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SpikeX77
New Member


Date Joined Aug 2017
Total Posts : 2
   Posted 8/22/2017 6:16 PM (GMT -6)   
So.. I was diagnosed with crohns in 1989... had my first surgery in 91.
My adoptive family sucked, no support from them, was told to go to school, get a job, suck it up.
Nearly 30 years later, had my 4th surgery last November, removing parts I wasn't using that were causing more issues..
With my post surgery care coming to an end I feel so alone.. I've never met anyone else with this, and I'm losing all the people that know my secret.. I don't know what to do anymore.

The next person to tell me get over it might get their teeth knocked out..
Like ***..
Guess I'm just rambling..
Any ideas to feel normal Again?

albear99
Regular Member


Date Joined Aug 2017
Total Posts : 33
   Posted 8/22/2017 6:56 PM (GMT -6)   
Hey man,

Im just getting diagnosed but i feel your frustration. The worst thing to tell someone who is suffering is it could be worse, especially when they are fine and you envy everone around you. But There is a woman i work with who has had much or your same problems. And i think the only way to feel normal is to continue to go to work, to smile through the pain. Maybe join a support group.

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4338
   Posted 8/22/2017 7:24 PM (GMT -6)   
Sorry you are having a rough time. There is an online support group through the American Crohn's and Colitis foundation or you can check to see if you have any local support groups in your area. Or you can vent to us anytime, as we "get it" too. You are not alone with this even though it feels that way.
58 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3257
   Posted 8/22/2017 7:40 PM (GMT -6)   
Welcome to the forum! I'm so sorry your adoptive family wasn't supportive. I'm a CASA volunteer and four of my nine siblings were adopted out of foster care; I've seen first-hand how awful some foster families can be (not mine, but others). Please know that you are NOT alone in this. Feel free to come here as often as you need. I have so much respect for those who had this in the 80s-90s when there wasn't much medication to treat very well. But they're all wrong - this is not something you can just "get over." Each time you flare, it's almost like going through the stages of grief all over again. I once heard someone define healing with a chronic illness this way: it's not that it gets better, but your bad days aren't quite as bad and they don't come quite as frequently. It helped change my view a bit and to accept that my 100% isn't as much as others' 100%. But you DO have worth and value, and it is okay to grieve when this darn disease brings you down. But know that you are not alone.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

noodlesnoodles
Regular Member


Date Joined Nov 2015
Total Posts : 271
   Posted 8/22/2017 8:08 PM (GMT -6)   
I'm not sure if this kind of thing is your jam or not but I'm reading a book right now that I've found really helpful:

Young, Sick, and Invisible - By Ania Bula

The author has Crohn's as well as rheumatoid arthritis and she writes about how others have reacted to her chronic illnesses and what motivates those behaviors and what the chronically ill can do in response. I've just enjoyed it immensely so I thought I would share it.
28 year old female
Issues began in July 2014
Capsule endoscopy in late March 2017 showed "suspected Crohn's Ileocolitis"
After colonoscopy on April 14, 2017, was officially diagnosed with Ulcerative Pancolitis (w/ backwash ileitis)
Current meds: Apriso 4 x daily, Prednisone 30 mg, Canasa 1000mg suppository nightly, B12 injections monthly, 50,000 IU Vit D weekly
Started Remicade July 11, 2017

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9921
   Posted 8/23/2017 6:13 AM (GMT -6)   
I've found most people to be utterly uncomprehending when it comes to having Crohn's, depression, or anything else which isn't about them. If we are lucky, we might have a parent, a spouse or perhaps a friend or two who tries to understand, but if you don't even have one person in real life then it must be very, very tough. Most 'normal' people simply do not have the patience or empathy required to deal with a chronically ill person. (But that doesn't stop normal people from moaning about their cold and how awful it is, whenever they get one.) If you want to experience what it's like to be a leper, be visibly depressed and watch people melt away from you, as they sense the misery emanating from you.

I try not to feel angry about it anymore, as there is literally no point. If you have bitten your tongue for all these years, then a cathartic 'f off' to the next person to tell you get over it might be a worthwhile exception to the rule: at the least, they will be more likely to leave you alone in future and avoid saying inane things.

On a slightly more positive note, it may also be helpful to find the nearest Crohn's & Colitis support group to you and meet with people who have Crohn's in real life.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

BETTY SUE
Regular Member


Date Joined Nov 2015
Total Posts : 221
   Posted 8/23/2017 8:33 PM (GMT -6)   
I don't think it is EVER a "Get over it" possibility but for my son with Crohn's he has decided that it is not "How can I get over it" but rather "what keeps me going ." For him it is his girlfriend, his internship (he is a student) and trying to focus on what he CAN control - (like his thoughts) and not what he cannot control. But there are certainly days of anger and despair...!

mirowpl
Regular Member


Date Joined Nov 2009
Total Posts : 456
   Posted 8/23/2017 8:41 PM (GMT -6)   
welcome to the group! we definitely get it and we are here to support you. I just had my second resection people always tell me I am the best looking sick person they have ver seen. they just don t get what we deal with every day

come back often for support

SpikeX77
New Member


Date Joined Aug 2017
Total Posts : 2
   Posted 8/23/2017 10:38 PM (GMT -6)   
NiceCup .. some good words there, couldnot have said it better I don't think, I've never been good with words makes it harder to explain things sometimes...
Been up a lot lately thinking.. I think my biggest problem is keeping it a secret, other then my wife (been living common-law for 15 years) no one knows.. how open are you people about it?

and yes.. I hate being thee healthy looking sick guy.. it's what people always say too "oh, your looking good" grr..

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15093
   Posted 8/23/2017 10:42 PM (GMT -6)   
I hate that attitude of "get over it". People really do not understand how difficult it is to live with a chronic condition. I am sorry you feel so alone. We are here for you. The support group suggestion could be a good one. Feeling normal, that's a tough one. I think Betty's ideas are good, work on doing things that make you happy and forget about the status quo.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 1000
   Posted 8/24/2017 2:09 AM (GMT -6)   
Welcome Spike! We definitely "get it" here! I am pretty open with people about my health issues. It can be hard at times, not everyone gets it but I don't think i could have survived without being open about it. I've made some really great friends and strengthened/deepened a lot of old friendships because of that openness. You find out that a lot of other people are struggling too and it can be really rewarding sharing each others experiences. It also relieves a lot of the anxiety and fear about keeping a secret. If I had tried to keep it a secret I think that would have used up the little energy I have during a flare. you learn who you can talk to and who its best to not discuss it with through trial and error.
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