coping with symptoms, control and embarrassment?

Hello. I want to tell someone what I have been hiding for a year now. If you have short attention span and have read this stuff for years, my entry won't be very exciting or interesting. I am dealing with embarrassment issues, lying to others, guilt and trying to adjust to the new reality of my life. Many here have struggled with much more, and probably my problems are minor compared to yours. I ask your forgiveness. But today, more than the illness/disease processes going on, I am sick of myself and my numerous health complaints. My question is at bottom.

I'm a newbie to CD, only DX a year ago, but I have struggled with it for years. My CD isn't horrible, but during a flare, well, I'm a mess with fatigue and pain. I also have rheumatoid arthrititis, lupus and narcolepsy. And to round things out I have celiac disease, lactose intolerance and sometimes I know I am over focused on all of the above. I'm not complaining here about the health problems per se, but I am embarrassed about all of this on some level and haven't quite adjusted mentally to the fact that I'm not exactly "healthy." It seems that something is always flaring, and daily there is something "wrong." I say this because when I admit either to my husband or doctor what is going on, I know I sound like a nut-job. The restrictions of sun, driving, eating, living are kind of a long list at this point. My husband is perfectly healthy and energetic and almost everyday I get up thinking I'm not going to mention my problems, but he always notices, so I admit one thing and then I hear myself...and the whole thing just makes me feel like a "weirdo."

I"m kind of struggling with the fact that even when symptoms are relatively stable, I still have problems with with CONTROL. My life revolves around not having an "accident." I had to retire. At least I could. Please don't think I'm complaining, but my entire life revolves around that whole bathroom issue and has for a year. On good days, I cannot leave the house until 1-2 pm, due to many brief episodes or thinking I'm going to have one. It is like constantly wondering if I'm "done" or there might be "more." Sometimes there is little warning. Usually things settle down and the rest of the day is OK. Bad days...well, I stay home. My doc seems to think if I am not in pain, and the lower rt quadrant area inflammation is down, I am doing well. I have just completed steroids for a flare that wasn't nearly as bad as last time. I still don't feel great, but better overall. The pain is essentially gone, although I still experience an uncomfortable awareness of that area at times. Surgery is out of the question right now. But another weird symptom appeared last night. I have this strong pain in my scapula area that kept me awake most of the night. And this morning, the pain feels worse. Again, who wants to hear themselves say, "Oh, yea, and another thing..." so I just lied to a friend and cancelled a dinner date so she wouldn't see me in pain.

OK, thanks for reading my silly thoughts. My question is this. Even when the disease is quieter, do some people still struggle with controlling bowel function? When I was diagnosed, I was pleased that we knew what was causing the symptoms and I have been extremely compliant, changed my diet completely, and have tried to have a good attitude, etc., but I wonder if what I described above is going to be my "new normal" and I just have to accept it. My husband may also have to accept it someday that everything is not just GREAT, like he seems to think it should be. I honestly think he thinks OK, we did steroids, you are taking medicine, and hey, everything is going to be like it used to be...

I take SSZ, Plaquenil, B12, Bentyl when things are stable. I have great docs who listen and seem to care.


Thank you for reading any or part of this.





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I gave your post a title so that more people will be likely to read and respond to it, and will try to write you a proper reply myself, when I've had some time to think. In the meantime, welcome!! - Ivy.

Post Edited By Moderator (ivy6) : 5/20/2010 3:56:40 PM (GMT-6)

I don't know whether this will console you or depress you even further, but I've had Crohn's for 11 years and identify with the difficulty in adjusting to being ill. To cut a long story short, things in the last year have changed. I am iller than I was. I know my insides are diseased, but I'm not a candidate for surgery. I'm on a course of Entocort which so far hasn't seemed to have much difference at all.

You'd think that after 11 years of Crohn's I would've come to terms with it by now. But I haven't. I still keep wondering how I got to this stage. I'm frustrated by my lack of energy and I don't feel healthy or well. I've gone from not thinking about Crohn's for months on end (in the early years) to thinking about it all the time, and I feel like a total hypochondriac.

Etc. etc. So much for me.

Firstly, if you're having issues with control then something is still going on. From what you describe, I'm wondering if you have inflammation in the rectum. Inflammation in that area typically leads to extreme urgency and tenesmus - a feeling of incomplete evacuation. Think you need to get that checked out, really.

Secondly, it's a sad fact of life that symptoms often don't go away completely, even in remission. And you don't sound in remisson, plus you've got other health problems to aggravate things. Don't rush to accept the current situation as your "new normal" just yet, though. Still plenty for you to try; looking at your list of meds you don't even seem to be on a mesalazine med, usually the first drug of choice in treating mild to moderate Crohn's. You should ask your doctors about that.

Thirdly, your husband should get used to the situation in time, but he's got to adjust to it just as you do...

Okay, gotta go. Film has started. Good luck :p

Thank you for replying to my "worst day" post. I shouldn't have written when I was so discouraged. I am blessed, I know it. And now I feel not so alone. I did talk to my doctor and am back on steroids. Thank you for caring enough to write! I wish you didn't understand. This seems like a good place when you feel kind of defeated--which seems to pass, like the other stuff.

I sincerely hope you know you really helped. THANKS!

Oh kitzu, I am so sorry, You really are not alone. I am facing 6 loads of laundry today. Sheets,sheets,3 gowns,1 robe,towels,washcloths. This is only from 8.30 last night til 5a.m this morning. Also must scrub the carpet,bathroom,and wash bathroom rugs. Yes, it is very embarassing. My darling husband is disgusted. Thank God, my 12 year old granddaughter is comming later,she will help me. Please do not let this disease control you. It can,as we all know. This  healingwell forum has saved my life. Everyone here wants to help. I have grown to love these people!!