Another thing I just thought I'd get off my chest: do you all have the same situation whereby doctors, not to mention loved ones, can never understand what you mean explaining pain? They say the Eskimos have dozens or more words to describe snow, and I'm sure we IBDers and auto-immuners have dozens or more ways to describe pain in the gut alone.

Off the top of my head: general soreness inside like sunburn; tight cramps like "stitches" in the side when running; burning "gunshot wound" pain at a local spot; burning pain of food moving/squeesing past a raw ulcerated spot in the gut; little "biting" pain like a little weasel or gerbil inside biting on the gut; the pain of a few dozen pin*****s; throbbing pain "like a bad toothache" but in the gut; spasm pain of muscle contractions moving down in haphazard ripples through inflamed tissue; etc etc.. (feel free to add, lol).

Anyway, it's interesting how one can experience these pains for years, sometimes day in and day out, and they are a compl;ete mystery to explain to non-IBDers whose closest experience is some cramps and aches during a rare foodborne D event that lasts a day or two (not that they are fun).

Christopher UC

My personal feeling is that most people really don't want to know. They are afraid of it. Just describing some of the procedures I have had done have made people cringe and wince. So, I just let them have their fantasy life. To them, a 24 hour case of diarrhea is HORRIBLE. It's like trying to explain infinity to a two year old.

Jan

I agree with Jan. Most people don't really want to know. They may ask how you are feeling but if you try to tell them they get very uncomfortable and change the subject.

BUT, I have used the following terms with my closest family/friends: burning like acid/fire; feeling like you have barbedwire coming through.

Unfortunately most people will never truly understand what and how we feel; not even our doctors can say they do. They may THINK they do, but unless you have "been there and done that", it's impossible to know. My husband KNOWS that I am in pain but he always tells me he'll never be able to understand just how much pain I have endured.

At least with the colon gone things are getting better but we will always have our struggles and challenges (food, pouchitis, fissures, etc). Life isn't perfect and I have come to realize that these things just to happen to someone else.

My husband has been wonderful throughout the whole UC and surgery process and never once questioned or doubted my claims of pain. A couple of years ago after he had bug and a nasty 24-48 hours of diarrhea and running to the bathroom every hour or so he turned to me and said 'I never really understood what you meant by pain. I didn't know how you felt but now I do and I don't know how you got through it."

I personally hope that there will never be many people that really understand what we go through. Because for them to really understand means they would have to experience it and I wouldn't wish this on anyone. I've also had people come up to me and offer sympathy for what I've gone through after they experienced a little bug that kept them in the bathroom for a couple of days. I hope that's as close as they ever get to understanding.
They can offer sympathy and be sensitive without really comprehending what we go through.
I can't really understand what it's like to have cancer and undergo radiation and chemo and hope I never have to but I can be sensitive to the pains and emotional stress of those that have dealt with it.

I just created a metaphor book for school. We were all assigned the topic of a social issue. I chose UC because I think it's something most people do not understand.

One page, I took a pic of my belly and put sticks through it.
I also found a great quote online:
Religion is for those who do not want to go to Hell.
Spirituality is for those of us who have already been there.

I used to describe the pain of UC:
Imagine the intestines as spaghetti. The pain is like jabbing a fork in and twisting and twisting.
Or the worst stomach flu or food poisoning with blood.
And I even remember comparing it to morning sickness. (Gosh I don't miss that!)

Although my family is great in understanding, I get to the point where I don't want to "complain". Even though they assure me that I am not, I feel like if I complain that they will think I am exaggerating. Does anyone else feel like this?

Yes, I feel like I have done so much 'complaining' over the past four years when I was first diagnosed with UC that sometimes i don't say anything and my husband gets upset because I don't tell him how I feel.

I know our loved ones want to know what is going on but I find it hard to always keep them informed because I don't want to seem whinny. If only there was a happy medium out there somewhere.

My mom is very anti-doctor for anything. I don't think she really got it when I was sick with UC until the few weeks before my surgery. Keep in mind she was against my surgery for day 1. She finally saw how sick I really was. Unfortunately it took me doubled over in pain on the toilet trying not to pass out from the pain for her to see that I was really in a bad place. She is a cancer survivor (cervical) and I think a lot of her fear is due to her history. Even seeing us doubled over in pain isn't enough for people to truly understand. Like Jan said I can watch ER and see baby after baby delivered but will never understand the pain involved without ever giving birth myself. ( Don't ever see that happening!)

This message has been edited. Last edited by: AyrishGrl,

I can definitely relate to the feeling that people don't really want to know when they ask you how you're feeling. I forget that for others, the things we go through like IV drips, surgery, ostomies etc. aren't things other people are used to dealing with, so when they ask, I answer and then watch them recoil. I know it may sound ridiculous, but it has made me much more alert to my cat's needs as she has been fighting dehydration! I really know how she feels and understand that I need to keep vigilant, keep watching that she gets liquid somehow. As for the pain, my husband understands because he's spent months lying awake at night listening to me either on the floor in the bathroom, crying and moaning, or moaning in my sleep after step 1 which was a nightmare. The pain for me was this feeling of trying to pass a melon. A lot of the pain is like a distant memory as I was so ill I kind of spent the worst months in a haze. I actually have a certain amount of memory loss from June to December last year, where I remember things in segments. After my step 1 when the epidural dislodged a few hours after I woke from 7.5 hours' surgery and I didn't get pain relief for a further 6 hours, I thought I was going to die. It was worse than childbirth because in childbirth you're helped and encouraged (or should be!) and you're working towards a nice goal. After my surgery I was told "You're not in pain, you have an epidural".

Soph, I've been there with the darn epidural. At Medical College of Virginia after my all-in-one-step j-pouch surgery back in 1995 I too was in intense pain. I went all through one night with it and the next day I complained, saying my readings suggested that I had too much pain. I think they thought I was a complaining baby. Not until the day after that was it noticed that my epidural was infected/clogged and my sheet was all wet with what was supposed to be easing my pain. I remember one surgical resident saying "I'm sorry" and repeating it 4 or 5 times and wringing his hands. Of course I had to roll over for them to fix it, and boy, I did NOT want to roll to my side. When it finally worked properly, it was great.

I kept thinking of war wounded on battle fields of the past writhing in pain. It is all etched on my memory. When I heard before my next surgery at the Cleveland Clinic in 2003 that Dr. Fazio didn't believe in epidurals, boy was I glad!

Carol

My GI would shake his head at me, because when he would ask me how I was I would always say "Ok". In September, when I was hospitalized and saw him I broke down because I had just had it. He told me I didn't have to be so stoic all the time.

I am a strong believer in not complaining (Maybe it's that Catholic guilt- someone always has it worse) but I have found sometimes that means people don't get the seriousness of what was going on.
So I'd drop in things; like if someone was complaining about a stomach bug, I'd say welcome to my world. It made an impact. It also takes people off guard when they ask about my Fall semester and why I wasn't there for the last 6 weeks. And I reply with I had my colon removed. Then they ask "You can live without a colon?" And I say "It's better than living with UC".

I have a VERY hard time coping when people don't understand. After my second surgery, I was in ICU for a few days with a punctured lung. I was 10 at the time, and there was a resident there who would come visit me and make me laugh hysterically about Austin Powers. I had a morphine drip, and the laughing hurt my stomach so bad, that I kept pressing the button for more morphine. A nurse came in and actually YELLED at me about pressing it too much. Being a 10 year old, I was in shock. I started crying, and the resident felt horrible for making me laugh, and left. I didn't see him again until I was back in the regular pediatrics ward. This memory somehow really sticks in my head. It was truly the point where I realized that most people are not going to understand what we're going through, just as I can't fully understand what a cancer patient or amputee is going through.

But as I grow up, it's gotten only harder. I'm now 17, and handle all my medical things by myself. My mom was the one to handle everything my whole life, but my parents just got divorced a few months ago, and she moved in with her boyfriend. My dad doesn't really know how to help me because he's been pretty much absent my whole life. I book all my appointments, drive myself to them, and am learning how to advocate myself. When people don't understand, I stop trying to make them. They can't, and they never will until they experience it. It's just something I'm trying my hardest to accept.

Chelsea, I can relate to the painful laughter, though thank God no-one chased my brother away for this: he came to see me when I was just gutted and miserable after step 1. I was in agony, and complained how demeaning the whole hospital experience was. The night before my op, they sent a young male student nurse to shave my bikini line!! I mean, for crying out loud, was that really necessary?! How humiliating, for both of us. Anyway, I complained bitterly, and my brother, who has spent months in hospital because of pyoderma gangrenosum (horrible disease), said: "Well, imagine me then, being shaved all the time for IVs in my inner thigh. These gorgeous young nurses kept coming in to shave me...down there. I looked like a christmas turkey." He pretended to lift his...erm...crown jewels...and made a loud clucking sound like a sqwawking chicken. I laughed so much and it was so hard 'cos the pain was awful. But humour is vital to get through what we have to put up with.

In the last few months before my dad died of cancer, someone asked him how he could laugh. He said, "If I didn't laugh, I'd be crying." So true, and laughter does release endorphins.

I don't see why a nurse should yell at you for pushing the button so much. The pump is programmed to deliver only so much, no matter how much you push the button, so you were in no danger...

Jan