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Need advice re Hubby

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Crohn's Disease
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Posted 2/26/2011 11:47 PM (GMT 0)
Hey All,

It is Kitt and I need some wisdom for the great members here.

Hubby with 34 year history of Crohn's - small bowel.  Has had 4 resections , a fistula and an abcess.  Last surgery in February last year.

Just started on Methotrexate IM weekly.  I have serious concerns re his weight.  He weighed 180 and is 6 feel tall for years but lost weight over the years.   This past year he has lost so much weight he is down to 141 lbs.  He eats but has short bowel syndrome so nothing sticks with him.

I am seriously concerned as he is slowly dwindling away.  What should I choose to do for him next ?   WE have a GI physician, an Internal Med physician,  a PCP and a Rheumotologist.  Where should we turn for help. Your personal thoughts will be appreciated.

Kindly,

Kitt

 

Posted 2/27/2011 12:15 AM (GMT 0)
Hi Kitt

I am sorry to hear your hubby is so unwell. Wish I could suggest something really practical to help but as we are all so different the only thing I can suggest is going to a dietician for ideas on how to put on weight with short bowel syndrome (if you haven't already seen one of course).

Good luck
Lesley
Posted 2/27/2011 12:26 AM (GMT 0)
You and your husband really have my sympathy. I'm 6'3" and at my worst I dropped down to 139. I know all too well the depressed feeling that comes from
being so thin. I felt deeply ashamed and didn't even want to leave my house because I was so self conscious about it and knew people would talk about it behind my back (people being people just love to talk about others' weight!).

I'm very fortunate in that a combination of meds and diet got me back on track so that I'm now at 177. It's taken 3 years to get to this level. I'm still not satisfied because I know one bad flare can undo all of it.

Could TPN be a possibility? I'm sorry I don't have any real advice other than that because my CD is in remission and I've never lost any of my bowel, therefore I don't have the absorption issues of your husband. I just wanted to say that I know the difficulty of weight loss all too well and offer my sympathy. I sincerely hope your team of doctors can put a workable plan together.
Posted 2/27/2011 3:13 AM (GMT 0)
Hi Kitt...boy do I know how it feels to walk in your shoes!  DH has had Crohn's for 40+ years.  His last surgery was in 2004 when he had a resection and seemed to be getting along good when he threw an pulmonary embolism and spent a week in ICU.  I was lucky to bring him home!  After the surgery, he developed two abdominal fistulas which require ostomy supplies.  His weight had already dropped from a normal 165 to around 145 and since the surgery, it has dropped to 130.  He just doesn't have enough bowel to absorb much nutrition.  His GI has talked to him about TPN, but has also explained if there is anyway to get by without it, to not go that route.  DH is 69 and TPN would require home health care, regular blood work, long hours connected to tubes and pumps and comes with a host of additional possible health issues.  Consequently, we have chosen to not go that route.  But discussing TPN with your doctor might be the best thing for your DH.  My husband is currently taking Humira injections.  He has no muscle mass left and very little energy to do much of anything.  I know how you feel about your DH "dwindling" away.  I feel the same, DH is nothing but skin stretched over bones.  It is so sad.  darn disease! 

I just wanted you to know that you are not alone and that there are others who walk this path with you.

Posted 2/27/2011 3:30 PM (GMT 0)
Thank you everyone.  Your kind words make me feel that I am not alone in the worries re my husband.

He has lost most of his muscle mass and this is a man that has always been a hard worker as well as he is a Harley man.  He has trouble holding up his motorcycle now.  Breaks my heart.

I have thought of the TPN but he has been so down in the dumps re the huge medical bills coming in that he even said the other day " Never take me to the hospital again,  just leave me be here at home.  sad

I could give him his TPN as I am trained ( RN) .  He won't even discuss this idea right now.  TPN cycled to infuse over 10-12 hours during the overnight period, with an additional 30-60 minutes for tapering off - the idea scares him to death.  I do keep it in the back of my mind as an option.

My hubby is 63, soon to be 64. 

Again I cannot express my sincere thank you to each of you for the support and words of encouragement.  It makes me cry to know you are out there and how much people with Crohn's suffer.

I wish each of you peace,


Kitt  

Posted 2/27/2011 4:41 PM (GMT 0)
Hey Stkitt,

Sorry hubby is having such a hard time. After my recent kidney I have had a really hard time putting the weight back on. What about supplementing with Ensure or Boosst a few times a day? Wish I had more advice, but I am actually in the same boat as him as the moment with my weight.

Hugs
Gail*Nanners*
Posted 2/27/2011 8:00 PM (GMT 0)
Hi, I have short bowel syndrome as well from numerous surgeries and also ileostomy so I have major absorbtion issues. I have just started Humira and restarted azathioprine as have a flare up. To put on weight my GI always gets me on steroids to initially bulk on some weight. Once back up to 12 stone to stay there have to eat 4000 calories a day. So my diet is high fat, hgh calorie, high sugar, high protein and low fibre. Basically anything that doesn't fill me up but has loads of calories in it. At the moment to try and reduce amount of stoma output I am on high protein/low residue diet which it holding my weight steady and also use whey protein powder from health food shops to drink inbetween meals. It is high protein and high calorie but low residue.

Basically let him eat all the stuff that you are normally told not to eat, my dietician told me 'bulk on the weight, don't worry about anything else too much, you can think about healthy diet once weight steady'
Posted 3/4/2011 8:58 PM (GMT 0)
has anyone used the TPN at home? if yes, how difficult is it and how do you adjust things for the blood sugar issues that happen? Even if you don't have high blood sugar, this TPN causes high sugar that has to be adjusted all the time. How do you monitor such a thing at home? thanks
Posted 3/4/2011 9:54 PM (GMT 0)
Natwell, you might want to make a new post and ask this question. That way we don't take up Stkitt's post. Thanks!
Posted 3/4/2011 10:31 PM (GMT 0)
((((Kitt & Hubby)))) Sorry I don't have any advice other than what was already offered. Know that you and hubs are in my thoughts and prayers.
Posted 3/9/2011 11:17 AM (GMT 0)
I'm 6'2", and also dropped down to around that weight when I was diagnosed. I didn't notice it, but it scared my parents pretty bad. I did notice the weakness, though. That scared me. After I was diagnosed, the doctor told me the same thing as the others here: put on weight first, then worry about healthy foods.

Of course, that didn't help when the thought of eating made my insides scream in agony. They put me on a short course of Prednisone to get me out of the "dangerously ill" zone, and from there have been trying all kinds of treatment. 7 years and nothing's done the trick, but I've gotten close a few times.

I had a job, right after high school. The work was boring and menial, but it was satisfying, knowing I earned that paycheck. Made me feel good. I miss that, and it sounds to me like your husband does too. I fell back on video games. They bring me a similar sense of accomplishment. Maybe you could find something similar for your husband? I get the feeling he probably wouldn't be too into gaming, but that's not the only hobby out there that can fill that need. Models, maybe? I enjoyed the few I built.

In any case, I hope you and your husband find something that helps.
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