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Hi, I'm 37 years old and have been dealing with UC since I was 27.  My systemic symptoms have progressively gotten worse over the course of time. I am married with 2 young boys and I work as an RN.   I cannot believe the amount of fatigue this flare. There have been days I can't get out of bed. Joint pain, focusing issues, and of course the dreaded bowel symptoms.  I'm having a very difficult time coping with this illness, even 10 years in... the thing is, I want to go and do what other young mothers /friends are doing, but my body won't allow me to sometimes.  Anyone have some helpful hints on how to come to acceptance? How have you modified your lifestyle to cope with your symptoms?   thanks for your help

 Reply posted for lazydaizy.

Thank you all for your kind and encouraging responses! :)

Emily, I was diagnosed with my UC just after the birth of my first child.  While pregnant with my second, I was taking nothing but Asacol. My OB would not allow the Entocort.  I did have bleeding throughout my pregnancy and I was monitored very closely.  I was fortunate to have my hemoglobin hold throughout.  After I had the baby, I did have a hemorroid that gave me some trouble, and it still acts up every now and then.  the key is to immediately soak in a warm bath nightly and get some proctosol from your doctor to apply twice/day. Good luck!

 Reply posted for mbreslin.

I KNOW! I can't believe it either, How can I be so tired? I don't know what to do. Nobody gets how hard it is either.. I just googled what do families do when mom is sick? It was discouraging.  Mostly it was for cancer patients. but, I realized we need a hospice for us. With federal paid sick leave, and a nanny that comes in to pack lunches and make dinner, and fold laundry. Just because we will survive doesn't mean we are any less pathetic.

I saw something that made me feel better it said" give yourself a break, let the rules on TV/or movies slide for awhile. Just let them know you love them!

 Reply posted for mbreslin.

You have 2 young kids?  I am 25 and have had Crohn's since I was 16.  I had an intestinal resection surgery at 17.  My husband and I have tried to get pregnant for almost 2 years, with no luck.  How has your condition affected your ability to have kids, if at all?!  I am worried a/b long term hemrroids from pregnancy and other such symptoms that could stick with me for years and years after carrying a child.  Can you give me ANY insight into dealing w/ this awful disease and also trying to carry/birth a child?

Thanks,

Emily

 Reply posted for mbreslin.

I agree completely with StElmo's. Give yourself credit where credit's due. Treat yourself too. Long hot bubble baths, a good book & a hot water bottle, watching your favoutite films on dvd. You're stronger than you know.

 Reply posted for mbreslin.

I dont know if this will help, but the best advice I could give you is to not put too much pressure on yourself.  When you need rest, rest.  One of the biggest mistakes I made when I was first diagnosed was too think too far ahead and worry about situations.  Now I try to take things one day at a time --- sometimes one hour at a time.  When I have energy, I try to make plans with friends (it usually involves eating which used to create all kinds of stress).  I am also doubly grateful for the "good" days.  I admire you ---- dealing with a family and a high-pressured job as a nurse.  I dont have children and my job is a piece of cake compared to what others have to deal with (especially with the added pressure of  IBD).  Give yourself a lot of credit for maintaining a home and career!  I cant say Ive come to acceptance yet.  But I have come up with some coping skills.  Im always prepared for an accident, which takes away the fear of the unexpected.  When I feel tired, I rest.  Things wait until Im having a better day.  When I feel down, I do something nice for myself.  Today I was feeling depressed, so I bought myself a book I had been waiting to buy.  I didnt think I should spend the money (a hardcover, no less!), but I felt I deserved it after a long week of diarrhea and nausea.  Try to be kind to yourself, especially on an emotional level.  I bet you accomplish more with UC than some healthy people!