why do we do it rant

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

lambkins
Veteran Member


Date Joined May 2008
Total Posts : 574
   Posted 3/14/2009 4:06 AM (GMT -6)   
I don't know about anyone else but no matter how we feel all we say when asked is ok or not to bad
For the last 5 weeks or so i have felt bad blood and mucus on every bm stomach cramps at least 4 times a day my toes knees and hips ache and i feel sick after each meal and it seems that it does not matter what i eat feel the same and the noises the my stomach is making are really loud worse when i go to bed hence not sleeping much and still i just say i'm ok why? i wish i knew maybe i/we dont say as it is like giving in to this DD so we just get on with it and hope for the best and as for energy levels must be -0 and still we push ourselves also the dark circles under my eyes are getting so deep you could put potatoes in them well i think thats my rant over feel a bit better just posting how i feel wish i could tell hubby how i really feel this is the 4th weekedn in a row he has gone out and im left with the kids think im just feeling sorry for myself have GI on wednesday will tell him how i feel and maybe get something sorted.
  
  Diagnosed 22.5.08 with Lft sided U/C
  Meds Predfoam 20mg 2x day stopped started pentasa supps 1gm 26/6/08
 Asacol 800mg x2 twice daily
  Domperidone 10mg as needed
  co codamol 30/500 x2 when needed


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 3/14/2009 4:41 AM (GMT -6)   

I know exactly what you mean. I think sometimes its easier to just say 'oh its not too bad' or whatever to avoid having to go into detail about how we actually feel. After a week in hospital I came out last Friday and people are like 'how are you? whats happening now..?' etc and I do find its so much easier to just say 'Ah well theyre just trying me out on medication...I think I'm getting there etc' Its easier than having to repeat myself several times especially when I don't have many answers myself.

And also - I think the fact that we're only human means sometimes we don't want to admit to ourselves how bad we really feel, because it might make us dwell on it and feel worse. I know thats what goes through my mind sometimes so I just kind of try to keep my chin up.


22 year old female, from the UK.
 
Diagnosed with Ulcerative Proctitis Jan '08, Proctosigmoiditis Jan '09.
Hospitalised Jan '09 for IV Hydrocortisone - had no effect!
Hospitalised Fri 27th Feb for a week of IV Hydrocortisone.
  
Currently taking daily: 
40mg Prednisolone tablets
5mg Prednisolone suppositories x 2
1g Mesalazine suppositories x 2 (soon to change to Acetarsol)
2g Mesalazine sachets x 2
Fybogel supplement
Vitamin tablet
Build-up drinks
                             
                             


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 3/14/2009 7:00 AM (GMT -6)   
I do the same thing. I never admit to how bad I'm really feeling. It's always "I'm okay" or "Not too bad" even when I feel like death warmed over. I guess it's the same reason I put on makeup every morning, just to feel somewhat normal and give the allusion of being healthy so I don't have people pestering me all day. Next I need to get a tan though because when you're already pale and then you get anemic, apparently that causes quiet an unhealthy appearance!
Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
3rd Remicade infusion 3/19/09


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 3/14/2009 7:10 AM (GMT -6)   
Yep, I do the same thing. I think I too get tired of people asking me if I am ok. It's old very fast! But when I am having a bad day and tell my husband the pat answer, I'm ok - he doesn't believe me. And secretly I'm relieved! lol There are times though that I am more vocal to let the hubby and kids know that today is a bad day and usually it's because I'm at the end of my rope and I just want to be left alone. I don't know why we do this - I guess we all have our reasons though.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


lambkins
Veteran Member


Date Joined May 2008
Total Posts : 574
   Posted 3/14/2009 7:36 AM (GMT -6)   
My youngest children don't know i have U/C the older one does as he is 18 but the others are 6 and 10 the 10yr is a worrier and whould think im dying all the time and the 6yr would just not understand even hubby bless him does try but does not understand either my fault really for not saying but i find it very difficult to put into words thats why i'm so glad i have all of you.
  
  Diagnosed 22.5.08 with Lft sided U/C
  Meds Predfoam 20mg 2x day stopped started pentasa supps 1gm 26/6/08
 Asacol 800mg x2 twice daily
  Domperidone 10mg as needed
  co codamol 30/500 x2 when needed


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 3/14/2009 7:56 AM (GMT -6)   
ediekristen said...
I do the same thing. I never admit to how bad I'm really feeling. It's always "I'm okay" or "Not too bad" even when I feel like death warmed over. I guess it's the same reason I put on makeup every morning, just to feel somewhat normal and give the allusion of being healthy so I don't have people pestering me all day. Next I need to get a tan though because when you're already pale and then you get anemic, apparently that causes quiet an unhealthy appearance!

   Make up is great, although some days I still look pale through it! I'm one of those people that looks ill and pale when I feel it so it often invites alot of "are you ok? You look ill" which can get annoying after a while even if people are only concerned. A tan is a great idea!
22 year old female, from the UK.
 
Diagnosed with Ulcerative Proctitis Jan '08, Proctosigmoiditis Jan '09.
Hospitalised Jan '09 for IV Hydrocortisone - had no effect!
Hospitalised Fri 27th Feb for a week of IV Hydrocortisone.
  
Currently taking daily: 
40mg Prednisolone tablets
5mg Prednisolone suppositories x 2
1g Mesalazine suppositories x 2 (soon to change to Acetarsol)
2g Mesalazine sachets x 2
Fybogel supplement
Vitamin tablet
Build-up drinks
                             
                             


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/14/2009 8:57 AM (GMT -6)   

Pretty well said by all.  It is hard to explain to others.  At my senior age at least I can get away with being "older" and therefore full of aches and pains anyway.  I have bad knees - obvious to others - and they know I am in pain because I use a cane to get around.  The inside pain/weakness/tiredness/etc. just doesn't always show and we try not to show it to our loved ones and friends.

NOW - I have that "moonface" from prednisone.  I have not seen many but wonder which ones notice and KNOW what it is or wonder how I am.  Some know I am on steroids and at my age we know what causes moonface!  I don't mind but wonder what others may think!  If the prednisone (and it is) gets rid of the DD - stops the bleeding, etc. I can tolerate a FAT face!  I find many just don't undertand how we have to TRY so many treatments, etc.

I have been trying to get a knee replacement for 3 years - first panic attack, then husband cancer and now UC - my family thinks I am "using UC" to get out of the surgery - REALLY!  If I don't want the surgery I will just not have it - don't need any excuses - it is my body after all.  I have learned in my 68 years (well, at least about 40 of them) that we take care of ourselves first - family will have to wait. Took a few years to learn that but it is important lessson!! 

I stand in admiration of all of you who have to cope with college, parents, young children, etc.  My heart goes out to all of you.  May there be a cure for this DD in your lifetime!!

Hugs, ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008
Tried all mesalamines and enemas, Canasa, etc.  Colonoscopy 10/28 showed only few cm. left to heal -hydrocortisone enemas 12 days - much worse. Cannot tolerate mesalamine!
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 Feb. 21 - down to 20 mg. - no blood, no pain, no bad side effects so far. Starting 6-MP Feb. 28 along with 20 mg. prednisone. March 9 - spoke too soon - bleeding returned.
Probiotic Align, Prilosec for GERD
 
 
 


lambkins
Veteran Member


Date Joined May 2008
Total Posts : 574
   Posted 3/14/2009 10:48 AM (GMT -6)   
Well said Elaine wish it could be put into practice but fear rest of family live on another planet most of the time
  
  Diagnosed 22.5.08 with Lft sided U/C
  Meds Predfoam 20mg 2x day stopped started pentasa supps 1gm 26/6/08
 Asacol 800mg x2 twice daily
  Domperidone 10mg as needed
  co codamol 30/500 x2 when needed


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16287
   Posted 3/14/2009 11:51 AM (GMT -6)   
ediekristen said...
I do the same thing. I never admit to how bad I'm really feeling. It's always "I'm okay" or "Not too bad" even when I feel like death warmed over. I guess it's the same reason I put on makeup every morning, just to feel somewhat normal and give the allusion of being healthy so I don't have people pestering me all day. Next I need to get a tan though because when you're already pale and then you get anemic, apparently that causes quiet an unhealthy appearance!

haha, that pretty much wraps up how I feel and act too. I try to look normal so I don't get pestured. I don't tell my parents things because I don't want to have to constantly explain that I am OK. I am not really ok, I am pretty weak and feel like crap but I don't need them on my case, that would only make it worse.
Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December 08 but had symptoms months ago - Treating with Asacol 400mg (9 a day)


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 3/14/2009 2:34 PM (GMT -6)   
sicklygirl said...
ediekristen said...
I do the same thing. I never admit to how bad I'm really feeling. It's always "I'm okay" or "Not too bad" even when I feel like death warmed over. I guess it's the same reason I put on makeup every morning, just to feel somewhat normal and give the allusion of being healthy so I don't have people pestering me all day. Next I need to get a tan though because when you're already pale and then you get anemic, apparently that causes quiet an unhealthy appearance!

haha, that pretty much wraps up how I feel and act too. I try to look normal so I don't get pestured. I don't tell my parents things because I don't want to have to constantly explain that I am OK. I am not really ok, I am pretty weak and feel like crap but I don't need them on my case, that would only make it worse.

I think we get fed up of people telling us we look ill even if they mean well! And KNOWING that we look ill. I don't really let on to my parents how I feel either, I still live at home and I just want space with it, I don't want to have to think about being ill so I don't necessarily want them always asking me how I am. People can generally tell the days I feel awful anyway cos no amount of make up will hide it properly haha!
22 year old female, from the UK.
 
Diagnosed with Ulcerative Proctitis Jan '08, Proctosigmoiditis Jan '09.
Hospitalised Jan '09 for IV Hydrocortisone - had no effect!
Hospitalised Fri 27th Feb for a week of IV Hydrocortisone.
  
Currently taking daily: 
40mg Prednisolone tablets
5mg Prednisolone suppositories x 2
1g Mesalazine suppositories x 2 (soon to change to Acetarsol)
2g Mesalazine sachets x 2
Fybogel supplement
Vitamin tablet
Build-up drinks
                             
                             


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/14/2009 2:45 PM (GMT -6)   

As a Mother of two sons (grownup - age 45 and 46) and Grandma of four I would like to reassure you "youngsters" that your Mom, Dad, etc. just love ya and want you to feel good - every day.  They wanna help, etc. BUT, in my experience - if you feel you would rather deal with it most of the time yourself and let them know when they can help - talk to them briefly about it - get it out in the open once so everyone is on the same page.  WE worry about our children as some of you do about your little ones no matter how old or grownup you get.  Now my sons and families live their own lives and I certainly don't know all their ills or want to but I want to be able to help if I can.  TLC is always nice.  I lost my Mom only 7 years  ago and still miss her "caring" and love!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008
Tried all mesalamines and enemas, Canasa, etc.  Colonoscopy 10/28 showed only few cm. left to heal -hydrocortisone enemas 12 days - much worse. Cannot tolerate mesalamine!
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 Feb. 21 - down to 20 mg. - no blood, no pain, no bad side effects so far. Starting 6-MP Feb. 28 along with 20 mg. prednisone. March 9 - spoke too soon - bleeding returned.
Probiotic Align, Prilosec for GERD
 
 
 


buckeyeinchicago
Regular Member


Date Joined Feb 2009
Total Posts : 40
   Posted 3/15/2009 12:01 AM (GMT -6)   
Wow, while reading the entries it was like the words were coming from my mouth. I always have the generic answer of "I'm okay" and move on with my life to my co workers and some family. It frustrates me when I see people in the hall (I'm a teacher) and they ask me how my weekend went. I often want to say, well I was in the bathroom for most of it or for fear that I wouldn't be able to go out without feeling sick afterwards I spent the night on the couch. How was yours? However, I just say it was fine and move on. It is much easier that way. My parents and husband are good about asking me everyday but I often feel like I disappoint them if I have a bad day. In no way is it anything that they are doing/saying it is b/c I know they want me to just feel better and I want to give them that answer. I still have very little appetite from the prednisone and feel sick almost every time after I eat. Tonight we went out on a Sat night with friends for the first time since my flare started. It was a huge deal for me. I wasn't hungry at the restaurant but didn't want to sit with nothing so I got a bowl of soup which ended up being a mistake. I'm happy that I only had to go two times after dinner but it is still hard and I had the fear that I was goign to get stuck somewhere without a bathroom.

As for the moon face I feel like my face has blown up like a balloon. I'm happy the meds are finally starting to work and I am in a much better place than I was a month ago but I feel like now the whole world can tell. I am always thinking do they think I gained a lot of weight in my face or can they tell that I'm on prednisone. The face is a difficult thing to hide but I am trying my absolute best to be thankful that the meds are starting to help and that is more important than my outside appearance. I'm so glad I read this posting tonight. It is so comforting to know there are others out there who feel exactly like I do. Thank you for ranting b/c your words are the way so many others are feeling.
Diagnosed when 13 and am now 25, female. Currently taking 100mg of 6mp, started at 60 mg of prednisone and now down to 30 mg, and 12 pills of asacol a day. I tried cortifoam for this flare and it didn't work. Previously I've tried all types of rectal meds but nothing ever helped. In the past I've tried rowasa, enemas, pentasa, colazal, sulfasalizine. I was in a four year remission until the end of January.

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, June 22, 2018 8:58 PM (GMT -6)
There are a total of 2,974,423 posts in 326,174 threads.
View Active Threads


Who's Online
This forum has 161267 registered members. Please welcome our newest member, Froufie.
375 Guest(s), 4 Registered Member(s) are currently online.  Details
Pratoman, TMo, U.C.Me?, Lanie G