Does anyone have a similar outlook on their disease?

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

Berkeley5
New Member


Date Joined Oct 2009
Total Posts : 5
   Posted 10/13/2009 12:23 PM (GMT -7)   
I had a meltdown last week and told my Dr. that he can cut out the Crohn's disease anytime he wants. I have tried to keep the "I am just learning a new way to walk through life" mentality but it is hard, really hard. I often feel alone and sick of pioneering through this disease...

I try not to think about what I once was able to do as I have never actually felt like a normal healthy young woman. My flares date back to early middle school and watching what I eat, nausea, and constant fatigue have been an active part of my life.

I will share with you that I have severe Crohn's and was diagnosed 7 months ago; I am currently not responding to Remicade and was told to stop Pentasa as it is a "waste". I have received 4 steroid injections for severe flares and take plenty of supplements, in hopes to help aid healthy healing.

I am a full time graduate student (at an academically demanding university), worka 35 hours a week, am involved in numerous activities, and am practicing yoga 3 days a week...living life is possible, I have promise. I can't say that I go to bed tear free or even feel good (I often feel nauseated and fatigued) but I push through it because I am determined to walk through this experience...

Do any of you have similar schedules? Outlook? Similar drive? I would love love love to hear about similar stories!

littlemissmuffet
Regular Member


Date Joined Feb 2009
Total Posts : 269
   Posted 10/13/2009 12:40 PM (GMT -7)   
I have moderate to severe crohns. I am on infliximab, have never got into full remission. I still have mini flares. I work full time, go out for meals, go to the gym twice a week. Love clothes shopping and reading. See friends on Saturdays and go out for the afternoon most Sundays.

I have to be really bad to let crohns stop me.
Diagnosed 2005.  41 year old female living in UK
 
Current medication  -  infliximab infusions, ranitidine, ferrous sulphate, Vitamin B12 injections.


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 10/13/2009 12:51 PM (GMT -7)   
There are times when I have to slow down, but for the most part I refuse to let Crohn's stop me from doing anything. I have raised 2 daughters, been married for 24+ years, worked part-time, been active in all of my daughters activities when they were younger including coaching and PTO. Now I go out with friends, am part of a book club, exercise, cook, sew, garden, shop (way to much!). But I know my limits. My Husband and I went for a bike ride this weekend. When we came home, he went out to do some yard work, I came inside and took a short nap!

You just need to know when you are pushing yourself too hard. It sounds like you are VERY active, which is good. But if you are sick and not giving yourself any time to heal, you can't get better. Just be gentle with yourself. A Crohn's diagnosis doesn't mean you can't do all the things you want to in your life, it just means you might have to work around some complications and be a little slower getting to the goal.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Berkeley5
New Member


Date Joined Oct 2009
Total Posts : 5
   Posted 10/13/2009 4:30 PM (GMT -7)   
Suzanne,

Thank you for sharing--- you are right, I do need to listen to my body and rest when I need too. I am currently working on that although it is extremely hard to change my old habits. I feel like my current opportunities, especially what is offered through school, will fly out the window never to be seen or heard of again. Making me almost feel like if I don't participate now, then I will never have the chance to again. Silly right?

I am sure that your husband is supportive, did it take him a long time to understand the disease? A lot of explaining on your part? Were the resections your choice? Or more because there was not the type of medicines for Crohn's as there is now?

Thank you!

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/13/2009 5:35 PM (GMT -7)   
Berkeley,
Honey, just do not crash and burn. Some of us found out the hard way and are still paying for it.
Navy
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Nebraskagirl
Regular Member


Date Joined Apr 2009
Total Posts : 47
   Posted 10/13/2009 5:58 PM (GMT -7)   
I feel your pain. I have not been offically diagnosed yet been on lots of meds from M.D. But I to find it gets the best of me and do cry alot in private. I raise 3 teenagers alone, work for a ob/gyn 45+ hrs a week, then kids have after school sports and practice ect. Now its 9.00pm still in nursing scrubs, im so tired and sick I just want to go in my bathroom and cry. I envy everyone around me, I even find it hard to watch my only family enjoy the food I cook and cant eat.. I have learned as like you have a family and they need us so much that we have to just push through it day by day. Everyday is a new challange and most everyone that sees us has no idea the pain that we go through. But we are needed and we need them so we dont have a choice, we have to fight!! You sound like a very strong person, and I have no doubt you will push through this. Sights like these are also healing to know that we are not alone in our pain..

MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 10/13/2009 6:09 PM (GMT -7)   
My outlook is....it is what it is.  I have this disease, it is not going away, ever.  I feel no pitty for myself nor do I want anyone to feel pitty for me either.   I do what I can do when I can do it....and when it gets to be too much for me to handle I take a break.  I cry myself to sleep some nights, and other nights I smile as I drift away to sleep knowing how lucky I am to be alive.  Its hard, and I tried to be strong for so long then I realized it's not only ok but necessary to break down at times.  Your doctor can cut out the disease in your intestines...but the chances are it will come back, thats something we all need to accept and understand.  I was diagnosed when I was 16, within 6 years I've had 2 resections and 5 other surgeries related to this disease...I'm currently waiting for my next surgery (Nov 13th) to repair an abdominal fistula I've had for over a year now.  I work 32 hours a week, and would work more if my job could afford to pay me for being there more.  I balance my life, job, boyfriend, and our baby (a 5 month old yorkie lol).  I've had 3 weeks of remission (completely symptom free)  in the 6 yrs I've had this disease and I would do ANYTHING to feel that amazing again.


Dianogsed with Crohns: At 16 years old. 22 years old now.
Surgeries:2 Bowel Resections, Gallbladder Removed, 3 Abscess Cleanings
Current Meds: Cimzia, Methorexate, Vitamin B12 (injections), Nexium.
Next Surgery: Sept 4, 2009 to Take Down Abdominal Fistula!!  (On hold until current flare is under control, boo!)
 

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/13/2009 6:17 PM (GMT -7)   
Without wanting to sound harsh, wait until complications and secondary illnesses develop and lead to further disability, and life might start to look quite different for you.

"Drive" will only get you so far.

I really do think there's a danger in attributing your ability to do things to your own personal qualities, be it energy or ambition or drive or whatever. If and when you do fall into severe incapacitation, you are then more likely to blame yourself and your own personal deficiencies, rather than as see your incapacitation as a result of a collapse of your health.

Just my 2c.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


cayer
Regular Member


Date Joined Jan 2009
Total Posts : 76
   Posted 10/13/2009 7:49 PM (GMT -7)   
My week involves taking care of my 2 year old full time, running our business paperwork and all the other stuff and teaching Martial Arts at nights and weekends if we have fight shows. When im not in a flare I will fight in the ring myself and will always have little things on the go, see friends and family, crafts, go do random things with the family or fix up the house and gardens etc but when I'm in a flare my work week stays exactly the same because we have to, we need the money. The things that change are everything else, I cant fight and train so instead of filling my day with bits and pieces of visits or activities I just sit in front of the Tv with a blanket, hot water bottle, pain killers and rest.

I constantly wish I could just go for a run or see people and get out but because my week is so demanding physically with the martial arts (like sparring people and getting kicked in the guts isn't fun) but I know I need to just work through the flare because life will eventually get back to normal.

I have learnt to be really selfish when i'm flaring which helps my happiness and by that I mean when i am fatigued and exhausted I will say no to everything I don't want to do even if it is something like a family gathering (cause you know some of those things are just plain boring) and I might instead use what energy is there to go to the movies...I don't feel guilty anymore like I used to. My family and friends are so understanding and just tell me now when things are on and if I go its a bonus...they realise when I'm well they get the normal me and get on with there lives.

I am a really positive person and its easy to get dragged down with this disease so being more selfish has helped me heaps and believe me I have only just started being like this the past year and i'm much happier for it.
Tina 26yrs old Diagnosed in 2000 with Crohn's surgery for perianal abscess and fistulas
currently on Imuran 125mg Motillium for digestion used in the past Remcide, salofalc, pred.
Worst pain equal to child labor was after eating home made Granola...i can still hear the screams ha ha.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/14/2009 7:54 AM (GMT -7)   
Just a caution... please do not look at illness as a personal charater weakness.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 10/14/2009 1:09 PM (GMT -7)   
I have been extremely lucky. My husband and I had the same views on one of us being home most of the time with our kids, that made taking care of myself a bit easier. If I had had to work full time to support myself and my children things would not have been the same, and I know that. BUT, you can not take care of anything else, if you don't take care of YOU first.

In answer to your questions, most of the time, my husband is very understanding. He is an extremely active person, and seriously, I doubt anyone could keep up with him. So he certainly doesn't expect me to. But I do pretty well. We always have very active vacations, and I pull my weight around the house as far as the work load. I do tend to veg out at night. He will often times be off for a run or exercising, but then we will sit and watch a movie or tv later.

2 of my resections were because I was not responding to the medicines that were available at the time. The middle one was due to scar tissue. So while none of them were my "choice", none of them were emergency either. I also believe that the end result was that I was given the chance to enjoy life again. Those years were not the best. Once we found the right medication and have gotten things under control, my CD has been much more manageable.

I do believe you can have most things you want, you just might not be able to have them all in one day, or all at once. While the opportunities are available to you, it might not be the right time for you if it makes things more difficult for you in the long run. As I said earlier, you need to be gentle with yourself and take time to rest. I am a firm believer in things happening for a reason, and if you need to pass an opportunity up, there might be a better one around the corner later. smilewinkgrin
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


pillpopper
Regular Member


Date Joined Jan 2009
Total Posts : 209
   Posted 10/14/2009 2:25 PM (GMT -7)   
Berkeley5,
What helped me most was getting 7 hours of sleep every night.
Do that for a while and see how you feel...
I think we are all pretty much super active, but I think you could run circles around me.
Take your meds,talk with your G.P. along with your Gastro Dr.
B-12injections,Pentasa,Loperamide,Entocort,6mp,Hydrochlorothiazide,8 week
Remicade,vitamin-D,Terbinafine,
Remission since surgery
and 8-week Remicade.


WriterMum
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 10/14/2009 6:57 PM (GMT -7)   
I think that we all have to make choices in life in order to ensure that what we do is done fully. What I mean is that I work half-time as a kindergarten teacher so that I can give my class my full attention, and do the job to the best of my ability. This way I enjoy it fully also. I don't cook supper every night - some nights I order in or we have breakfast for supper! This way I enjoy cooking, and I can put my energy into making something that my family can appreciate on the nights that I cook. I have had to give up yoga, because for me it was depressing to not be able to go every time. Some nights I am just too tired. We bought some home gym equipment and I use my son's WII Fit! He laughs to see me use it, and we have fun together doing it. My kids go to their father's house every other week. When they are home I have to give up some stuff so that I can give them my attention. When they go to their dad's I can catch up on chores, sleep in the afternoon and make time for great sex with my husband!! I belong to a book club, but know that sometimes I will go without having read the book. My friends are fine with that, and I still get to enjoy an adult evening talking about a good book and our lives. You don't have to let the disease control you, but you can listen to your body and, as Zanne said, "Do it all, but not all at once".
44 years old. Diagnosed with moderate to severe Crohn's in April 2005. Hiatus hernia diagnosed in 2008. Had Crohn's under control until March this year when I had a major flare up and ended up in hospital. Diagnosis is now CD and IBS. Getting it under control again.
Currently taking: Prednisone 0 mg (as of this week!!), Salofalk 2000 mg, Nexium 40 mg, Calcium and Vitamin D, Matamucil, Yogurt for probiotics, Salofalk suppositories as needed.

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 03, 2016 7:04 PM (GMT -7)
There are a total of 2,732,354 posts in 301,012 threads.
View Active Threads


Who's Online
This forum has 151172 registered members. Please welcome our newest member, Whydoesithurtsomuch.
326 Guest(s), 13 Registered Member(s) are currently online.  Details
ewafromwarsaw, Psilociraptor, 81GyGuy, hateuc, Shaz032, AnxiousTexan, Girlie, rocckyd, Uniform Charlie, UCAvery, Fairwind, Ggrlsav, DutchessCountyJim


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