I miss being normal.

bananagirl, your dad needs to get a clue.

Sorry you're friends are annoying you, but they are trying to help. As hard as it is, just smile sweetly and say thank you. Don't engage them in lengthy conversations unless you plan to get really involved in discussing your problems!

I haven't ever lost a ton of weight while in a flare, but during my last one I'd probably lost about 8 lb and everyone complimented me on my nice figure. I just roll my eyes (privately) and move on. It's a little freaky to be complimented when you feel so awful.

Banana,

Oh, lord. Dad is clueless; you cannot bring on IBD yourself. Drag some basic education off the net and have him read and absorb. Your friends mean well, but you just need to say My body is now different from yours, but thanks for your input. I was severely injured by 2 surgeons (doing what was later found out to be an unneeded surgery), I almost died and had to persevere for 13 months to get help. No doc likes damaged goods. Some tried their best, The one who saved me the best that could be done had to take down severe scar tissue off small intestine and do a permanent ileostomy. I lost my professional career but have traveled a lot since having had such a near brush with death. My friends all get it as we are all in our 50's and 60's but I still get the diet hints that I could not possibly tolerate. But, I just say oh, thanks I'll keep that in mind. My guts were perfectly healthy and needlessly ruined. You have a disease but are so young. You have all my blessings. Best wishes. Rosemary

thanks everyone for talking to me. i guess sometimes i just feel like there's no way out of this disease- that i'm in it for good- even though some people are in remission for a long time.

my dad was diagnosed with U.C. at 23, went on sulfa enemas and prednisone and hasn't had a flare since (he's 45 now). he doesn't understand why my body hasn't worked like his. he just says that i have a mental disorder because i don't eat meat and he calls me anorexic all the time. it really hurts my feelings because i am trying really hard to gain weight. i've gained about 6 lbs since i got out of the hospital last month but he completely looks past that. it's just easier not talking to him but at the same time it makes me sad that we don't have a good relationship.

Hi Joanna,

I had a really bad experience emotionally with my parents like, it seems, many others here on the forum. I started writing and it got kind of long, so thanks to anyone who reads it:

I went through a horrible time with my parents when I had to move in with them due to financial strain when i could no longer work or go to school and receive financial aid money. I was 27 then and had just recently finally broken the bonds that were so abusive in my family, so I had to go through it all again. Being on presnisone, DHEA, azathioprine, and having lost a ton of weight and feeling like I was starving and floating out of my body all the time - oh, and going through what a friend called the equivalent of a heroin withdrawal when I tried to take Low Dose Naltrexone for 10 days - I felt crazy, I wanted to kill myself all the time, I lost my memory, I stopped trusting anyone, and I forgot who I was. I really just stopped identifying with who I had been before. I felt that I was supposed to have died but didn't. Trying to get through a day with all the negative thoughts that the prednisone made me have was hard, and my memory was like a goldfish.

My dad would yell at me for forgetting to clean things up, my mom yelled at me for being so inconvenient to her (she had to shop for groceries for me because I could not walk for 2 months), my dad accused me of being a drain on them financially and eating too much food (I was trying to gain weight back after going down to 100 lbs). I was so excited when I could eat butter because I was craving fats so bad, and I was actually gaining weight back. He said butter was expensive and I should see if I could eat less. When I got better enough to leave the house and move out of the state, he yelled at me for being a financial drain for so long and expecting support leaving (which I didn't - my plan was to sell all my stuff), and my mom yelled at me for "springing it on them" when I had told them repeatedly that the lack of sun in Seattle was making my skin thirsty and made me feel like I would never escape Seattle (my health prevented me from leaving since I was 21).

My mom loves being what she thinks of as a "mom" and babying everyone but keeping them sick. She is doing this to the household dog now. She also has to see herself as a good person. So did my dad, who seems to have learned a bit since I left. At first he told me he thought I wasn't working hard enough (putting in enough hours at work) and that he didn't really want to hear that I was sick so could I not mention it? My mom denied that I ever mentioned it, but later said that I was saying I was sick, but not acting sick so I was being dishonest. I guess I wasn't limping around enough yet. So I nearly died of blood loss after six months of isolation in my appartment before I had any financial support to buy food, etc. My friends had stopped hanging out with me because I wasn't "fun" anymore - couldnt' go out drinking. My boyfriend left after a while and told me I didnt' have an athletic body anymore and he was looking at other women. It was horrible.

I am sorry to be posting so much. I guess it feels like it just happened still. My point was that, as mentioned above, emotional scarring can happen. People can leave an impact. If you feel like you have a sound mind, don't let others get to you. I had to ignore the fact that my parents were my parents. I actually dissociated from them completely. One day I just flipped and no longer believed I was the same person, and that they were my real parents. I just didn't have to care anymore. It's taken a while to get my memories back, my senes of self back, and to get through the sense of panic and just relax, and be able to trust people again. I felt like I was fighting alone for survival amid a world that ignored me and just was incapable of seeing that one of it's fat healthy members was not fat and healthy. The pain that comes from this, for me, has been really hard to deal with. I could n't do therapy when I was living with my parents because my dissociation and denial was what was working for me then. Now, I am about to start some free counseling that a member of my community reached out to me with, and I feel it's going to be really good. Everyone deserves to be loved unconditionally, and it's hard when people blame you for being sick, or want to abuse the situation for their own purposes. But I have found that I am strong enough to get through this...I am strong enough to be that happy healthy person again. I am doing things every day that make me happier, and yes, some days I slip back, but the point is to keep pushing forward. And DEFINITELY put space between you and the people who hurt you for as long as you need. I think taht with the right information and medicine, be it in whatever form works for you, each of us can really heal from the different conditions we have been diagnosed with and live happy lives. I have a boyfriend now who loves me more than I imagined anyone could, and who has stuck with me through the mental illness that accompanied my physical illness, and helped do the research to help get me better, help financially, cook my food with me, or for me on days that it hurt to stand or walk, and never regretted it. Or held it against me. So there are people out there who care. :)

Again, sorry for the long reply with all my own stuff. I am sure it was more for me than for you for me to respond to your post. Thanks for starting this thread so that there is space to open up and let go of the tendency I often have to keep all this away from sharing.

Kat

No offense but your father is clueless. Don't ever feel you brought this upon yourself! Lordy no!

As for the skinny remark - I get that all the time. I hate hate hate it! It's not like I want to be losing weight or like being so thin. They tell me to eat...well I do eat, lots but it doesn't help that food causes me to run to the toilet with explosive D 10x's + a day either! People don't understand this condition and probably never will unless they get it themselves, so just try your best to either ignore them or educate them - grin and bear kind of thing too.

I got the same reaction from my sister. She had a roommate from college who's husband had UC. Apparently he lost his colon because he likes his corn chips and rich foods! How ignorant! It's hard when family just don't get it! Then when I mention that she now has a 30% chance of getting this die to genetics I get blamed for upsetting her! I was saying it out of concern so she could take the time and educate herself instead of being blindsided from this like I was! Some people are just impossible to communicate with and it only adds to our stress.

I miss being normal too...but now I try to look at normal in small moments and not long term. It helps..we all have our ups and downs.

I'm starting to learn not to say anything to anybody and if I get the comments on my weight then...oh well..let it go in one ear and out the other. We live in a different world now and it's hard trying to figure out how to bridge the differences. I got to the point that I let go of relations with my sister and mother. I'm 42 living on my own so it made it easy. Doing better without them in my life. We never had a healthy relationship anyway.

Its so hard when people do no understand what you are going through and say so many mean and thoughtless things. My husband, family and friends are very understanding and supportive but even the people closest can say things that hurt. No matter how much someone understands( and in your case your dad going through some of it himself) they never truly know how much we deal with. Physically we are run into the ground, emotionally drained, and mentally braindead...

My friends and family listen to what I tell them that I am going through, but much of the time its easier not to tell them. My best friend call the other night to vent about things and I was in the bathroom on my throne. I did my best to keep the conversation going in between me having to go "OMG" and "OOOHHHHH" She talked my through the pain and I talked her through what she was stressed over...Thats what I call true friends on both our parts lol. She knows what I deal with but that was one of the first times I think that she really realised how much pain that I am in.

Most people dont actually see us in the bathroom and whats going on behind that closed door. They see us so tired that all we want to do is lay around the house that has not really been cleaned in god knows how long in our PJ's. Some see us trying to eat, but not what eating can cause. They can see the pain on our faces sometimes, but no one knows what that actually feels like. Its frustrating when people that really do not know gives advice. I have just found its easier to give a little education and just say "Everyone is different. Somethings may work and others may not for me."

I hope that things get better for you and maybe your dad will come around and see that it was not something that you did to cause your colitis, but just old fashioned mother nature....

 

apirateskiss, it makes me sad how unsupportive your best friend is- especially since her mother has IBD, too. i guess when people see us, we usually aren't in the bathroom and we can look somewhat normal. my one friend wanted to take me to a club for my birthday but didn't want to drive. i told him a trolley was out of the question because there's no bathroom and he says "omg. can't u hold it for at least 30 minutes?" that really made me annoyed because people just don't get what we go through.

ellie, when i was going to the bathroom over 20x a day, most of my convos were on the toilet, too! most of the time, i was in way too much pain to answer back, but i acted like i was listening at least.

peaceandharmony, i have also noticed that not talking to my dad is better for me- even if he is related. when i was in the hospital, all he said to me was how effed up in the head i was for putting myself in this position. i didn't talk to him for about a month after that and that month was so much less stressful, if that's possible haha it's hard because my sister still wants to talk to him and she says that i'm selfish for not answering his calls and wanting to visit.

red, yeah the whole skinny thing annoys me so much! if i could be overweight and healthy, i'd take that any day over being a sick stick (haha) !!! i look at my body so differently now and i've learned just how strong i can be. i'm healing and it doesn't matter what i look like- just how i feel.