Community Forum

Have a question, or want to share your own tips and experiences? Join the discussion in the community forum. You must be registered to participate. Our forums are moderated by Crohn's & Colitis Foundation staff to facilitate a safe environment.

Crohns, difficulties and heartache


Thu, May 15, 2008 1:23 PM

Now that sounds totally over stated for someone that does not have Crohns, but that is just the facts.  There are so many people with Crohns that every month i meet more and more.  However,  i can relate on a level as far as the pain and medication is concern, but three months after i was diagnosed with Crohns they disemboweled my large bowel.    It bites, but that is not were my heartache ends.  Other than totally having an ileostomy at age 21,  I am strongly advised not to have any children.  WEll unless i want a Quasimoto, or a one legged three armed kid. 

See here is my problem, I am on methotrexate.  I am allergic to Imuran (yeah almost died on that one,)  Remicaide stopped working, hense the ostomy, and Pentasa is like baby asprin for birthing pain.  And so here i am..  Heart broken, and distressed.  But hey at least i dont have to live on the toilet.  I carry mine around with me!!Hows that for service. 

Humera is another option, possibley, but i cant seem to stay healthy enough..   Any thoughts?  And yes we were trying to adopt, but for things out of our control  we are unelegible through the state......Know any babys ya dont want??

Blah, blah, blah.....I get tired of the same ol thang.  But i dont know who else to talk to.  Even among people with Crohns i feel alone.  Most of ya still have part of ur bowel, well at least for now.!  AM I that un common?  21, stretched out from predisone, and ostified.  As far as diet, anyone up for applesause?

Love ya man!  Jennabug

FPO bug
Joined May 14, 2008

Mon, June 16, 2008 8:05 PM

 Reply posted for Bug.

I am so sorry that you are going through all this - it's not fair. I've had Crohns since I was 19 - no ileostomy, so I can't imagine how you feel.  After 20 years, here are some of my observations, take from them what you will.

  1. When your accept this disease and the implications, you can start to heal. I made a meal out of the gireving process, but heck, the only way I knew how to cope was to be mad, mad, mad and resist all rest and help.  I did everything from re-birthing  to some old Aboriginal ritual (!!)  to try and find out 'why?' - I've swallowed buckets of green goop & supposed 'miracles' and just became frustrated.  The bottom line - this isn't your fault, it isn't fair and at some point we just have to keep going.
  2. A positive attitude helps. Scream and delete this now, if you like.  I hate hearing the stuff about attitude too. What I know, is that not everyday is as bad as the next, there will be times in your life when the good days run into eachother and you feel ok.  Truly.
  3. Take control - it's your body, so question EVERYTHING -  read, read, read and aks questions. Only you know how you feel, and as you get more experienced your body will tell you what it needs. 

You are so young.  Slow down (advice, sorry), you have time and things can change.  Having children is something that you can think about later - right now concentrate on survival - one hour to the next.  Give yourself permission to grieve and take some time to heal.  The rest will happen in its own time - really. 

 

FPO panda
Joined Mar 10, 2008

Mon, June 02, 2008 11:04 PM

 Reply posted for Bug.

First of all Bless Your' Heart.  So young and such crap to deal with.  Never say never though.  When I got pregnant with my last child they were not too happy with me because it meant stopping the Remicade treatments and all the other drugs but phooey on them because all that matter to me was that I wanted that child and nothing was going to stop me.  Yeah, it wasnt the best decision for my health but we managed to make it till the last month and then back on the steroids till she was born.  I know your' situation is much tougher than mine but God, always has a way of making things work out for ya.  Keep your' chin up and hey you are still very young and have lots of time and just tell yourself that some way it will all work out.......whatever it is you are wanting.  Oh, one more thing you might want to check with your' company benefits and see if they help with any type of adoption or invitro......I know that when I worked for ADT Security part of the benefits there are that they will help pay for adoption or they will help with invitro (paid for like 4 invitro's)  because they were really big into family.  Never know maybe that is a solution for ya.......Good Luck to you!

FPO kimhg
Joined Mar 21, 2008

Tue, May 27, 2008 12:00 AM

 Reply posted for Bug.

i totally hear ya! i'm 22, was diagnosed at around 18. i just got married almost 2 years ago, and i haven't been in remission once since i was diagnosed. i'm worried about having kids, too, and i'm thinking of having a resection to quiet things down for awhile, but i'm not sure yet.

FPO jezjiah13
Joined Sep 25, 2008

Mon, May 19, 2008 11:18 PM

 Reply posted for Bug.

Jennabug,

You're not alone!  I was diagnosed at 16, had part of my large intestine removed at 19, and because of surgery complication, had a temporary ostomy for about 4 months.  I loved it and hated it at the same time.  It may not have been permanent (which, by the way, made it harder for me to accept), but I can definitely relate to you, both on a crohn's level and an ostomy level. 

I've come to understand (even as stubborn and independent as I can be) that it is vital to one's mental health to find others who "get" what you're going through.  I was a headcase the first few weeks after my ostomy surgery.  The one thing that really brought me out of my funk was a discussion board for young adults with ostomies:

http://www.uoaa.org/forum/viewforum.php?f=7

People there have ostomies for all sorts of reasons, Crohn's being one of them.  I recommend you check it out.  And the cool thing is, everybody's pretty young, like us (I'm also a 21-y-o chick).  I just set up a profile here and I don't know if we can email each other through it, but I'd like to hear more about your story!

I wish you the best,

Kelley

FPO kelley
Joined May 19, 2008

Mon, May 19, 2008 2:26 PM

 Reply posted for Littlestar.

You know, it is not that i can't even have my own kid, that is not even totally important to me.  Here is the hit....If you have enough money you can buy anything.  With my Crohns, i can not work steadily, and most of the extra money goes to medical bills that i will have for the rest of my life.  This is not being pessamistic, i just have an ostomy which is about 5 grand a year.  And we finally got on insurence, we did not have any when i first got sick so we had to declare bankrupcy.  So it is not that as a female i can have kids possiblely.  Anyway, we can't afford all of the invitro stuff, and i am short on relatives.

FPO bug
Joined May 14, 2008

Thu, May 15, 2008 3:59 PM

 Reply posted for Bug.

Hi, Jennabug,

I feel for you, so very sorry you are so young to have to be going through so very much,  I am 43 and I was diagnosed when I was 10, I can not have children either do to the years of pred and methotexate.  I have chosen a to use a saraget,  my cousin actually is going to be my oven we are using her egg and my spouse sperm,  seems the best option, as with this illiness no adoption agency will touch me.  I have had all but 4 feet of my intestine removed, that is both the large and small and illeium.  so the applesause dinner sounds great  You do sound like you have a great attitude stay that way as everything will turn out.  Best of luck

FPO littlestar
Joined Jul 26, 2008

Thu, May 15, 2008 1:44 PM

 Reply posted for Bug.

Have you considered using a sperm donor?  You could choose to use an anomonyous donor or maybe ask a family member if you want truely have your genes represented.....

FPO meg3101
Joined May 7, 2008

Related Topics

IBD and trauma
Author Image Janeliza
Joined Apr 13, 2022

Hi all! I've had Crohn's since 2014 with m....

read more

Life Insurance?
Author Image Aperson1
Joined Dec 2, 2022

40 y.o. male looking to get life insurance.  ....

read more

IBD and exercise/sport
Author Image JS25
Joined Aug 14, 2023

This is my first post. I am 28 and I was diagnosed....

read more