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Crohn's Disease Forum » Support Forum » Still haven't accepted Crohn's


09-25-2017, 07:20 PM   #1
Tuff
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Still haven't accepted Crohn's

I just realized today that I'm still trying to fight and beat Crohn's. Since there is no cure, I can't beat it. I read a lot about diet, medications, treatments. I still haven't accepted that I'm going to have this for ever. Somehow I have to let go and just learn to live with it. There is no magic bullet that is going to cure me.
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Inflammatory bowel disease may more than double the risk of a serious blood clot in the legs or lungs.
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Stelara, Warfarin, calcium, Vitamins B12, D.
Previously: 5-Asa, Cipro, Flagyl, Prednisone, Aza, Remicade.
Pulmonary Embolism, DVT's, osteopenia, Peripheral neuropathy.
09-25-2017, 08:36 PM   #2
ronroush7
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Everyone is here to support you. I keep wishing i didnt have Crohn"s disease so i know where you are coming from.
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
09-28-2017, 10:06 AM   #3
Cat-a-Tonic
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Tuff, I definitely get that. I think a lot of us (all of us?) go through a grieving process when it comes to this illness, and that's not necessarily a process that stops. We grieve the life we thought we'd have but didn't. And we don't necessarily reach a point of acceptance and then stop grieving and that's that, because this illness is something that affects us every day and in pretty much every decision we make, every thing we eat, every activity we do, etc. It's ongoing. So I think the denial that you're in might be part of that grieving process. I get into denial sometimes too, particularly if I've had a few good days then I get cocky and into denial about having certain limitations when it comes to diet, I eat something I shouldn't, and let's just say that usually gets me out of denial really quickly!

I've read that when it comes to the grieving process and the stages of grief (denial, anger, bargaining, depression, acceptance), you don't necessarily do all the stages in order, you don't even necessarily do all the stages at all, or you might go back to one of the stages you've previously been in, etc. So, just because you're in denial now, that doesn't necessarily mean that you're stuck. It just means that you're grieving, and it's okay to grieve, because you're in a situation that sucks and has no way out and no end in sight. So, I'm no professional, but I've dealt with a lot of grief in my life myself, and what you've said sounds totally normal to me. Please allow yourself to grieve and feel your feelings, even if denial doesn't seem "right." And honestly, there's nothing wrong with looking into diets, treatments, etc. Wanting to improve your situation is also totally normal! It also sounds more hopeful to me than being about denial, honestly. They're always coming up with new and better treatments, and they may even someday come up with a cure, so it's perfectly reasonable to want to keep on top of that research. I think what you're doing, what you've described, it sounds totally normal to me. So please don't beat yourself up for being in denial. It's okay, I promise!
09-28-2017, 10:25 AM   #4
Bufford
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I may also add that Crohn's is both physical and mental pain. We go through a lot trying to ward off both. Sometimes its hard to look back on my life, its a plane wreck short of the runway as I stare at it with cold winds blowing through my white hair. But I look at it this way that I am alive today thanks to the doctors and my will to live.
09-28-2017, 11:00 AM   #5
Tuff
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I think what set me off is I took early retirement. This is not what I planned my retirement to look like. Not at all. I get stressed out easily, so I think in the long run this will be better for my health. I think I will get back into some volunteer work to keep me busy.
09-28-2017, 12:55 PM   #6
Guerrero
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Yes working help dont think about the disease and focus on something help. Even better if you can volunteer and help others.

Also our luck with this disease is that even if there is no definitive cure yet, it's getting more and more managable with new treatments,and many new ones are in the pipeline.
09-28-2017, 04:13 PM   #7
Cat-a-Tonic
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Tuff, volunteering sounds like a great idea! Keeping busy in some way will help a lot, I think. I work full-time, but when I'm off sick from work, I try to keep busy by crocheting. It isn't physically taxing, it's something that I can still do in a flare. And I end up with a finished product (hat, blanket, scarf, etc) that I can either keep or give as a gift, or donate to charity. I've made a LOT of hats this year and I'm going to donate a bunch of them to a group that collects hats for cancer patients. That's my little way of giving back and of feeling worthwhile when I otherwise feel fairly worthless (not that I am, but I feel that way when I flare). So volunteering sounds like a really good idea, I think that will help you in a similar way that crocheting helps me.
09-28-2017, 07:38 PM   #8
Tuff
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That's awesome about the hats, good for you! I know what you mean about feeling worthless. Sometimes I feel like I'm a drain on our health care system. I know it is costing a LOT of money to keep me healthy. I can knit, I could make scarves for the homeless for winter. There is a soup kitchen I'm thinking of volunteering at, I'll find something. It would also get me out of the house more so I won't turn into a hermit.
09-28-2017, 11:46 PM   #9
Magnolia24
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Tuff, I relate to this a lot right now... and Cat your comment about the stages of grief really resonates with the way I've been trying to think about it.
It's hard to think about anything being "forever," and I think we're used to framing hardship as something to overcome...so to know that a particular challenge is just part of me and that it will keep returning, no matter my strength and will power...it does not fit the story I want to tell myself about facing hardship and overcoming it...Rather, we have to do that repeatedly...sometimes daily...So of course we can't just accept and move on. It's an ongoing process, a relationship we are always negotiating.

Also so awesome about the hats and the idea of volunteering.

Feeling glad to have this community...We are so strong!
09-29-2017, 10:19 AM   #10
Bufford
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Retirement takes some time to get to used to, at first I still lived the hurried life of working but with time I slowed down. Today I take all the time I need and don't let myself fell rushed. I drive the speed limit, sleep in, and stay up late. I make lots of time to prepare my meals and personal needs in the outhouse and in the shower. Like others I was forced to take early retirement, I am very thankful that I worked for an employer that had a defined pension plan.
I spent a couple of years volunteering at our volunteer fire department. I did clerical duties and for a while I donned a uniform and trained with the crew. Volunteering is both rewarding and fun, as it doesn't have the same pressures as a regular job.
09-29-2017, 10:30 AM   #11
ronroush7
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I also was forced into retirement. After surgery, commuting became hard on my body.
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