New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

cathapy
New Member


Date Joined Oct 2008
Total Posts : 6
   Posted 3/7/2009 12:34 PM (GMT -7)   
sad  Hi there any & everyone.  I have a couple of situtations that I would like some input on.  First some background on my CD.  I am now 64 yo, was diagnosed at 25 yo in 1970.  First resection in 1974-second resection Jan. 2004; reoccurance of symptoms in April of '04; put on Remicade 06/04 every 3 month, now have to have infusions every 5-6 weeks.  Used to be thin(almost emaciated looking)now fat.  Now have the inflammatory arthritis part of the disease.  Also have osteoarthritis, and neuropathy in feet due to lack of B12(my 1st surgeon never told me when the terminal ileum was removed that I would need B12 shots). I eat baked chicken(no skin), no beef unless very very lean, some rice, egg, small potatoe, canned no sugar added fruit, no bread, tuna packed in water, baked fish, no butter, etc, you get the drift, mostly healthy. Had open heart surgery in April '06 for mitral valve replacement, & pacemaker in 10/06. I know lack of excercise is a big part of my problem but I do walk on my treadmill as often as the pain will allow.  I am so over the limitations this disease and the offshoots of it inflict.  I have a loving support system from the man in my life but I just get so down about things sometimes.  Read the support books, done the praying, tried it all.  Does anyone have any input, especially about the weight gain?  I am not on steriods.  Help!

pillpopper
Regular Member


Date Joined Jan 2009
Total Posts : 209
   Posted 3/7/2009 12:56 PM (GMT -7)   
I'm on B-12 injections once a month now, on remicade not as often(8 weeks) After a while my B-12 levels
get excessive and have to be stopped.I have p-neuropathy and they don"t know why.(Probally meds)
Luckly my weight is stable.(My kids used to call me skellitor)I'm sure the experts will be online soon ...
diagnosed 1981
remission until 2006
Remacade,resection
B-12,Pentasa,Loperamide,
Entocort, 6mp,Hydrochlorothiazide
Remission since surgery
and 8-week Remacade.
d since 1981(enjoy the look
on Dr's faces)


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 3/7/2009 4:00 PM (GMT -7)   
Hi Seems you have been threw alot. I have no idea how you would loose weight as you seem to be eating good now . I too have put on alot of weight and hope that soon I can get out and walk as it is icy and not wanting to fall.. your threadmill sounds great I don't have one so only exercise I get is cleaning.. how are you doing for portions size? Do you find you are hungry alot? I pretty much haven't tried much lately to loose weight but it has been in the back of my mind.. Hope you do good ,how much do you need to loose? lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


CDfreesince93
Regular Member


Date Joined Mar 2009
Total Posts : 20
   Posted 3/7/2009 4:47 PM (GMT -7)   
Ditto with the weight thing. I try not to focus on it too much - 5'4" about 190. My lowest weight before I got sick was 120. YIKES!! I really try to focus on just eating healthy and keeping the bowel quiet. Everything else is secondary. I feel well and my disease has been in remission for quite a long time although I have some minor arthritis. When I get down, I try to focus on all of the positives and how blessed I am to have a wonderful, loving husband and three great kids!!

Some of my weight gain, I think, has to do with aging and hormones and I don't think there is much you can do about it except try to eat things that are good for you. Most of it came on when I was on steroids and then had children soon after. The rest as I aged and became less active because of the arthritis. Going on a diet to me and restricting my diet would be like playing russian roulette with this disease - NO THANK YOU!

Take care,
Kim
41, diagnosed 1992 (25), resection 1993, remission for 16 years, no current meds


cathapy
New Member


Date Joined Oct 2008
Total Posts : 6
   Posted 3/7/2009 7:35 PM (GMT -7)   

Thanks to all of you who responded.  Sometimes in life, we just have to accept what is and go with it.  Since my company retired me on disability,  I can pretty much  take it easy if I want to.  My GI told me to apply & I really do believe he had something to do with getting it pushed through due to the fact that I had my phone interview with SS 1/31/06, and while I was in the hospital recovering from heart surgery, my Jim brought me the letter from SS stating I had been approved.  I guess they felt my case was serious enough, but I have been told it is unheard to get approved that quickly.  My GI told me he came on strong because if he couldnt get me away from the stress from my job, I was going to die.  I try not to worry about things, like money, weight, and arthritis, but sometimes it just gets me down, even though  I know there are people out there who have worse things to deal with than I do.  I was in nursing and used to take care of people like me, an it is no fun being on the dependent side of this thing.  I have tried the Depends route when I have to go out, but when there is an accident, the smell, and burning skin, make for a very quick trip to get home and shower.  I would rather stay home than go through that.  Thanks for caring enough to write. I would like to hear your stories and your challenges.  We are all in this together. Until the next time-bless you.


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 3/7/2009 10:11 PM (GMT -7)   
Stay strong,laugh alot and live life!
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Folic Acid, Multivitamin, Dbl. Calcium, Probiotics, Protonix, Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


cathapy
New Member


Date Joined Oct 2008
Total Posts : 6
   Posted 3/7/2009 10:14 PM (GMT -7)   
Wolfie40-I am happy for you.  I hope to be where you are someday.  Thanks for writing.

randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 3/7/2009 10:52 PM (GMT -7)   
hey cathapy. we all get down . then we come back up . not to be flippant, but have you explored anti depressants? i have heard heart surgery can lead to depression and with the problems you already had, well, you know.. and depression can lead to weight gain, its a fact. good luck and keep us posted.
randynoguts 



     http://www.geocities.com/randynogutsweb/


cathapy
New Member


Date Joined Oct 2008
Total Posts : 6
   Posted 3/8/2009 4:56 PM (GMT -7)   

Thanks Randy-you are right about heart surgery causing depression and even terrible mood swings.  I dont know why doctors dont tell these things to patients, so if they or their family members notice a personality change, it can be addressed immediatley.  I was like another person, and if my mate had not been the loving man that he is, I dont know what would have happened.  Having been in nursing myself, I knew something was wrong and I went to my cardiologist, & the cardiovascular thoraic surgeon and begged for help.  I was just blown off & told it would take "time" & this was normal.  Finally after almost a year, I changed family doctors, and on the very first visit, he gave me a name for the disorder, and even a diagnosis code for it.  He also went on the net and copied a description of what was happening to me.  He literally saved my life.  We tried different antidepressants, all of which caused weight gain, but now I am on Cymbalta only and it has really helped with the depression.  However, my training in nursing let me understand that a "pill" is not a cure all, and with the other issues I have, I still get down sometimes but NOTHING like before.  I practice biofeedback on my own, and try to be very proactive in my physical & mental health, so I guess I can safely say things are better overall.  It is just nice to share with others who have been down the CD road to vent to, not expecting a cure but just support.  Thank you so much for caring to email back.  That means a lot. Have a great week.  Fran

 


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 3/9/2009 12:47 AM (GMT -7)   
no problem... :0)
randynoguts 



     http://www.geocities.com/randynogutsweb/


HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3130
   Posted 3/9/2009 10:07 AM (GMT -7)   
Hey cathapy...another thought on the depression. I just learned that having D deficiency can cause depression. It explained a lot for me since I was very deificient and also very down. Once I got on D supplements, I started feeling better in my outlook.

As for the weight, I am a tubby chronnie. I have never been thin. I have the numbness from the neuropathy lack of B12 and from bad back issues in the past and present. I also have the beginnings of the arthritic pains. My best recommendation is swimming. Is there a pool you can use (YMCA, school with adult ed) nearby. I found the swimming helped me lose some weight without much pain in the joints.
I also went to the physical therapist for a few months a few years ago to help my back. The small exercises she gave me for 1/2 hour 2times a week had me dropping inches. Look into getting a focus on your core exercises. You don't have to do a lot, but they focus on strenghtening your stomach area which in turn helps support the rest of your body. I lost 4 inches from my waist and 3 in my hips in under two months! I also felt stronger which gave me a better outlook.
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....


cathapy
New Member


Date Joined Oct 2008
Total Posts : 6
   Posted 3/9/2009 4:27 PM (GMT -7)   
HabsHockeyFan said...
Hey cathapy...another thought on the depression. I just learned that having D deficiency can cause depression. It explained a lot for me since I was very deificient and also very down. Once I got on D supplements, I started feeling better in my outlook.

As for the weight, I am a tubby chronnie. I have never been thin. I have the numbness from the neuropathy lack of B12 and from bad back issues in the past and present. I also have the beginnings of the arthritic pains. My best recommendation is swimming. Is there a pool you can use (YMCA, school with adult ed) nearby. I found the swimming helped me lose some weight without much pain in the joints.
I also went to the physical therapist for a few months a few years ago to help my back. The small exercises she gave me for 1/2 hour 2times a week had me dropping inches. Look into getting a focus on your core exercises. You don't have to do a lot, but they focus on strenghtening your stomach area which in turn helps support the rest of your body. I lost 4 inches from my waist and 3 in my hips in under two months! I also felt stronger which gave me a better outlook.

Thanks HabsHockeyFan-didnt know about vit d.  How much is safe to take?  I have 4 ft of intestine gone.  Would I take it in pill for or injections like my b12  Tried the Y-got a mother of a fungual infection. Not any fun there.  I will keep on keeing on I guess.  Heh-some humor.  When was in middle school, I always want to me a member of a club, but little did I know I would become a memember of a club of people who understand and accept chronic poopers.  Aint life a hoot smilewinkgrin
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, December 06, 2016 11:13 AM (GMT -7)
There are a total of 2,733,563 posts in 301,135 threads.
View Active Threads


Who's Online
This forum has 151272 registered members. Please welcome our newest member, Toto'surprise.
340 Guest(s), 18 Registered Member(s) are currently online.  Details
JaSanne, marciac12, hypoHashimoto, mikeb2308, tickbite666, tickcheckguy, gibson00, Girlie, Toto'surprise, ChickNorris, pmm73, WORLD HEALING, Bobby Mac, ks1905, Namie, Traveler, Nosila, Tall Allen


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer