Should I ignore/stop hanging out with my life before crohns friends?

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UC21
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Date Joined Oct 2009
Total Posts : 68
   Posted 2/1/2010 1:58 AM (GMT -7)   
I have a really close group of friends that I used to have a lot of fun with, but that was then this is now. They don't seem to understand that I am sick and can't do the things they used to.

They know "of" Crohns disease, but really have no idea of what it is like to have it..... Nobody does.... Except for you guys.

Even when I tell my GI doctors that my stools have been formed lately and I go 2-3 times a day he think that is good, but he doesn't understand how uncomfortable I feel when I say I am "gassy" or "bloated".... I feel like I am sitting on pin cusions for most of the day. ...Sadly, this is probably his idea of "remission".

It's just frustrating because I hate talking about it..... Often times these guys will call me to go out to dinner or to a bar, and I will flake... Then I will feel bad, and go out with them and do something stupid like eating 3 soft pretzels 2 nite at 2:30 AM....

In essence its probably best if I just ignore them.....

I remember my doctor telling me that Crohns is a lifelong affliction not a death sentence... I hate to say it, but sometimes it feels like it is. Just making basic life adjustments can be hard...

it's funny there are millions of sick/paralyzed people out there yet I feel like I am all alone.... I guess that's what being around healthy people does to you.

teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 2/1/2010 2:26 AM (GMT -7)   
Hi UC21 remember on thing you are never alone we are always here for you. I would consider
maybe finding a new GI doctor one whom is more understanding and caring.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital

in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.

My GI doctor has me on and Humira. B-12 injection once a month.
Also diagnosed with Rheumatoid Arthritis.


Wren12
Regular Member


Date Joined Jan 2010
Total Posts : 42
   Posted 2/1/2010 3:12 AM (GMT -7)   
Hi UC21. I"m sorry you are feeling this way. I'm sure we all have and sometimes do though. I am only new to a Crohn's diagnosis and this forum but hope that i can help in some way. I had the same problem with my GI when things seemed to be a little more settled, even though I stilll felt awful. What it was is that he wasn't so much saying that I was all better, he was just glad that things were more settled then they had been and he was then able to start weaning me off hte prednisone and start me on a more long term medication.
I agree with Teddybear though, that if this isn't the case, try and find someone else. As your Doc says, this is a lifelong affliction, which means you need someone who is going to look after you correctly and kindly throughout as much of it as possible.
Diagnosed with Crohn's in November 2009 but suffering since I was a child.
Currently weaning off Prednisone and just started Imuran


snohare
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Date Joined Oct 2004
Total Posts : 2088
   Posted 2/1/2010 4:07 AM (GMT -7)   
This is a problem that I have on a perennial basis. Once upon a time I compartmentalised my life and pretended that all was fine; this is not a good move ! What I found worked well was explaining in detail, one to one, what exactly was likely to happen/needed to happen/I was afraid of, when doing various usual activities. Word spreads, because at some point they will have the customary "What is happening with..." conversation. What I found was that although my friends might not "get it" (family is actually worst for that I found, as they are in denial) often they would know this, and they would make allowances as long as they knew what the modus operandi was.
They are your friends; if they haven't given up on you, particularly not on asking you out to things, then you shouldn't give up on them. They are jewels beyond price, that once given away can never quite be replaced. Many of my old friends soon lost the habit of asking me to go to the pictures etc, which is a very common thing if you say no a few times (it seems to be human nature - people assume you have something better to do sad ) and having lost touch I miss them sorely.
I think Teddy is right yeah if you can't get the doc to at least discuss the emotional impact of the disease then you need to find one who takes the problem more seriously. At the end of they day, it is all about how you feel, isn't it ? But again, doctors are on a learning curve, don't learn the day to day fallout from the symptoms unless they learn it from someone, so sometimes you have to spell it out - i.e. "Sort this problem, I can handle the rest, but if it is not sorted I feel I have no quality of life".
Don't forget too that it is very common to suffer from depression due to damage to the gut - half of your body's neurotransmitters are made/used in the gut - so how you are feeling may be as much a reflection of that as of the real social situation. Gut feelings really are not just a saying. That's why antidepressants are such a common medication for Crohnies - helping one helps the other. Personally I crash and burn emotionally every time I so much as begin to flare; and I have learned the hard way not to cut ties when I feel at my most isolated.
We're here for the Crohn's bit of your life. nono But you need folk who can hug you during the other bits (yes, you will get time off someday !)

MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 2/1/2010 6:14 AM (GMT -7)   
I am going to differ a bit here -- a gastroenterologist treats diseases of the digestive system. He is not a mental health counselor. Let him do his medical job and consider seeing a psychologist or other qualified therapist/counselor to discuss your life adjustment issues, which we all have with Crohns.

xraygrrl
Regular Member


Date Joined Aug 2004
Total Posts : 102
   Posted 2/1/2010 7:02 AM (GMT -7)   
UC21, I've lost friends & a husband due to my Crohns & I think I'm way better off. The friends that have stuck with me & my new, understanding husband, are the best things that have ever happened to me.

debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 2/1/2010 7:51 AM (GMT -7)   
Mike, I kind of feel your response to be a bit rude or a little abrasive. His post simply claims that he feels a bit "left out" or a bit down.

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 2/1/2010 8:24 AM (GMT -7)   
You might want to look for a story called "the spoon theory". It is pretty good at explaining the toll that a chronic illness takes on a person. You could use it hand in hand with explaining more about your particular symptoms to each friend, one on one. That way, as posted above, word will spread and then accommodations can be made for you. Clearly your friends haven't given up on you or they wouldn't still be asking you to do things. Maybe you could be the one to suggest the activities, and make it something that suits your current situation. If that is a night in watching DVD's with safe snacks, so be it.

As far as the doctor goes, if you are making progress, but not getting where you want to be, you need to speak up. Ask what the doctor has planned for your long term care. 3 months, 6 months, a year, change of medications, which ones next, more testing to see progress of disease, Is this what the doctor thinks is remission, be honest and frank. The doctor may not be the right fit for you, or may just be pleased that you have made some progress. This is a chronic illness and we need to find the right doctor, someone who we see eye to eye with and who has the same goals.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


artist guy
Veteran Member


Date Joined Jan 2010
Total Posts : 1373
   Posted 2/1/2010 8:47 AM (GMT -7)   
i found people who I work with I've told some that I have an on going medical, meaning I can call in sick at anytime and not risk getting fired, I had to get a personalized letter from my dr. and give it to human resourses, in turn they give it to my pit manager. so my fellow dealers, they ask me whatis crohn's? it's hard thing to explain that never had any kind of gi problem, I just say it's the worst diareara x 10. they then get the hint. so if you have friends that don't get it, you have to school them a little in a nice way. with close friend you can get more detail but worker people keep it simple

artist guy


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 2/1/2010 10:51 AM (GMT -7)   
I've almost lost friends over this disease. I just can't do half of what I used to do (ski, run, backpack, etc.). Losing all of that was a huge blow for me. Took a long while to adjust and re-learn to love me without the "definitions" of me. It's taught me a lot about who I am and what's important. It's a very difficult transition for all of us going through it and I resisted therapy and anti-depressants for a long, long time. I wanted to believe that ... I was about to go into remission and be able to do all I used to do ... I'd find a med that would work ... I could handle it, I'm strong... On and on the list. But, I've finally admitted that therapy would help. I've had a couple sessions and look forward to the third. I personally need help learning my new way of life. I don't think what MikeB said was in any way meant to be abrupt. I also know that my feelings were severely hurt when my old GI suggested I needed therapy. Of course, he was right, but he was abrupt and blunt about it and it hurt my feelings. So, I don't mean to do that here either.

Friends don't get it, often, unless they've been through something... The younger they are, the less they will understand (as a generalization) unless they have it or some other disease. I don't think you need to forget about your "old" life and friends, it just takes time to learn how to juggle and transition to the new you. The "new you" is just as worthy of love, friendship and fun as the pre-IBD you. I think the nature of this disease makes the hit harder in many ways. It's not something we can openly really discuss to very many people.

Hang in there... All I mean to say is that you're not alone. And you will find friends and a life that works for you and you will grow from all of this. You are a strong person just learning more about life, which gives you more to offer to others - a perspective and wisdom.
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia, MTX . Dx Osteoporosis 10/08 started Forteo 1/27/09


vixen
Veteran Member


Date Joined Jan 2010
Total Posts : 794
   Posted 2/1/2010 3:51 PM (GMT -7)   
I am guessing that your friends really do not know what it is all about and have no real interest in finding out. I do not think that it means they do not care they just 'accept' you have it....... end of!!
 
I know a girl (not exactly a friend-more friend of a friend)with it and thought ok, Crohn's she gets an upset stomach once in a while and tbh thought no more about it, afterall it did not affect me. Maybe that sounds harsh and selfish but I just really didn't give it a thought.
 
Now however, my son has been diagnosed and what a steep learning curve for me. I did not realise what a devastating effect it could have on someones life I never thought of any of the other issues beyond an upset stomach. It really makes me cringe now.
 
They don't understand that you are now in a different place but I believe that it is through ignorance simply because they do not see the bigger picture. They are still your friends though and it would be a shame to let them go. Have you ever talked with them about it or are you one not to? Maybe they are scared to ask you about it or maybe they value your friendship but simply do not want to know about your illness. Maybe try to look at things from a different angle-if the tables were turned and it was one of them that had Crohn's and you didn't how do you think you would be with them? Just a thought

UC21
Regular Member


Date Joined Oct 2009
Total Posts : 68
   Posted 2/4/2010 12:03 AM (GMT -7)   
I really don't want to get treated for depression. I am definitely depressed... No doubt about it as I have ALL the symptoms. However I am ONLY depressed because of IBD...

I also don't feel that I am a stronger/better person because of this disease. Ever since the diagnosis I have been extremely vindictive... I hate the fact that my 60 year old parents are healthier than me.

Before this disease I used to

- run triathlons
-have sex with college girls
- was going to be a marine officer
- drink like a normal college kid
- love life
- have a stomach like a rock (would eat a box of oatmeal squares per night and have no problem with D)

I didn't realize it at the time, but I had a really good life.... Like better than most!!!

The point I am trying to make is I'm depressed because I am UPSET which is completely natural.....

All we can really do is hope... If my crohn's came out of the blue, then my remission can come out of nowhere as well....

Wren12
Regular Member


Date Joined Jan 2010
Total Posts : 42
   Posted 2/4/2010 12:43 AM (GMT -7)   
I think you have summed it up UC21

'All we can really do is hope... If my crohn's came out of the blue, then my remission can come out of nowhere as well....'

I really love what you have said there as it has given me hope.

I think that if you can keep remembering that, then maybe you might be able to get yourself a bit more positive when you're feeling upset.

I understand how you feel and I wish that I had the words to help you feel better but as I'm only newly diagnosed myself, I am trying to come to terms as well.

It probably won't help but when you are feeling bad, remember that your words have given a fellow sufferer hope :)
Diagnosed with Crohn's in November 2009 but suffering since I was a child.
Currently weaning off Prednisone and just started Imuran


Toodles
Regular Member


Date Joined Oct 2006
Total Posts : 405
   Posted 2/5/2010 6:34 PM (GMT -7)   
*hugs* We all have to vent from time to time. It's difficult to go from healthy to now for many.
I've always had problems with my stomach, so I'm kind of used to it. But flares are painful and emotionally draining.
I became sick when I was nineteen or twenty. College was not the same experience for me as it was for other people, but it's okay. Really. What do you get out of drinking? Believe me, I like cocktails and drinks. But when I drink all I get is a burning stomach and I'm sick for days rolleyes I also would have to say that having Crohn's does not mean you can't have sex. Sometimes you can't on bad days, but it's not forever. Otherwise, none of us chronies would have kids. I had a love life and let me tell you that if you find the right person, they will understand that you can't have sex on bad days, that you don't feel up to going out to eat, and they'll be there for you when you need them. Another thing, eating out: nono . Unless you're eating all natural when you're at a restaurant, bad idea. I actually learned from someone on this forum to eat all natural. It was the best advice EVER. Eat before you go out and order a drink if you can tolerate it, like tea or lemonade. I can't have either. If you can't handle anything other than water, then order water. Or a dish that isn't breaded or has a sauce. Get something like a steak and veggies or mashed potatoes or stick to bread, something safe.
You'll learn as time progresses. For now you should focus on finding foods that fit your tummy's needs. This will make life with Crohn's much easier. 
Going two to three times is fantastic by Crohn's standards. Some don't go and others have the big D all day. I used to go 8-10 times a day, liquid, and picasso poop (feels like glass cut at different angles). It was terrible. Now I'm constipated. All the time..with intestinal pain all day every day. And yet, when I get on here and I see what other people go through because of Crohn's I realize I have it soooo much easier. On bad days my best friends are a hot water bottle/electric heating pad, desitin (yes, the baby butt cream), and my bed. Unfortunately, I can't stay in bed all day but I can definitely carry my hot water bottle around yeah .
Also, you may want to discuss getting on an anti-depressant with your doctor to help you cope. Our emotional being can really affect our physical being. Don't isolate yourself because once you've coped and once you're flare is over, you're going to want to hang out with your friends. It will only make you more depressed. And the fact that you're jealous that your parents are healthier than you is not okay. You've admitted that you're depressed, now seek help!
about your Gastro--Look for someone you're comfortable with. You need someone with good bedside manner. This is a must for me. I travel an hour and half to see my gastro, but he is glorious! He understands my emotions and symptoms. He fits my needs. Find a doctor that fits your needs.
Just a few of my thoughts. Remember we're here for you, so vent as much as you need but be ready for some tough love!     

Crohnie4Life
Regular Member


Date Joined Jan 2010
Total Posts : 69
   Posted 2/5/2010 9:22 PM (GMT -7)   
I agree with Mike. The Gastro should treat the medical. Have a Therapist treat the mental. It works out better, IMO.

ky_girl
New Member


Date Joined Feb 2010
Total Posts : 11
   Posted 2/5/2010 11:04 PM (GMT -7)   
Wow, I hate that you're having this problem! My diagnosis was only four months ago, and in that time my friends have been so helpful and understanding. My closest friends are interested and want to know what Crohn's is and how it is affecting me, and so far everyone's been really supportive as far as understanding if I don't feel well or can't eat something they're having. Now I'm realizing how lucky I've been! It sounds to me like you might need to find another doctor who can help you in a better way, and as for your friends - maybe you're not giving them enough credit. Just be open about what you're dealing with and true friends will understand and want to help you in any way they can. Crohn's will only keep you from doing what you want to do if you let it!
 

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