A ridiculous rant...because I should be grateful

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Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 11/4/2008 4:51 PM (GMT -6)   
But I can't help being in sort of a funk about this. I went over to our health fair this morning and they had all sorts of different test you can take. So my blood pressure is very low, my cholesterol is very low, my blood sugar is low, BMI low, body fat in moderate range, and hardly any skin damage...which for 49 yrs. old isn't bad at all. I'm not taking any meds except for the Remicade, but really I think to myself, why? I'm sorry if it sounds selfish, but I've always prided myself on taking such good care of body and now I'm injecting a high powered med into my body to keep me in remission. I know my choice of med is exactly...my choice. Why did my body turn on me when I've been taking such good care of it? My boyfriend says I'm lucky that I don't have anything else to go along with taking the Remi and he is so right, but geesh. Okie dokie, I'm better now. Thanks for listening...only you folks would understand!
Carol

Remicade - will have my 25th infusion on November 26 
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 11/4/2008 5:09 PM (GMT -6)   
Carol,

I think many of us could write a book on this subject. And what irked me more than anything when I had UC were the volumes of people who thought it was a food disease. A young woman I work with was diagnosed with UC last week. Like many of us; she is smart, watches what she eats, exercises regularly, and takes good care of herself. All I can say is that we are genetically coded to get the disease and no amount of planning, intervention, or lifestyle choices could alter what eventually was going to be borne. It's a horrible disease and unlike many others it's not preventable.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 11/4/2008 5:13 PM (GMT -6)   
I'm perfectly healthy except for my colon too. It is frustrating to think that I went for 32 years of my life being 100% healthy and now this! It's also hard when I come from a very large family, my dad has 22 cousins, who are all perfectly healthy too. I hate to say "why me" because it's so unfair to think that I am more deserving than other people.
Female, Age 37
 
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03
Diagnosed with UC 2/03
_____________________________________________________________
Current Meds:
75mg 6-MP
Entocort
Cortenema as needed
Ferrex Forte
Acidophillus
Sacchromyces Boulardii 


sgtpeper
Regular Member


Date Joined Nov 2008
Total Posts : 87
   Posted 11/4/2008 6:31 PM (GMT -6)   
I agree. Its very frustrating. I have a thyroid problem as well which is simple. But UC is really a pain - literally. I just keep thinking wow I'm only 27 years old and I have this. I keep hoping that it doesnt progress to being worse than moderate.

At the same time I am so unbelievably thankful that I don't have something like cancer or something that completely keeps me from being able to work and live my life.

Yes UC is miserable but it could always be worse. ...MUCH worse

Jeff

bokscarracer
Regular Member


Date Joined Sep 2008
Total Posts : 152
   Posted 11/4/2008 7:47 PM (GMT -6)   
well put jeff. watched 60 minutes the other night and a guy with lou gehrig's disease was on there. he communicates by using this sensor stocking on his head and it reads his brain waves to discern what letter he is thinking about. it takes it about 20 seconds to figure out which letter he wants so you can calculate how long it would take to complete just one sentence. i would have to say that even if the worst happened i would rather have a poop bag at 27 years of age than have to live the rest of my life like that. i commend him!

Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 11/4/2008 8:43 PM (GMT -6)   

Carol,  I know exactly what you mean about being on meds.  I've always led a healthy lifestyle and it seemed like a big slap in the face to get a disease like this when I eat better than a majority of people.  If you're interested in persuing remission through natural means, can I suggest the spinach-sunflower thing that's been discussed on this site?  I've been doing it for just over a month and I've had tremendous results.  Since my diagnosis there has not been one single medicine that helped me (my next step was going to be Remicade and I was determined to avoid it).  I'm still on meds but just recently started to taper with no problems.  I just thought I'd mention it, since you seem to feel the same way I do about being on medicine.  My goal is to be off meds by January '09.


Katie, 30.   Chicago 'burbs.
DX:  Pancolitis as of 9/08 (Proctitis as of 1/08)
Current Treament:  Asacol 1200 MG 2X daily, Iron 325 MG 2X daily, Zoloft 50 MG daily, Multivitamin.
Diet/Exercise:  Spinach/sunflower and low-residue.  Yoga, walking, cardio.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Rowasa, Bentyl, Cortenema.
Status:  Heading to remission???
 
 
 
 


ucwarrior
Regular Member


Date Joined Jul 2008
Total Posts : 298
   Posted 11/4/2008 10:15 PM (GMT -6)   
I know what you mean. My once very healthy wife has recently been diagnosed with severe Arthritis at only 26 years old. She is on prednisone, methyltrexate (a chemo like drug), prescription strength naproxen, enbril shots every week, and vicodin. I used to babble to her about my Achilles heel of UC being unfair, I don't say a word now.

I feel so helpless to aid her and did not realize how debilitating RA is and the aggressive treatment required to keep her from being crippled. I now keep my meager poo stories to a minimum.

quincy
Elite Member


Date Joined May 2003
Total Posts : 30705
   Posted 11/5/2008 12:35 AM (GMT -6)   
I understand as well....yes, be grateful and remember that it's not an all or nothing disease.


You might want to remember how you got to the remi and how you were then....that might give you the reason you're on it.

hang tough....things always suck depending on which side of the fence we're looking in from

It's awesome you got such a good report....considering you're such an old bag  rolleyes   shocked
 
q


*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 11/5/2008 8:24 AM (GMT -6)   
I'm sure we all do the why me's. I know I have! I am the only one in my family that has this as well as other auto immune issues so I think about it often and wonder why I got the grab bag of "goodies". Now mind you, I didn't live a healthy lifestyle like you and in fact I was the complete opposite. But noone, regardless how you live, should ever have to suffer with this horrible condition. But I imagine it was a very hard slap on the face for anyone to think they are doing right by their body only to have this. Vent away all you want - it's not too often you do that on here so you're entitled :0)
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
To help Healingwell - click here: DONATE
 
 
 
 

 
 


madabs
Regular Member


Date Joined May 2008
Total Posts : 388
   Posted 11/5/2008 8:52 AM (GMT -6)   

Carol,

I couldn't agree with you more.  I could rant about this as well.  I am in my late forties too and have taken good care of my body and considered myself quite healthy when I was diagnosed.  In fact I refused to acknowledge my UC for a long time because I thought it would go away on its own if I just continued on with my healthy lifestyle. (ha ha)

It's a pet peeve of mine because I think we have been Totally Misled by the media and certain healthy guru types to believe that we have much more control over the fate of our bodies than we actually do.  Yes, we can improve our health through diet and exercise, but no amount of healthy living can guarantee our body's freedom from disease.   


UC diagnosed 10/05, first symptoms 1983
asacol 12/daily and rowasa as needed 
Trying out Culturelle Probiotic
past rx: colozal, lialda, canasa
i can't complain, but sometimes i still do.  lifes been good to me so far.  -joe walsh


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5968
   Posted 11/5/2008 9:14 AM (GMT -6)   
     Speaking of healthy lifestyles.  My friend just lost her husband of 40 yrs.  He was only 63 yrs old but suffered with Lymphoma for ten years.  Never fully enjoyed much of a remission during that time.  Here was a guy, who in his younger years up until he got sick was a health nut.  His wife said he wouldn't eat it if it weren't green, exercised daily, took vitamins, etc.  His wife, on the other hand, is healthy as a  horse.  She eats junk food, never exercises, other than taking the dog for a short walk, drinks her beer (not an alcoholic, but enjoys a few a day).  So there ya have it.  Must be in the genes.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 11/5/2008 9:20 AM (GMT -6)   

Thanks for the replies everyone...and especially for giving me the opportunity to let my emotions out. Sometimes it just needs to happen. I know there are many people who are worse off than me; lordy knows I've held many hands in my life through traumatic issues and illnesses and I have a wonderful mother who always instilled "there was a sad man with no shoes until he saw a man with no feet" but I suppose I just needed a bit of a pity party. I went to see my GP yesterday afternoon because I already had an appt. with her and we chatted about several things, this included. She is so wonderful, and also my boyfriend...incredible. So I know it's okay to get ticked at your body every once in a while and I have a feeling as I get older (yeah, old bag syndrome!) I may experience this more often! Yikes, watch out everyone. I feel much better today and I'm back to my old self again. You are all terrific and I thank heaven for the support all of you give to me each and every day. Mudua, I love the verse from Joe Walsh...one of my favorite songs! Take care everyone and have a really terrific day.

 


Carol

Remicade - will have my 25th infusion on November 26 
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 

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