just cryin' for myself

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Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 10/16/2007 2:01 PM (GMT -7)   
hi folks! So this past Friday I received some info from Coloplast in the mail- a CD about living with ostomies, brochures, etc. And of ocurse I open up the catalogue to see the lovely color pics of a "healthy stoma" & I burst into tears! Was crying on & off all weekend. It just seems so yukky. I had my last remicade infusion yesterday, a double dose, to try to get more stable prior to my surgery. And sure, it's definitely helping, which is nice but at the same time it makes me think "What am I doing?". Logically, I know from past experience that the remicade most likely will not last & all I can hope for is that it does stabilize me for the next month. And I know that choosing to have surgery is far better than having to undergo emergency surgery, which all my docs have told me would happen if I went off meds. But darn it, it's HARD to make that choice! I'm sure all of you have been thru the same thing- and I'm hoping that by crying now, I can avoid it later. But.... you know how it is, just sort of feeling sorry for myself. And everyone else here, too, for that matter! How did you convince yourself you were doing the right thing? I don't doubt it logically, but the emotional side of me is struggling a bit.
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 60mgs/day
nothing works anymore.....
surgery date- November 14th!!!!!!


blue85
Regular Member


Date Joined Mar 2005
Total Posts : 62
   Posted 10/16/2007 2:26 PM (GMT -7)   

Its ok to feel this way.  I think most of us that have had to make the choice felt the same.  I can remember before the surgery reseraching everything about ileostomies.  The first time I saw a color photo of one I thought I was going to gag, I was just in shock.  You know in your mind what to expect but when you actually see it, wow!  Its been almost 4 months since my surgery and its really not a big deal.  At first when it was time to change the appliance I dreaded taking it off because I knew I was going to see that little rose bud just sitting there (thats what it looks like)  But now I don't have any apprehension at all.  Its easy to let yourself have a pity party, but everytime I even begin to feel a little sadness I just think back to all those hours of terrible pain that I dealt with every single day and then I don't feel sad at all.  I can't begin to tell you what it feels like to have my life back and you will feel the same way.   Just little things like taking a drive are huge.... I couldn't do that before for fear of pooping my self, haha.    Everyone goes through different stages of dealing with the ileostomy, if you need to cry then cry.  Trust me when I say those days will be just painful memories after you recover from your surgery. 


Dx: with Crohns in 10-2003 then changed to Ulcerative Colitis 1-2007
 
Proctocolectomy with Ileostomy June 19th 2007 - Doing great.
Prednisone 60 mg (currently tapering by 10 a week until zero)
6MP 125 mg po qd
Pentasa 500 mg 3 po tid
Calcium 400 mg with D tid
Iron po tid
Vit C po tid
Tylenol #3 prn
Multivitamin
Remicade - Quit working
Asacol
Colozal
Abatacept Study
Asacol
 
 
 


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 10/16/2007 2:30 PM (GMT -7)   

First thing - It is OKAY and NORMAL to feel the way you do.

Second thing - You will cry now, and you will probably cry after. It is a normal part of the grieving process. And you will grieve, at least a little. A wise forum member taught me this!

When I read your posts I swear it could've been me writing them. I finally made the same decisin you did - to have surgery. But then my liver decided to shut down due to REmicade - which I had been on for TWO YEARS. So my surgery turned into emergency surgery. I was very sick going into it, and it made recovery that much harder. Be thankful your Doc is working to get you as healthy as possible before you go in. It does help. Also, you've been getting some good advice here, and have been asking good questions. If you want, you can send me a message, and I'll send you some details about what I went through with my surgery. Just remember everyone is different! But you really are preparing yourself well. This is a hard decision, and I seriously don't know if your emotions ever really embrace the idea. I finally accepted that I needed surgery, I never wanted it. Know what I mean? And I was angry as hell right after the surgery. The first week I was hurting, and learing to deal with my new ostomy. I cursed everyone who told me I would feel "so much better". Then I got depressed about the bag of poop that was now permanently attached to me. I cried all the time. Then I started to actually get better. And things got easier. I am starting to eat things I couldn't before, and I don't live in constant pain. It's good.

The thing that helped me most was finally accepting that it was okay to have all of these emotions. Not only okay, but totally normal. I won't tell you that this will be the easiest thing you've ever done. It's surgery. But, you'll be okay. Stomas ain't so bad, I promise. (And it's okay to curse me for saying that if you have an "angry" period, like I did! tongue )


UC diagnosed: December, 1999
Asacol: 1600 MG daily
Immuran: 150 MG daily
Prednisone: 4 MG daily (Woo-Hooo! Getting lower and lower!)
Remicade: Infusion every 7 weeks
Probiotics 4 billion CFU Daily
Glutamine 500 mg 2x Daily
 
OFF all meds!! Liver failure, and emergency surgery as soon as liver levels return to normal. ACK!
 
Surgery August 24, 2007. Home now!


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 10/16/2007 2:32 PM (GMT -7)   

Eva Lou ---

It's ok to cry!  I'm sure ALL of us have gone thru some of the same feelings you are going thru.  Feeling sorry for ourselves, angry, frustrated, then the complete opposite - excited, anxious to be healthy, and on and on.

Personally, I was rushed into emergency surgery thinking I had another blockage or they were just gonna do another resection.  Came out of surgery with a permenant ileostomy.  Rectum was gone, what was left of colon was gone, and several more feet of small intestine was gone.   I was really, really depressed about it.  Very negative.  But, I had a UOA visitor about my age that came to the hospital to visit me, and that was a huge turning point for me.  She was a godsend.  She was healthy, happy, raising a family, working full time, involved in her church, and other activities, vacationing, and very  active.  Not too long after I recovered from the surgery, I was kicking myself in the bu** for not having it done much sooner.  You will actually regain a life back, if you can even remember what it was like to have a life after being so sick.

Yeh, looking at pictures of a healthy stoma is not an appetizing thing, but it's just one small hurdle.  It just becomes part of your anatomy and you will adjust.  The difference is that you don't have to look at your rectum (well, it's kinda hard even if you wanted too!), but the stoma is right there lookin' at ya.  It will be covered up nearly all of the time and it's really not that bad once you see it a few times.  I remember that from 23 years ago!

This forum, in my opinion, is such a wonderful thing.  You have contact with all of us ANYTIME!  We are here for you to cry on our shoulders, ask any questions, whatever you need.  Keep your chin up and look to the future of being able to eat, travel if you want to, go shopping, go out with friends, go to work, .....

So, Eva Lou, you just ask away.  Never feel bad about expressing your feelings.  It is much healthier for you to express them and be prepared for your surgery.

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 10/16/2007 3:34 PM (GMT -7)   
thanks everyone--- I need to hear those replies! And I know all of you are right. I am accepting my upcoming surgery, but still not wanting it, or course. Although in many ways, I know things will be much better afterwards- the car trips, not wearing Depends, no hemmorhoids, etc. Believe me I am looking forward to that! And even watching that **** Coloplast CD wasn't so bad- it's just part of yuor everyday toiletries, the bag, etc. I know, or at least I'm expecting, to have some depression afterwards. But honestly, being able to post here & get such good feedback, advice, & support makes such a massive difference. I really think it's made this whole prcess easier- thank you all!!!!!! :-)
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 60mgs/day
nothing works anymore.....
surgery date- November 14th!!!!!!


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 10/16/2007 8:17 PM (GMT -7)   
Eva Lou...I can seriously relate. I went to my Dr's office on a Friday to have a sigmoid scope test. During the test he saw some abnormal signs and sent me to the nearest hospital. To make a long story short....10 days later, I had a bag. I did not know anything about an ileostomy. I asked this forum so many questions. I did not know what a wafer was or stoma, flange, pouch, clip, one-peice, two-piece...etc. All of this was foreign to me. Then I did a "Google" search for the word "stoma." I did not know what it was...and then I saw it! I wanted to puke! I sobbed and sobbed and SOBBED! I prayed and asked the Lord to help me NOT get this surgery. I will be 11 weeks post surgery on Wednesday and I do not regret the surgery at all! I would do this again...hands down. I am not dizzy anymore. I can run miles again. I can eat again! I still suffer with some problems but I am 80% healed and that is alot for someone like me who is known as a "hard case" at 3 local hospitals.

I hope you find peace with this surgery. Please remember, laughter promotes healing. Try to stay positive...you're going to do great!
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


xdeex
Regular Member


Date Joined Sep 2007
Total Posts : 42
   Posted 10/17/2007 3:36 AM (GMT -7)   
Hi Eva Lou.

I was given 6 days notice for my surgery and to be honest I didn't have a clue what to expect.........just wanted to be rid of the pain and misery the crohn's had caused me over the years.

After the surgery I went through all the usual emotions, crying all the time, depression, and one night I wished the nurse would double the dose of Morphine and I would never wake up again........that is a thought Im not proud of .
But I'm here and loving life, did take a while to adapt to the stoma and the bag, but got there in the end.. :-)

Wishing you well and good luck..... :-) .

( By the way, you entitled to feel sorry for yourself. )


Diane x
Diagnosed Crohn's 1994, panproctocolectomy with ileo Feb 2006.


Stoma Girl
Regular Member


Date Joined Oct 2007
Total Posts : 55
   Posted 10/19/2007 7:04 AM (GMT -7)   
Hey hun, think about this: with all this stem cell research, in about ten or twenty years they'll be growing us new colons!

Well, I know I certainly hope so..!
Never Give Up, Never Surrender
 
.. Stoma Girl ..
.. Ileostomy following Crohn's Disease, 2007, aged 18 ..
.. Time between diagnosis and operation - one year ..
.. Journal of stoma-affected life : http://stomagirl.livejournal.com ..


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 10/19/2007 11:45 AM (GMT -7)   
I am just waiting for an artificial rectum to be created...come'on people we can replace the human heart with either a pig or cow heart...why can't we replace the rectum with a cow rectum. Of course, then I would be known as a lard butt. :o)
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 10/19/2007 1:26 PM (GMT -7)   
I hope they can grow me a new set of intestines, I'm running out.
Judy
49 years old, Crohn's Disease   
Six resection surgeries, permanent ostomy, adverse reactions to Remicadeback on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/19/2007 5:36 PM (GMT -7)   
Judy, they ARE growing intestines, so it's only a matter of time! If I had a transplant, I would want a dog's intestinal system, because they can eat anything, and it just comes out the other end. Then, you could say as I walk by, "Look at her strut her mutt butt!" 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 :)


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 10/19/2007 5:49 PM (GMT -7)   
Oh Cece  .... LOL!   I had heard some years ago that they were not successful with transplanting pig intestines.....  haven't kept up on it cuz I'm healthy with what I have and pain-free and NO nasty meds.  yeah yeah  
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/19/2007 8:31 PM (GMT -7)   
they actually did a transplant of human intestines somewhere in europe, but it didnt' take so well. Actually really really badly, the person died pretty soon afterwards. They said that the problem is partially just the sheer amount of intestine there is, and then also, the patient has to stay on other types of immuno supprestants forever, and that it is possible that UC could show back up, because it's something in your body that tells it to be there, that made no sense!
anyway, i did see where they were going to try growing them from stem cells, but that was a while back, and since funding has been cut it might not happen.

Cece, that is so funny!

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1250
   Posted 10/20/2007 12:38 AM (GMT -7)   
Unfortunately, large intestine transplants are probably a long way away in the future simply because we can live without them and money needs to go into organs we can't live without, ie heart, lungs, etc :( Besides which, with UC or CD, the disease is still in our body and would just come back and attack the transplanted instestine anyway :(

They are doing small intestine transplants to varying degrees of success, but they're more crucial than large intestines.

I'm not saying they won't ever happen but probably not in the foreseeable future :(
I have had an ileostomy for 31 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 10/20/2007 5:34 AM (GMT -7)   
They've been doing more intestinal transplants each year, and you're correct, the success rate is not very high, but they have to start somewhere. It used to be that heart transplants didn't have a high success rate either.

As for having IBD in our systems and it may come back, yes, you're correct, but that doesn't rule it out. Some forms of liver disease can also return, but it doesn't keep them from giving transplants.
Judy
49 years old, Crohn's Disease   
Six resection surgeries, permanent ostomy, adverse reactions to Remicadeback on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 

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