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Crohn's Disease
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Posted 11/30/2007 4:40 AM (GMT 0)
Sometimes I just get so scared and annoyed and I just feel like nobody understands. It's like I have this disease, and right now, I feel okay. But I worry. I worry about 5 years from now what it's going to be like. I've had more surgeries in the past year than I ever wanted to have. And I'm sure there will be more. I'm scared of what the future holds and none of my family/friends get that. They think that since I'm okay right now that I should focus on that. Maybe I should but I can't help but be scared of what my future holds.

On the other hand I'm so annoyed at others perception of this disease. I'm sure you all have experienced this too. I've actually had someone tell me that all of this is in my head. I mean..hello?!? My boyfriend lives 2 hours away and all of his friends and family think bad of me because I can't come see him very much and that he has to come up here. They think he is getting run over and that I'm a bad person. Ofcourse this makes it a million times more uncomfortable for me when I do get the chance to visit him. The thing is that while I'm fine at home, when I travel 2 hours away it's like I'm out of my comfort zone and I get really nervous which makes the Crohns so much worse. And then tonight at dinner, we were discussing Christmas presents and such and we were talking about how last year I recieved a laptop as a Christmas present from my parents. It was partly a graduation present too.(Highschool) And my sister comes off with the remark, "Yeah, she graduated to do nothing." I didn't even know what to say. I was accepted and enrolled and in college. I worked full time and was a full time student for 2 semesters before my symptons started to pop up. When that happened and I couldn't keep my grades where I wanted, I took a break from school until someone could figure out what was wrong. I was still working 40+ hours a week at our local hospital. Later I developed a fistula and abscess and because of the pain from that procedure I was forced to leave my job. Since then my symptoms kept getting worse and worse until finally in September of this year they diagnosed me. So I would hardly say that I have graduated to do NOTHING. People don't get it. I don't like to complain every time I feel a pain, but just because I don't vocalize pain doesn't mean it isn't there. And as well as know this disease is NOT in our heads. I just get so annoyed at how people react. It's like I'm doing the best I can to live a somewhat normal life. I'm doing better now and I'm enrolled for school again next semester. I just wish people would understand that the past couple of years haven't been fun for me and I definitely didn't choose all of this. I would never wish this disease on anybody but sometimes I wish the doubters could live with one day of a flare. Maybe then they would see.

Sorry about all this. I have just been upset and needed to rant.

Posted 11/30/2007 5:31 AM (GMT 0)
I'm sorry Malibu. I wish there was something "positiveful" I could say that would make things better but I don't. Just know that we've been there too and that is exactly what this board is for. This is the only place I have found where people DO understand and don't say stupida-- comments. Especially the ones that say the pain, fatigue, etc we feel everyday isn't really there and that if we relaxed or was more positive it would magically be cured.

That's great that you are enrolled again for next semester. Keep takin care of business gurl. That's all that you can do. =0)

Hugs
Posted 11/30/2007 5:51 AM (GMT 0)

Malibu, definitely feel free to vent away here, that's what the forum is for.  Because I think we all know what it's like to acutely feel alienated from the most important people in our lives because of the burden of a chronic illness.  It seems so wrong that the ones closest to us sometimes act the most inhumane.  I remember when I was a little younger than you, I was dating a boy who had one of the most severe cases of Crohn's I ever remember; he was constantly in the hospital for surgery, could not eat solid foods for close to two years...it was awful.  His family suffered, all of us suffered with him.  It's an anxiety-provoking time not only for the patient, but for the loved ones.  And sometimes, because of that anxiety, they end up saying things that are hurtful, or they shrink away; that produces hurt and hostility in us, the patients.  It's a vicious cycle.

I think that having a chronic disease, when it's bad, really turns people around.  It can be so burdensome at times, and yet at other times I wonder, what can having this illness teach me?  It teaches me a lot, every day.  And sometimes the best lessons are learned in very painful ways. 

Hang in there.  We're here to listen!

Posted 11/30/2007 11:45 AM (GMT 0)
Hi I know when sometimes we need support from family and friends it seems far away. Perhaps that is the way people deal with this disease and your sister may be just making a comment of which she is not aware that it is hurting you. Maybe she does feel your pain .I know it is hard worrying about the future but I have enough worries for now so I try to take it a little at a time one day at a time if I have to. Hoping that your meds will be you into a long remission where you feel good. Hang in there. lol gail
Posted 11/30/2007 12:21 PM (GMT 0)
I know its probably hard to understand how people can be so clueless but part of the problem I think is that it is a form of denial. They may not understand or they may be just plain scared. The reason I say this is because I remember when my mother in law was dying from cancer 30 years ago. I was much younger. I remember how uncomfortable it made us when she talked about death. We didn't say such hurtful things as you are describing but we didn't let her talk about death. We kept insisting she would get well and when it was obvious she wasn't we didn't say anything. I remember the story from the 1970's "Sunshine" Some of the older members on this forum might remember it. It was a movie also. The main character was dying of cancer and she made the remark "dying is such a hassle". I'm digressing I just wanted to say that usually people don't really mean what it sounds like (especially your sister) They either don't get it or don't want to get it because its too emotionally painful. This doesn't excuse it but I think it makes it a little easier to understand.
Posted 11/30/2007 1:22 PM (GMT 0)
I so agree with rootsmith. Communication is the hardest thing to be clever at. Yes, I am sure there are people that don't get a clue, and that don't care to know what is going on. But the closest family does. Your sister do care a lot. This IS a difficult disease to understand. It' s also difficult to talk about it. Some people can't stay it when we talk about the intestines, the poops and the diarrheas. For us it has been a natural thing to talk about. Don't lose focus, you need to have a positive attitude and learn to choose to whom you will share this information. The closest family needs to know. Much people wants to know just a little part of the story, and if they want to know more, they will come back and ask. Tell them they are welcome to do so, and that you just feel that it's ok for you to tell a short version of it at first. Don't vent or stay negative when you tell them about your disease.
What can you expect in return?
If you KNOW that some are talking negative about you and your disease, confront them in a calm and friendly way and ask them if they need more information about you or your disease. Don't confront anybody with a negative attitude. The only one who will lose then - is you. People don't understand. Not all. Some are slow learners. You need to be patient with those.
Don't turn their negative reaction against your self. They have a problem - they are the ones that is reacting negative to you. You don't have a problem as far as you don't want to make it yours.

As of what to do to get a better future. Please, start to think that you are the only one that are able to take care of your own health. There are other ways to do it than only eating conventional medicines.
I changed my diet, I cut sugar, wheat, milk and learned how to cook. There are good diets for inflammated intestines out there: The Makers Diet. The SCD diet. You need some 5 -7 months to get better and better, but if you make up your mind to do this, you'll make it. You have to use your energy in this area, not in being sad and depressed cause ppl. don't support you as much as you want.

I changed my diet and started to use low dose naltrexone, a medication that calmed down my Crohns and got me in remission. Some ppl need half a year before the medicine works, some with Crohns needs shorter time. It's a medication with small side effects. Those lasts for some weeks. Then it's over and your immune system is at a normal level.-
Ppl. like us have often too low endorphine levels. Low dose naltrexone regulates this and helps the immune system to work 100 %.

Why not give yourself a chanse? Aren't you worth it?
With all the best from Ingrid
Posted 11/30/2007 4:14 PM (GMT 0)
Hi- I think it is really hard to understand other people's diseases when we are not in their bodies. I am guilty of it as well. I have a cousin with mental health problems that has been on disability for a very very long time. With all due respect to others with mental illness, this is something with him, that I could not grasp. I didn't understand how his anxiety and panic and depression could keep him from working. I thought, "I dont care how much you think your life sucks, you get up and go to work like everyone else, and then go home and feel sorry for yourself if you need to." I understood that he kept getting fired for being a "bad" employee but I still couldn't get it. Then he got a job working the night shift at a hotel. He called my uncle from a closet, freaking out that people were coming to kill him. It was at this point I got it. It clicked. When he was at my house or at family functions, he appeared healthy enough to work. Just like there are days I feel well enough to go out and hang with friends; that does not mean I am lying on the days I say I am too sick to go out and have to stay home. It was during that situation that I realized how dangerous his illness was. If he really thought someone was trying to kill him, god forbid someone enter that closet looking for a supply. He might have tried to kill them out of "self defense." I still have days where I see him laying on the couch watching soap operas and smoking cigarettes and I get angry and think "uh, just get a job." But then, I remember that scared man cowering in a closet, and I get it. When your sister sees you running to the bathroom or curled up in pain I am sure she gets it. But when she sees you on your healthy days she probably has a hard time understanding, just as I did with my cousin.
Posted 11/30/2007 9:14 PM (GMT 0)
My solution to that is old & trite, but please indulge me..
Just live for the present. The future brings what it will, & my past I cannot change. I can live TODAY though.. Enjoy the good times & the quiet times, for even if you didn't have this DD, they will not always be there. As the french say, C'est le vie..

Matthew
Posted 12/1/2007 2:51 PM (GMT 0)
Long before I was diagnosed with Crohn's, I had a friend with very severe Crohn's who has been hospitalized for months on end. She had complications from multiple surgeries and almost died. I am so ashamed to admit it, but I didn't visit her enough, or listen to her near enough. I found her endless complaining tiring and I avoided her. So then I got diagnosed, and she was my absolute biggest supporter! I can't even describe how guilty I feel about all of this. I have apologized to her a million times, and she shrugs and says that it is hard to understand this illness unless you have been there. To me, that's not good enough...I feel like I was a lousy friend. If I could take back my behavior I would, but all I can do is move forward. Hopefully, I have learned to be a kinder person as a result of this rotten disease. Maybe your sister will have an epiphany and come around, but until then, surround yourself with supportive people and take care of yourself!
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