Friends and their ideas about how to fix CD

New Topic Post Reply Printable Version
35 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

Texan with Crohn's
Regular Member


Date Joined Dec 2007
Total Posts : 362
   Posted 11/4/2008 4:30 AM (GMT -7)   
I tried to locate the post I read a week or two ago about people's input on our DD, but didn't locate it quickly.

There's a friend sending me information about Colonix, stuff that will purify my intestines by flushing out toxins and metals. Arrr... A little frustrated with folks telling me how to fix my crohn's. If only it was that simple. I have shown unyielding patience with my close friends who do this, as I know they are only trying to help... but Colonix! Yeah, that's what I need, triple my trips to the bathroom. As if being on a liquid diet for weeks at at time doesn't do the trick. I don't believe that there's much left to flush. The bloating is inflammation, not poo build up. Has anyone seen the info on that stuff? YUCK!

Okay. Done ranting. Feel much better now. I can go back over to her email and send a nice thanks but no thanks email reply.

devil devil devil devil devil

-Leslie

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/4/2008 5:28 AM (GMT -7)   
Hi Glad you got the rant out and hope your doing better. How's the ankle coming? lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 11/4/2008 7:37 AM (GMT -7)   
I agree it is a balence inbetween appreciating their caring nature and their ignorance.
Forum Co-moderator - Crohn's Disease
...I will find a way, or make one. -Philip Sidney 1554-1586
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 11/4/2008 9:29 AM (GMT -7)   
The worst is when you're really really sick and someone says, "What did you eat?"

I want to scream whenever someone says that, especially if it's during a time when I'm following a very strict diet like MD or something.

Or when my inconsiderate relative asks me to watch her kids and I'm like, "I'm not well enough today." And she says oh, you just have to lie on the couch.

It's like who's gonna feed them, monitor them when they run around the house and get into things?

mj8dokken
Regular Member


Date Joined Dec 2006
Total Posts : 149
   Posted 11/4/2008 9:31 AM (GMT -7)   
I also had a coworker try to convince me to do a colon cleanse. Apparently they don't realize how many colon cleanses we get a year. :)

Bad flare May '06 resulted in CD diagnosis
 
Asacol: 2400 mg/day; Prednisone: 1.25 mg/day; Entocort: 9mg/day; Metronidazol
Started seeing a Naturopath-Castor Oil Packs, Liquid B Complex, Floragen, Ribes Nigrum, Herbal GI, Chlorella
 
"Life isn't about how to survive the storm, but how to dance in the rain"


Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 11/4/2008 9:33 AM (GMT -7)   
Leslie, I can really relate to your post, as well as the replies.  I don't want to hijack your thread, but, along the same lines, I get SO TIRED of hearing, "But you don't look sick!" mad
Diagnosed with Crohn's March 2006
Asacol 3 times a day, Remicade 10mg/kg every 4 weeks, Prednisone 12 mg, Miralax as needed, Prevacid 30mg, Vit B12, Hydrocortisone enemas as needed
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


Jeny
Regular Member


Date Joined Feb 2004
Total Posts : 437
   Posted 11/4/2008 9:46 AM (GMT -7)   
I agree..people do have good intentions, they are just clueless when it comes to what we have. I really ticks me off when my husband who knows better asks me 'well, what did u eat?' like it always has to do with something i ate...i mean all these years and he still doesn't get it!! i could be on broth and jello and still hurt and he would insist that i cheated and ate something i "shouldn't have"....UHG!!! denial i guess. i think people, men especially, just want to be able to 'fix' it.
ok..sorry for the rant.
-jeny

conorconan1
Regular Member


Date Joined Oct 2008
Total Posts : 245
   Posted 11/4/2008 10:45 AM (GMT -7)   
I know what you are saying. I have yet to get my DX and people are telling me how to fix it. There intentions are good, but give it a rest ad let the medical people help me sort it. If I needed a olon cleanse, I would really be in trouble considering the bad D that we get.

Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2691
   Posted 11/4/2008 11:07 AM (GMT -7)   
Oh yes, everyone has thier "magic" cure suggestions. It can be frustrating, and even upsetting. People don't seem to get the seriousness of this disease, and if it was ever so easy, don't they think our doctors would have figured that out long before now?

My MIL is famous for this. She even mails me articles and coupons for things that would never help me. She'll even email me ideas of OTHER conditions it might be! Geesh.
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Taking Asacol, Questran, Toprol XL (for high blood pressure). Tapered off prednisone a month ago!


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 11/4/2008 12:08 PM (GMT -7)   
I think the bottom line is they care about us, if they didn't then they wouldn't bother suggesting anything or questioning anything...personally I'd rather here suggestions and know they care enough to make them, then nothing at all from them. It's really not much different then us giving each other here at HW adivce about what works or doesn't based on our experiances.

It might get frustrating at times for us when non-IBDers are giving suggestions and such but I highly doubt they realize we'd even take it that way...it's love/concern on their part.


:)
My bum is broken....there's a big crack down the middle of it! LOL :)


aoccc
Regular Member


Date Joined Feb 2005
Total Posts : 455
   Posted 11/4/2008 1:53 PM (GMT -7)   
The funny thing is..after having this for awhile and you hear of someone else with a disease you have never heard about before, it makes you want to go do more research on it and try to understand what the person is going threw. I guess by the end of your life everyone has had something that changes your life and how you perceive others.
SCD since 01, remission since 01, occasional Arby's breaks :)


indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 11/4/2008 2:06 PM (GMT -7)   

Boy can I relate to this one!

It is so frustrating when people say "But you don't look sick" or "You must have eaten something"...I really want to say "try being in my body for a day and you will see how it feels."

While some of the suggestions can show genuine concern and caring, others have suggested and told me things that "downplay" the illness or make it seem like it is "all in my head" (yes, I have heard that one, too).

I agree with aoccc--eventually we will all be touched by something that will affect us and how we perceive others.  Maybe those who really don't believe we have an illness will one day look back and realize that yes, it IS a real illness...

 

 

 


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 11/4/2008 3:53 PM (GMT -7)   
When I lost access to Humira last month, I had several people say to me, "if you just think positively, you'll stay well, even though you're not on your medication anymore". Yeah, right. So the joint pain, the inability to tolerate much more than liquids, and the d to the point of incontinence, were all because I had negative thoughts. *sigh*

I'm sorry you have to deal with this, Leslie. It's frustrating.
Co-Moderator Crohn's Forum.


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 11/4/2008 3:57 PM (GMT -7)   
Ivy - how are you doing now that you are back on the Humira?

Leslie -how's the ankle? Get it x-rayed yet?
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 11/4/2008 3:59 PM (GMT -7)   
Fitzy - the gut is improving, but still very delicate, and I'm still on liquid / soft foods. I'm also very weak and have very little stamina, and don't understand why. Thanks for asking!
Co-Moderator Crohn's Forum.


Texan with Crohn's
Regular Member


Date Joined Dec 2007
Total Posts : 362
   Posted 11/4/2008 6:30 PM (GMT -7)   
Gail -

The ankle is improving. Those ibuprofen patches are a godsend.


Friends and family mean well, I know. Had to get the frustration out after reading that email. It's all good. Like everyone here, I'm sick and tired of being sick and tired. Sure I put on my brave face and go out into the world and do what I have to do. It' hard, though... but then everyone here knows this.

Well, guess I will take my medications and head off to bed. I am plumb tuckered.

Good night all.

:)

miguelblanco
Regular Member


Date Joined Dec 2007
Total Posts : 131
   Posted 11/4/2008 6:37 PM (GMT -7)   
Ha ha... had a similar experience about a week ago. There's an elderly woman that works in our office. She must be about 80. Anyway, she sells all these vitamins and herbal supplements in some sort of "Amway" type thing. She saw me limping along and asked what was wrong. "I have severe arthritis from my Crohn's disease right now." She perked up: "Oh, arthritis. We have a supplement for that." I refrained from rolling my eyes as best I could, and responded, "Thanks, but I have a lot of allergies and can't take many herbs and supplements." Again, she perks up: "Oh, allergies, we have a supplement for that too. You just need vitamins and minerals." At that point I started to get a bit perturbed and just walked (hobbled) away.

I looked right at her as I walked in normally today at work after just one Remicade infusion yesterday. yeah
Pretty excited right now. yeah
Type I Diabetes- 29 yrs. (MiniMed Insulin Pump)
Celiac Disease- 8 yrs.
Crohn's Disease- (Nov. '06)
Remicade (First Infusion 11/3/08) yeah


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 11/4/2008 11:38 PM (GMT -7)   
That's great news, miguel, and really encouraging!
Co-Moderator Crohn's Forum.


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2691
   Posted 11/5/2008 1:14 AM (GMT -7)   
I suppose you can look at it as they care, but I also think if you really care you'll learn about what that person really has too. A lot of the suggestions I've gotten have been slaps in the face, as in Crohn's isn't all that serious. If you love me, care about me, and want to see me well, learn about my disease. I'd never tell someone how to treat anything to begin with, but especially something I'm just clueless about.

But then again I've had those same people that give me suggestions, also insist on eating in certain places, even after saying I can't. So sometimes I do have to wonder what their motive is for all their suggestions.
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Taking Asacol, Questran, Toprol XL (for high blood pressure). Tapered off prednisone a month ago!


tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 11/6/2008 12:36 AM (GMT -7)   
I agree with most of the posters here that most of these people have good intentions and do not know how offensive this can be to us. I lost a really good friend over this situation because I kept telling people that if I would just eat a good diet and exercise that I would be fine. He told everyone that I was just addicted to pain medication and would not follow my doctors orders. How naive this person was to realize that I had tried every diet possible and was going to the gym and exercising daily at the time for at least an hour. I have never drank, smoke, or tried any illegal drugs in my life and the time had not been on pain medication since my last surgery. Severing this friendship was hard, but it has taught me who to talk to about my situation and who to just answer the basics.
Everyone seems to know someone with Crohn's disease that is doing incredible by following this diet or using this supplement. I even had a close family friend call and try to get me to use some juice that was made from some berries found only in the high himalayas. It was the the cure for just about everything and only cost about $90 a bottle and I could even sell it. When asked why the medical field is not using this, he had some story about how doctors don't want people to get cured for fear of losing their jobs and income. Of course, I just thanks, but no thanks. This is now my response when someone comes to me with another cure or diet. I politely say thanks and let it go.

Texan with Crohn's
Regular Member


Date Joined Dec 2007
Total Posts : 362
   Posted 11/6/2008 5:06 AM (GMT -7)   
tsitodawg -

The pain (and nausea) medication part of your post I have run into as well. There is a large circle of friends that I have been loosely associated with on/off for over 20 years. Once word got out that I had CD, everyone knew, much to my dismay. The bad part was the girlfriend who broadcast this was at my house helping me on the day of one of my ER releases saw all my meds and then told everyone within this large group. After that several people turned their nose up at me like I was a drug addict. A couple did ask "What is crohn's and why do you have to take so much medication?"

I don't care what anyone thinks... so, I lightened my loose-friend load and now keep an inner circle of close friends. But nobody but this forum knows how bad I hurt, that some days I cannot walk or hold anything due to the swelling in all my joints, how nauseated and bloated how many trips to the bathroom.

?? Idea! devil The next time someone wants to get up into my medical business I do believe I will be evil and get them into a poo comparison conversation!! hehe We will see how many people are happy when their poo comes out lightly formed like soft cheetos or who shouts out whew hooo when they actually have a formed stool rather than mush! Yep, my friend who suggested the colonics will be the target for this one... known her since third grade, so she's not going anywhere... she'll just stop trying to tell me to change my diet. She's been suggesting stuff and telling me how to fix it for over a year now. Soooo poo talk it is! devil devil I'm not too evil, though, or I would just go over to her house and do the poo... then she would know what a CD poo is ALL about! I can clear an entire 1200 square foot house on any given day.

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/6/2008 6:37 AM (GMT -7)   
When I explain that my immune system is attacking the lining of my intestines, causing raw, inflamed areas . . . most people really do "get it".

I think that when we say "Crohn's" . . . most people really have no clue. They don't ask what Crohn's is because they are embarrassed that they don't know.

I was sitting with a group of women then other day and one of them was going on and on about her sister who was having a Crohn's flare "because she wasn't eating right". Of course I had to try to educate her.

Great topic.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 11/6/2008 11:58 AM (GMT -7)   
I told a hairdresser once that I had crohn's and she asked me if that was some kind of blood disorder, I told her no, it was more like a having to use the toilet often disorder and then I gave her more details of course....she was mystified that such a disease could even exsit, I told her I thought the same thing when I first started getting sick and then got DX with crohn's.

All we can do is share our knowledge to spread the word...in Canada, November is marked as IBD awareness month...in fact, my GI was on the local morning news show yeseterday putting the awareness out there.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 11/6/2008 4:44 PM (GMT -7)   
I must say that my best, dearest and most understanding friend learnt about Crohn's in reverse. about twelve years ago when we were just friendly acquaintances, she came back from a university lecture laughing about this hilarious lecture they'd just had about a medical condition called "Crohn's Disease" where you could have d and c and how you never knew from one moment to the next what your bowels would do, and how it would be like living in a permanent South Park episode.

I had to tell her that it wasn't funny at all and that I lived with it every day - her jaw dropped, she looked a bit embarrassed, and she has been a rock of support ever since.

Sometimes, I think it helps for people to get the gory details third-hand. If they hear about it from us, they can just dismiss what we say as exaggeration or whingeing.
Co-Moderator Crohn's Forum.


eva124
Regular Member


Date Joined Sep 2007
Total Posts : 246
   Posted 11/6/2008 11:29 PM (GMT -7)   
i dont really tell anyone bout my disease only my best friend and one of my boyfriends friends has crohns so i usually txt him when i get good news coz hes the only one who understands the xciment of remission and the dissapointment of being put back on pred,its kinda weird i have 3 ppl i knw who haf crohns my boyfriends friend,a girl frm my old highschool,and my boyfriends mum......sad that i knw so many,dse mke me giggle when my bfs mum comes over and she can spot when im on pred etc :)
dx 17 aug 2007
21 yrs old
13 dec 2007 resection/temp illeostomy 14 feb 2008 temp illeostomy reversed 
150mg azamun
3000mg pentasa

New Topic Post Reply Printable Version
35 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Thursday, December 08, 2016 5:09 PM (GMT -7)
There are a total of 2,735,033 posts in 301,268 threads.
View Active Threads


Who's Online
This forum has 151368 registered members. Please welcome our newest member, Martinese.
362 Guest(s), 11 Registered Member(s) are currently online.  Details
Thankuall, Bololidat, Laker7491, THE HAPPY TURTLE, Sarebear89, LG13, Huddie, ChickenArise, sam12, Blu's Mama, Mister Mike


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