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basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 12/4/2008 7:48 PM (GMT -6)   
Okay so my sister in law is a nursing assistant and she works in a hospital. We were talking about some of the things she's seen while she's been there and I asked her if she's seen anyone with a stoma and a bag. I only asked because I'm interested in it, not just because of my UC. She was like oh yeah I've seen a ton and I was like wow that's cool considering that could be my future someday. After I said that she flipped out and gave me this whole lecture on how negative it is to think like that and how she would much rather have diarrhea everyday than go around without a colon. In my defense I told her that she has NO idea what it is like to have this disease and how hard it is to even function. Even saying that she still proceeded with her little lecture. UGH! It was so annoying! She's the kind of person who does stuff like this but still. I mean I get where she is coming from but seriously. I accepted this disease a long time ago and I came to terms with the fact that I have a chronic disease and saying adios to my colon could be a possibility. And I don't feel like thinking this way is "negative". I see it as being REALISTIC. Don't get me wrong I am loving being a remission but its inevitable that another flare comes around and I'm cool with that. Sometimes I just wish people could step in my shoes and live my life for a day and see how hard it is with UC!

Ahh that felt good. Catharsis!! yeah
Sam
19 year old college student diagnosed with ulcerative colitis at 16
Remission since January/April 2006
400mg Asacol 2x, 10mg Elavil, 75mg Effexor XR for GAD

"If you don't like something change it. If you can't change it, change your attitude"
Maya Angelou


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 12/4/2008 10:16 PM (GMT -6)   
Maybe it's a sister in law disease - ignoritis. My SIL is the same way, thinking she has the answers to everything and that everything can be cured with a chiropractor. Just try to ignore those types of comments because you're right - they don't KNOW what it's like to walk in your shoes.
 @--->--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-worked great!, OA
To help Healingwell - click here: DONATE
 
 
 
 

 
 


basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 12/4/2008 10:26 PM (GMT -6)   
Ignoritis! I love it! I tend to clash with her anyways as our political views, religious views, EVERYTHING differ. I told the story to my mom and she said that same thing as me, its being realistic. I do ignore comments like that but this just bugged me.
Sam
19 year old college student diagnosed with ulcerative colitis at 16
Remission since January/April 2006
400mg Asacol 2x, 10mg Elavil, 75mg Effexor XR for GAD

"If you don't like something change it. If you can't change it, change your attitude"
Maya Angelou


mdbuckeye
Regular Member


Date Joined Dec 2008
Total Posts : 26
   Posted 12/5/2008 12:40 AM (GMT -6)   
I feel your fustration, I have dealt with people like that who simply can't imagine what we go through. Since its not a real common diease that is super well known to the average person they just play it off like its nothing. Just ignore them, you know your strong.
colitlis since 2000. current meds 250mg (imuran) sulfasalazine 4000mg, 1 multivitamin


quincy
Elite Member


Date Joined May 2003
Total Posts : 30986
   Posted 12/5/2008 2:10 AM (GMT -6)   
Sam, Seems your SIL needs to retake the compassion class.

Too bad we couldn't wave the wand and wish diarrhea and don't forget the white-knuckle poos....maybe a few pant crappers just before sitting on the toilet. That could set her in the right direction.

Definitely you're already into the reality thinking phase...which is a good thing. We all have the potential for it to happen, even your SIL, for cancer or other probems can result in having one's colon removed.

In her defense of thinking, not of her actions, however....it could be a cumulative effect of what she sees, It could be that it wasn't totally directed at you but fear for herself.

quincy
*Heather* Status..Asacol 6 (3 twice daily); enemas every 5th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate)....1 each  @ bedtime
~various digestive enzymes as needed
~Ranitidine (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 !!!
 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 12/5/2008 11:48 AM (GMT -6)   
Yes the magic wand waved over certain people would be a wonderful thing! So sorry for this Sam, but there are people out there with the "I" disease as Sherry said but the best thing is that YOU have your thoughts where they need to be and have dealt with the reality. Interesting that she works in a hospital and has seen many stomas....I have to wonder what her reaction is to those folks?
Carol

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


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 12/5/2008 12:30 PM (GMT -6)   
We could deal with it if it was just diarrhea. Her level of understanding the disease is just way off. If we don't keep things under control the outcome could be colon cancer, which in turn could cause death. Next time just ask her how she would deal with that. It's a little drastic and not something I think about, but it is a possible outcome of untreated disease.
Proctitis DX 1999, Pancolitis DX 2008
Lialda 3 day
Immuran
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD+Ca/SuperDHA

Post Edited (Dr-A) : 12/5/2008 1:15:35 PM (GMT-7)


FitWithUC
Regular Member


Date Joined Nov 2008
Total Posts : 64
   Posted 12/5/2008 1:41 PM (GMT -6)   
Some people just don't know what it's like to have this disease, it's not only the diarrhea, it's WAY MORE than that.
Male, 21. Puerto Rico
DX: Ulcerative Colitis as of 06/05
Remissions: Remission: 01/06 till 10/08
Current Treament: Asacol 2400 MG 2X daily, Rowassa nightly, 1MG Folic Acid, 40 MG Prednisone, Remicade, New Chapter® Multivitamin, New Chapter® All-Flora Probiotics, Dolomite Calcium Supplement
Status: Flare, but getting better :) No urgency, no blood :)


Limeycricketlover
Regular Member


Date Joined Oct 2008
Total Posts : 67
   Posted 12/5/2008 2:18 PM (GMT -6)   
Ha, love the ignoritis comment. Maybe there's an ignorectomy she could have, followed by a wisdom implant. I couldn't sense the remotest hint of negativity in your post - I think you're being very wise in considering the future!
UC - diagnosed Sep 2008 - Not seen GI since then...
Omeprazole 2 x 20mg
Prednisolone 20mg
Calcium (Adcal-D3) 3000mg
Mesalazine 8 x 500mg
Mesalazine foam enema
Multivitamins x 2
Omega 3
Probiotic (acidophilus)
Ferrous Sulphate 3 x 200mg

Unable to tolerate Paracetamol

Foods for me to avoid:
Any types of green leaf - big time.


basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 12/5/2008 2:18 PM (GMT -6)   
I know I told her all of this! Its so naive to think that UC is just a walk in the park. You're sick for a while and it goes away. Some people, I tell you.
Sam
19 year old college student diagnosed with ulcerative colitis at 16
Remission since January/April 2006
400mg Asacol 2x, 10mg Elavil, 75mg Effexor XR for GAD

"If you don't like something change it. If you can't change it, change your attitude"
Maya Angelou

Post Edited (sbauer07) : 12/5/2008 1:25:36 PM (GMT-7)


Charlotte Gilman
Regular Member


Date Joined May 2008
Total Posts : 100
   Posted 12/5/2008 4:40 PM (GMT -6)   
I have known many great nurses/nursing assistants, but the reality is that most who don't work as ET/WOC nurses don't know any more than the average person about taking care of an ostomy, or about what it's like to live with one. Hospital nurses and nursing assistants in particular tend to see them only on patients who are really debilitated in other ways, so they associate them with aging and death in ways that are really inaccurate.

What I'm getting at is that I hope you don't come away from the conversation feeling like her opinion has more weight because she's in a medical field. I had an ostomy for three months; it never leaked, I wore all my normal clothes, and even people who knew that it was there could never figure out where I was keeping the darned thing. Most people with ostomies are the same way. Now I have a j-pouch, so I am "going around without a colon," and I'll tell you--I'll take this, or the ostomy itself, over "having diarrhea every day" ANY TIME.

ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 12/5/2008 4:54 PM (GMT -6)   
One time at work we had an ileostomy surgery going on, and I don't remember how it came up but one of the doctors and some nurses were like "You don't want a j-pouch, you'll have nothing but diarrhea for the rest of your life" like it's this horrible thing, and I'm thinking to myself, that would be AMAZING if that was all that I had!! I'd rather have no more solid stools ever than have to deal with the pain and the bleeding and everything else that goes along with UC. I mean, seriously!

Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
Lexapro 10mg, Azasan 100mg

 
 


basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 12/5/2008 5:10 PM (GMT -6)   
If definitely doesn't weigh my opinion on the surgery. I'm a biology major focusing on the medical field and to be honest its interesting to me! I have always been really practical and rational about things but sometime I just want to take a stack of literature about UC and throw it at her and be like READ THIS and then tell me what you think! Such ignorance!
Sam
19 year old college student diagnosed with ulcerative colitis at 16
Remission since January/April 2006
400mg Asacol 2x, 10mg Elavil, 75mg Effexor XR for GAD

"If you don't like something change it. If you can't change it, change your attitude"
Maya Angelou


basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 12/5/2008 5:12 PM (GMT -6)   
p.s. what would I do without you guys to crab to!? :)
Sam
19 year old college student diagnosed with ulcerative colitis at 16
Remission since January/April 2006
400mg Asacol 2x, 10mg Elavil, 75mg Effexor XR for GAD

"If you don't like something change it. If you can't change it, change your attitude"
Maya Angelou


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 12/5/2008 5:41 PM (GMT -6)   
     Your sister in law obviously has never suffered a debilitating illness.  I sort of understand her saying that you wouldn't want surgery.  That was told to me by a colorectal surgeon.  Surgery is a last resort because it isn't pleasant to have to go through.  He also explained to me that even though my flare had me running to the bathroom six to eight times a day, urgency and bleeding, I was considered as having mild to moderate UC.  WOW...hate to be in the shoes of people who suffer severe UC.  I don't think your sister in law would really want to have diarrhea every day of her life either.....she may state that, but I doubt she would even want to suffer a few days with it.
     Best thing for you to do is just ignore her.  Don't stress, it will make your symptoms worse.
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.


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 12/5/2008 5:41 PM (GMT -6)   
People are stupid. I had a friend tell me that she wished she could have my surgery so she could be skinny!! I also had stupid ignorant people tell me that I was stupid for considering surgery when they knew I had been horribly ill for over 2 years. And then I had more stupid people tell me that if I knew how to eat right I would be healthy. Lastly there were the stupid people who thought I had celiac disease (as if that wasn't ruled out). On a positive note, most of those stupid people are no longer in my life. Guess why?

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


basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 12/5/2008 6:35 PM (GMT -6)   
No you're right I wouldn't want surgery and I'm definitely not asking for it. I tried every med under the sun to get me into remission. I was never severely flaring but it was disrupting my life and the meds weren't working.
Sam
19 year old college student diagnosed with ulcerative colitis at 16
Remission since January/April 2006
400mg Asacol 2x, 10mg Elavil, 75mg Effexor XR for GAD

"If you don't like something change it. If you can't change it, change your attitude"
Maya Angelou


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 12/5/2008 7:04 PM (GMT -6)   
Sam, you have such a level head on your shoulders and as long as I have "known" you, you have always been that way. You looked at the possiblity with a sense of reality nor do I think, if ever, in the event it comes to surgery for you that you would be going in blindly.

Can you believe that years ago I had one person ask me how I remained so thin and I told her what I had and she said "Oh I want that!!" Everyone that was with us, who knew me for a long time, yelled in unison - "NO YOU DON'T!" So even someone who is well intentioned don't always know what they are talking about nor can they truly understand the whole picture. So to play devils advocate here - maybe your SIL, thinking that she is older(?) has more answers then you and is trying to pass on her "education"? Yeah, I know - it can still burn ya up but sometimes you have to step in the other persons shoes for a minute. I had to do that with my SIL and even though it still annoys me to no end, I truly believe that she makes those comments hoping that she can help me in some small way.
 @--->--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-worked great!, OA
To help Healingwell - click here: DONATE
 
 
 
 

 
 


basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 12/5/2008 10:11 PM (GMT -6)   
Oh man. Someone wants UC to be THIN!? What the heck!

She is 8 years old than me to the day. If it were anyone else I would cut them some slack because I'm pretty open minded to others opinions and ideas but she's such a pain the ***. Its kinda the "my way or the highway" thing. I mean I love her and she's been a part of my family for a long time but geez lighten up ya know :)
Sam
19 year old college student diagnosed with ulcerative colitis at 16
Remission since January/April 2006
400mg Asacol 2x, 10mg Elavil, 75mg Effexor XR for GAD

"If you don't like something change it. If you can't change it, change your attitude"
Maya Angelou


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 12/7/2008 11:41 AM (GMT -6)   
I think not telling anyone that I have this disease saves me a lot of this aggravation. I try to privately do my thing.
My mother-in-law knows, though, and she can make some pretty dumb comments, although she never means any harm. "Big girl!" you may have heard me complain about that comment before, grrr. I think my husband has talked to her because I don't hear some of the dumb stuff like I used to.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder at first, now Forte pills. 
Doing much better, but still experience anxiety that interferes with activities. 
 


UCfree_at17
Regular Member


Date Joined May 2008
Total Posts : 91
   Posted 12/7/2008 12:20 PM (GMT -6)   
Hey Sam. I just had step one surgery Nov. 19 and have a temporary ostomy. Life is SO much better so if you ever do decide to get surgery, you deff wont regret it! I feel amazing and its only been a little over 2 weeks :-)
      Katrina
Katrina,17,SENIOR in high school =)
Ileostomy step 1of2 on Nov.19
Current meds:Prednisone,multivitamin,zantac
                                                                                                                   
The past is history, the future is a mystery..Today is a gift. That's why it's called the present. 
 
 
 


tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 12/7/2008 4:25 PM (GMT -6)   
Lucky for your sister in law that she doesn't have the option of taking medicines that can do more harm like prednisone for a year at a time and suffer with the horrible side effects. Or try every drug made to still have "diarrhea" add to it blood loss, hair loss, bone loss, weight loss, energy loss, etc. Sometimes we don't have a choice but to have surgery because the drugs just don't work anymore and it's surgery or die. Lucky for her she's never had to make a choice like that. I've had people tell me, "I know how you feel, I have to take Immodium all the time" Or "you are so lucky that you are so skinny" "I wish I had what you have" "I'll give you some of my fat" Are you kidding me, Seriously?
Theresa

Originally diagnosed with CD in 1991
Now saying "Undetermined Colitis"
3 step Jpoucher as of 4-15-08

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