Husband has Crohn's

[wildfire313]

My husband has Crohn's disease and I am here to try to better understand this disease and how I might help him. He has been in almost constant flare up for the last 4 + years. Medications help to keep him from being bedridden, but do not stop the disease. Has anyone else experienced this? He has bleeding, ulcers, severe abdominal pain, and joint and bone pain. One of the medications that he was on also caused pancreatitis and he ended up in the hospital and we nearly lost him. There are other things going on as well, but these seem to be the most prevalent. He is currently taking hydros for the pain. It does not seem to be working. It is affecting his life in so many ways. He seems to be losing interest in the world around him. I feel horrible for him, and want to help. I am here for suggestions.

 

[GoJohnnyGo]

Hello!

Glad to have you aboard. You'll find spouses of Crohn's sufferers here. It's tremendous that you've reached out to us -- the support network here will try to help you out.

A lot of us have auto-immune problems as a consequence of our Crohn's.

Any way we can help we'll do our best. Stick around, you'll find the best supportive community.

 

[wildfire313]

Thank you so much!

I have so many questions, I'm not sure where to start. I know the weight loss is normal, and the nausea - but is it normal to simply stop eating?

 

[GoJohnnyGo]

You've come to a really great place. I know it's saved me.

Many of us first found this forum at our wits end. The trick is to hang out and make friends. You are not alone any more.

 

[wildfire313]

I'm glad to have found this.

I cannot tell you how wonderful I think it is that you are all so supportive of one another - and so honest. In just reading the posts here, I have learned more than in the four+ years that I have been asking questions of the doctors.

Thank you, again.

 

[misscris]

I'm glad I found this as well.

I was trying to get information and learn more about this disease. At least this way I get to learn it from what appears to be a good group of people!! Everybody's story seems to be different but yet the support and care is the same throughout. Can't wait to meet everybody and get talking some more.

Sorry about your husband wildfire, it seems we've both stumbled on a good site to try and understand things. I don't have any words of wisdom though since I'm still trying to grasp it all myself.

 

[GoJohnnyGo]

I personally think its tremendous that you've decided to reach out. Let your husband know that he can post here if he so desires.

There's probably a lot of ground to cover, so if he's up to it we'd be willing to hear it.

 

[kello82]

hello wildfire
i think its great that you are making this effort to help out your hubby and understand what he's going through. it means a lot to me when someone does that for me, so know that he appreciates it, even if he doesnt express it, ok?

to answer your question about eating, a lot of us suffer from a huge loss of appetite when were flaring. for me, i could go all day without eating. then maybe feel a little hungry for some dinner, eat 2 bites and thats it. its a mix of the food causing pain in my stomach and also just lack of appeal that causes this. my body just does not want the food, i will even get queasy at the thought of the meal i know i have to eat.
so, yes it is normal. however, he has to eat! food is so important when we're flaring. someone said that we need almost twice the number of calories as normal if you have active inflammation because the disease just sucks out any energy you put in.
this is something you can help him with maybe? if its an appetite problem then see if he will at least drink some supplement drinks like boost, ensure, etc. these are high in calories and nutrition and are great for when you dont feel like eating.
if its a question of food not appealing, then see if you can discover what foods DO appeal to him. even if its only one or two items, you know that these foods sound good to him. if it something sounds good, i have a much better chance at eating anything even though the nausea and pain is still my belly.
one other side to this. you also mentioned that he seems to be losing interest in things, as well as that hes stopped eating. these *could* be signs of depression. many of us have been there. a time when this damn disease just gets you so down and you couldnt care less what happens. but its important that you talk to him and try to discover whats going on in his head. if it seems like hes upset, then therapy might be good for him. or the two of you could do your own therapy. who knows, whatever way it works out, as long as his feelings are being addressed. feeling good isnt just a challange on the physicl level, its definitly emotional too

yup and like gojohnny suggested, maybe tell him about the forum here and encourage him to post.
it is kind of a therapy in its own way, this little corner of the web here

you two will definitly find this place to be supportive and caring. and just a wee bit knowledgeable i dont even wanna know how many years crohns experience we have between us all. only about 21430948

 

[la la]

Hello Wildfire~
I am SO sorry you and your husband are going through this! I say both of you because he has the physical/emotional pain and it sounds like you are hurting for him. ( it's really a bummer) My husband has pleaded with me to let him help me over the years. Unfortuantly for so long I felt like I was worth nothing but grief to he and my family. It has been a very long hard journey. I have found that having a counselor to talk to has made me put things into better prospective. I have read in so many places that anyone or family dealing with chronic illness should have an outside support system. I waited way too long to finally do that. My conselor has been amaizing! It has also helped me so much reading all of these kind honest people on this site. Reading your post tonight was great too because it makes me see how some of our spouses must feel. Helpless maybe? My husband has been my rock when I felt like I was in sinking sand. Just hang in there! You might want to go to a doctors appointment with him so you can talk to his Dr. about what you are seeing. Like Kello said he might be having some level of depression. There are some studies that have found higher doses of antidepressants seem to be helpful to the gut too. I hope a have not rambled on to much. I just really feel for the two of you because my crohns is very much like your husbands. My joints hurt SO bad and swell So bad! I have been nonresponsive to all of to all my medications so far and it's been 10plus years. I do have to take pain medications also but it does not make the pain go away completely. I fought taking them for a very long time because I did not want to have an addiction on top of everything ealse. My doctors have told me that your body can't heal when you are in so much pain. Messagge therapy, water classes in a warm pool with instructors trained by american arthritis foundation, and even a little meditation and yoga have all been things that have made my life with crohns a little bit easier. Some might work for your husband some might not. I know thats a lot of maybe's but I also know it's been nice to have new things to try when all of the meds you take are not doing it for you. (not that he should stop taking meds recomended by his doctors that he needs) It's just helped my mental well being along with my physical aches and pains knowing that there are things I can do in addition to the normal recomedations you hear in the doctors.
I know you will find encouraging words from some of the senior members on here. It's nice to just be able to get real life feed back about everything you can think of! Take care and keep us posted and always ask questions when you have something on your mind. Maybe even your hubby will find this site a good resource for the two of you......

 

[Guest]

hi Wildfire, and welcome

i can only echo what's been said already really. i'm so sorry you and hubby are going through this, and at such a level too. sometimes Crohn's isn't bad enough to stop us living the life we want to, and sometimes it just knocks normal life right out of the equation.

do you know what the doctor has in mind for your husband? is there any talk of surgery, and do you know if all his intestinal inflammation is in one place?

also, has anyone suggested professional support to you guys? sorry to throw all these questions at you.. just trying to see if there's any avenues you haven't explored yet.

really glad you joined us - i've said it time and time again, this forum is absolutely wonderful for anyone who's life is touched by Crohn's Disease.

 

[D Bergy]

Not eating is something I experienced when I was in rough shape. It is not appealing to eat when it is going to make you sick feeling, or you are fairly sure it will result in vomiting. It would drive my wife nuts, but I just could not eat at times.

I also lost weight, a lot of weight, and was too weak to really do anything other than my job, and even that was getting tough. He is probably losing interest in everything because of the combination of being too weak to do anything other than conserve his strength, and the feeling of hopelessness that nothing is going help him.

There are various treatments out there. Some conventional and others non-conventional. It is a matter of finding the ones that work for the individual.

Ulcers, if you are talking about the traditional stomach ulcers are almost always caused by an H-Pylori infection. There are antibiotics for that, and alternative treatments also. H-Pylori could also be a contributor to Crohn's symptoms.

Feel free to ask any questions you have. You will get various opinions on treatments and anything else. That is OK as no one treatment works for everyone. Controlling this disease is largely a matter of trial and error, as most anyone here can name a few treatments that did not work for them.

Good Luck.

Dan

 

[fenway1971]

Welcome to this amazing forum. It's a tough disease and your husband is awfully lucky to have your support and curiosity to learn more.

What's great about this place is that no matter what you post - how silly, dumb or annoying you think the post is - there'll always be at least one person out there who responds. Helps make you feel less alone.

 

[coronetrt101]

Hey wildfire313..

I can fully identify with what you and your husband are dealing with... It can be very difficult because you want to help but there is only a certain amount you can do.

I would highly recommend that if he is tried everything else and its not helping or help that much he could give Martial Arts breathing a try. I have had huge success with it...

It takes a while to really learn but it worked wonders for me. Here is a link to learn how to do it...


http://s622.photobucket.com/albums/t...view=slideshow

To see more on how I figured out Martial Arts breathing works go here...
http://www.crohnsforum.com/showthread.php?t=5951


Good Luck

 

[wildfire313]

Thank you all for your concern, suggestions, and support. I go to all of his appointments with him, and ask a lot of questions, but either the docs don't have answers, or haven't felt like sharing. I know that my husband is suffering from depression (good call Kello) and have finally talked him into taking Zoloft - it's been two weeks now and it has helped some. We are financially unable at this time to adequately treat his illness. I know that losing his job due to his illness has created so many new worries for him. I am concerned that his doctors don't seem to know what they are doing. He is 6'1" and currently 135 lbs. (up from 119 a yr ago). I have been giving him massages at least 4 times per week, feeding him anything that he will eat and hoping he will keep it down, trying to help him keep his sense of humor, and fighting with the docs over his treatment. They know our financial situation and so are not suggesting anything but what is already being done. Lots of pain medication, 6mp, prednisone, reglan, aciphex, promethisine, levothyroxine, and regular checkups and bloodwork. His inflammation extends throughout his intestines. The last time we were in they were checking to see if it had reached his stomach, and we found that he was swollen almost closed. I am worried right now that he may have an obstruction. Everything that I have read in these forums leads me to believe that that is what is currently going on. We see his GI in two days.

I do have this question. Do the ulcers in his intestines go away over time? What, in your opinions, is the best treatment for these? And what happens if it is an obstruction?

This forum is a Godsend. I have no support system, and to be perfectly honest, felt like crying when I saw that you had responded. My husband stopped going online to chat or research his illness because many of the sites that he found made it sound hopeless. I love that you are all so supportive of one another - and so upbeat. I will definitely take your advice. Thank you again.

 

[wildfire313]

His inflammation seems to be all throughout his intestines.

No one has suggested any professional support. When my husband finally asked his doctor for something for depression, his doctor stated that he was surprised that the question had not arisen sooner.

Life is definitely not normal..lol. So I'm trying to help redefine our definition of normal. If my husband is able to interact with me, and our children, and isn't severely ill, I count that as a good day. We have learned to joke with one another about his illness and it seems to help.

 

[wildfire313]

There are various treatments out there. Some conventional and others non-conventional. It is a matter of finding the ones that work for the individual.


Feel free to ask any questions you have. You will get various opinions on treatments and anything else. That is OK as no one treatment works for everyone. Controlling this disease is largely a matter of trial and error, as most anyone here can name a few treatments that did not work for them.

Good Luck.

Dan

Dan, what are some of the non-conventional treatments?

 

[wildfire313]

Hello!



A lot of us have auto-immune problems as a consequence of our Crohn's.

My husband has Crohn's as a consequence of auto-immune problems - has anyone else run into this?

 

[D Bergy]

I have tried quite a few unconventional treatments and all but a couple failed to help. One that failed to help me, but I think helps many, is good probiotics. VSL 3
to be specific. It cannot hurt, in any case.

The one product that helped me quickly, and very noticeably, and at least two other people with Crohn's, is Miracle Mineral Supplement. This is a grossly over hyped product that when mixed properly is the chemical Chlorine Dioxide. Chlorine Dioxide is a disinfectant used in water treatment and other applications where a bactericide is needed. It is not approved to treat anything. It has been used by thousands of people for various conditions, with varying degrees of success. It is experimental and has to be used with care, as it is quite powerful.
The sicker you are, the more you will react to this treatment. I can take a full dose now and have zero effect. I had quite pronounced, typical responses to my first treatments.

The important property of the chemical Chlorine Dioxide is its ability to kill acidic bacteria without killing most normal beneficial bacteria in the body. I have used this for my Crohn's and it resolved my two symptoms of loose stool and a sensation in my terminal ilium which I could not get rid of any other way. It took four weeks of use to clear all of these symptoms, and I took it two weeks longer to make sure I killed most all of the symptom causing bacteria.

My wife also used this product for Lyme Disease, and it worked well. Unfortunatly, her stomach is sensitive and she could not take it for more than a couple of months. With Chronic Lyme Disease, years may be needed to rid the body of such a persistent bacteria.

I will repeat that Miracle Mineral Supplement is not approved to treat anything and anyone using it does so at there own risk. Having said that, I know of no one who has had any serious side effects from it. The one thing that it can cause, particularly if you are loaded with acidic bacteria, is stomach upset, vomiting in extreme cases.

The normal response is diarrhea at first. When the bad bacteria is cleared out, this goes away. After this initial effect, you will have hard normal stool no matter how much you use. The dead bacteria causes the loose stool and when they are cleared out, the diarrhea is gone also.

Do some research and make up your own mind. This is not for everyone, but in my opinion it was the second most important treatment I used.

The most important treatment was Low Dose Naltrexone. This is a Crohn's treatment, but not one used by very many. I will just point you to the web site. You can do a search here as it has been discussed many times.

In a nutshell, LDN boosts your immune system and works for Crohn's about 75% of the time. No serious side effects and it is cheap. It also protects you from other autoimmune diseases and Cancer. It is an Arthritis treatment. You can pretty much cover most all Crohn's related conditions with this one pill a day.

I have used LDN for about two years now. I still have no symptoms of Crohn's. I only use Miracle Mineral Supplement occasionally now. Like when I get bit by a Deer Tick.

Check out Low Dose Naltrexone at: http://www.lowdosenaltrexone.org/

Dan

 

[kello82]

well....the obstruction may clear on its own, or if it gets severe and he is vomiting, nauseous, and not pooing...he may need surgery.
i know you said you cannot afford the medical care, but if you really think he could be obstucted, its important to get imaged for it. arent there some hopsitals that give treatment regardless of ability to pay? maybe you could research to see if theres any around you.

i am glad that the depression is beign addressed, and that you also take the time to give him massages, make him foods he likes, etc. that is exactly the kind of support someone so sick and flaring needs, especially when their mood is down too.

and im glad you two are finding ways to joke about it all. after all, who as a kid DIDNT laugh at the prospects of poo poo and farts and other bodily functions?

 

[Guest]

i agree - if there's any suggestion he may have a real obstruction, this needs to be looked at.

re LDN, i'm on it - so far no bad side effects whatsoever, and like your husband, i am extremely sensitive to things.. my immune system has gone more & more into overdrive over the past years. so i'm really pleased i'm ok with LDN.. however, i'm still waiting for it to have a beneficial effect on my Crohn's - it's early days, not been on it all that long.

the ulcers can go away, with treatment, & possibly subside on their own. problem is, the scar tissue that forms when they heal can eventually cause a narrowing inside the bowel, leading to partial or full obstructions.. so really once a patient is identified as having active Crohn's ulcers, he/she should really be on a medication to reduce the inflammation.

 

[kromom1]

We are financially unable at this time to adequately treat his illness. I know that losing his job due to his illness has created so many new worries for him.

Some of the drug companies do offer financial assistance. I have insurance, but when I was on Humira, I got 5 or 6 months' worth of it free as they paid my copay through the "Co-Pay Plus" program (I think that's what it was called). I could have gotten it free longer, but went off of it at that time because it wasn't helping me. It may be worth checking with the drug manufacturers to see what kind of assistance you could get for some treatment for your hubby.

Also, you mentioned his worries with losing his job - stress can definitely be a factor in worsening Crohn's. Some kind of counseling or therapy may help in that respect, too.

Good luck, and welcome to the forum, Wildfire. Your husband is lucky to have you!

 

[coronetrt101]

Wildfire313,

Like mentioned above stress is a huge factor for me... The more stress the bigger the flare up.

Have either of you considered Disability... Crohns is covered by Social Security and also your home states disability insurance. You would also qualify for medicare. Your whole family could get disability insurance from Social Security.