Hi! Caregiver here

[thunderbear]

Hi. My husband is 34 and has Crohn's disease. He has had symptoms since he was 12-13 years old but was'nt diagnosed until 7 years ago after becoming deathly ill from malabsorption. He has'nt ever been on any maitenence drugs just the occasional Asacol & Prednisone. He suffers from severe pain, bloating, eye problems, joint problems & bouts of diareah & constipation. It is never normal for him. Right now he has an intestinal infection. Is this common with Crohns? He is one no meds except Flagyl & Cipro and hydrocodone. His blood work is always screwey. Things ate either too high or low. He doesnt run any fevers & in the beginning he lost 10 lbs and cant seem to fain it back. Hes a slim guy anyway ( at 5'11 and 140 lbs pre Crohns). He is constantly depressed & angry because he wants to be "normal" again. His last ER visit was 2 days ago & the hospital gave him a print out of his lab results and his total protein was high and wbc was high and lymph was slightly low. He was dehyderated and has severe inflamation in hishis large intestine (thats where the Crohns is the worst scarring & thickening). I am worried about those blood levels. And of course Google dont help my anxieties. I feel so helpless to watch him suffer. I hate watching the one I love most in this world change. He used to be happy. Now he broods and has bouts of anger. Hes suicidal. Well he talks about it but he said he would never do it because he doesnt want me to be alone. We have a 10 year old son who is showing symptoms of Crohns. His pedi is wanting to try different things before she puts him thru all the invasive tests it takes to diagnose it but we are all pretty sure he has it. I hope to find support here and answers to my questions. Im going to try to get my husband to join. He has no friends that he can talk to because hes embarrased by his Crohns disease. He needs so much support from people who really understand him. And I hope to find other caregivers that I can talk to about my worries and helplessness I feel. I dont talk to him because he has enough on his shoulders without my worrying and anxieties. Thank you for reading this rambling post.

 

[carrollco]

Sounds like he needs a new doc. There are new treatments on the market that will help with his symptoms.

For bloating, have him watch to see how he responds to dairy. Milk products, for people who cannot tolerate them, can have some hefty side-effects, one of which is bloating and cramping. Several types of fats can having bloating side-effects and cramping such as vegetable oils/butter/greasy meats. Popcorn, potato chips, corn chips, can cause blockages when the intestines are flaring which can cause bloating and cramps.

See if you can get him onto this forum. There is so much information he can use.

I was discouraged and upset when my symptoms were out of control, so this is natural. Check with his doc about anti-depressants that can help ease his irritability and anger.

Hope this helps some.

 

[thunderbear]

Thank you for replying! I feel like i have been in the dark for 8 years....... Yea we learned the hard way about dairy and greasy food. And veggies. And certain grains. I talked him into acidophlus (sp?) probiotic and it actually helped his symptoms for a long time. It helped the bloating & irregularity. He put on some weight. But he quit drinking it and now hes back into a flare. I am going to tell him to join this site. I have been reading stories and experiances and they could have very well been written by him the way they are similar. Thanks again

 

[Jennifer]

Hi thunderbear and welcome to the forum!

Even if he doesn't want to join you're more than welcome here anytime for questions or support. There are a few people on the forum who are also caregivers for IBD. There's actually a subforum for caregivers which may help: http://www.crohnsforum.com/forumdisplay.php?f=90

I wouldn't say that intestinal infections are common in Crohn's but they can happen especially due to other complications like perforations or folds in the intestine that trap bacteria (basically anything that allows bacteria in).

When you have a great GI doc, you don't have to worry as much because as mentioned there are new meds and treatments out there and a good doc will know about them and try every single one until he starts going back into remission.

 

[Angrybird]

Hi there and welcome to the forum. I sorry to hear that you hubby is not doing well at the moment, if his current doc is not willing to look into meds that may help that perhaps it is time to look for a new one - perhaps have a look at our treatment forum to get some info on the other meds available. I think it may also be worth having his vitamin levels checked especially his B12, it is common for people with crohns to be deficient in this and a side effect to a low level is depression.......

Hope he comes to have a little nosy around too, wishing you both all the best.

AB
xx

 

[David]

Greetings and welcome

I agree with all the others above. Maybe a new doctor is in order. And I especially concur with Angrybird above who has suggested getting his vitamin B12 and vitamin D levels tested. People with Crohn's Disease are commonly deficient and proper supplementation can make a world of difference.

In addition, I would research enteral nutrition. It may help him at least reduce his symptoms, many here have had great success with it. And with that bloating I'd look at cutting out wheat/gluten/soy/yeast as well and maybe get evaluated for Small Intestine Bacterial Overgrowth.

There is a LOT of changes he can make that can help. Sorry for throwing so much at you but there IS hope.

*hugs*

 

[Astra]

Hiya thunderbear
and welcome

So sorry you're both suffering at the moment, your hubby with this condition, and you as the carer, it's hard.
I don't know how common an infection is to be honest, but I had one too. Two years ago I had an obstruction which turned septic. I was treated with Prednisolone and Metronidazole (Flagyl) and healed quite nicely without any intervention with the knife!
Hopefully the Flagyl will do it's job on hubby.
We're here for you, any questions just shout, anytime
lotsa luv
Joan xxx

 

[thunderbear]

Thanks Astra. He hasnt started Flagyl yet we are getting it today. I looked it up on drugs.com & it said to ask doc before using if you have Crohns. But I figure the ER doc wouldnt of gave it to him if it would harm him. I thought I knew everything about this disease and he's had infections before. But he's had so much personal stress since last month. So much stress that up until the last week hes been only sleeping 2 hours a night. He was getting so stressed & anxious he couldnt keep anything down. And it all has to do with his family. I finally got him to where hes not so stressed he's actually smiling again (I missed that part the most) but hes sick from this bacterial infection. His blood work was wacky. And thats what worries me is the hi wbc & protein and slightly low lymph. But hes bound to be malnourished & dehyderated & inflamed. So I've been staying on him about keeping his body hyderated with gatorade (he drinks nothing but cokes. Water makes his belly feel full & bloated). And hes been drinking his Ensure along with hi calorie meals. Its so hard to find hi calorie meals thats not greasy & rich.