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Posted 6/21/2009 11:06 PM (GMT 0)
my friend's dad just spent the last 2 hours telling me how his friend cured himself of UC with some special seeds.  he said surgery is not good because your entire metabolism changes and you lose water absorption, etc.  too bad my colon was already yanked out during emergency surgery.  he doesn't know i have a bag - i didn't say anything at the time and just let him go on.  i was too busy feeling bad - like maybe I didn't try enough before surgery (although i tried what seemed like hundreds of natural therapies and Chinese meds).  he said you don't want to end up with a bag - you want as normal a life as possible.  true, but too late for me.  he said UC starts from a bacterial infection that remains untreated or progresses after many years.  if i really want to be reconnected, i'll have to have my midline re-opened for a j-pouch.  but i only have 1 lousy inch of colon left behind, so it may not even work.  he wouldn't really let me speak much, so i just listened.

the other day i went to happy hour with my friends and the guys were checking out women (as usual) and critiquing them from head to toe - boobs too big, not big enough.  being around shallow people with an ostomy kills.  and yes, most people i know are somewhat superficial and shallow - i suppose we all can be.

i don't even know if my post makes any sense.  i'm too angry and depressed from all the crap i hear and having to cope, although i thought i was doing okay.  Maybe I'm being ultra-sensitive.  hate being single with a bag.  thanks for listening.

Posted 6/22/2009 12:51 AM (GMT 0)
Jen,

Please don't let shallow, misinformed people get you down! UC cannot be cured with seeds, but it is cured with surgery, and the good news is, you are cured and will never have to be sick again.

I'm married, so I don't have any experience with having an ostomy and dating, but if a guy likes you for who you are, and you tell him (when you're comfortable) what you went through with UC, he will be happy that you are not sick anymore and will not care about the ostomy. It will be a good way to weed out the shallow guys from the good guys with good hearts.

I have a permanent ileostomy, and do not have any issues with dehydration. The small intestine absorbs fluid, too, so you don't need to give another thought to anything that guy said. You're healthy now, and that's all that's important! :)

Posted 6/22/2009 1:39 AM (GMT 0)
your friends dad does not know what he is talkign about, i hate when people do that, it just makes us second guess our decisions and ourselves. People shouldnt spout off like that when they have no idea what they are talkign about!

And as for the shallow people thing, i am, self admittedly, probably one of the most shallow people you would ever meet. And that was sooo hard for me! the self image thing was killing me, casue i just knew i would be ugly and icky, and even though i am married, of course noone wants to be thought of as ugly.
But i gotta tell you, i still get my share of looks and guys trying to pick me up! I say no of course, but hey, the flattery is nice, lol.
And my friends are pretty shallow too, and after i finally told them, they were fine with it and had had no idea the whole time.

So dont worry so much about the looks side of it, although i know that was one of the absolute hardest things for me.
Posted 6/22/2009 3:59 AM (GMT 0)
Jen,

I will soon have my ileostomy for 25 years in July and was 23 when I got it. I will be married for 18 years in October. I was single and dating when I had mine. Began dating my husband before I had surgery, due to other circumstance we broke up for a while, dated others, and ended up getting back together and getting married. It is possible.

And Cecilia is right, there are some really shallow people out there. I was very fortunate that all of my friends have been just fine with my new plumbing.

Hang in there.. prove everyone wrong.. that your surgery has made you healthy, and able to "live" your life again!
Posted 6/22/2009 2:57 PM (GMT 0)

I understand how difficult this all must be for you.  Especially after hearing what you did from your friend's dad.  Does he have a medical background or credentials in the GI area?  If not, then I would be apt to set him straight. 

My doctor explained UC to me as being a fluke deal.  My system possibly had a predisposition for the disease and it became active when it happened upon a certain virus I had contracted (no one knows what virus that may be) and BOOM the disease was active.  Also, everyone has different levels and affects of UC.  I personally become very upset when physicians just throw out the term 'colitis' and tell patients that have it.

As for the cure issues, we all know there is really just one 'cure' for UC.  Maybe his friend found remission and had a very light or non-intrusive form of UC. 

I am 28 and LOVE my ileo.  Granted I am married, and I do not feel the pressures of dating, but I do understand the superficial friends and vain feelings. 

I am so sorry you are having these feelings and doubts.  Please know that many of us are very pleased and absolutely giddy with our lives with the ileo!  I personally feel my metabolism has sky rocketed since the surgery and life is finally good!  : )

smurf
Posted 6/22/2009 6:53 PM (GMT 0)
Your post doesn't say your age range, but from the sounds of those guys you are younger than me!! I have to say that I was 31 and married for my first ileo AND I have Crohn's so no cure for me...I am still self conscious, but that is because I am AGING, not because I have an ileo!!

I know my ileo GAVE ME LIFE and it appears that you see that, too, for your life. It's okay to have a pity party for yourself, don't beat yourself up over that...think about what you WOULD NOT have been able to do today, had you still been sick, as opposed to what you have to "live" with...it makes you see thinks a little clearer:)

Hang in there, you'll get through this rough patch...and your night in shinning armor will find you and see you for the person you are!!
Posted 6/23/2009 3:11 AM (GMT 0)
Bull Crud about sees!

Don't you think EVERYONE would know about a "cure" if there was one. Bull.

B4 surgery I wondered if I had surgery, then they'd probably find a cure like next year b/c they keep saying they are so close. But then I met some ostomates who said their Dr. told them the same thing 10 years ago. NO WAY am I going to wait another 10 years for nothing. I feel better NOW.
I hope there is a cure someday. I hope they can find the cause.

Some people are just uneducated and you shouldn't let their ignorance upset you. He doesn't realize the damage the dz's do to your body with your colon. That's much much much worse.

Chin up. Don't let the man get you down.
Posted 6/28/2009 2:41 PM (GMT 0)
 Jen, we all will get frustrated,like you said, with everything around us, but we cant let the ******s get us down. seeds! come on. our cure is to remove our colon. thats it. or go on living with the disease disrupting and controling our lives. my disease was ulcerative colitis. i had my colon removed a week ago because i realized that crapping on the side of the road or in a parking lot or... the list goes on ...became acceptable to me. well, its not acceptable to me . i had to do something and all the drugs either stopped working or didnt work. this flare went on for 2 years. lots of drugs lots of "accidents" lots of missed work. so here i am , recovering from the first surgery. i have a bag, and several incisions trying to heal.this part is all new to me. in the hospital, even with great help around me, i felt very frustrated at times. one night i pulled my IV's and tried to get dressed to go home. i still had catheters hooked up too.i i had no shoes, no car , no money ,where the hell was i going? i was frustrated...everything i read from those who have gone before us gives me hope that i m doing the right thing and with patience i will feel better than i have in years. i believe them. i may still get frustrated and may even take it out on the wrong people, but still believe im doing the best thing. when i post im mad or frustrated or discouraged , you remind me of what i wrote to you today! i need you.

Posted 6/28/2009 10:47 PM (GMT 0)

Oh Jen, I am sorry you have to listen to these uninformed people give you advice.  Please don't listen to your dad's friend.  He has no idea what he is talking about.  I wish stupid people like him could be told stupid things about their problems and see how it feels!  Believe me, I went through a fair amount of crap from stupid people when I had surgery.  I had people tell me it was a dumb idea, I had friends leave me because of my decision (is that crazy or what?).  I know it's tough to stand tall; you have been through so much and are still in recovery.  I suggest you walk away from anyone who intentionally or unintentionally makes you feel bad.  You need to surround yourself with people who care.

Sue

Posted 6/30/2009 12:47 PM (GMT 0)
wow, thank you all for your responses.  feeling better because of them.

why do people think that just because we have a DIGESTIVE disease it means it is caused by something we EAT or that it can be cured with diet or special foods/herbs/seeds/whatever.  if it were a brain disease or something else, I don't think people would be telling us to eat seeds or making us feel bad that we ate the wrong foods or had surgery. my GP said UC is like a designer disease in that the disease pattern and effects on people are never alike, so maybe the seeds worked for a few people or maybe it was a fluke or maybe they had something similar to UC or an undiscovered type of UC.

ok this may be a lame question, but if guys are willing to accept an ostomy if they really like you, then why do so many guys (seem to) talk so much about physical appearances and comment about women's bodies? of course women do this too, but when guys do it i get depressed.  Hearing things like "her stomach is flabby" or "i want to go to the beach to check out cute chicks in their bikinis" makes me think they would never want any romantic involvement with me since my figure is, for lack of a better word, disfigured.

@summerstorm: you mentioned quite honestly that you are "admittedly, probably one of the most shallow people you would ever meet"  - Can i ask why you elected for the permanent ostomy over the jpouch? does it bother you?

thanks.

 

Post Edited (Jen_J) : 6/30/2009 6:50:40 AM (GMT-6)

Posted 6/30/2009 1:14 PM (GMT 0)
Jen,

You're hanging around the wrong guys. They lack maturity. None of my male friends behaved that way; they may have thought that way but they never verbally expressed it and had they I would have given them an earful. You might want to enlarge your circle of friends. Look for people who are different from the types you normally look for and you might be surprised by what you find.

Sue
Posted 6/30/2009 2:05 PM (GMT 0)
Jen-I went for the perm ileo becuase i didnt want the risk of having to deal with a jpouch failure or the chance of the urgency that could come with it. I wanted it over and done with! I have a kid who needed me as quickly as possible and the less surgeries the better!

I had trouble at first accepting it as part of my body image, but hey im not 21 anymore either, so i dont have that great of a body anymore anyway, lol. the main thing i had trouble with though, was that when i came home from the hospital i was 122 (way more than that now, lol) which made me look like a skeleton, and i had that huge scar runnign up my stomach. the bag on my stomach bothered me, but with those two other things i felt like i looked like a monster!

But now it doesnt bother me at all, noone can tell, noone has EVER noticed it not at the beach, the pool, not dancing and it hasn't stopped one single guy from coming up and hitting on me, lol.
Now I love to look at a pretty person as much as the next person, and i do place way too much on looks, but if i was friends with someone who i found out had an ileo i wouldnt care. Possibly 15-20 years ago (god im old!) i would have cared, but i sadly grew up, lol.
Men, esp young men, love to talk about hot women, but honestly, they all KNOW they dont stand a chance with the super hot girl that looks like a model, they are just trying to impress each other, not sure why they think thats going to impress the others.
That was a rambling answer, but then all of mine are!
Posted 7/1/2009 1:16 AM (GMT 0)
jen,   we guys can be pretty critical when talking about women...like were so perfect.its just guy talk. i work construction so i probably hear stuff like that more but its just talk. when it comes down to it attraction is really on an emotional level. thats how i have always thought. you may have to learn to weed out the shallow guys but i think theres plenty of guys out there that feel like i do ,ya know, being attracted to the personality. my bag is new and should be temporary and im married so our situations are different but i think i understand where youre at. acceptance is very attractive in a person. heres to accepting the hand weve been dealt! thanks for being here

Posted 7/1/2009 1:53 AM (GMT 0)
I don't understand guys either. And I married one.

I do remember learning something in school about men being very visual and women being emotional. You can blame it all on evolution. The bigger the boobs and hips, the more likely the women would be to have no probs having babies. And for men, the more compassionate they were, the more likely they were to STAY and take care of a family.
Posted 7/1/2009 2:20 AM (GMT 0)
sorry if i sounded like dr.phil...lol
Posted 7/5/2009 12:23 AM (GMT 0)
I have to start by saying I love my husband and he has done so much for me... But being married is not all that great while having a bag too!!

We had a "discussion" this week. I always felt that it was unfair that I had to deal with this crap all the time while people who think they know what it is like, get to walk away from me and don't have to really deal with it. It is 24/7 for us. I just recently started going out again with friends and I found that in a state of panic, I just go out and show all my friends my bag. They always knew I just "got sick" all the time but never really understood what UC was. Now, the bag gives them a visual, I guess, so they act like they are listening when I talk about it. But it is like a twitch. Anyone I know I ask, "So, you want to see my bag?" and then I go into detail about the scars and what they did...

I digress... my point is that my husband, although he means well, really gets on my last nerve when he complains about how tired he is... Now that I am unemployed, it's like I apparently don't know what it is like to work 8 hours a day... Well, you know? I don't have a colon! I have a poop bag attached to my belly! None of my pants can button closed, I have to get a one piece bathing suit, I can't eat my favorite bagel, I haven't slept in two days and I haven't slept on my stomach for 2 months!!!! "I bet you had a hard day!!!!"

He tells me he just wants one day for him to be pampered... How about when you have a miscarriage, three blood transfusions, total colectomy and an ileostomy ALL IN ONE WEEK- then I'll pamper you!!!

(I'm glad he only hears the stuff from this forum that I read to him!! :))

And, I am having mine reversed, that was the plan from the beginning, and I only have like an inch of my colon left. I'm sure you could talk to your doc about getting reversed. Also my incision is so small- like about 3 inches and it is way low on my abdomen. If you are in the Atlanta area or can get here, I feel like I have the best surgeon EVER!! He is very crafty with his incisions.
Posted 7/10/2009 9:00 PM (GMT 0)

thx for sharing.

i guess men also have certain needs or need attention/love and may feel neglected even though the patient may be suffering more....i actually have no clue since i've been out of the dating game for so long lol. 

my incision is about 10" long shocked it's huge. 

i go back and forth on the j-pouch.  mostly i want to keep my ostomy longer.  but it's nice to hear that i still have the option since you also have only 1" of colon and are going for the reversal.

people look at me like i'm nuts when i tell them i'm considering keeping the bag.  they really think i'm crazy. Even my mom.

i think if i meet a guy he will need to be okay with the bag, either now or later, because i could have a bag later in life anyway.


Posted 7/12/2009 3:30 AM (GMT 0)

Jen_J said....

 Hearing things like "her stomach is flabby" or "i want to go to the beach to check out cute chicks in their bikinis" makes me think they would never want any romantic involvement with me since my figure is, for lack of a better word, disfigured.

You are surrounding yourself with a) worthless ppl; or, b) teenagers.  They're not quality ppl you want to get to know better anyways, forget about them.  They sound very inconsiderate.   Now, the guy across the room making eye contact without any comments....he might be someone to get to know better ;)

Personally I'd stick with the ostomy btw,  my surgeon told me a jpouch would put me in the washroom more then an ostomy lol.  Plus no pain, no meds, what can you complain about besides some loser guy comments :)

As for the the guy who says seeds fix UC? HAHA yeah right, sharp pointy undigestible objects in the digestive tract fixing UC. That guy is SO out of tune.  I know before my surgery ppl acted teh same way-grasping at straws for a solution, even if it was ludicrous--**** my dad even suggested a "bum transplant" harharhar!!  Defff don't listen to "advice" from uninformed ppl-they really have no clue

Matt

Posted 7/14/2009 6:15 AM (GMT 0)
If you feel comfortable with the bag I say keep it as long as it's working for you. That's your decision.

I've always hated how people without the disease LOVE to tell you how to cope or "cure" it. I hated when I would tell someone why I missed work for 3 months! They would ask what UC is and I would take the time to explain digestive diseases to them- how can we break the stigma if we don't talk about it. Anyway... the most common response was, "Oh... I think I have that too. My stomach hurts all the time." They don't know how bad it can hurt. They just don't get it.

I've also found if you if you ask a person who thinks they have UC after you explain it and ask them the name of the disease a week later- they can't remember it.

Hang in there! And do what works for you!
Posted 7/16/2009 8:53 AM (GMT 0)
thanks. . . . good point about the quieter guy in the corner, even though the other guys are louder and more noticable.   there is always something hot about the mysterious guy cool   

i'm not sure what seeds he recommended, maybe fenugreek or something else.  i've read through some posts on this forum and people swear these things have helped (even cured?) them.  today my friend told me her dad saw it with her own eyes and that it definitely worked and why would i want to live with a bag.  even if it did work by some miracle, would i feel as good as i do now with my ostomy, i wonder?

Liza D - i've had the same reaction... people telling me "oh yeah my stomach hurts too" and not understanding how it was possible to miss so much school (pre ostomy days). 

when i tell close friends i'm considering keeping the ostomy, some look at me like i'm a nut job. 

"why would you want to do that when the technology and science exists to give you the option of getting rid of it (j-pouch)?"

"wow - you actually want to make it permanent? are you SURE?"

makes me wonder if i'm really making a bad decision.

 

Post Edited (Jen_J) : 7/16/2009 2:57:19 AM (GMT-6)

Posted 7/16/2009 1:36 PM (GMT 0)
cranking up the humor meter (((((((laugh))))))))
A seed? wow that's funny. Please ask him for some of these seeds and tell him to send me some of those magical beanstalk seeds so I can sell them to my friend jack.
Is this the same person that says the government is trying to kill us?


lol all joking aside.... Any intelligent person will tell you that surgery is for the better. At one time I thought I could fight this problem with a strict diet and a strong mind. I lost that battle but so far surgery was best decision I ever made. I would educate your friend's dad just like I inform so many others that don't know much about the disease. Just because some people are in remission right now that does not mean they found the cure. The disease will eventually rear its ugly head. It could be 2 months away or 15 years from now but it does not go away with pills, seeds or herbs. The disease can be managed yes but never completely cured especially not with seeds. Surgery is the closest thing to a cure.

Guys checking out babes? well that's completely normal but I don't think any real men would outcast a woman for wearing a bag.

a footnote that you can use to educate your friend's dad:
There is no proof that bacteria alone causes inflammatory bowel diseases. It is true that there are a lot of medicines and foods that can disrupt the bacteria in your body that can potentially damage the intestines.
In children, doctors are reluctant to prescribe antibiotics because of this and with adults there are many medications that can trigger inflammation because of damage to both the DS and IS .
The digestive system and immune system are so closely related that doctors and scientists are left scratching their heads.
Also, your metabolism changes for the better after surgery because you will never get too overweight.
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