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Crohn's Disease Forum » Support Forum » Does the CD Cycle ever stop???


11-27-2013, 06:40 PM   #1
cca2013
 
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Does the CD Cycle ever stop???

Am I the only one who's exhausted just from the CD cycle alone?!

Starting with the flare-up...trying to get better...sadness/pity for yourself...guilt for constantly sharing your feelings about your CD with friends and family because you feel like you're annoying/boring them...and then googling anything cd related almost all day!

Then when we get "better", the cycle still doesn't end. Now you spend every moment thinking about food...restrictions with food...making sure you don't get a flare again...trying to gain/lose weight...trying to wean off steroids...research...



When I first got diagnosed 10 years ago, I wasn't fearful. I always thought of the doctor as someone who made things "go away". So I figured CD was like a broken arm; I would need treatment, then I would be back to normal...good as new!
Boy, you should have seen the look on my face after my first flare-up...6 months after my diagnosis. I didn't understand that CD was for LIFE, and that I was never going to be rid of CD.

And sometimes I just want to relax, but I can't! And it's frustrating. I'm 29 and I feel like I've missed out on so much. Just once I would love to go out with friends and drink...and not have that voice in my head or gurgle in my tummy reminding me that I can get sick. And I hate that when I get "sick", I'm just not in slippers and drinking honey tea for a week like normal people! Nope, I'm "out" for weeks, sometimes months at a time! And then when I do get better, I need a few extra months to "feel" normal again.

And I don't like the person I'm becoming. I actually rolled my eyes at a friend who was complaining about the flu. The freaking flu! But I know it's not her fault that I have CD...but it drives me nuts when my friends or family complain about a tiny cold...I WISH I could take some cough medicine and be back to normal!

And my own thoughts are my worst enemy. I stress, wondering if I will ever get married. If I will be able to have kids, let alone raise them. I can't even finish school in a timely matter!

Sorry for the rant! I just wanted to post my thoughts someplace where I could be understood. I know I'm supposed to be positive and have happy thoughts...but it still drives me nuts when I "complain" to my mother and all she says is "Be positive".
11-28-2013, 06:30 AM   #2
Axelfl3333
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I,ll introduce you to a good Scottish phrase"it's a scunner"
11-28-2013, 08:44 AM   #3
Jimena
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Omg, that was just like i was writing that all!

I hate the person i have become too! I just can't honestly have much emphaty someone who is healthy and having some nasty flu of something else "minor" (means, minor TO ME). I hate that, i am a little bitter, and cranky all the time when i am sick.

And that googling.. Zeesh..
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Severe Crohn's since 2002. Tried every longterm medicine there is, Pentasa, Azamun, Remicade, Humira...
Temporary colostomy 2013 -> Parastomal hernia
Surgery, mesh, end colostomy 2014 -> deep wounds that didn't heal, three fistulas around stoma
Colon removal and ileostomy 2015 -> So far so good

And after every stoma surgery, nasty Pyoderma Gangrenosum around my stoma.
11-29-2013, 02:39 AM   #4
cca2013
 
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Axelfl3333: Thanks! I'm going to have to use that one day! Lol! :-)

Jimena: Finally someone who understands! I thought it was just me! Even today another friend kept complaining of a bellyache from eating too much and I had to fight the urge to not say anything rude or sarcastic. Like you're really complaining of a bellyache to ME of all people?
11-29-2013, 05:58 AM   #5
Scaryman
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I thought it would stop with my right hemicolectomy in May. Who was I kidding, lol it always comes back. Problem now is I have no insurance.
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5-ASA- failed
Imuran-failed with a strange reaction-paralysis
Remicade- failed with infusion reaction.
Mesalamine-another failure
Entecourt - fail- no help.
currently on Methotrexate 25mg and Humira combo.
Folic Acid Supplement
Hyclosomine,Ultram,vicoden for pain as needed
Extended right Hemocolectomy 5/24/13 Univ.Of Chicago
11/7/13- small crohns ulcer at surgical site (active).
11-29-2013, 04:16 PM   #6
cca2013
 
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I thought it would stop with my right hemicolectomy in May. Who was I kidding, lol it always comes back. Problem now is I have no insurance.
That's the worst feeling, isn't it? The moment you realize "it" came back?

Are there any good county or religious hospitals you can go to? Usually they give free service (once you fill out forms to receive financial help).
11-29-2013, 04:47 PM   #7
Scaryman
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No I have the only hospital for me....even if it's financial ruin.
11-29-2013, 07:18 PM   #8
Stardust_Fiddle
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I totally feel the same way! I've been flaring for nearly two years now, before I was even diagnosed, and I try to have a positive attitude and remain optimistic but I wonder if the pain will ever go away, if I'll ever get remission, if I'll ever be able to eat again...

My GI doctor isn't very hopeful about my case, so I am trying to resign myself to the fact that I may never feel better. It's so difficult talking to other people because, as you all mentioned, they just don't get it. I hate talking to people who have normal illnesses that will just go away--cold, flu, etc.--when mine never will, and then I feel upset with myself for feeling that way!
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Conditions: gastroduodenal Crohn's disease; chronic SIBO; bile reflux; gastroparesis; intestinal dysmotility; hiatal hernia; hypogammaglobulinemia; IBS; chronic migraine; fibromyalgia; sensory processing sensitivity; Raynaud's; congenital cataracts
Current treatments: Humira biweekly, Azathioprine 50 mg once daily, Xifaxan 550 mg daily on alternating weeks, Omeprazole 20 mg, Cymbalta (for pain), VSL#3 Probiotic, Iberogast, Remeron, Zofran; permanent TPN
11-29-2013, 07:54 PM   #9
HannahR
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I believe it does end if we take it upon ourselves to feel better and heal the root cause. I feel like we get caught in these cycles because they have found it isn't just the immune system attacking itself out of no where but because of bad bacteria. They only use medications to suppress what is going on so bacteria can adapt and get worse especially if we eat bad and unhealthy. If we heal the root cause I believe we can really have long lasting health. The best thing is just to try to stay positive because believing in yourself is the best medicine.
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11-30-2013, 12:53 AM   #10
cca2013
 
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I totally feel the same way! I've been flaring for nearly two years now, before I was even diagnosed, and I try to have a positive attitude and remain optimistic but I wonder if the pain will ever go away, if I'll ever get remission, if I'll ever be able to eat again...

My GI doctor isn't very hopeful about my case, so I am trying to resign myself to the fact that I may never feel better. It's so difficult talking to other people because, as you all mentioned, they just don't get it. I hate talking to people who have normal illnesses that will just go away--cold, flu, etc.--when mine never will, and then I feel upset with myself for feeling that way!

Is there anyway you can change GI's? That makes me so upset to read because we are truly suffering and we rely on doctors to help us feel better.

But I'm glad there's others out there who feel the same way. People really don't get just how horrible this disease is...and the worst part? It never goes away!

I hope you feel better though! If you haven't looked into this, try drinking lots of ensure, take Vitamin D3, Calcium and B12. I received that advice from this forum and it really help with my last flare.
11-30-2013, 12:54 AM   #11
cca2013
 
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I believe it does end if we take it upon ourselves to feel better and heal the root cause. I feel like we get caught in these cycles because they have found it isn't just the immune system attacking itself out of no where but because of bad bacteria. They only use medications to suppress what is going on so bacteria can adapt and get worse especially if we eat bad and unhealthy. If we heal the root cause I believe we can really have long lasting health. The best thing is just to try to stay positive because believing in yourself is the best medicine.

Thank you for this!
11-30-2013, 03:38 AM   #12
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I feel ya. You sound like you're describing my life lol. Things get easier when you eliminate stress and find a focus other than being ill for the rest of your life but that doesn't stop the days when those efforts seem futile.

But one thing this disease does is name us all fighters were strong survivors and sometimes even need to remind ourselves how far we've come already.
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