New guy...

[luvmywife]

Hey everyone, I am new here, my wife suffers from crohns. I stumbled upon this site doing research. We have been combing the internet looking for answers, and this seems to be the place for help. It seems very difficult to get straight answers from doctors, so this is the next logical place i.e. folks with experience.:smile:

 

[Jennifer]

Hi and welcome to the forum!

May I ask when she was diagnosed, what meds/treatment is she on/doing and what her symptoms are? You're doing a great job by not only educating yourself but are also helping her by reaching out.

 

[Angrybird]

Hello and welcome to the forum

I think it is wonderful that you have decided to join to learn more about this disease. I was also wondering how your wife is doing at the moment and what meds she is on?

AB
xx

 

[TangieC]

Welcome! It is wonderful I've found great info and support for my little boy via this forum. If you want an education, you've come to the right place!!!

 

[luvmywife]

Hey Crabby, Angrybird and Tangiec,
My wife was diagnosed in 05...about a year ago she did Remicade infusions. She had horrible side effects which gave her lupus like symptoms that have never gone away. She got frustrated with everything about mid-summer and quit all meds. So, I started looking at the holistic approach, diet, supplements, pro-bio-tics, the whole nine yards. We had a pretty darn good summer considering, she was well enough for us to take the kids on 2 vacations. She had more good days than bad. Then about a month ago her joint pain and the crohns really started beating her down. She did a round of prednisone and as long as she was on it she was on her feet. Anyway, we went back to the doctor and decided to take the Humira route. Even though the Remicade was such a failure. She has been bed ridden since roughly mid September and we started the Humira injections the 20th of last month. She was able to get out of bed for a few days. I then gave her the second injections on the 3rd of October. Once again she was in bed, I would carry her out to the couch during the day. She can't walk because her feet hurt so bad. Albeit, I think her pain levels started getting less. She was able to walk, and was up and going for the past 4 days. I was and still am very hopeful. I have an eagle eye on her and have watched her get more and more depressed since she started this humira. Yesterday was a fairly good day, we both were out and about. Today, well my heart hurts for her, I just don't know what to do for her. She is 33 and does not belong in a bed. I apologize for being so long winded, this disease is miserable for her, for our kids, for me. Uggggh thank you for this outlet.......

 

[Angrybird]

I had the same problem with the Remi giving me drug induced lupus and it took a good while to recover from it. Did your wife ever see a rheumatologist regarding this and the joint pain? Has she had any of her vitamin levels checked at all? Is she still getting tummy issues or it is mainly the joints that are keeping her down?

 

[luvmywife]

I had the same problem with the Remi giving me drug induced lupus and it took a good while to recover from it. Did your wife ever see a rheumatologist regarding this and the joint pain? Has she had any of her vitamin levels checked at all? Is she still getting tummy issues or it is mainly the joints that are keeping her down?

Yes we do have a rheumatoloist who says he can't find anything wrong with her joints. He also will not acknowledge the fact that remi caused the lupus like symptoms. I belly ache about these docs and you prolly wonder why we don't find a new or second opinion. Boise is rather small, however we may seek out docs in Salt lake in the near future. God willing! To answer your other two questions, She has weekly blood draws. And she is and has been in a flair for sometime now. Prednisone only gives her temporary relief.

 

[David]

Hi there and welcome

I'm so sorry to hear about your wife, that's terrible And I can't imagine how hard it is on you. A few questions that might help us direct you to further reading:

1. What are her symptoms you associate with the Crohn's?
2. What are the symptoms you associate with the drug induced lupus?
3. Is she unable to get out of bed some days because she is in so much pain or because she's so exhausted?
4. When you say her feet hurt, is it the joints? Or does it feel like really bad pins and needles? What kind of pain specifically?
5. Is anything abnormal on the lab tests she gets?

All my best to both of you.

 

[luvmywife]

Hi David,
1.)The crohn's symptoms are pain in her gut, bleeding, sharp stabbing pains in her anus. It hurts to eat.
2.)The symptoms associated with the lupus are her joints hurt, sensitive to the sun, Sometime she gets a slight rash on her face and fatigues easily.
3.)She is unable to get out of bed because of both pain and exhaustion.
4.)Her feet hurt because of her joints, she says it's pins and needles on the really bad days. Since starting humira I haven't had to carry her to the bathroom, however I know she is still in quite a bit of pain. I can see it in her face when she is walking.
5.)We just had lab work done at her GI docs office and at the Reumy's office. Nothing abnormal...
David I appreciate any new info you can introduce me to!

 

[David]

A couple thoughts for you:

1. If they don't feel she has drug induced lupus, you may want to have them rule out fungal infection if they haven't already. Remicade creates the opportunity for some rare fungal infections that have a variety of symptoms including fungal arthritis (read that).

2. If they haven't already, be sure to have them test her vitamin B12, vitamin D, and magnesium levels for sure and any other vitamins and minerals they are willing. Those are three big ones though and deficiencies may account for some of her symptoms. Deficiencies in those are quite common for people with Crohn's.

I hope your wife feels better soon.

 

[luvmywife]

Hi David
Thank you, her next apt is in a few weeks i will ask them to see if they tested for that or if they will.
She is deficient in B-12 and vit D, she has labs later this week we will see if they will test for or others they are willing to test for.
Thanks again for your support,,,

 

[David]

Is she supplementing B12 and D? If so, how much of each and what are her current levels?

 

[Mountaingem]

Hi luvmywife! You are awesome for joining us here-my husband is very supportive also and I tell you it is truly a gift to have a supportive partner. I know I would not have made it through without him.

Also speaking as a wife who has spent her fair share of young married life in bed, the most comforting thing my husband has always done is reassured me that he doesn't feel I'm a burden-of course I knew he loves me but I personally carry a sense of guilt as being the one bringing this into our lives. It's not logical I know but I thought I would share this with you.

Please feel free to ask any manner of question here-there's no such thing as TMI with us and everyone will be happy to help, so please don't hesitate to ask away.

Sending healing thoughts for your wife and if you ever need a listening ear, we're here for you

 

[luvmywife]

Hi luvmywife! You are awesome for joining us here-my husband is very supportive also and I tell you it is truly a gift to have a supportive partner. I know I would not have made it through without him.

Also speaking as a wife who has spent her fair share of young married life in bed, the most comforting thing my husband has always done is reassured me that he doesn't feel I'm a burden-of course I knew he loves me but I personally carry a sense of guilt as being the one bringing this into our lives. It's not logical I know but I thought I would share this with you.

Please feel free to ask any manner of question here-there's no such thing as TMI with us and everyone will be happy to help, so please don't hesitate to ask away.

Sending healing thoughts for your wife and if you ever need a listening ear, we're here for you

Hi mountaingem, thank-you for your post! It is very reassuring to know there are other folks out there dealing with these same issues. I love my wife dearly and I hope she knows she is not a burden. Our kids and her are the light of my life. Thanks again...

 

[luvmywife]

Just wanted to get on here and say hello again to everyone. It's been awhile...

 

[acheallova]

Hope you have an update for us luvmywife. Welcome back, you've been missed. My husband is very active in my treatment and health. I have him to thank for finding this forum. It's so awesome that you are there for her. I'm sure she appreciates every minute, even though she may feel to low to express it sometimes. I know i appreciate my husband more than anything, but have a hard time letting him know cause i feel more like a burden to him than not. Keep your spirits up. Hope all is well. Thoughts n prayers with you and yours! Muah- hugs-

 

[Pirate]

Luvmywife, I also have suffered joint pain with my Remicade. I know its normal for about a week after the infusion but mine was lasting longer and longer. It would be in 2-3 differant joints one day and somewhere else the next. The worst was my ankles. It felt like there was gravel between the joints. My wrists and fingers were the other areas that would hurt also. I actually thought it was going to cause me to stop taking my infusions but about a month ago the pain started to slowly go away. Don't know why but it did.
Its nice to here how supportive you are of your wife. I've had CD for 26 yrs and my wife has been my rock all these years. Without her I wouldn't be here today. We knew nothing of this disease and when I was diagnosed, SHE, began to educate herself and she is the one that asks questions about treatments and how certain things work. She is the one that motivates me when depression starts to set in. She has learned the signs of my depression, my flares and when its time to get to the ER.
You are what every CD patient needs so don't give up helping her and educating yourself. Good luck to you and your wife.

 

[luvmywife]

Hi again everyone! I have to say, I feel the support here! And want everyone to know I really appreciate it....update on my wife. Things are not going so well. It has been cold and rainy here, even though I keep the temp in the house at 75 deg. she can barely move. It has been this way for awhile. I do my best to stay strong for her, yet I know i fall short. Anyway I still hold out hope for Humira to improve her quality of life. Until then I do what I can to make her smile. Thanks again for all the support!

 

[Hobbes650]

Hey everyone, I am new here, my wife suffers from crohns. I stumbled upon this site doing research. We have been combing the internet looking for answers, and this seems to be the place for help. It seems very difficult to get straight answers from doctors, so this is the next logical place i.e. folks with experience.:smile:

Absolutely! This site is my favorite due to all the information and support you can find. I hope your wife is doing well and look forward to your future posts.

Best,
Hobbes

 

[David]

You mentioned previously she was deficient in various vitamins/minerals. Is she supplementing those? Did you get the labs redone recently?

 

[acheallova]

Sending prayers your way!! Muah- hugs-

 

[luvmywife]

You mentioned previously she was deficient in various vitamins/minerals. Is she supplementing those? Did you get the labs redone recently?

Labs were done the other day and we got the results back today......wait for it...she is low on sodium this time. I believe it to be a side effect of cymbalta, which she just started taking 3 weeks ago. Right about the time she started going back down! RA doc threw his hands in the air the other day and said Humira is causing a reaction in her body and to stop injections. He also said, and I quote, "I just can't figure out what is wrong with you, your arthritis doesn't act like typical R.A. that is related to bowel disease." He then gave a referral for the University in Salt Lake.....ugggh
I didn't feel there was any science behind him pulling her off Humira, when in all actuality, she has had alot more good days than bad since starting Humira. Things were on the up and up until a few weeks ago. I did some research and feel most of what is going on is a result of the cymbalta. I intend on submitting my online findings to her gut doctor at my earliest convenience. :mad2:

 

[acheallova]

She is very lucky to have someone like you, so supportive and caring; keeping her best interest in mind. So it was her RA doc that pulled the injections? Not her GI? I was most certainly call a ( her) GI and talk about this. Especially if she is doing somewhat better on the injection. Give it time to become effective and make sure it does/doesn't work the best for her. Good luck! I sure do hope things turn around for her and you as well. I'm positive she is so grateful to have you by her side! Muah- hugs-