred beat me up more than the Remicade.

As for the bag. I look back the years before i had the surgery and remember how tough it was. Basically planning my day around where the nearest bathrooms were. I was always in pain, always felt sick. Right now the bag is annoying and most likely always will be. But it's MUCH better than the way things were and i'm getting used to it after almost 11 months. I've lost a lot of weight but am slowly getting energy back and enjoying myself. Anything is better than being sick. Started working out again and plan on playing hockey again this winter, which is something i just couldn't do anymore the sicker i got. I'm not a woman so the tight clothes issue really never bothered me. heh

It's only my opinion. I think every med involved with the treatment of this disease is pretty much bad for you. The Pred nearly took me out. Sometimes i think it's been harder coming off the meds than learning to deal with the bag and lifestyle changes.
I had the surgery, the bag isn't that big of a deal. I'm not feeling sick anymore and almost back to doing things i enjoyed before the Crohn's really took over.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 7/28/2007 8:07 AM (GMT -7)   
Amber, I'm very sorry you've been so sick. Your story is very similar to mine. I was diagnosed at a young age and also battled Crohn's for 7 years. I took Remicade for 3 of them, but developed antibodies so it stopped working. After that happened, I had a really bad flare-up, so my GI doctor and colorectal surgeon recommended that I have a temporary ileostomy to bypass the colon, so that it could heal.

I said "No" at first, but after they did some convincing, I went ahead and did it. I knew it was reversible, so it wasn't that scary. After 8 months of resting my colon, it flared again and bled for several days. By that time, I had gotten used to the ileostomy and liked the freedom that it gave me. I had energy again, could work a full-time job, go to the store without having to run to the bathroom several times, and sleep through the night again. It did not show through my clothes, so I could wear stylish outfits, and nobody could see that I had it.

Since I was at an increased risk of developing colon or rectal cancer, I decided to have a proctocolectomy, which is where they remove the large intestine and the rectum, but keep the small intestine. My ileostomy was already in place, so they did not have to touch it. Once I healed up from the second surgery, I was feeling great and haven't slowed down since! That was almost a year ago.

I go swimming (in a one-piece, of course :) camping, scuba diving, and ride roller coasters, too! Since I'm healthy again, I have the energy to do all those things, and my ostomy just comes along for the ride!

It's a big decision, I know. For me, I wanted to try every medication first. When they stopped working, I tried the temporary ileostomy. When my colon didn't heal, I went all the way with removing it. By doing it in stages, it was easier for me to feel confident that I was doing the right thing.

I waited 7 years to have this surgery, because I was scared. I wish I would have found a place like this where I could have met other people who had an ileostomy to tell me what it was like. That's why I'm here to tell you that life with an ileostomy (for me, anyway) is really easy. I have no pain anymore and take no medicine. I'm healthy, working full time, and exercising several times a week. It has given me my life back, and I want you to know that surgery is a good option when all of the other treatments have failed.

Wishing you all the best,
Cecilia
Dx'd w/ Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)


aspenblue
New Member


Date Joined Jul 2007
Total Posts : 12
   Posted 7/28/2007 8:44 AM (GMT -7)   

Thanks for all the advise guys...I am so undecided!! As for the other meds I have been on, I have taken, Pentasa, Flagyl, Canasa, Asacol, and Pred. I have also tried different diets, but I don't have a lot of will power when it comes to food. I love to eat. I am going to see my GI again on tuesday and I am going to talk to him about the Remicade then. I am worried that I will try it and it will work for a while then quit, then I will have wasted more time. I have lost the last year of my life and there is no way to get that back. This sucks sooooo bad. But I have faith that something will work, and if it comes down to surgery I have a great family that will support me no matter what.  Hearing from you all is great though, you KNOW exactly what I am going through. My family can only look in from the outside and say "oh I'm so sorry." I have my moments though when I look at healthy people, and while I would never...ever..wish this on anyone, I resent seeing people healthy and doing what they want without a care in the world. Isnt that terrible!!??!! Well anyway thanks again for the info...I am sure that I will be on here again soon. This is like free therapy, hehe!! This is the most positive place that I have found regarding ostomies. Most of the stuff I have found on the internet is really depressing. It is good to hear that there is hope.

Amber


"Happiness doesn't mean that everything is perfect, it means you have decided to look past the imperfections and enjoy life anyway!!"


awesomeame
Veteran Member


Date Joined Feb 2006
Total Posts : 629
   Posted 7/28/2007 1:03 PM (GMT -7)   
hey amber~i had my surgery when i was 25, just last year. i regret not having it done sooner, it gave me my life back. being med free is great. i have way more energy now then i've had since my diagnosis in 1991.

you'll be able to do anything, no worries. i ride and race my quad, ride motocross and am looking forward to riding my sled this winter. hiking and camping are no problems either...i'm out in the bush a lot, can't wait for deer season. as for clothes you'll find something that will work, but it will take some experimenting. i wear hiphugger jeans and a shirt over top, not tucked in, with a minibag. works great and no one's the wiser.

being young and having this done sucks, but this was for sure the right thing to do for me.

--matt
Dec 2006: Proctocolectomy/permanent ileostomy
Since 1991: Indeterminate crohn's/ulserative colitis


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/28/2007 7:40 PM (GMT -7)   
Remicade can cause lymphomia (sp) and it is probably given in the cancer ward because it is an infusion, like chemo is sometimes. When it is used with immuran or 6mp it ups the chance even more which is kind of odd, because 6mp is a form of chemo.
What you were saying about resenting healthy people, that's notbad, it's just human nature to sometimes feel jealous of someone who has soemthing you want. Just like if someone gets a car you really like, but you can't get one. You don't want the person to wreck their car, you just think, man I wish I could drive that car.
With the bag, you don't have to have willpower with food, that is a good thing, I ate a whole thing of nachos at the movie last night, lol. ANd other than the slight heartburn it gave me, I was fine. I could have never done that before. This site and others really helped me to feel better about getting an ostomy too, also my Mom was really good, she found out about some people around here, some prominent people at that, that have them, and we have a family friend who has had one for about 15 years, and I got to thinking about it, and I realized that when I thought of him, I never thought of the bag, and in all those years I have only smelled it twice he is in a wheelchair and completly unable to feel if it full. or change it himself, so sometimes it gets too full and loses the seal, that doesn't happen if you are careful not to let it get full, I also found all this info on famous people who have them, one of the Bush brothers, Tony Snow, Fred Astaire, Napoleon even had one. Even the Queen of England! That helped me too, because even though I don't admire all those people, I did realize if they could accomplish what they had with an ostomy, surely I could handle my normal little life!

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 7/28/2007 7:52 PM (GMT -7)   
Maybe that's why Napoleon always had his hand on his stomach...he must've been checking to see if he needed to empty his bag! tongue
Dx'd w/ Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)


badbaggirl
Regular Member


Date Joined Jul 2007
Total Posts : 275
   Posted 7/29/2007 10:13 AM (GMT -7)   
Or muffling the noise!
BadBagGirl
Crohn's Disease, Colostomy due to cancer and I make darned good dill pickles.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/29/2007 12:46 PM (GMT -7)   
flchurchlady-that's exactly what I said!

badbaggirl
Regular Member


Date Joined Jul 2007
Total Posts : 275
   Posted 7/29/2007 1:32 PM (GMT -7)   
I was on Remicade for about a year. I had to go off of it becasue on day while they were giving it to me, I stopped breathing! Then I was on a Humira study with injections weekly. Those shots stung like hell.
BadBagGirl
Crohn's Disease, Colostomy due to cancer and I make darned good dill pickles.


Arundinaria
Regular Member


Date Joined Apr 2007
Total Posts : 160
   Posted 8/13/2007 3:42 PM (GMT -7)   
I am an old fart (sorry) and can add little to what has already been said. However I reached the point where the pain was so bad that my surgeon told me that my chance of living very much longer were about gone. I then talked to my Cardiologist who told me that If I had surgery my life exectancy just took a great big dive. I had the surgery and although the bag is a pain in the gut no way would I go back to the way I was living before surgery. I now eat what I want when I want and for someone my age still get around pretty well. I am still making bamboo fly rods enjoying my great grandchildren. My signature says it all for me

Arundinaria
When there are no more choices, tha decision is easy!


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 8/13/2007 4:54 PM (GMT -7)   
Amber,

I will spare you my pitty story...just please know I can relate. I went to see my GI specialist 10 days ago for a scope exam (you know, a camera placed in your rectum). Anyway, when the scope exam was concluded, the GI specialist sent me to the hospital and I have been here ever since. It looks like I am going to be on a bag! My surgeon has given me the option to have a bag or I have to stay the way I am...sick, obstructed, and unable to eat.

This is a very hard decision to make. Looking back, I had my first surgery on my 26th bithday. Then, I was rushed to the hopsital two days before my 32nd bithday and I was stuck in the hospital for 8 days. Then this past June, I was in the hospital again for 9 days and it was 33 bithday. So, here I am in August, sitting in the hospital again.

I would really like this nightmare to end. And if a bag would make that happen, then I am going to have to get one. I have had to drop out of school 3 times for sicknesses and now I have just given up on school. I would love to get another degree, but I can't commit to anything when I constantly feel awful. I want to have my life back. I want to feel healthy again. Maybe a bag won't feel normal, maybe I will hate it, but at least I won't be in the ICU again in kidney failure, in heart failure and nearly dead because I am afraid to eat solid foods.

Good Luck.
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