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Crohn's Disease Forum » General IBD Discussion » Accepting that you have Crohns


03-19-2016, 12:38 PM   #1
ImDan
 
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Accepting that you have Crohns

I have a really hard time accepting I have Crohns. The only time I am happy is when I pretend I don't have it. Everytime I go to the doctor I hope they tell me it's a big mistake and I don't have it, but that's not going to happen. :/

Does it get easier?
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  • 24 Years old - United Kingdom.
  • Colonoscopy, CT Enterography and Prometheus blood test consistent with CD. No symptoms so far.
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03-19-2016, 12:47 PM   #2
Trysha
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Hi Dan
It is never easy accepting any illness especially Crohns
Take it easy and give yourself time to get over the shock of the diagnosis
You report no symptoms which is good and maybe reflective of the treatment you are getting.
Main thing is to keep it under control insofar as possible .
You will get used to the diagnosis as time goes on but not always easy to accept.
Feel better soon
Hugs and best wishes
Trysha
03-19-2016, 02:35 PM   #3
shamrock15
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Hey Dan,

It is tough. In hindsight I think it took me probably about 10 years to realize that it wasn't going to go away. I honestly believe it gets somewhat easier when you pass the point of accepting you have it and making sure you aren't going to let it get in your way.

Treatments are far superior than when I was originally diagnosed and it is possible that you will live a pretty reasonable life overall. After all that I have been through, my current co-workers would be hard pressed to believe that I have a chronic disease because it is really bad form to show off abdominal surgery scars in a school.

Don't let the disease get you down. I have posted before some of what I achieved while working through active crohn's - B.A and B.Ed university degrees, a previous 10 year career in credit banking, getting married, having my daughter, buying a home on my own, developing art skills, gaining my physical health back to the point that it no longer limits me, moving on to a second career as an elementary school teacher.

Clearly when in full flare the disease is debilitating and even crippling. I think the key to it all is to realize just how much you can accomplish in the days when you may not be feeling 100% but certainly aren't anywhere near full flare. I had to go through a lot of flares before I really found my limitations. Now with remicade those limitations are pretty much gone.

Good luck Dan, and I hope you find your balance quickly. I kick myself a little for realizing how much time I wasted feeling sorry for myself instead of getting ahead of the disease.
03-19-2016, 03:26 PM   #4
Agent X20
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Hi, Dan
Everyone's experience of crohns is different, but for myself, I was diagnosed 45 years ago and pretty much written off then, at the age of 15. Since then I've done a lot of active and varied stuff. On the negative side I have had my moments... mostly through my own stupidity and not going to the doc's when I should. If I had one piece of advice to give myself all those years ago (apart from watching my diet and stuff) it would be to avoid stress if at all possible (easier said than done).
Best of luck... and there is always lots of good advice on this forum.
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03-19-2016, 03:44 PM   #5
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I keep going through phases of feeling really angry then really sad. I hate feeling so demotivated to go out, or do anything, and I'll probably end up with depression since I'm feeling down all the time.

The chances of them finding a cure is near impossible. I can't remember hearing about any immune diseases being cured. The drugs are all bullshit, either get on a heavy course of biologics or immunosuppressants that stop you going out in the sun. Or just take the gamble of going unmedicated.

I don't think i can ever come to terms with having a disease that just deteriorates your body throughout your life :/
03-19-2016, 05:34 PM   #6
shamrock15
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Dan, it is important to remember that not all of the side effects that are possible will show up. I still canoe and fish in the summer, I cycle almost daily , my family and I take vacation in Mexico once a year. Remicade (one of the biologics) has been an absolute life saver for me and it is combined with imuran (one of the low-sun meds). They weren't even options for me in the first 20 years that I had this disease.

Fishing was one of the things that actually let me realize that I could accomplish more than I thought. I was worried about crapping my pants in the boat because I couldn't go more than 45 minutes without a bowel movement. In almost 12 hours on the water it didn't happen. Hold onto that one thing you love doing as a spare time activity and it may be the guide to normalcy that you require.

You write well, have proper grammar and spelling so you are clearly educated. You probably know that what you are currently feeling is something pretty much everyone who received bad news goes through. Give yourself some time to work through that, you need it. Then pick yourself back up.

As for deteriorating, here's my physical side. The disease hit me near the end of first year university. I went from 175 pounds to 145 in about a month and stayed there for about 25 years. It was excruciating to have a bowel movement. While I couldn't put the weight back on, I was still able to keep strength training, mind you it was very physically draining. I have endured 6 surgeries directly due to crohn's including having a temporary ostomy and having it removed. Due to malabsorption of nutrients I was not able to build muscle to stabilize my left shoulder and went through over 50 dislocations of my shoulder, and have had it surgically repaired only to have it fail again. I have gone through 3 years of anemia that was severely debilitating to the point that I had to stop almost all non-essential physical activity (60+ units of blood in that 3 year period, and almost as much IV infusion iron). Water malabsorption has led to kidney stone issues that have been my bane for the last five years.

I don't detail this to scare you with what crohn's can do to you. Chances are you have read a fair bit already and are intimidated. Fair enough.

That all happened before remicade and imuran. In the last four years I have regained my body weight, healthily, and am back at 175 pounds. I use my exercise bike for half hour periods at least four times a week and have started strength training again. In the summer I bike for up to an hour and a half averaging almost 30 km/h. Asthma that I had has disappeared. I still get tired, but I do my best not to let it impair my daily life.

I understand your reluctance towards biologics. They don't work for everyone but I think you will find many more here who have had remarkable success with them. I honestly believe that had they been available when I was first diagnosed, I probably would have only had maybe one of the surgeries and not wasted almost a decade of my life.

A little presumptuous based on your photo, but I gather you were physically active before your diagnosis. Keep it going as much as you can. It will likely take you time to regain your conditioning, but allow yourself the time. Give yourself permission to have down days as long as you promise yourself that you will take advantage of the good days that you have, and you will have good days.

Keep checking in here, bounce ideas off our membership. There is a big mental component to this disease, and if you win that battle you can have a good and fulfilling life.
03-19-2016, 05:38 PM   #7
Christi
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Dan im sorry that you are struggling im also working through allot of stuff at the moment , i do have depression. Please try to stay positive i know its not easy and keep your mind busy im always trying to keep my mind busy, i do yoga its very relaxing , i build puzzles and so on. If you ever want to talk you can pm me. I know what you are feeling and even me i cant except it yet. I am now also in therapy.
03-19-2016, 11:13 PM   #8
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I keep going through phases of feeling really angry then really sad. I hate feeling so demotivated to go out, or do anything, and I'll probably end up with depression since I'm feeling down all the time.

The chances of them finding a cure is near impossible. I can't remember hearing about any immune diseases being cured. The drugs are all bullshit, either get on a heavy course of biologics or immunosuppressants that stop you going out in the sun. Or just take the gamble of going unmedicated.

I don't think i can ever come to terms with having a disease that just deteriorates your body throughout your life :/
I hear ya!!! However, Humira has been a life changer for me. I accept that I may suffer from side effects down the road but I am willing to take that gamble for a better quality of life now while I am young. I tried the no meds route and ended up with major surgery and that was not fun. Work with your Drs a d find a treatment that works for YOU. Yes..it's BS but there is no reason you can't live a good comfortable life. After 5 yrs of Hell I am finally doing good and hoping to stick with Humira for as long as it works for me. We are hear to listen anytime. Good Luck!!
03-20-2016, 07:10 PM   #9
EvieBaby
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I was diagnosed about 10 years ago and I've never really accepted it. I go to the appointments and go through the tests but it's never sunk in that this is such a terrible illness. I've been very lucky compared to some people who have terrible problems, but only when I have a flare do I grasp how awful and debilitating it is. I just don't like to think about it too much. Life is hard enough as it is!

03-20-2016, 08:08 PM   #10
AJC - Australia
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HI Dan, I went through this….it is normal. google the 'stages of trauma'….i am a writer and have written extensively about this….it has been published in magazines…….long story short, you are getting closer to acceptance and it WILL take time. Years even. Very very hard to accept that you have Crohns…pretending you dont have it is probably a good idea, as long as you don't fall into complete denial and abuse your body with drugs and alcohol………….hmmmmm…….

these days i accept i have it, i dont take on too much and am aware of my limitations and i am in acceptance, but every 18 months or so i fall into a complete heap, thinking about how much crohns has taken from me…….that too, is probably quite normal behaviour…..

i think one thing that DID help me was to not think about what i DONT have, i.e. healthy digestion and start to look at what i DID have and being grateful for what does work, i.e. healthy brain, healthy eyes/ears/legs/arms/kidneys…skin….etc….trying to draw the attention of my mind AWAY from the one thing that isnt working and putting the energy towards the things that are working….does that make sense????

at the same time, full acknowledgement of the shitty path we are all walking. . . but it wont help to just think about how crap your guts are, that wont help you get better……what will help is to accept your guts are compromised and to tune in to them, to love them for what they are and to feed them what they respond to the best…..love your guts, massage them, breathe into them and try and feed them the good oil….get rid of sugar and work out what they respond best to….everyone is different, but sugar is toxic for everyone, regardless of crohns.

dont look at what other 'normal' people have and think 'it is easy for them', that doesnt help…

you are obviously strong enough to walk a life of shitsville, so you must be strong….crohns can change you in a really good way…the choice is yours…you can have an incredible life, doing amazing things….but you wont be an elite athelete….but you can do incredible things.

good luck.
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03-20-2016, 08:50 PM   #11
ronroush7
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My mother always told me there is always someone worse off than you.
03-21-2016, 06:50 AM   #12
valb
 
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My mother always told me there is always someone worse off than you.
I tell myself that everyday however I think we are entitled to feel sorry for ourselves from time to time. I hate when people compare what I have to something worse. Well at least you don't have cancer!!! I am actually worse off at times then "some" with cancer!! To each their own I suppose. I do appreciate the times I feel good!!
03-21-2016, 09:30 AM   #13
Eridon2002
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Dan-I think there is not one among us who have not had a problem accepting our diagnosis. Some come to terms with it faster and thus able to get on a regimen to make them healthier. For me it took years; in the meantime inflammation was narrowing my colon and thus lead to a resection of 22cm. I now have a temporary ileostomy and awaiting my reversal surgery in a couple months. In the past I had actually told my GI doc that I refused to accept that I will have to be on medication for the rest of my life. I've changed my tune after my last horrible flare that lasted months and lead to the resection. I will be starting on Imuran(aza) after my reversal surgery. I think it gets easier when the main focus is just to do what you have to to make yourself as healthy as you can. The right mix of meds, healthy food, exercise and stress reduction are all critical. The goal is to have a happy fulfilling life which can be done even with Crohn's!
03-21-2016, 04:46 PM   #14
DougUte
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I keep going through phases of feeling really angry then really sad. I hate feeling so demotivated to go out, or do anything, and I'll probably end up with depression since I'm feeling down all the time.

The chances of them finding a cure is near impossible. I can't remember hearing about any immune diseases being cured. The drugs are all bullshit, either get on a heavy course of biologics or immunosuppressants that stop you going out in the sun. Or just take the gamble of going unmedicated.

I don't think i can ever come to terms with having a disease that just deteriorates your body throughout your life :/
I hear ya too Dan. Having such a severe chronic illness is not fun. I was only diagnosed in 2010, but I know I had symptoms of Crohn's for years before I was officially diagnosed. Needless to say, I was not being treated for it at that time. Within 3 months after diagnosis I had to have 3.5 of bowel removed. You know about your disease and are in a spot to hopefully prevent something like that from happening to you. I really would not do the no medication route.

I have been on Humira for coming on 5 years now and I have been in remission for the last 4 of those years. Humira is the best thing I could have done after my surgery. It has kept the inflammation at bay and I have suffered no side effects. I know there might be side effects down the road, but when the decision was made to go on a biologic I decided that I should take that course because I definitely had a severe case of Crohn's that quite honestly nearly killed me. My obstruction was so tight that the opening was the size of a pea. (and the Dr's claimed I had IBS!).

You don't want things to go downhill to the point I was at. And that happened without meds.
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Increased to weekly injections on November 1st, 2016
Due to the insurance company, Humira ended on January 31, 2017.
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03-21-2016, 06:56 PM   #15
valb
 
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I hear ya too Dan. Having such a severe chronic illness is not fun. I was only diagnosed in 2010, but I know I had symptoms of Crohn's for years before I was officially diagnosed. Needless to say, I was not being treated for it at that time. Within 3 months after diagnosis I had to have 3.5 of bowel removed. You know about your disease and are in a spot to hopefully prevent something like that from happening to you. I really would not do the no medication route.

I have been on Humira for coming on 5 years now and I have been in remission for the last 4 of those years. Humira is the best thing I could have done after my surgery. It has kept the inflammation at bay and I have suffered no side effects. I know there might be side effects down the road, but when the decision was made to go on a biologic I decided that I should take that course because I definitely had a severe case of Crohn's that quite honestly nearly killed me. My obstruction was so tight that the opening was the size of a pea. (and the Dr's claimed I had IBS!).

You don't want things to go downhill to the point I was at. And that happened without meds.
Sounds much like my story/ history! Good luck.
03-22-2016, 04:23 PM   #16
Tubes
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I'm in my 22nd year with Crohn's and was really Postive for the 1st 8 to 10 years once I needed surgery it went downhill fast all my doctors told me a couple weeks to maybe a month tops of feeling crappy post surgery and then I'll feel better than ever but that never happen I kept feeling worse and worse which led to more and more surgeries.When my J-Pouch burst that destroyed me it was hard to be Postive,I had more surgeries felt worse and worse it was easy to be down and that's actually what I did,it wasn't till a couple years back when I fully realized this wasn't going away and I gotta just deal with it,some days are harder than others.My main problem is just going to the doctor all the time.
03-23-2016, 06:54 AM   #17
towlsmoke420
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It most definitely gets easier. You will learn and adapt with ease. I too was once like you and I've accepted this disease. At times I am grateful as it has made me more conscious about my health. It may take some time but you will be happy to the point where you will forget you even have crohns.
03-23-2016, 06:55 AM   #18
towlsmoke420
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It will get better and you will live again
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