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I am finally living on my own and semi-well, but I am struggling.  I had my colectomy two years ago, then was reconnected (j pouch) three months after that and had that surgery reversed because of some mistake, everyone has some drama story with these diseases.  Also, I am struggling to adapt to a schedule to keep up with my friends' lifestyle, while making it to work to keep living on my own.  Food and energy are important, while medication seems to factor in a lot too. 

Has anyone been able to stay awake a full day, without having to get up more than once during the night to go to the bathroom?  Or have solid stools?  I'm constantly dehydrated, I try to drink three to four bottles of water a day but I'm always trying to keep up.  When I'm dehydrated I vomit and I'm weak.  I am always battling hemorrhoids and have put on fifteen extra pounds since my j-pouch was connected. This has resulted in body image issues and depression in addition to the physical problems.  I wasn't sure how to live life on my own four years ago when I first moved out, before I got sick.   Now that I'm on my own again, even keeping a job is hard enough, I don't know that I'll be able to keep up with taking care of myself.

I have a doctor and a therapist but I don't know any real people who live the rest of their lives this way.

 Reply posted for hey2308.

I agree you are not alone.  We all go through this. 

Good luck to you and feel better 

 Reply posted for Lizzies Mom.

Thank you both! I have needed to hear these things for months on end now.  I have a new boyfriend, he wasn't around the whole time I was sick. It's hard to resist relying on him too much with getting better, and I don't want to start out our relationship that way, I swear if it were anyone else I wouldn't have even gotten into it at this point in my life.  But that's beside the point.  I have noticed that even though I am a more free-spirited girl--with this illness, I thrive under structure and a more regular schedule, but my body never wants to sleep.  I got used to the hospital waking you up every so often, and now I have to get up and go in the middle of the night--I usually resist that urge and thus end up even more tired!  When I'm tired enough to fall asleep I want to take that feeling and run with it, thus making for an irregular sleep pattern.  Which, let's be honest, kind of ruins any kind of structure the day could have had.

 Reply posted for hey2308.

You are soooo not alone in your struggles!!

Lets talk about your hemmorids. I completly understand!! This is such a problem for us because of the number of B.M.'S. The only suggestion I have is getting with your Dr. for some creame. I find using Tucks wipes to wipe with and using Vaseline right before I have my bowel movements help. It is messy having all this down there but I figure we just have to do what works.

Your energy is probably even lower because of the dehydration and malnutruion. This is such a problem and I am going through it right now. I will drink Ensure if I am not able to keep anything down or feel like not eating for lack having to go to the potty. I don't have much advice on this other than remember to try and drink water, Gatorade or something like that just to keep your pills down and your good organs working.

As far as being tired. You are so not alone!! There are days that I literally can not get out of bed from my joint pain and tiredness. You should be so proud of yourself to be living on your own and holding a job down with this disease!! You need to remember that this is an Autoimmune disease and it is going to make you feel the way you are feeling. It sounds like you have a very full plate and being sick does not help matters. Getting with a local support group is so helpful.

Good luck and keep your head up!! :)

Jamie

 Reply posted for hey2308.

I think it is most important for you to know that there are lots of people just like you who are living each and every day.......some good, some not so good, but, afterall, everybody is entitled to an off day.  It may be a  good time to try meeting others who can relate.   Have you reached out to see if there is a local support group?  I never thought much of the whole idea until I tried it w/my daughter (who has cd).  The experience really was beneficial.  Lizzie was able to meet other kids who have "special bellies", and I was able to speak w/their parents.   If there isn't a support group, you may want to ask your GI to start one.  

My daughter "grazes" all day.  Instead of eating three larger meals a day, she eats smaller meals, with "safe" snacks inbetween.  It helps keep her energy up and stomach settled.   As for water, I know it is important to keep hydrated, but try not to consume too much at once...that too may be overwhelming.  

Being on your own is often difficult for the ordinary person, however, being as "extraordinary" as you are, it does make it a bit more complicated, but it isn't impossible.  You can do it. Don't try so hard to keep every step in sync w/your friends.   Take advantage of some down-time so you can relax, maybe take a yoga class, ceramics, join a book club.   

Best wishes,

L:izzies Mom