Wife has Chrons, and I'm overseas with the military

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

D

dks0111

Guest
So here is our story. I'm 26 and my wife is 22. We are both from NC. Last year I volunteered to go overseas with the Coast Guard to do my part. While I was on leave between my last unit and my pre-deployment training we went to visit my father in PA. My wife doesn't like going up there. Well while we were there she was feeling really bad and laying in bed almost all morning. She was complaining that her stool was bloody and suck. I thought it was just in her head. We left my dad's house and visited my parents in NC. Same thing there. I was just thinking that she didn't care for my family and wanted to avoid them. Because of this I became frustrated and angry with her. A couple of weeks later I was in training in Portsmouth VA. She had to go get and endoscopy and the one that goes down her throat. They found ulcers all over. After they received the blood sample we found out that she was allergic to gluten and that she has Chrons. I'm glad that we moved her to her parent's house before I left in December since she has her entire family there for support. I went home for my R&R last month due to a death in the family in PA. My wife was excited to go this time because down the street from my fathers house they have a pizza place that has Gluten Free pizzas. They are expensive, but you should have seen her face when she was eating it:ybiggrin: . Last Sunday my wife went to the E/R because of a flare. She has been trying to find a medication that works for her. They have given her prednisone for her chrons and nexium for her acid reflux. She has been in the hospital since Sunday...almost a week now. It is depressing because I can't be there, and even if I could, there isn't anything I can do. We did find out that her Gasterenterolgist (spelling) is a moron. He told her to take Benefiber, and we neglected to look at the label. First ingredient, wheat.....moron. I'm glad that I am in the military, I don't think we could afford it otherwise. My wife also wants to go to school to be and Ocupational Therapist Assistant. I am fearful that we will pay for the school, she will get a degree, find a good job and then have a flare again. I would think that eventually her place of work will say that the job is detrimental to her health and let her go. What should I do? So anyway I'm glad I found this forum. My wife says I waste so much time on forums for my truck her car my bike the guns etc...I think this one with be a little more beneficial.

On a side note, has anyone tried the trichuris suis therapy? Is there anywhere in the states that she can get the treatment?
 
hi Dks, & welcome.

my first thought was similar to yours, that i am glad to hear your wife is with her family at this difficult time, particularly with you being so far away.

i winced when i read about the fiber med that the GI wanted your wife to take - Crohns sufferers can experience a lot of pain and problems when taking fiber, particularly if they're in a flare, which your wife sounds like she is right now.

it's a common opinion that 'bowel problems' need lots of fiber. well in mild conditions such as constipation etc, that may be true. but for Crohns disease it is often the opposite that we need - a LOW residue diet, certainly when things are sore and flaring.

it does sound like the doctor needs a few lessons in Crohns management. i think i would be very tempted to ask your wife's family to seek out another Gastroenterologist, in the very first instance. she needs to be under someone who she can trust to give her the right meds and advice.

regarding her career - i would tempted to put this on hold until the Crohns becomes more steady.

just my thoughts, anyway.

glad you joined us - i hope things turn around for your wife very soon!
 
The doctor is being replaced. Her primary care physician said that he would give the referral to any doctor she wanted. One actually came up from Greenville, NC to Ahoskie to see her. I believe my wife will choose her and see what develops.

Thanks
 
that's great Dks - hopefully the new doctor will get her on the right track with meds etc, and maybe also arrange a dietitian to advise her on what to eat which will give her nutrition but not irritate her intestines.

there are many threads in here on diet etc, and tips from members who have found certain things that help, & things that cause problems etc..

& you're welcome :)
 
I just spoke with her. She sounded like she was in alot of pain. She said that she is having an allergic reaction to a med they gave her. Before that she had felt good enough to go home. Hopefully I'll get the phone call around 2am my time with her at home...I can only hope. The stress is starting to get to me. I'm 26 and starting to go grey...lol
 
Hey dsk - welcome to the forum.
I always tell my husband that grey hair is better than NO hair!
So don't you worry about that.

I wouldn't put the career on hold if I were her. She can always start some classes, even just one, and she'll get there eventually. She will hopefully find remission soon, and be able to get on with her life. I work next door to an OT. It's a fun/rewarding job. Let your wife know about us, and maybe she'll sign up herself.

Hey - want to be the best husband in the world??
Find a recipe for gluten free pizza and make it for her the next time you're home. She will NOT believe that you took the time and effort to figure that one out!

Also - thanks for what you are doing for our country!
 
It is so nice to see another spouse join the forums! She is very lucky to have someone concerned for her well being!

Doctors, medications, and hospitals become somewhat the norm when it comes to Crohns as well as having unexpected complications and flares. This is why I suggest her not giving up on something she wants to do. My medical problems go beyond Crohns so I am self-employed (web and graphics designer) that way I can work when I feel well and put things off when I don't. She could work until she really can't any more - and deal with things as they come.
 
Thank you for all your support. I had briefly mentioned the idea of working from home. I think it would be the best thing, but we will see. I just called her again, it breaks my heart to hear her crying all the time. She said the doctors told her that her chrons is not keeping her in the hospital but now its anxiety. As far as our Insurance, we have Tricare which is what all active-duty military members have. Everything is covered, except experimental medications(which I would take a loan out to pay for if need be). I just want her to find a medication that works. She is small enough as it is (5'4" 105lbs), and needs to start eating. Here in a couple of months I get to choose where we go next. I want to see how this doctor does for the next couple of months, if it doesn't work then I will move where I have to for her to be near a good amount of specialist. We will see.
 
Well I just spoke with her, they are letting her out at around 4pm eastern time. The put her on some medicine that starts with an "A". They are also giving her something for nauciouness, something for anxiety, and something for acid reflux. They have said she can see a psychiatrist if she so feels. Also they gave her a prescription for zoloft and said she can use it if she wants to. I talked to her about the whole school thing and she said that she can go for medical transcription..so we will see. Thanks again everyone. David
 
Zoloft, among other anti-depressants, do not work on me. I go the therapy route! It is a tough lifestyle to go through, even with the support of loved ones. My main reason for choosing therapy is that I do not have the support of my family, so I do not have much of a support network for myself. I think with a little adjustment and lots and lots of love and comfort from loved ones she will do just fine!

I hope the meds work - keeps us updated!
 
dingbat said:
it's a common opinion that 'bowel problems' need lots of fiber. well in mild conditions such as constipation etc, that may be true. but for Crohns disease it is often the opposite that we need - a LOW residue diet, certainly when things are sore and flaring.
Click to expand...

Just so you know, Benefibre is entirely soluble so leaves no residue at all. It forms a jelly like substance in the bowel, which keeps things lubricated. I'm prescribed it by my doc to compliment my low fibre diet.
 
Creepy Lurker said:
Just so you know, Benefibre is entirely soluble so leaves no residue at all. It forms a jelly like substance in the bowel, which keeps things lubricated. I'm prescribed it by my doc to compliment my low fibre diet.
Click to expand...

are you ok on this?

i looked it up on google just now, and although it is, as you say, a soluble fibre, it can still cause "gastrointestinal pain or discomfort, diarrhea, nausea and stomach pressure with a sensation of fullness."
 
David, it's great to hear she's coming out of the hospital :) must be a big relief to you!

she's obviously taken the recent events quite hard, which is understandable. i hope she is on the right side of things now, and the meds start to make her feel better in all ways :)
 
dingbat said:
are you ok on this?

i looked it up on google just now, and although it is, as you say, a soluble fibre, it can still cause "gastrointestinal pain or discomfort, diarrhea, nausea and stomach pressure with a sensation of fullness."
Click to expand...

Most medication for the bowels generally comes with these sort of warnings and side effects.

I'm fine with it. It's pretty helpful.
 
She called me this morning (1am my time) to tell me that she was out of hospital. I woke up and went to work got the call at around 9am my time saying that is was 2am there and that she couldn't sleep, she was crying, which mad me cry....I told her to go back to the hospital, she didnt want to. I had some work to do and then called back at around 4pm my time and she was back. They gave her some valium, and they are still deciding what they want to do....we will see.
 
Do you think she would feel like coming to this website on her own? I think she needs a lot of emotional support right now; and I know she'd get a lot of support N comfort on here.
 
Hi dks0111. I am glad you decided to come here and look for help on behalf of your wife. The medication she was given could be a couple of different things. If it is Azathioprine, it usually takes several weeks before it kicks in. Another possible medication it could be is Asacol, which is an anti-inflammatory. This is not as strong or aggressive as some other drugs typically used to treat Crohn's, so the doctors might decide to prescribe a stronger drug.

One thing that may be beneficial is having your wife see a dietician or registered nutritionist who is familiar with Crohn's. Gluten allergies are becoming more and more common, and these professionals should have a good understanding of them and how to maintain a healthy diet with them. With the addition of Crohn's it is likely very important that your wife is eating food that is both nutritious and does not trigger her symptoms. You already mentioned you are concerned about her weight so you might want to discuss this with her or her family.

Keep us updated and let us know if you have any more questions.
 
Pen, I actually went to one of my higher ups and spoke with him about me going home for good. i still have 5 months till i get home so that i can get my pick of locations. I could technically go home but it would really look bad on my record since there isnt anything that I could do if i could go home. I know that she has enough support with her family and loved ones that are they. I would love to be there but don't know what comfort i can give besides emotional. i did come over here for us, to better our lives, and I plan on finishing. I can only hope that I do.

I just called and spoke with her mother. They are at a loss for words. The can't transport her medically to the big hospital about an hour away so her parents will take her. The will make sure that her chest xray comes back normal.
 
aww really sorry to hear she's had to return to hospital. it does sound like she is going through a bad anxiety/depression phase, completely understandable given the circumstances :(

i agree with Kev's post above - if she could find a way to join us here on the forum, she may get some comfort from everyone's experiences, and she would certainly get lots of support. also, it might be good for her to unload exactly what her fears are, to people who understand only too well.

for now, you can tell her there's a bunch of people scattered all over the world who are wishing her well, and would love to welcome her to the forum.
 
Well i woke up at about 4 this morning and called her dad. The docs told them that she had psychosis due to the steroids...something about a man outside her room with a magic wand....I will call in about 2 hours to see how she is doing
 
My family lives about 3 hours away, but they check in with her mother all the time. Her mom and dad, and subsequent families live there. I have talked to my command about going home early, it is an option they can exercise, if they choose too. I found out today that there might be a job opening in St Croix. Maybe thats what she needs, a nice 4 year long vacation, not having to worry about anything. I am going to inquire about the medical situation down there though. That now has become my #1 priority. They did give her Valium after she was admitted, to calm her nerves. She took the Zoloft last week sometime and didn't like it. The big problem with me leaving is that I am on of the higher ups, I have 3 subordinates out of 19 people. I will have to see what occurs in the states. If she ends up having surgery then I will go home to make sure all goes well. I'm waiting to see what happens today. I know the Chrons isn't bothering her now, its all the damn medicine that she has to take. I told her yesterday when she was in the hospital that I needed and loved her...I would gladly take her place if I could. We will see.
 
Well I just got off the phone with her. When she first answered the phone she was crying again. She said that she has the jitters because the medicine is going out of her system. She asked me to come home, which I told her I could not. By the end of the conversation she was calmed. I told her about the site again and how everyone was wishing her well. I also told her to talk to her Primary care Physician and ask him to suggest a Dietition, or nutritionist, that can help us with our situation. I told her that I would give up all the food that I normally eat and eat what she had to. I also stated again that we can start Yoga, or Ti Chi when I come home to help her relax. I think the big this is that she is stressing herself out. I said she should get some soothing CD's to listen to to help her relax more. I also told her to do what she wanted to do to assist in relaxing, masage, pedicure, manicure, shopping (I hope she doesn't, she is so small....so why are the clothes so expensive:) ). I also reminded her of the calming breaths; in through the nose out the mouth slowly, they help me. I told her that we would have to do this for the rest of our lives and that the more we could relax and not be so fixated on it the better we would be. I also said that she should come to the site as soon as she felt well enough.

It looks like this will soon become one of my morning and afternoon sights to visit when I get back to the states. So I thought it best to introduce myself and my wife. I'm David, and this is my wife Katie

Thanks again for all the support.

PB180004.jpg
 
Welcome David and Katie.. such a cute couple! I am so jealous of you both ;) I am into Yoga as well, my first recommendation would be Priscilla Patrick. Though Basic Yoga for Dummies is actually quite good. I would try to stay away from Rodney Yee, I don't think he explains things very well.

I too can not handle the added stress of my diagnosis and go to therapy to help me learn how to cope with life's difficulties. I personally don't believe in medicating yourself more than necessary - as Chronies we take enough medicine! In my ever so humble opinion and choice - I would rather learn skills to help cope then medicating it away. If I learn anything useful in therapy I can pass along to her, I will!

Thanks for keeping us updated!
 
David:
I think that you are an amazingly supportive husband. Clearly this is difficult for her and you. She is likely going through her grieving time right now. By grieving I mean that some of us first diagnosed feel like we've lost our health for life. As if we don't have an opportunity to control our destiny (at least as far as our health goes). It's not that we can avoid smoking and most likely not get lung disease. Or avoid fatty foods and avoid heart disease. We have crohn's and it is unpredictable. She will eventually come to grips with this but needs to seek out support from people other than her family. She shouldn't be made to think she is a burden but it does place a high level of stress on the family, especially when they can't do anything to help her. Please encourage her to go to counseling and/or join this forum.
I am also on Zoloft and it helps me tremendously by taking the edge off. I'm less snappy and a lil' more happy.
As for school and career. It's not a good time right now to go to school or work a stressful job. However, I don't feel that she needs to throw the idea of a career out the window. There are many, many successful people with Crohn's. Crushing her dreams of doing what she wants in the future is a terrible idea. People who maintain a career include doctors, actors, athletes, politicians, musicians, etc. My Crohn's hero is Mike McCready from Pearl Jam. As a lead guitarist he has a grueling schedule. He has found what works for him and his disease and he hasn't had to give up his career and passion.
Please, please, please don't suggest she changes her goals because of this disease. If it's her idea, support it. If it's your idea, consider keeping it to yourself.
I never thought I would be able to go back to work but I have been with my current job for over 18 months, I am successful, and I am coming up on a a promotion. My boss is fully aware of my disease and supports me 100%. Her family even walked with me in the recent Take Steps walk in Seattle.
 
Amy. First thank you for the kind words of encouragement. When it comes to schooling, I could not agree more with you. I believe that an education is a great thing. I am actually putting mine on hold to deal with my wife's illness, and to get her through school. My wife is still young, 22, and has had many changes in her choice of major. My main concern is her getting the schooling to deal with people that have learning disablities, war and civlian related injuries, and other persons that an occupational therapist would deal with on a day to day basis. I understand the stress that can result from dealing with situation. I told my wife that I don't care what she wants to do, but I do believe that I can voice my opinion and we can discuss. If she still wants to be an OTA, I will be supportive and encourage her to the best of my abilities. I would assume she will be out of the hospital soon enough and we can discuss it further. Thanks again
 
Sounds like you may be one of those rare couple that stick through a relationship in good times and bad. Good for you!

The hospital stays are usually brief unless surgery is required. The stays are great to give her rest, fluid, and IV meds (which are much better).

To get her interested in getting involved maybe you can buy her and her family Got Guts bracelets from the CCFA website. I did that soon after my diagnosis. It's a good conversation piece to explain to people about your disease. Not for sympathy but education.

Maybe you can find a support group for her in the area. If you want more suggestions I'm full of them.

Amy
 
Well she left the hospital and told me that she feels alot better. She will be going out to lunch with her mother and then will be going home. I told her I will wait up....:) I'll make sure she signs up tonight(my time) on the forum.
 
I can't believe I have never seen this thread. Welcome to the forum. I'm glad she is finally out of the hospital. As Isla it will be nice to "meet" her.:)

Keep her relaxed and rested
 
Well I thought i would stop by and give everyone an update. It's been really crazy overseas, 130F temperatures, rough seas, and other stuff I can't talk about. Katie has found a better doctor in Virginia. She was found to have a mild case of Chrons. She is also in the process to make sure that she is allergic to gluten and not anything else. I was planning on getting stationed in Wilmington, NC but that is not meant to be. So Katie and I will be going to Wilmington, DE and I will be commuting to Philadelphia. She has spoken with her doctor and he has referred us to many doctors in the area. Also there is a school right there in Wilmington which offers her OTAS program. Best news of all...70 more days till I go home for good. I'm glad I can say I did my part, but have no desire to ever step foot in this part of the world again. Hopefully
 
i'm 25 and from SC, my husband is 25 and stationed in California with possible deployment to afghanistan by the end of the year...please have your wife email me [email protected]

I know your post is from a few years ago, but I still think we could both benefit from talking to each other!
 
oh one more thing, idk if you're still on the crohns forum frequently, but you should definitely stay up to date with everything. We have to live with this every day for our entire lives and it helps so much to have a well educated and very caring support system, I know your wife appreciates any care that you show :)
 

Similar threads

K
This has destroyed my life.
Replies
27
Views
3K
kephra
K
thike1966
Christmas Eve, my car was lost, later found
Replies
3
Views
1K
Lisa
Lisa
A
What would you do?
Replies
22
Views
3K
Delta_hippo
D
F
does this seem like IBD?
Replies
33
Views
4K
my little penguin
my little penguin
B
Another biologic to be added to Humira?
Replies
1
Views
424
my little penguin
my little penguin

Latest posts

Back
Top