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Crohn's Disease Forum » Support Forum » Accepting your quality of life


09-09-2013, 09:57 PM   #1
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Accepting your quality of life

I know remission is supposed to make you feel the same quality of life as those without crohns.
but realistically what do you choose or have no choice but to handle?

I parents are often fussing me regarding my quality of life and expecting the doctor to do more to increase my quality of life.

I agree with them in some aspects I do deserve more but this is a chronic incurable disease I guess I just feel resigned to deal with day to day troubles of this disease.

But when do you say enough is enough.
09-09-2013, 10:08 PM   #2
afidz
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While I was in remission, my life was normal. (in the crohn's sense, still had other health problems) But I know this is not true for many. But you have to come to terms with a new normal and learn how to work around it. Yes, it does suck, but thats really the only option. I think having a good attitude in general helps.
As far as when enough is enough, last January I literally woke up decided I was sick of my health not letting me go to school and went up to the college and enrolled. I chose to take my life back. This may not be so easy for everyone, we all have a lot to deal with, some more than others. But I think in a sense there is at least a little bit of control that people can take back during periods of improved illness or remission.
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Crohn's since 2007
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09-09-2013, 10:22 PM   #3
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Thanks for your reply! I am very much the same when I want to be I am very stubborn and decide no matter what crohns throws at me I will cope and still complete my dreams! Im in my second year of university (its taken me longer than all my friends but it will mean more to me when I graduate!)

But what im really interested in is what people have began accepting as their new "normal"

Im battling my crohns at the minute trying to find a balance because I cannot handle many foods without being in immense pain! But I have also started to notice my body aches a lot more and I was thinking I could deal with the body aches if I could eat without pain lol n then I realised once I could eat normally I prob wouldnt be satisfied dealing with the lesser pain either! Haha

I dont know just curious if people become accepting or just fight harder for better meds
09-09-2013, 10:43 PM   #4
Justanothercp
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Novice: Wow, great question!
I realize it must be different for everyone. But, for me, if I can get up walk the dog and make it through the workday, I consider it remission. Meanwhile, I'm still dealing with a certain amount of discomfort, ALWAYS have to watch what I eat and battle with fatigue. That is my remission. And I won't complain about it, I'm happy with it! I don't think I ever have days when it isn't a part of my day.

It took me a long time to accept this new reality. But, I've realized I'm actually quite lucky, many people have much more to bear.
09-10-2013, 01:21 AM   #5
Jennifer
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I dont know just curious if people become accepting or just fight harder for better meds
Both maybe? I'm always down for better meds. I'm not sure if 100% acceptance is possible as I still have the, "why me?" issue from time to time even after 22 years.

Its hard to say what the new normal is for me because I was diagnosed when I was 9 years old and pretty much grew up with it. I have a basic understanding of what normal is such as not having any illness at all yet even while in remission I'm not able to feel completely normal. The reason being is because I continue with regular testing, doctor visits and also take maintenance medication to stay in remission. I did a good job of that for a while but now I'm in another flare after a 14 year remission and I feel like I'm starting back at square one.

I do my own research on the different meds out there so I'm more informed when I see my multiple doctors. I guess having Crohn's and other illnesses IS my new normal yet I'm able to still keep some level of control over my treatment by keeping myself informed which I wasn't back when I was much younger. Now when I see my doctors I'm not confused and as scared as I was in the past. I guess that is acceptance. I don't have to be happy about it though.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
09-10-2013, 04:43 AM   #6
Aphrodite_x
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I think I am currently in the process of getting used to my 'new normal'. Before this flare up, you wouldnt even really know I had CD. I ate what I wanted when I wanted, exercised every single day, went out until all hours of the morning dancing, enjoyed an alcoholic drink, loved my job etc.

Now, I barely eat at all except one meal a day at dinner. And it has to be a small portion, if its not, I get the most horrible headaches. I'm tired most of the time, dont have the energy to exercise, which I really miss. Havent had a night out or a good drink for over 6 months now, I'm too scared in case I have another flare.

I'm going to gradually start adding some things back into my life and see how I manage. Its just getting the energy to do it.
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09-10-2013, 07:55 AM   #7
Clash
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I think it all depends on your definition and your GIs definition of remission. If your GI is going by clinical remission(ie normal labwork and reduction of symptoms) then there could still be low level inflammation with effects such a malabsorption(so possible vitamin deficiencies that can cause fatigue, joint pain, etc).

If you are able to achieve deep, stable remission you might find that your life is not affected by CD. Deep, stable remission would include full mucosal healing, histological remission(absence of inflammation at the cellular level) and endoscopic remission(no visible inflammation) usually isn't as easily interrupted. You could still find your self with issues since there may be scar tissue and that can also create problems such as malabsorption, pain, issues with bm. Scar tissue can be addressed with different types of surgery though.

Parents are big on "quality of life" with their kids treatment plans, I know I am. And maybe I am a little over zealous, it is hard not to be, when it comes to your child. But I would want to know if I was pushing too hard so you may want to discuss your concerns with your parents, if it feels like pressure on you in some way then the stress of that can cause problems as well, kwim?

Good luck with school!
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09-10-2013, 01:29 PM   #8
Ihurt
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I have not been diagnosed with crohns disease, but I have been suffering GI issues for 2 years now. I do not know what I have. I also have other health issues that effect my quality of life drastically though. I can honestly say that I do NOT remember what it feels like to be healthy and not in pain. Everyday I have pain.

I cannot really say I accept my life the way it is, I mean but at the moment, I have no choice but to roll with it. I will never accept being sick. I mean in other words, I will keep trying different stuff until I can hopefully find something that will work for me. To me, accepting is giving in and I cannot do that. I remember one doctor telling me I should stop chasing for a cure and just accept that this is my life. Well, I left that doctors office and never looked back. Sorry, I will not give up on myself! I mean I may not find an anwer or help, I don't know, but if I stop looking and chasing, then I definitely will NOT get any better or any closer to being well, that much I do know. There is NO doctor out there that will " really" put in the effort to get you well, we have to do that ourselves. I have learned that much from being chronically sick this last 10 years.....
09-10-2013, 02:16 PM   #9
Jennifer
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I wish I could send you to my doctors Ihurt because they are the types who will put in the effort to get you well. I'm sorry that it seems that many of your doctors have given up. Not only do we have to look for new treatments out there be it medication, diet etc, but we also have to constantly find the best possible doctors for us. Some paper out there may say that they are the best doctor in the entire world in their field but that doesn't mean that they are the right doctor for you. Keep looking and if you're interested in traveling, I know of some great doctors in my area.
09-10-2013, 02:24 PM   #10
Ihurt
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Yes Jennifer, you are absolutely correct. And I have seen some of the supposedly "best" doctors in the top hospitals here in Chicago IL. So much for best doctors!! Thanks for the support and if I don't get anywhere here I may just take you up on your offer with referring me to someone out there. I would have save up some money to travel to California though. I hear it is beautiful over there!







I wish I could send you to my doctors Ihurt because they are the types who will put in the effort to get you well. I'm sorry that it seems that many of your doctors have given up. Not only do we have to look for new treatments out there be it medication, diet etc, but we also have to constantly find the best possible doctors for us. Some paper out there may say that they are the best doctor in the entire world in their field but that doesn't mean that they are the right doctor for you. Keep looking and if you're interested in traveling, I know of some great doctors in my area.
09-10-2013, 06:20 PM   #11
Axelfl3333
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I,m hoping I,m in remission just now because I feel pretty good,but I feel there's an elephant in the room and may be for a very long time.i,m carefully with food which I know sets me off,alcohol wise I drink socially avoid lager,cider,heavy most of them have hops,barley if I ever touch them do me a favour and shoot me it won,t be pretty,so my new normal is guarded like many people on the forum.
09-11-2013, 01:55 AM   #12
plantluvr
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never give up even in the dark hours. theres always something to fight for. it been a lonely rd but i never stop fighting. im out of remission. had alot of drstic change which is making me flare. the best place for me is the peaceful quiet mts. so much healing went on. wish i was still there. but i have to accept this. i try many things and keep a open mind. disability since 07. very hard but i had to accept it and keep moving forward. just know it is not impossible . i keep living for family and friends. good communication is essential. i am working on it. havent got the dr thing down. allergic to so many meds. but natural healing has done alot of good specially with food. ive been sick since i was 4. i still manage to smile that's good enough for me.good luck to you.big hugs
09-11-2013, 03:24 PM   #13
YJ120
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Great question! My crohns has really affected my quality of life lately, I have no social life because I'm too tired to move! I just about get through work but have had to see Occupational health and am now going to get redeployed so am going to be moved from a job I love. It's stopping me conceiving. My husband and I bought a house a few months back and whilst everyone is working on it I am just led on the settee with everyone joking that I'm the 'project manager' giving orders out. It is so frustrating lately and many times I feel I have no quality of life, but I keep trying to think positive, surely things can only get better??? I also like others try to think well I've got this disease and there's nothing I can do about it, so try to get on with it, but it's not that easy sometimes is it??
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Hospitalised & Diagnosed Nov 10 - Crohns Disease.
Started on Predisone after discharge from hospital for a few months.
Been on Mesalazine 4g a day since. Tried Azathioprine & 6MP, didn't work. Been on Budesonide in between due to flares.

MRI showed stricture on 24/09/13. TI resection done on 11/12/13
More tests colonoscopy on 28/3/14
09-11-2013, 04:15 PM   #14
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It's a good discussion, and one that gets crickets (blank stares and awkward silence) when you bring it up with the average, healthy person. This 'new normal' of Crohn's and whatever other challenges we have make me want to cry in a bucket and shake my fist somedays. My health challenges, not being able to have kids, husband having affair, divorce, starting over, more health challenges, harder to work, 21 days in hospital, filing disability, crazy infections, pain, strict diet, blah, blah. Good news is my dad is staying with me and keeps me fed when I have bad days. Other good news is only one fistula that I pray the remicade will heal, four good girlfriends who check in on me and have invited me to church, good team of docs, clean, new little condo, clear urine, bowel movements regulated, sleeping a lot. So, like many have said on this thread, the 'new normal' definitely takes time to grasp with your brain. And yes, we continue to search for better treatment and deeper healing with the strength we have. I've struggled with other autoimmune things so long I'm used to SCD /autoimmune paleo diet, no alcohol probably ten years... Nutrition is an important foundation. Reading and engaging with this forum and the remicade people I've met in my life has taught me there is always someone who has it much worse than I do and I try to keep my pity parties in check. But just knowing you guys are out there, like people on this forum have fistulas, that has helped me so much to not feel so alone and frustrated. Sending healing and gratitude to everyone on this thread. God Bless.
09-12-2013, 10:49 PM   #15
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It seems every is battling in their own right.
what I may see as my norm will be bliss for some and hell for others....

strange what we learn to live with and accept in life and I guess that all comes with age and/or years of experience, if you can call it that lol.

I dont know. Some days im ok to feel like ive aged 50 years and spend a friday night under a blanket with a good book and others im sad that I cant act my age, 22, and go out and eat and drink like every one else going through college...

it has enlightened me to see what others live with, ots reassuring that im not the only one who "puts up and shuts up" in terms of every day life.. but I am also sad to hear of some of the terrible things youve had to endure on a daily basis...

I have a huge amount of respect for those of you on this forum. I may use a lot of my posts to vent and moan. But I appreciate the knowledge and the empathy shared among everyone. I never would wish thia disease on my worst enemy but I am glad to be apart of such a caring community of people.
09-13-2013, 10:28 AM   #16
Jison0612
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I try not to think about it to much everybody has there battles to fight and this is ours. I just thank GOD for my wife and my family I swear there the best medicine ever!!!!!
12-31-2013, 10:05 AM   #17
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Hey thanks so much to everyone on here, it is encouraging just knowing there are others experiencing similar but not giving up. The honesty and perseverance in spite of horrible disease is inspiring. I don't think we should have to put up or shut up though. This is a hideous evil disease and I would not wish it on anyone. I am 25 working full time in a new town and just bought my first home. It makes me incredulous that I am doing this in spite of feeling sick so much. I am shocked that this becomes our norm. Most people roll around and moan if they get sick but we soldier on. I am amazed. Anyone else flabbergasted also?
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January 2014, stopped Anti-MAP & left CDD
Feb 2014 two strictures and severe perianal disease.
March 2014 Ileostomy and planned Humira soon.
12-31-2013, 03:12 PM   #18
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Azaelia,
Lovely post. Sorry you are not feeling well and sending support and blessings as you keep trying to live life to the best of your ability. I am grateful to report I've been able to return to work part time and although sometimes I get an infection and have to cancel a week, I am a lot better off than I was 6 months ago.
With tomorrow starting a new year, I'm optimistic that things will continue to improve and I hope that they do for everyone on this forum, too. We are warriors and I think part of what happens to us through the uncomfortable, out of control, challenging times is that we develop an ability to sit with other people's pain in a way that makes it easier for them. At least I hope I can make the world a better place through whatever hand I get dealt. I've been thinking about something I heard recently --'don't organize around other's weakest point'.. in other words, it serves others when we can stand in the gap for them, seeing their potential, seeing them healthy, seeing them strong, but accepting with compassion where they are at. Sometimes the diagnosis and prognosis aren't good, but I guess once you accept your limited time on earth and your gratitude expands 100 fold for just one decent day, the unimaginable becomes something you handle with grace. I think we're blessed when we have a few friends that 'get it' (on this forum), a few friends that are just plain fun (even if they disappear when you're sick), a few friends that can talk about their struggles (even if theirs aren't colon-related), and a few friends that you can reminisce with about healthier times in life and look forward to healthier times ahead. And if you've got a good significant other or kids or a pet, you are charmed! Grateful for all of God's arrangements and accepting what might be called purification and humbly doing what I can for others when my energy is strong. Blessed 2014 and healthier days ahead to everyone here. We deserve peace and happiness.
12-31-2013, 06:37 PM   #19
LodgeLady
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I am never going to accept Crohn's attempt to take away my spirit!!

Let's ring in the new year with positive health thoughts and prayers. Although mine is not ringing in all that well, acute gallbladder attack! I'm still going to crawl into work with it tomorrow!

Happy New Year!
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01-02-2014, 02:41 PM   #20
mccindy
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New Normal - that is a tough one. 2013 was a bad year for me - I went from starting a new job, losing my grandmother, putting my dog down, to going into a painful flare, then finding out I had brain cancer. It all heaped up on me and Ifinally had to take a good look around me and figure out what was worth my attention. I take each day as it comes. There are good days when my belly is calm, I can eat fairly well, and my head doesn't hurt. There are bad days when I can't eat, my belly hurts, I have nausea and terrible headaches. So every day I try to view as a fresh slate. If today isn't a great day, I'll look toward tomorrow and hope for a good day. Getting through the bad days is hard, but there might be a good day coming up!
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current diagnosis is undiagnosed (possible Celiac disease)

Colonoscopy done August 2013, no evidence of Crohn's seen, biopsies done and one polyp removed.
Polyp is precancerous adenoma

(Diagnosed with a diffuse astrocytoma (brain tumor) 5/31/13.
Craniotomy with tumor resection performed July 2013. 99% of WHO grade II diffuse astrocytoma removed, MRI scheduled every 6 months to monitor for regrowth.)
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