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07-07-2013, 02:46 AM   #1
Twixxie
 
Join Date: Jul 2013
Location: Manchester, United Kingdom

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Partners with Crohn's disease

I hope it's ok for me to post here. I am wife to a very lovely man who has Crohn's. He was diagnosed in September 2009 after a bad flare up. He spent 5 days in hospital and a colonoscopy confirmed Crohn's. He was put on steroids (prednisone?) which didn't work and eventually he changed to immunosuppressants (azertheprine) which have kept him in remission. Late 2011 my husband came off them to TTC our third baby, he was worried that noone could say for definite they were safe although they probably were. We concieved after six months but the damage was done and a part of DHs bowel had to be surgically removed. He had a right hemi-collectamy last August which was a success and he now has 45 cm less bowel and very loose frequent stools. I felt so helpless watching him recover from surgery. They had planned to do key hole but found his bowel was fused to his ureta (tube to the kidneys) and so needed to do open surgery. He has a large vertical scar.

He's doing great again now and we have three healthy children all under 5. My baby is 5 months now, we also have a 2.5 year old and a 4 year old. They're great kids but obviously hard work. Dh works full time and I am on maternity leave, I usually work part time. I am just struggling with having patience with dh and his toilet needs. He goes to the loo every few hours and can be on there for up to 25 minutes. I know sometimes he stays in there long after he's finished so he can play a game on his phone etc and I get so frustrated that meanwhile I am managing the kids needs myself and I never seem to get time for me. I breastfeed our youngest so I can't leave her yet. Sometimes when he's on the loo I feel so angry at him. I know it's not his fault and I know I'm being unreasonable. Please can you help me to be more understanding and helpful. I feel so bad that I get annoyed at his condition which I know is very real and horrible.
07-07-2013, 03:38 AM   #2
Cross-stitch gal
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Join Date: Dec 2011
Location: Vancouver, Washington

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Hi. I'm sorry to hear of your frustrations. I can imagine how hard it is to be a spouse of someone with these challenges. Have you thought of joining our Spouses w/ Crohn's Support Group? There are many there just like you who you could talk to directly. A couple on there are: Jmrogers4 and Karen.

I know that many of us don't thank our spouses and family members as much as we should. But, we do know that we wouldn't know what to do without you. I too am here if you'd like to talk. Take care.

www.crohnsforum.com/showthread.php?t=48675
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Diagnosed:
Ulcerative Colitis/IBD 1996, Iritis 2001, Ulcerative Proctitis 2013, Indeterminate Colitis 2016, Remission 2017, Hand Eczema

Current Meds:
Pentasa 1000mg 2xday or Mesalamine DR 1.2gm 2xday, Canasa Suppositories (when needed) 1000mg 1xday, Tylenol 3 with codeine 300-30mg (when needed)

Non-Meds:
600+D Calcium 2xday, Multivitamin, 65mg Iron 1xday, Fish Oil 1000mg, Vitamin D3 5,000 I.U., Eye Drops 2xday


UP Support Group http://www.crohnsforum.com/showthread.php?t=68350
07-07-2013, 11:39 AM   #3
Jmrogers4
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Welcome Twixxie and Congratulations on the new baby! I'm sorry you are feeling so frustrated. I would imagine it is a stressful time for both of you. I have 2 boys and they are 21 months apart and I can remember when they were both young to feeling very tired and stressed. My hubby was also feeling pretty bad not long after my younger son was born and ended up in the hospital for a few days
I know it is hard but can you pump and get away for even just a couple of hours even long enough to see a movie or go to the store by yourself. I would just wonder the aisles.
It does get better as the kids sleep longer and get a little more independent you may get like me and on occasion long for those days when they were small.
I have to admit I would spend extra time in the bathroom when the boys were little and leave their car to my hubby, take 5-10 minutes where ever and when ever you can.
I think many moms whether or not their hubby has Crohn's get frustrated with their hubby's because it seems so much easier for them to take that 5-10 minutes away whereas we feel guilty for doing it.
We are here to support you and you can vent anytime here.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
07-08-2013, 12:18 PM   #4
copeland
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Location: Asheville, North Carolina

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I am just struggling with having patience with dh and his toilet needs. He goes to the loo every few hours and can be on there for up to 25 minutes. I know sometimes he stays in there long after he's finished so he can play a game on his phone etc and I get so frustrated that meanwhile I am managing the kids needs myself and I never seem to get time for me. I breastfeed our youngest so I can't leave her yet. Sometimes when he's on the loo I feel so angry at him.
Often with Crohn's, there's no such thing as being "finished" when you're on the toilet. I am in and out of the bathroom all day long, but usually when I get up from the toilet (after sitting there for 20 minutes) I still have the feeling of needing to go to the bathroom. Even if I haven't eaten in 48 hours and my stomach is completely empty, I still feel like I need to go. This can be very difficult for people without Crohn's to understand.

I read or use my phone while I'm in there, but I'm unmarried (and apparently likely to remain so) so it doesn't cause any relational problems, at least not yet. I'm not saying this definitely applies to your husband, but it certainly is possible that he stays in there for good reasons, and just gets bored so he uses his phone.

And good for you for trying to understand!
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27 years old, Crohn's since I was 16 or 17.
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