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 I just do not know what to do , and think . i to have uc i take 12 asacol a day plus every 6 weeks remicade. the  medicine works ,even though , i  feel a wek later that I am so tired.  I hope that I am not complaing but , i feel that Iam just so uneasy with my self  and my wife , I do not think that she knows what I go threw, I try to explain, she says take my pills, it  just effects me emotionaly to does anybody feel about the same?

 Reply posted for JenB2004.

One suggestion I can offer: The next time she tells you to take your pills, have her set up your pill boxes for the week.  I asked my husband to do it for me once because I was getting the trash together.  I made sure to show him how to exactly lay them in the boxes so they all fit.  He was surprised at how long it took and that I do that every week.  I hope the more you involve your wife the more she understands what you're going through.

Take care,
Jen

 Reply posted for stingray.

Hi.  I wonder if being together when diagnosed plays a factor.  I was diagnosed last July after I was sent to the ER for high white blood count and low hemoglobin, 102 temperature, nights sweats, bloating, severe back pain.  My husband and mom were with me when the doctor came in and said the CT Scan showed abscesses near the ileum which was indicative of Crohn's disease.  He asked if I had heard of it and I said, "Yes, there were only two things I learned in Chemistry class: that 6.02 X 10 to the 23 power is a mole, though I can't tell you now what any of that means. And that the chemistry teacher had Crohn's disease."  My husband and mom both started crying when the doctor said it's a chronic condition.  They both wished that it had happened to them and not me.  When we talked about that night later, my husband said he felt weak as a husband because he cried and I didn't.  I told him it's because I was naive and I don't think I really knew what all was lying ahead of me.  He was strong in my opinion: visiting me at the hospital every day, telling me to watch what I eat.  Going with me to my Remicade appointments when he can.  Really he's amazed that I had learned to cope with my symptoms for as long as I did (14 yrs) and he knew caught on during the eight years we've been together. My most used decoy was sitting on my heel pretending to tie my shoelace when really I was trying not to let a BM escape in the middle of a store . 

 I read in Mount Sinai Hospital Crohn's and Colitis Understanding and Managing IBD that "Intestinal inflammation itself, even without producing anemia or iron deficiency can also cause fatigue.  This probably occurs as a result of certain proteins, called cytokines, that are realeased from inflamed tissues and that can produce symptoms, such as fatigue, loss of appetite, and fever."  So the disease/inflammation alone can make people tired. 

Take care,
Jen

 Reply posted for stingray.

Hello. I first want you to know that you are not alone. I am the spouse of someone that was recently diaginosed with UC and the stress alone from it will drive anyone crazy. I have done my research (for my husband) because I don't think he would have. After seeing this website, you should know that there are so many people out there that feel your pain and I will tell you that you must think positive and try different medicines, treatments, etc. We went the herbal way, the prescribed meds had too many side effects and ALOE will help. You need to communicate to your wife/family and let them know what this disease is and what it does to you. The more support you have, the better off you will be.

I wish you all the best:)

 Reply posted for stingray.

One of the reasons I married my hubby is cuz of his huge heart & sensitivity.  However, sometimes he will avoid the negatives with my health.  I finally talked with him about it & he said sometimes he can't think the worst cuz he couldn't live without me & wouldn't be able to function without me.  I told him that sometimes I need to hear that.  It made me feel much better of knowing why he avoided some areas.  Since then, he has gone to every critical doc appt with me.  He during tests where they left him be right in the room.  He finally SAW what I had to go through with just testing.  He is much more supported & a little more open to the emotional aspects of my body being at war with itself.  I'm in a very deep depression right now & not functioning very well.  He has taken the initiative on everything from housework to cooking.  I also email him info.  We think he has ADHD so its hard for him to focus.  Now I present info at the proper time & it seems to be working.  Also, since he's been able to speak with docs, he definitely understands its just not my words of the illness & extraintestional problems.  Good Luck. 

 Reply posted for stingray.

Yes,

I know how you are feeling,  try having your wife go with you to your appointments and ask her to write down any questions she has, this way you can discuss them with your doctor,  and as many have said have her read through all the forum topics as it may help her to understand that it is not just a matter of taking your meds, the way you are feeling is part of this disease and that the meds wont change that.  Meds will help the disease or keep it under control but the disease it self takes a toll on your body and your mind,  Hopefully she will come around the more she learns, remember she is probably scared and isn't sure what to do or say.

Your friend Littlestar,  hand in there. 

 Reply posted for stingray.

I would definitely encourage your wife to go to the GI appt with you.  Or have her read up on the info out there (i.e. general medical information, as well as these forums) it might help her better understand what you and ppl like you go through on a daily basis.

My ex boyfriend didnt understand (I thought he of all ppl would cause he had a chronic disease as well, diabetes).  He just didnt get it.

My boyfriend now (of 2 yrs) just seems to get it.  Ive explained alot to him and whenever he first started dating, I told him about it and he really did his homework.  He now will be like "do you think you'll be okay eating that" or he gets really frustrated with me if I skip a dose of my meds and tells me to take them.  He is very understanding even through several bouts of incontinence I had at some points.  He's seen me on my best days and worst days.  Sometimes he doesnt always understand why I'm so tired alot, but I remind him it comes with the territory, and he understands.

Good Luck!!

 Reply posted for stingray.

I am exausted with or without Remicade.  It is the disease.  The last poster is right.  Have your wife read these posts.  This is a hard disease for others to comprehend.  Keep up the posts, we understand even if she does not.  Best of luck.

 Reply posted for stingray.

Welcome to the forum and I believe what you are experiencing is perfectly reasonable.  I'm only taking 6 asacols/day and I've gone through several rounds of Ruwasa enema.  I find that I'm tired most of the time - I'm not sure if that's the medicine or the disease.  It's hard for others to understand unless they have experienced it.  Maybe encourage your wife to read the postings on this forum and go with you to your next GI appointment?  Hang in there and best of luck.