Have you lost friends?

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Jen_J
Regular Member


Date Joined Jul 2008
Total Posts : 25
   Posted 7/7/2008 1:59 AM (GMT -6)   
hi, since I was diagnosed with UC, I've lost some "friends". sad

I don't drink/party/etc. anymore, and since then some of my friends don't even bother to call me and see how I am doing or invite me anywhere. They didn't even wish me a happy birthday. Guess I'm no fun anymore!

Has this happened to anyone else?

neondream
Regular Member


Date Joined May 2008
Total Posts : 47
   Posted 7/7/2008 2:12 AM (GMT -6)   
Yeah its something that's definitely happened to me. I'm in college and a lot people don't know how to hang out unless they are partying. It's no fun (for me at least) to be at a party and be sober while everyone is toasted, so I don't socialize as much as I used to. Being a designated driver sometimes has its perks, like people giving you gas money, paying for you to get in clubs, or free non alch-beverages. I like how you quoted "friends" because real friends would check up on you and wish you a happy birthday! It is hard, but the few friends I do have are of a higher quality.
20. Female. California.
Diagnosed left sided Ulcerative Colitis at 15
NEW: colonoscopy 7/2/08 now considered Severe Pancolitis :(

Flaring! :(
40mg prednisone 4 weeks, upped to 60mg
Prevacid, Multi Vitamin, Digestive Advantage Chrons and Colitis, Iron Supplement (starting Remicade soon)
Allergic to- 6mp (gave me pancreatitis), Mesalamine


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 7/7/2008 7:35 AM (GMT -6)   
I was dx'd at 18 and lost a few friends in the process. On the up side though i found my true friends. I have a handful of people that I know will be there for me forever. It showed me who really cared for me.

If you want to still hang out with those "friends" I agree on being the designated driver. For a few years I was even the bartender for them. I got a job behind a bar and made money while hanging with friends. I also ended up meeting my husband there (he was another bartender, 7 yrs together!)

I have found that most "friends" don't know what to say or how to act around people who are sick. Sometimes just letting them ask as many questions as they want and joking around about it makes it easier for them.

Its hard enough for us without having to go through this. It's hard to realize that people aren't who you thought they were. But hopefully it also shows you that there are some who are better friends than you thought as well.
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, no more pred after two years!!!! Off imuran as remicade is working!
Prontonix once daily for acid reflux, zofran 8mg every six hours for nausea
Remicade started 3/1/08...just had 4th infusion


Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 7/7/2008 7:43 AM (GMT -6)   
Kelly hit the nail right on the head. Times like this make your "friends" show their true colors. I've been pleasantly surprised by some and very disappointed in others. Its too bad UC doesn't get more publicity/awareness. People generally just think you go to the bathroom a lot and have no idea about all the other negative stuff like dealing with a life-long disease for the first time, the embarrassment of accidents, the depression you can feel, the awful side effects of medications, and the fear of surgery always being in the back of your mind. Only your true friends will take the time to learn about you're dealing with and try to help you through it.
Female, 30.   Chicago 'burbs.
DX:  Ulcerative Proctitis (10cm) January '08
Current Treament:  Rowasa 60 ML 2X daily, Cortenama 100 ML 1X daily, Bentyl 20 MG 4X daily (as needed), Tylenol, and Acidophilus 2X daily.
Diet/Exercise:  No sugar (including fructose, sorbitol, mannitol, and lactose) or wheat bran fiber.  Daily yoga, walking, or cardio w/weights.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Vitamins.
Status:  Flare (showing some improvement)
 
 


winni
Regular Member


Date Joined Jul 2006
Total Posts : 179
   Posted 7/7/2008 8:36 AM (GMT -6)   
I think its probably common with people who are diagnosed young. I lost soooo many friends when i was diagnosed as well, but as others have said I also found out who my true friends were and consider myself lucky to both have them in my life as well as to not have those others in my life
Winni, 25

Diagnosed UC july 2006.
medications: colazal 9 daily, cortifoam 1x every other day.
25 mg pred,and tapering. 75 mg 6 mp
supplements:calcium, aloe gel, pro-biotics, bee propolis, omega 3 oil
osteopenia from all this prednisone.
http://www.myspace.com/harshrealmbro


quincy
Elite Member


Date Joined May 2003
Total Posts : 30366
   Posted 7/7/2008 8:43 AM (GMT -6)   
Remember that friends come and go for different reasons....for some, health issues is the last thing they want to deal with.

The "some" who have taken a different road shouldn't take you away from the fact that some are still your friends...focus on them and you.

It's hurtful to be sure.
Unfortunately it'll happen throughout your life whether you have health issues or not.

Be a good friend to yourself. Maybe some friends who have taken a break will be back...we all grow at different paces.

Happy belated birthday to you Jen!!
Hope you have a feeling well new year, one filled with new friends and experiences!

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  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 !!!


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 7/7/2008 9:09 AM (GMT -6)   
I have trouble with friends. It isn't necessarily the disease. I think as the kids grew, we have less in common. I try to keep in touch with so many who don't reciprocate. I often feel as if I am oddly attracted to the friends who wil let me down. I know that sounds wierd. I am thankful for family, they will always be there, even through the tough times. I wish you ther best. I think it is common to have friend trouble. People who just party all of the time need to get a real life anyhow, it is always the same old thing, I think it gets old. I don't like to drink much and when around neighbors who do a lot, I feel like the Goody too shoes. Also, I think people are too busy with their own lives. I do have one great amazing friend, she is worth far more than ten so called "friends" could ever be. Good luck, hang in there, Bellski
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis,
Currently: mild symptoms / flare ?
Medications:  Asacol 400mg X 6, Canasa X 2 
Vitamins:  Calcium 600 + D X 2, Centrum, Citrucel caplets, Probiotics
High fiber diet
"I thank God that  I found this website!"
 


UC since'76
Regular Member


Date Joined Dec 2006
Total Posts : 77
   Posted 7/7/2008 10:21 AM (GMT -6)   
I'm a little older than you and I lose friends in a different way. Ladies want to meet for lunch and ride together. After a large restaurant meal, at some point in the near future I am going to need a toilet in 2-5 minutes or have an accident. So I cannot ride in anyone's car if it involves a meal. I have actually lost friends that way, I can't tell them why, I just have to figure out a way to bring my own car. It always turns out "funny" and "awkward" and I have wound up losing friends.

I also had a job - my big break, I was an RN and went back to school to be a CPA. It took years to find a job as a CPA even with my 4.0 GPA. There was a 2-day seminar out of town and the five people who worked there always rode together. A 2 day long road trip. I knew I could not go in their car because of my urgency and came up with some lame excuse about why I had to take my own car. In the end, after 3 months, they said I did not fit in and fired me. I have not been able to find a job since. I have the credentials for a job that pays $75 an hour but I am unemployed and destitute and live with my son who supports me.

I had a chance at another accounting job (no $75 an hour, just min. wage, but at least SOMETHING) I had to quit the third day because I found out the cranky server for all the computers was in the old linen closet of the one bathroom. (It was in an old house) The list of disasters this could have caused goes on and on.
Ulcerative Colitis since about 1976
Pan colitis since at least 1994
 
Never had a flare until MD gave massive dose of Magnesiun while hospitalized for bronchitis.
 
During subsequent hospitalization for the flare, GI looked me straight in the eye and said "don't ever stop using Asacol."
Insurance company thought otherwise so I'm on no meds.


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 7/7/2008 11:39 AM (GMT -6)   
Kiss520 said...
Its too bad UC doesn't get more publicity/awareness. People generally just think you go to the bathroom a lot and have no idea about all the other negative stuff like dealing with a life-long disease for the first time, the embarrassment of accidents, the depression you can feel, the awful side effects of medications, and the fear of surgery always being in the back of your mind. Only your true friends will take the time to learn about you're dealing with and try to help you through it.
I agree, I really wish there was more awareness. The only commercial I've EVER seen regarding colitis was for Remicade and it really said nothing about the disease, just showed people dancing around and whatever. Meanwhile the commercials for cold/flu medicine makes a cold look worse than colitis. I think they should put a person with severe UC on an episode of ER or something, haha.
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


lambkins
Veteran Member


Date Joined May 2008
Total Posts : 574
   Posted 7/7/2008 11:51 AM (GMT -6)   
I count myself very lucky as the friends i have stand by through thick or thin they might not understand but they are always there to lend a sholder or to have a laugh.I know a lot of people but my true friends i can count on one hand so i would say i have not lost any friends.
  
  Diagnosed 22.5.08 with Lft sided U/C
  Meds Predfoam 20mg 2x day stopped started Salofalk supps 1gm 26/6/08
  Mesalazine 400mg 2 tabsx2 day


Blue220
Regular Member


Date Joined May 2008
Total Posts : 191
   Posted 7/12/2008 11:33 PM (GMT -6)   
I lost two of my who I thought were 'best friends.'

Like a couple of you have said already it's mostly because I don't party like they do. I don't drink, and that's the hangup with it all since we have just turned 21. It really sucks, but, at least I weeded them out now instead of a ways down the road. Oh well. I found myself new friends a while before the falling out occurred. Ironically, lots of my friends now are nurses who understand my problem! =]
21 years old

Diagnosed with moderate/severe UC June 2007(undiagnosed a while before that. It was terrible. I had to take most of my finals for that semester next to the bathroom).

Now taking Lialda 3x a day, and just started taking Entocort(3 pills in the morning) on 5/29/08. Now I'm down to just one a day for about a week then it's back to just my Lialda and iron.

Severely anemic, now taking 3 65mg iron tablets a day.


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 7/13/2008 12:46 AM (GMT -6)   

I don't think Bratcat has lost any friends. I think there are those close friends who truly care about her and how she is feeling. Then there are the "friends" who may ask how she is doing but more out of politeness than to really know. Maybe it is just their way of dealing with a disease that most people don't talk about. I don't think she has lost any friends. We've been lucky in that even most of mine and my husband's friends and acquaintances have kept in touch to see how our daughter is doing. Many sent cards, flowers, called or sent little gifts during her surgery and recovery.
Granted, Bratcat is not at the college party stage yet. She has had to decline spending time with friends when she was flaring and needed to be near a bathroom.

UC since '76, why can't you tell anyone about your UC? At least if you said you had a digestive problem or stomach issues that cause you to need to take bathroom breaks, at least there would be an understanding as to why you couldn't carpool. I know UC isn't exactly a "pretty" disease but you can let people know about it without getting into all the details. And you shouldn't be ashamed of something that you have no control over.


--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 15 mg prednisone, Remicade
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!  7/3/08-Step 1 j-pouch surgery


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 7/13/2008 5:42 AM (GMT -6)   
I am quite lucky. I have had friends that stuck by my side for over 20 years. At first, I didn't tell them what was wrong with me because I feared what they would think. After a while I couldn't hide the fact so when I told them, they're like well why didn't you tell us sooner! But I have had acquaintances that I have lost along the way but I think it was I that pulled away, not them. When they found out that I have Uc and I explained to them what it was; I couldn't handle the look of pity in their eyes. I don't do pity.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs), Hydrocortisone E's, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Allegra
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections~bulging discs C5,C6&C7~1st epidural injection 7/15
To help Healingwell - click here: DONATE
 
 
 
 

 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30366
   Posted 7/13/2008 1:08 PM (GMT -6)   
Sherry...at least there was an emotion other than "so what's the big deal?"
Maybe it was sympathetic rather than pity?

Great to hear your friends are supportive (more than I can say for a certain SIL)

q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  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 !!!


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 7/13/2008 1:20 PM (GMT -6)   
I know the difference between sympathy and pity.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs), Hydrocortisone E's, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Allegra
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections~bulging discs C5,C6&C7~1st epidural injection 7/15
To help Healingwell - click here: DONATE
 
 
 
 

 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30366
   Posted 7/13/2008 1:29 PM (GMT -6)   
So, false empathy then? or patronising? Can you explain further...just wondering because I haven't experienced it.
q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  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 !!!


jars05
Regular Member


Date Joined May 2003
Total Posts : 297
   Posted 7/13/2008 9:06 PM (GMT -6)   
Heck this disease has made me a loner from day one. My gut has ruled my life from day one. I feel sorry for my wife.
Age: 30
Location: Missouri
Diagnosed with UC in 1997.
Medications: 100 mg Azathioprine a day
Supplements: 2 Omega 3s, b-6, calcium, and multivitamin
No. of colonoscopies: I lost count at 6...LOL!
Last scope: 10/9/05-everything looked ok.
 
 


PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 7/14/2008 7:29 AM (GMT -6)   
I've managed to lose friends and get excluded from family events. My husband and I live in NY while his family is in southwestern VA. Early spiring they got all the kids together (11 total between 3 families) and took them to Disney. We weren't even told because they assumed I wasn't capable of making the trip there for my son was excluded from the family get together. I still cry about it thinking how much my health is effecting his life already. They got everyone together again in June, gave us 2 days notice and again said "we didn' think Kim would be able to make the trip or we'd have called you sooner" at that point the only reason we didn't make it was because neither of us could get time off. Hubbie is doing his best to let them know I can travel and am in good enough shape to tolerate what a trip like that can include so hopefully they will change.

On top of that I have almost no friends left, they all think I'm blustering and making things up to seem more important than them. Is it my fault I have had 6 surgeries already and 2 major diseases???? Did I choose this?? No I was dealth this hand and I am doing my best with it, I don't go around bragging about what I have I just happen to have been through alot so when they ask about things I usually have answers and they think I'm trying to be a know-it-all. I don't volunteer things I only tell them when asked . . . .why do they get so upset and stop talking to me when they were the ones that asked for my input in the first place???? I really don't understand people some times.
Kim
========================
~ Mom of Nathaniel aka "Peanut" 18m (6/08)
~ Married ~ 36

"The List "

- UC dx 8/2000 - Culturelle 1x day Prenatal Vitamin (good folic acid level and the only iron supplement I can manage to take)Colozal from 6/2001-7/2007 Asacol 8/2000 -5/2001 no effect - (Currently not flaring but not what I would call in remission either.)
- CKD Stage 3 (Chronic Kidney Disease) dx 9/2007 with FSGS - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferolicit IV bi-weekly for now (re-evaluated every 16 weeks)
- Allergies - Zyrtec 10mg  - skin hives when exposed to water (not kidding)(haven't been tested officially but pine alergy is also suspected)


perach
Regular Member


Date Joined Apr 2007
Total Posts : 116
   Posted 7/14/2008 3:21 PM (GMT -6)   
I lost one of (what I thought was) my best friends.  She became pregnant and thought I wasn't paying enough attention, calling enough, etc.  If she had asked friends in common why I was out of touch they would have told her that I was terribly sick at the time and barely making it through the day-but she just dropped me like a hot potato.  It hurt at the time but, as so many others here have said, the friends I have now are supportive and caring-they can be relied upon.  As you get older, you realize how important this is and how rare it can be.  I cherish the good friends I have.

-currently having a mini-flare
-Lialda (4 pills/day), canasa, Align probiotic, kefir, multivitamin, calcium with vitamin d, iron


quincy
Elite Member


Date Joined May 2003
Total Posts : 30366
   Posted 7/15/2008 12:01 AM (GMT -6)   
I call it quality vs quantity...

It hurts to be sure, but everyone has their own life and own perspective on why they want/need friends. UC might not really be the issue..it might be that our own personalities and perspectives of others have changed because of having and adjusting to UC and possibly have shut others out either intentionally or unintentionally.

We never know who we'll meet tomorrow, but I think we have to be our own best friends firstly...

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  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 !!!


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 7/15/2008 12:17 PM (GMT -6)   
Yes, I have lost friends in the last year but I don't think it has a lot to do w/ UC (no one outside my family even knows I have UC!). I was always the "last resort" friend in high school and I just grew further apart from my high school friends as we went to college. Anyway, all of my HS friends knew I was really sick last summer, and I only got text messages from 2 of them saying "feel better," so I pretty much figured they aren't really worth my time. 
However, I do think my UC prohibited me from making friends (or having acquaintances become friends) in college. I was sick a couple times 1st semester and all of 2nd semester, so I would just go out to attend class or bring food back to my dorm (need to be close to a bathroom!).
Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (2nd infusion 06/26/08), 2.4 g Lialda
*exploring the option of surgery
 


ThePostmodernIrony
Regular Member


Date Joined Feb 2007
Total Posts : 344
   Posted 7/15/2008 1:38 PM (GMT -6)   
I agree with quincy about quality over quantity. I have some friends that really care about me and thats worth more than anything. I have people who its awkward to hang out with because of situations described above.But I think knowing you have some really good friends is whats important and if you meet new people just be upfront about who you are and fate will decide if they stick or not.
UC diagnosed January 05

Past Meds: Azasan (Imuran) - piercing chest pains after six days so tried different brand aka Azathioprine - morning nausea /didn't really help after more than 6 months, dicyclomine (still flared), Remicade - 7 treatments (stopping because no dramatic changes), allergy shots (03-07), levbid
Current meds: Asacol 3 - 3x, Aciphex (acid reflux), prednisone 10 mg now tapering, multivitamin, caltrate 2x a day. probiotic (florasmart), astelin (nasal spray as needed for allergies), fosamax (bone density), canasa

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