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Crohn's Disease
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Posted 3/9/2012 5:45 PM (GMT 0)
I have been diagnosed with CD since '05 and have 3 kids ages 11,7,3 I recently have been experiencing extreme fatigue. I am currently on humaria weekly and methotrexate and continue to have an active flare. I take zoloft for depression and just still feel so helpless and down! Just yesterday I took my 3yr old to the playground and suddenly had to go to bathroom very bad, well if you have kids you know that trying to pry them to leave isn't easy! By the time I got her in the car and started to drive it was already to late I couldn't make it the 2minutes to my house. This is not the first time this has happened the urge comes so fast if I have to wait any amount of time it may be too late. I feel like a prisoner I would love to walk to the playground spend time outside exploring with my kids and not have to worry if I will have to go and not be able to make it! As far as my husband he most the time is great with me but gets on me alot about the house he feels I am lazy and he gets upset when it isn't clean. I explain to him that I'm tired and he tells me I am always tired and he feels like it is an excuse to be lazy and lay around. This adds to my stress and I worry on a daily basis if he is going to come home from work and be mad that the toys aren't picked up and laundry isn't caught up or the house just isn't clean to his standard. I am only 32 and he will be 40 this month he is constantly on my case about me falling apart and just makes me feel like crap. I don't work outside of the home so he feels that the house should be perfect and dinner on the table when he gets home, lately I just have no energy and find it hard to think of dinner for 4 other ppl when I myself don't want to eat or nothing sounds good! I am just so frustrated and wish I could make him understand I am not being lazy I don't choose to live like this he just doesn't get it! I know I can't be the only one who has been here before! Does it get easier? How do you make someone understand that can't possibly know how you feel unless they have experienced themselves!
Posted 3/9/2012 6:35 PM (GMT 0)
Hi love,

I am really sorry that you are going through this right now! I fortunately have not had this problem with my husband being insensitive about my illness.

has he tried going to GI appointments with you and ask questions from the doc? Maybe that would help him. Or maybe you should suggest he read up on Crohn's and just try to get an idea that you are tired, and no you are not making it up.

I can only imagine how frustrating that must be for you. Not only are you dealing with this crapty disease, you have to deal defending yourself as well.

I hope you start to feel better soon and you find a way to try to make him understand a little better.
Posted 3/9/2012 7:21 PM (GMT 0)
Thank You Manzyb! He has gone to GI appointments and is with me when I have colonoscopys! I will however suggest he read up on the dx next time he starts in on me about something! I am so happy for you that you have a spouse that understands and treats you well! I have a good husband but he is very insensitive when it comes to how my dx is affecting me physically:( I appreciate you responding and offering advice again ty!
Posted 3/9/2012 7:25 PM (GMT 0)
Sometimes people just can't understand what you mean when you say you're tired.  Has your husband ever had the flu, or any other illness where he felt like he was hit by a truck?  Explain to him that this is how you feel every day.  Perhaps that will help him understand better.

If you can afford it, get a housekeeper in once a week to help you.  And your older kids can certainly do some of the chores - the 3 year old gets a pass for now but should learn to put away his/her toys.

And....forgive me for suggesting this but I think it's important for you to be able to go to the park....what about adult diapers for those trips so you don't feel like it's a horrible embarrassment if you have an urgent need that you can't fill?

Your meds are clearly not giving you the relief you need and I hope you are working with your DR to resolve this.  Have you tried any dietary mods to explore other options?

Posted 3/9/2012 8:06 PM (GMT 0)
Maybe it would be helpful for you and your husband to see a marriage therapist who has some experience with chronic illness. Sometimes spouses will hear feedback better coming from an objective third party instead of you. If you decide to go that route, you can call your PCP and ask for a referral. Make sure to ask to speak to the therapist on the phone before you make an appointment, and ask it s/he is familiar with treating clients with chronic illnesses. I also agree with Kazbern that you need to talk to your GI and see if you need a different treatment plan, or at least some medication to control the D. I'm so sorry you are going through this. Your husband may be a great guy, but he may need an outside person to help him "get it!"
Posted 3/11/2012 8:27 PM (GMT 0)
I am sorry that you are going through this tough time. Crohns is such a terrible disease and ordeal. Is there a park near your that has restrooms? I do know what it is like to go out and have to go to the bathroom immediately. I have stayed at home so much because of D. Sometimes I try Imodium AD or Hydrocodone to slow it down. Hydrocodone if I have pain with D. The Hydro also seems to slow the D down. Maybe you can find even a gym/arcade/play area nearby. Movies are a good place for kids. I sit near the back. I love movies because I can sit down and relax. I also suffer from extreme fatigue and have been for 5 years. My husband does most of the housework but he gets tired of it. He doesn't cook though. He normally is gone during the week but comes home on weekends and cleans. I try to do the laundry during the week. He too gets frustrated with my disease. He want talk about it anymore unless I basically make him. What has helped me is a therapist. My husband hasn't gone yet but she thinks he should. I too think it would be a good idea for your husband to hear how crohns impacts your life through a third party and maybe online through these forums. Good Luck
Posted 3/12/2012 1:48 PM (GMT 0)
I'm so sorry you are going through this,while i agree with the others i can't help but feel your husband is bang out of order, your health is more important than housework so rest up plenty and the rest will fall into place in time,it's not easy being Mum to three small children at the best of times not to mention dealing/living with Crohns...i hope you get some respite soon,take care ,Slainte
Posted 3/12/2012 4:56 PM (GMT 0)
Hi and welcome to HW.

I'm a young mom too. So about going out with your kids, you should always be near a bathroom. Don't go to the parks that don't have bathrooms, especially if you don't have a responsible helper with you. Also, you can buy yourself some adult diapers, so if you do venture out where there are no bathrooms, you won't have an accident in your pants, at least. You can also keep toilet paper, clean underwear, and clean pants in your vehicle—just in case.

Your husband is probably having a hard time dealing with having a wife who is chronically ill. He probably knows deep down that you're not being lazy. Sounds like he should get some counselling, and you too, so you can learn how to deal with someone like that. You have a long way to go in marriage.

I find it easier to keep things tidy by getting my kids involved. Have a "clean-up time" at the end of the day, before daddy comes home. Have your 11-year old be in charge of that responsibility every day, and the youngest one can pick up a few toys and put them away properly, the middle one can pick up a few more.

Do you have a dishwasher? They're a must for ppl with chronic illness.
Maybe have a relative watch the kids once in a while so you can get some rest and spend some time with the hubby.

Hopefully, things will get easier as our kids get older and can help out more. Until then, we should seek all the help we can get.

Best wishes!
Posted 3/12/2012 10:12 PM (GMT 0)
Hi Love! Welcome to HW!

Reading your story reminds me of raising my kids and being sooooo tired. It's like a zombie kind of tired! A ZOMBIE driving a van and shouldn't kind of tired!!!
Raising three children is a hudge responsibility! Bless you!  

I was dx with Crohns in 05' and my kids were 17 and 14 at the time. I think I really had this and other Auto-Immunes much longer because I've always been tired...rundown...and sick for many years of my life.  I would try to put my kids first and NOT have any energy to do much for me...nothing! and things would circle back to sick right away. I found it helped to take a nap in the afternoon (i'd even lie to come home from work an hour early sometimes to just collaspe and sleep)...before the dinner hour comes and ev1 looks at you with hudge eyes and all you want to do is fall over! One thing I wanted to mention is....When I was first DX I had a great Gastro Dr. who pulled my husband aside...(bless his heart) and gave him the good the bad and the REALLY UGLY of things. This sorta scared my husband....then my sister who is an oncology nurse (who treats Crohns patients) pulled him aside and did the same. I didn't know either of them did this until later but it sounds like your husband needs this to happen a.s.a.p! Crohnic illness is just that crohnic...doesn't ever go away. We have NO choice! It can be a deal breaker for some marriages... unfortuntley! Having three children the ages you do is some TUFF work!!!...and many years of it to come. I agree with some of the messages above...see if you can find someone to help out in the house..often times we think we need to be Martha S. but we don't. If you go to a church maybe someone can just do dinner once a week for you... talk to a pastor and see if it can not be a hudge ordeal sorta annoymous. Be nice to yourself and take time to lock yourself in the bathroom for a long bath.  Your kids are just gonna have to be limited to somethings...like playgrounds w/mommy perhaps or sporting events.Do you know a nanny or a young adult who would be a good care taker for a few hours... I rarely made sporting events for my kids after awhile. And.... wearing adult diapers is one thing....(and I've had to) but actually doing it ...is another. Not to mention hanging out in them once "it" happens!...Just to let you know my girls are both done with college now and have such a compassion for people with handicaps...and now that time has gone by...they understand more of what was going on. Your children in the long run are gonna be more grounded! See if you can find someone to pull your husband aside and give him a talkin' to....scare him a bit... it might really help!

Posted 3/13/2012 10:05 PM (GMT 0)
Thank you sm Flowery! I so wish I had someone close to lean on family would be great!!! My hubby is a soldier and we are away from home and family :( Venting on here has really helped alot!!! Talking to others with the same problems is so comforting, to know I am not all alone and can get support from others who have been there done that! My hubby is a good man and I think you are right he knows it isn't my fault I think work and stress just gets to him too! Thank You everyone I really appreciate the support and feedback :)
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