Sick and tired of ppl insinuating I haven't

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ME!
Regular Member


Date Joined Aug 2007
Total Posts : 185
   Posted 9/15/2007 11:07 AM (GMT -6)   
exhausted all options before considering surgery. Obviously these ppl have no idea what abdominal pain is.

I have already stopped talking to people who are healthy about my health issues b/c I've found they have no idea and can not understand and end up saying something stupid.

And unfortuantely alot of them are christians. Had one woman at church tell me after she couldn't convince me to go to this 'healing farm' that I had befriended my disease.

But you'd think that ppl who deal w/ IBS would understand, but now I realize that some ppl either don't have as bad pain or there are some ppl who just want to complain and don't want to do anything about it.

Thanks for letting me vent. :)

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/15/2007 11:25 AM (GMT -6)   
i had the same problem, and honestly i didnt' ehxuast all possibilties, i got tired of trying diff things. I knew that surgery was the only cure, and that's what i went for.
The best thing for you to od is just not tell people. You are right, healthy people often don't understand, especially with a disease that you can't see on the outside, they don't understand how someone who doesn't relaly look sick can be so tired and etc...

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 9/15/2007 11:43 AM (GMT -6)   
I agree --- it is not like an exterior bruise or sore that you can "see". Ppl really don't understand/feel that which they have never experienced. Just like people cannot really truly understand the emotion when losing a loved one. Chronic pain is miserable. It can be debilitating. It affects all areas of the body when it is abdominal. It's been a long time for me, but I really truly vividly remember that HORRIBLE pain. I remember laying in bed or on the bathroom floor in the fetal position. I remember all of the pain meds, belladonna & opium suppositories, etc., just to make it thru another day. All the steroids - hydrocortisone suppositories, cortenemas, and oral prednisone; the flagyl, lidocaine jelly, azulfidine....... I do understand. I wish you peace, but most importantly, relief from pain. I feel for you.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 9/15/2007 2:31 PM (GMT -6)   

I was sick for over 2 ears and friends were sympathetic but when I opted for surgery, some of those same friends couldn't deal with it.  I was shocked, they did not walk in my shoes, they didn't know what I put up with on a daily basis.  How could someone, a friend, question a decision I made on my health?  It dumbfounded me.  I am now 7 years post op and I can tell you that those who weren't happy with my decision are no longer friends.  Lying in a hospital recovering I decided that as a part of my new health I needed to clean house and started with dropping those who didn't support me.

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
 


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 9/15/2007 3:22 PM (GMT -6)   
ME!-

Have you talked to a surgeon yet? I don't know about UC, I understand surgery is a cure, but for Crohn's, a surgeon usually won't perform the surgery unless you've exhausted all other treatment options (meaning at least tried all the different meds that are available) or unless it's an emergency for a blockage or rupture.
Judy
25+years diagnosed with CD. 
Numerous surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, hoping for a long remission from this last surgery. 
 
 


ME!
Regular Member


Date Joined Aug 2007
Total Posts : 185
   Posted 9/15/2007 5:15 PM (GMT -6)   
Yeah Judy I'm seeing a surgeon. He's put me thru alot of tests the last two weeks. Last week being the sitz marker test. I wasn't able to go to the bathroom for 8 days and it's aggravated my abdomen badly. I'm in alot of pain right now so any stupid comment doesn't roll off me.

I'm not a pleasant person to be around when I'm in pain, which is why I was excited to see that the marker test would back me up for wanting the surgery. And then to have someone make those comments to me today just hit me wrong.

I've been dealing w/ this for 2 years and I'm losing so much weight I can't go another year. I can't even go 6 more months or I'll be down to 90 lbs.

I have MS and it's damaged my CNS that regulates the colon. It's not going to reverse itself. It's only going to get worse. I'm at the end of a long 2 year process and I'm excited that it's coming to an end.

Thanks everyone. It's so good to be able to talk to ppl here who REALLY UNDERSTANDS!

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 9/16/2007 6:26 AM (GMT -6)   
Good luck ME, I hope you get your surgery and that it goes well. Sounds like you have a lot on your plate, and I hope your surgeon understands and has the skills to help you.

Enjoy your recooperation time, but from experience I thought I'd let you know that you may not feel up to games, books, etc. for a while. I was a zombie in front of the boob tube because that's all my brain could handle for weeks (and I'm a game and book fanatic). Make sure you have all the movie stations you can get, maybe sign up for a free 3 month trial, lol.
Judy
25+years diagnosed with CD. 
Numerous surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, hoping for a long remission from this last surgery. 
 
 


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 9/16/2007 9:18 AM (GMT -6)   
Me,
I had a similar experience with a couple of people not understanding why I wanted to have surgery, and those people were members of my family. The night before my proctocolectomy, my brother and father (who are both doctors) were on the phone asking me if I really thought that I needed to have surgery. They had seen how sick I was for 7 years, but still thought it was a drastic move on my part.

Not everybody is going to understand our pain or our decisions. I had that surgery a year ago and have felt great ever since! I know that having surgery was the best decision for me, even though I didn't have much support from them.

I work at a Presbyterian church, and everyone there was very understanding of my decision, and so was my husband, so I had a lot of support from them. Nowhere in the Bible does it say that if you are sick, you are bringing it on yourself. Is it just the one woman who believes that or is that what they teach at your church? It's simply not true, and you should not believe what she says or let it bother you any further.

Take care,
Cecilia
Dx'd w/ Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)

Post Edited (flchurchlady) : 9/16/2007 9:38:08 AM (GMT-6)


ME!
Regular Member


Date Joined Aug 2007
Total Posts : 185
   Posted 9/16/2007 10:37 AM (GMT -6)   
Thanks Judy :)

Churchlady, I have stopped going to church. I have been actively serving the Lord since 87'. But I have found churches to be the least helpful. For example:

I always try and 'pinch in' and serve somewhere in the churches I attend. I think everyone needs to pull their weight. Well, this last church I attended for over 3 years I -

Catered the women's conference for around 80 women all by myself.
Headed up the sick ministry who co-ordinated the meals for ppl who were sick and I have MS!
I cooked a homemade meal for one woman who had just had her 4th child
I wrote notes and called women who were sick
I took a widow lady downtown to the university so she could take a certification test to get a job. (She passed and got the job)
I have given money to the widow lady and her son.
We hosted a bible study in our home for a year.

Now this was just for the 3.5 years I was in this one church. All during that time I was trying to work and getting steriod treatments because I was having relapses every spring, probably b/c I was trying to do too much for everyone else.

One spring I had a bad reaction to one of the treatments. My heartrate dropped to 44 and I was too weak to move. My DH had told women at the church but no one brought us a meal or even called me. DH had to go to work. He placed some water by the bed and left at 8am and didn't return till 8pm. I layed in bed all day w/out moving or able to go to the bathroom. But since I wasn't eating or drinking I guess I didn't need to go.

The next week I got a call from the church asking me if I would fix a meal for someone who was sick !!!!!!!!!!!!!!!!!!!!!!!!

I told them I wasn't feeling so well myself. I still can't believe how polite I was about the whole thing.

Me and DH met w/ the pastor and his wife and told them all this. The pastor's response...."well if you can find your needs met somewhere else you have my blessing to leave." Yes, that's what he told us!!!

So after ppl in that church treating me so badly and getting such rude comments I will not go back to church.

I haven't had alot of support from churches. Now please understand I also tithe and not on my net but on my gross income at all the churches I've attended. The first church I attended for around 14 years starting when I was around 20 years old. I had gotten the chicken pox from another members child. I was out of work 13 days. I was tithing and trying to get by on very little income and I had an old car that kept breaking down. so after being out of work that long I asked the church to help me out. I only asked for $174 to help pay part of my rent.

You know the response I got? They said, "Where's your savings?" and never gave me a dime.

I will never give a dime to any church and I really really doubt I'll be stepping foot into another church.

At least when 'heathens' treat me bad I know to expect it. But I have found even heathens don't say the rude things some christians have said to me.

I know several good christians. My uncle has been a nazarene pastor for 30 years. But as a whole I haven't found them to be ppl I want to be around.

Sorry if I have offended you. You sound like a nice, decent human being. This has just been my experiences.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 9/16/2007 8:20 PM (GMT -6)   
Me,
You didn't offend me at all! I have worked in a church office for 10 years, and trust me, I have seen and heard it all! If I didn't have God, I wouldn't have been able to get through all of these years. I think it's just terrible that you gave so much to so many, and when you needed a little help, nobody from the church was there for you. That just breaks my heart, and I'm sorry you've had such bad experiences. I am glad, however, that you never gave up on Him.
:-) Cecilia

Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 9/17/2007 1:06 PM (GMT -6)   
Me!

sounds like you are really in the pain and agony of it all right now....if you end up having the surgery, I hope it helps you feel as much better as it did for me...
"All we need is love....love is all we need"


NashRambler
Regular Member


Date Joined Jan 2007
Total Posts : 22
   Posted 9/17/2007 1:53 PM (GMT -6)   
Wow!!! I am so thankfull for my church family especially my Sunday School Class. When the wife had cancer they brought food over for 3 weeks and it was enough food to last 5 weeks. Maybe they know how bad I cook and wanted to give my wife a chance. lol
I do understand what you are going thru because I tried all the diets, herbs, specialists, and drugs and it all came down to having the surgery. my surgeon told me I didn't even realize how bad I had gotten. Today I am healthy , happy, and helping others anytime I can.
Please don't let one situation with a church take away the only real healer we have and is there for us when we need him. It is hard to stay positive when we are so sick but know there is hope and alot of better days ahead.
I wish you the best.
Total collectomy and permanent Illeostomy April 2006
Pain free and enjoying life again
Have a Blessed day


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 9/17/2007 2:51 PM (GMT -6)   
Nash,
I'm glad that you are a part of a supportive church. I am also blessed to be a part of a caring church family. They prayed for me, visited me in the hospital, brought me meals, and sent me flowers and oodles of get well cards! I was overwhelmed by their love and support, and it really helped me get through 7 years of being sick with Crohn's and then last year when I had multiple surgeries.
God bless,
Cecilia
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