Needing to vent...

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Wren12
Regular Member


Date Joined Jan 2010
Total Posts : 42
   Posted 3/22/2010 3:56 AM (GMT -7)   
Hi everyone,

Sorry to vent on here but need to get it out I spose lol.

My story so far is that I was diagnosed with Crohn's in November. Not too sure what it all means anything but have damage in my duodenum, terminal ileum end ileo caecal valve.

I was put on Prednisone which I am still on though currently trying to taper off for the second time (the first time I ended up getting worse again a week before I was due to stop). I tried Imuran but only managed 4 days before I had an allergic reaction. I'm currently on 6mp 50 mg, hoping to get to 75mg soon. (Have been on 6mp for 5 weeks now).

I'm justt frustrated I guess. I have pain everyday and though I'm not always in agony, the pain always goes with that feeling that I'm going to need to 'go'. ANd therefore is very disconcerting. I can barely eat anything without pain and running to the loo and yet when I was first diagnosed I still seemed to be able to eat most things other than onions and tomatoes. SO why within a matter of a few months and on treatment can I not eat much at all. I thought it would get better.

I feel guilty as my daughter who is nearly two can't go out as much as other children. If I"m having a bad day it's hard enough as it is without trying to go out walking with the pram and a toddler. IT's just awful.

I guess what I'm looking for is an answer as to when I'll feel better or if I'll feel better. I understand that no one can really tell me this but I spose it's what we're all looking for.

Anyway, sorry to go on, I know I certainly don't have the worst case of Crohn's but it still gets me down...
Diagnosed with Crohn's in November 2009 but suffering since I was a child.

Back on higher dose of Prednisone and about to start 6mp
Prednisone and Imuran (ended up with allergic reaction to the Imuran)


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 3/22/2010 4:56 AM (GMT -7)   
Hi there
i can sure relate to not being able to alot of the things i did before
my grandbabes dont know whats the matter with nana
my daughter is 17 and has been thru hades this last yr with me but i am getting stronger and i refuse to let this dd take anymore from me
it has taken enough imho
i wish you all the best and know we are here for you
i have really bad days and good days when i have the good days
i take full advantage of it....
do you n your babe watch some silly cartoons together or do things that wont excert you too much
i believe my cait knew even as a toddler mommy was sick and we still were able to do some things together
so dont beat yourself up over this..im sure you are a great mom
lyn
Long Time Member of da Family

Crohns..Fibromyalgia,,Neuropathy...Deaf...Seizures Pyoderma gangrenosum


Co mod for Crohns...Anxiety/Panic and Alzheimers

lyn

Post Edited (Howlyncat) : 3/22/2010 6:14:07 AM (GMT-6)


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 3/22/2010 6:02 AM (GMT -7)   
Just wanted to let you know that you are NOT ALONE...as a mom, too, I have been in your shoes:( My daughter is 15 now but clearly remembers the days when mommy couldn't get off the couch or out of the bathroom:(

I hope the 6mp will give you some relief!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 3/22/2010 6:41 AM (GMT -7)   
Well there are other meds, but from my experience alone I think it takes about 3 months for crohns meds to reach a therapudic level in my body (I am a tank, so it might be less for you). That being said I think it might be a good idea for you to check out the safe food thread, because it might help easy up on the gut. There is also the maker's diet, scd, and low reidue diets that people have had success on.
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…


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/22/2010 6:44 AM (GMT -7)   
Hey Wren I don't have much more to offer, but just did want say that I agree with Navy here. Our meds, especially the 6mp can take 3-4 mos to fully kick in. With the Pred, just remember to keep your wean slow and within time things should get better. Sending healing hugs and prayers your way.
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 3/22/2010 10:43 PM (GMT -7)   
Sorry to hear your distress! I'd just remind you that children are very flexible and will adjust to your home situation as the norm for them. Do the moving quality time as you can and non-moving quality time when you can't. It's all quality time! Rob
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.


Wren12
Regular Member


Date Joined Jan 2010
Total Posts : 42
   Posted 3/26/2010 3:18 PM (GMT -7)   
Hi there,

Thanks for all your replies. Lovely to feel part of a caring community.

I"m pretty lucky with my daughter as she really is such a happy little thing. SHe seems to sense when I'm not well and will go and play on her own as long as I'm in the room with her. I just feel upset for her that I'm not able to go out all the time and I guess selfishly feel sad for me that I can't be the mum I wanted to be.

I know I should have more patience with these new meds but I guess like everyone, just want to feel better. I seem to be having another flare at the moment and can't get it under control. I guess it doesn't help that I'm on this slow taper of pred but GI is concerened that I've been on it for too long now. I've only got another week and a half before I'm off it and just hoping this flare doesn't get worse in the mean time.

It seems to be ok if I don't eat or drink lol
Diagnosed with Crohn's in November 2009 but suffering since I was a child.

Back on higher dose of Prednisone and about to start 6mp
Prednisone and Imuran (ended up with allergic reaction to the Imuran)


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 3/26/2010 11:33 PM (GMT -7)   
It's understandable the way you feel Wren... When you're in pain a lot, it really does seem like you'll never get better.... Seemed like I had felt that way for a long time...

But I'm doing really good now... :)... I still have a tendency to get wore out easily, but I'm not in any pain... :)...

So... Just giving you a bit of hope there... You can get better... :)... You WILL get better... It's just going to take some time...

Be careful about not eating and drinking... You don't want to lose too much weight... and... like with any illness, it's usually important that you still intake all the nutrients that you need... So... even when you don't feel like it, force yourself to eat something... Go on a liquid diet for a couple of days, if you must... but you need to be getting in something...

Keeping hydrated is important, too... You absolutely must drink... It's very easy for people with Crohn's to get dehydrated, and that just causes way too many problems...

It's hard, I know... But you gotta do it for your health... *Nods*
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/27/2010 6:30 AM (GMT -7)   
Celey that was awesome advice. I am so glad you are back with us, I think you might really be able to help some of the newly diagnosed to understand what they are going thru, since you recently were in their shoes too Hugs to you both!!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

elexis
Regular Member


Date Joined Feb 2003
Total Posts : 101
   Posted 3/28/2010 5:37 PM (GMT -7)   
Hello, I can also relate as well, I have had this for over 10 yrs but in the beginning I had a young child and most of my time was spent in "my throne" as I call it. HehE..My son never said anything but I felt guilty because I felt I was missing out on allot of things. My mind was on where the next restroom would be and not on how well he's starting to color...But as time went on I learned to accept Crohn's, That sometimes is very hard to do and still at times now i have on occasion my own lil "pity party" but then i snap out of it and enjoy what life has to offer me. It isn't pretty sometimes but over time it gets a LITTLE bit easier!
Also you WILL notice that over time certain foods will be your NO,NO foods, even if you ate them 6 months ago w/ no problems.... So enjoy what you can!

Best of luck to you!
Dx. w/ Crohn's Disease May 2000
Meds: Asacol 400MG, Imuran 50mg, RemicadeHumira
Small Bowel Resection November 2008

Dx w/ Hypothyroid 2001
Medication: Levoxyl 88MCG
Factor Five Leiden
 


ALgirl
Regular Member


Date Joined Mar 2010
Total Posts : 105
   Posted 3/28/2010 6:14 PM (GMT -7)   
I'm so sorry.  I can sympathize with you.  I hope you get this flare cleared up quickly.

Diagnosed w/ Crohn's 2010
Current meds: Pentasa, prednisone taper

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