Don't know what to do, HELP

[Stephenie]

my boyfriend of several years has crohns.in the beginning everything was great but lately he shuts me out most of the time. I have gone to all his tests, procedures , appoint and WANT to, but despite that he is quiet and won't talk to me. I try to cuddle with him etc.but am told he is in too much pain, never used to be this. And getting "physcal" well again too much pain.
So I want to know what can i do?? Anyone have have any ideas to how I can help him, improve things, guys thoughts, or women living with a cronhs????

 

[Jennifer]

Hi and welcome to the forum!

This issue unfortunately comes up all too often. When was he diagnosed? What's his current treatment?

When you're in pain or feeling uncomfortable it can make you irritable, tired, depressed etc. Maybe he fears that the cuddling will turn into something more "physical" so he pushes you away before he has to deal with that issue. When you're in pain or if you have diarrhea or constipation, having any sort of sexual relations IS uncomfortable because of the positions, the amount of effort, the mental concern/worry... its just not on the top of the list of things you want to do. Not that you don't want to please yourself or your partner, just that there's too many problems associated with it.

It may also be an issue with pride for him to not want to talk about it or maybe he has yet to accept the illness himself (could be in the "why me?" stage) or maybe he's afraid he's going to lose you and his thoughts are consuming him. It could be all or none of the above.

You can help him by doing what you've been doing, just being there. Once his Crohn's is in remission or at least on the way he should start to feel better. Even then it might take him some time to get back to his old self.

 

[skippy111]

I can tell you from my own experience,

For me, my chron's was so bad that I was really detached from people and lost interest in a lot of things I enjoy doing.

I moved back to NJ from texas last year in october, that was when my chrons started getting really bad... I came back here because my mother had been sick and she is getting to the point where she needs someone here..

I went back to work in February, of this year. Between february and april all I wanted to do was lay on the couch, even tho I have my own room. I pretty much shut my mother out... I was very irratable and cranky.. I knew it was my chrons acting up but didnt have the insurance to go to the hospital, may was when my insurance would have kicked in.

Im very ashamed of how I treated my family and friends, especially my mother.

My advice for you is to try and understand that he is not shutting you out intentionally, it is the chron's disease..

whenever my mother would ask me questions or try to get involved, i just wanted to be alone, If she pushed Id get cranky..

my advice is to try and give him some space, let him know you are there for him and if he needs anything just ask... but dont push him, it will only cause anxiety..

he needs to get better, he needs your patience, support and love.. but at the same time, he may be detached and I promise you it is not his choice..

let him come to you.. or ask for help..

 

[Stephenie]

thanks for the replies. He was diagnosed almost 6 years ago. He has been on the same meds for 4 years now. As for remission, unlikely to ever happen according to him. I guess it bothers me that he says his pain level is about the same as when we first got together. He didn't shut me out then, we discussed everything, so the fact he does now is really hard. But I will continue to support him any way I can. I leave him alone when he seems to need his space or doesn't want to talk. Although since we live together not always easy!

 

[Jennifer]

Four years an still no remission? Do you or has he mentioned how he feels about his GI doc? I wonder if a second opinion might be best. To go so long without relief, that's no way to live.

 

[Praying247]

Hello Stephenie, I am actually on the other end of your predicament. I have Crohn's and I know it's hard not only for me but my boyfriend. It's so true what Skippy said. It's not that we don't want to cuddle or open up to our significant other, it's just that our Crohn's disease has practically enabled us. Sometimes I'm okay, but other times I just get so depressed, and have anxiety attacks, and become easily irritable. I had flipped out on my boyfriend so many times over nothing, just due to my Crohn's acting up. But all I can say to you is to stick by him. That's all my boyfriend has done and that's all I can ask for. I talk to him when I need to and he's there when I need him. Just be there for him, especially in this time of weakness he faces. Comfort him, let him know you're there and that things WILL get better. That's something ALL of us can hope for

 

[Tiffany]

My hubby has Crohns and I am in the middle of a possible crohns diagnosis myself...what a couple we make. My Hubby was diagnosed almost a year ago, so its still pretty fresh for him. I have been in the same boat as you. You are doing a great job being supportive. When my hubby isn't feeling well and doesn't want to talk or i feel he is shutting me out, i'll try and do some little things to make him feel better. I'll run him a bath, stock the bathroom with his favorite magazines, make him a cup of tea, or even watch his favorite movie with him. sometimes those little things have helped him open up to me a little more.

 

[Stephenie]

Thanks everyone. He is very happy with his GI dr. He had seen about 3 others whom he said were no good. Apparently a lot of his pain is due to scar tissue from a bowel resection. He has discussed what can be done re this, scar tissue, and has basically been told the only "solution" is total bowel removal and a colostomy. He says that he won't go that route unless absolutely has to. He has been very adament that would be the end of any physical relationship! I have told him that I would support him through this as well, I have no issues if this would stop the pain. Lately with all that is going on, I have IBS, and I am not feeling the greatest but try to keep this low key as this causes me pain and diarrhea. I know it is no where what he goes through daily. So I have gone through the colonoscopy's myself and can relate to when he goes through with his frequent tests. But with IBS no real trreatment, or any that I tried worked. Just try to keep my stress level down. When we first met, he said at least I could relate somewhat to what goes on with him but I know it isn't the same. So I am still doing what I can. I keep conversations light, cook his fav meals, always tell him I love him etc. Some days though he won't even look at me or respond but I "hang" in there. But hearing about others that are going through this really helps. Will keep you posted!

 

[Stephenie]

Well after almost a month now and things are even worse. He has totally shut me out, unless I say goodnight and give him a kiss he will not bother. I go and hug him when he comes home from work, but if I didn't do this he wouldn't bother at all, as I have tried this. I feel like I am living with a stranger. I have tried to talk to him but he either won't respond or says maybe he should move out! It seems I can't do anything at all right these days. It is getting so hard, I now basically leave him alone, which is hard. I do not want this to end but I now feel that he would be happier alone. He has said he wants this to work but does nothing to indicate this. Weekends he gets up early and stays up, I guess to avoid any "physical" contact which is not what I am looking for. I just want his company. During the week he just avoids me. So I am getting so stressed that I don't know how much more I can take. I love him, tell him, but he mostly doesn't respond to me at all. This has been going on so long I don't know how much more I can take. Hate to complain but it really seems to be all about him that I am stressed out.I ask for little just for what we had. Oh well.. Just needed to vent!!

 

[David]

I'm so sorry Stephanie

My thought is ask him to go to counseling with you. If he really wants it to work, he'd be willing to make that effort.

*hugs*

 

[Jennifer]

Counseling sounds like a very good suggestion. A lot of people have success with it. Hopefully he's willing to give it a shot.

 

[kiny]

When I was really sick I reacted the same as your bf, I didn't wanted to be touched, I didn't wanted to do things with other people outside of my own interests. There is nothing wrong with him at all, it's just the crohn that makes people act this way, if you're in pain the only thing you're thinking about is that, and everything that was easy before now becomes tiring, including interacting with your partner.

He should focus on getting better, once he's better all that will chance, just try to go easy on him and when he's in a good mood try to be there for him, when he's in a not so good mood try to make sure he's not getting sicker and give him the space he needs.

my 2 cents

 

[Stephenie]

About 6 months ago I asked him if maybe conselling would be a benefit for us but he said he didn't think so. I will suggest it again and hope he will be more receptive this time but I have no idea what is going on with him since he will not talk to me. He seems to be in his own world so much that when I do talk to him I feel I am annoying him. But I appreciate all the help/suggestions I get from this forum, as I wouldn't know where to turn to. And it is helpful to be able to vent too! So will keep updating and hope that we can work this out. Thanks for the support, am glad I found this forum!!

 

[kiny]

If he's in pain all the time and getting worse he needs a doc though, I almost didn't make it because I refused to tell a doc how much pain I was in.

When I had pain:

*I was really quiet all the time
*I had a really short temper
*never wanted to do things
*too tired to do anything
*wasn't very kind to others
*didn't wanted to be bothered
*didn't smile a lot or at all

If he's like that, it's the pain, nothing wrong with the guy, a lot of pain will make you focus on the pain and anything else becomes bothersome.

 

[Stephenie]

Thanks kiny, I know he is a lot of pain but he says he has discussed this with his GI doc, whom he feels is the best, but other than a total large bowel removal, hence a colostomy, nothing else can be done. He doesn't want this, ie. colostomy, He has a lot of scar tissue which is the major source of his pain. But I have told him if this would eleviate his pain that I would support him. I love him and would be ok with this. He,however, feels that would be the end of us. Very sad but I still will be by his side if he will let me. Will keep on trying!

 

[kiny]

I have slight scar tissue too. What he can do is take some L-glutamine since it can prevent the further development of fibrosis. I do this, should be no side effects if taken in reasonable amounts (1000-2000mg). It's a common substance you can find in any sports shop.

http://www.ncbi.nlm.nih.gov/pubmed/20410082

There is another study that supports the use of skullcap, I can look this up too if you want.

There is no real treatment for scar tissue in crohn, unlike for lung fibrosis and other disease, which is very sad, so I went looking for things that help on my own.

 

[Stephenie]

Thanks again, I will mention this to him but he seems very unreceptive to any suggestions I make. ie. "I don't know what he goes through". But I try anyway! All the help and support I can get is so good!

 

[kiny]

Ok, well here is the study about the skullcap. Skullcap (Scutellaria) is a herb that is able to inhibit TGF-beta1, which is needed to cause fibrosis (fibrosis is the buildup of scar tissue through excessive collagen). He does not need the boswellia if he's already on meds, the skullcap is the one stopping the fibrsosis. I take that and L-Glutamine.

http://www.ncbi.nlm.nih.gov/pubmed?term=fibrosis%20boswellia

Outside of those there are no current ways to stop scar tissue for crohn outside of keeping the disease under control as much as possible, and I have spent months looking over papers and literature.

The tissue needs to stay elastic too, stretching is a good idea (I know how hard it is to convince him though, but yah, you need to stop the scar tissue if you want to avoid surgery).

Well, that's all I can say to help I think, I really feel for him since I'm dealing with some similar issues but reading about fibrosis and it's effects has calmed me somewhat knowing I do everything I can to prevent it.

 

[Stephenie]

Thanks again, will keep you posted!

 

[PlutoCronie]

Thanks again, will keep you posted!

He might want to try the Alkaline Food and Water Diet to supplement his Rx regimen. It has worked wonders for me but I have to be vigilant. Also, the Blood Type Diet. Here are a bunch of links that I have found helpful, and they include mucosal lining healing strategies.

http://www.energiseforlife.com/word...aline-herbal-teas-yes-herbal-tea-is-alkaline/

http://www.energiseforlife.com/alkaline-water-guide-2.0.pdf

http://www.acidalkalinediet.com/alkaline-foods-list/acid-alkaline-food-chart-with-12-perfect-foods

http://www.genotypediet.com/

http://www.4yourtype.com/

http://www.naturalnews.com/029864_avocados_health.html

http://herbalmusings.com/ulcers.htm


http://www.ei-resource.org/treatment-options/treatment-information/leaky-gut-syndrome-treatment/

http://medherb.com/Therapeutics/Gastrointestinal_-_Lower_Bowel_Disease_Part_I_.htm

http://www.herbal-supplement-resource.com/crohns-disease-herbs.html

:thumright:

 

[Stephenie]

Well I am back again after a few months. Nothing has changed, well I guess things are worse. He won't talk to me and being shut out for way too long now I am wondering what I can do. He seems to want out of our realationship despite what I do or say. He says he wants to work on this but does nothing different. We have no "physical" side at all which isn't the main issue. All I need is some reassurance that he still is "in" this relationship. So despite what I do, nothing changes. I am at a loss as to what he needs.He seems in constant pain, and no matter what I say or do he says I don't understand. I try.Any suggestions re: what the forum people have suggested, are met with disapproval. To say the least I am about ready to give up. I am now diagnosed with high blood pressure which is generic in my family but also believe that our situation is not helping. I have told him but he is not interested in my health issues as they are not as important as his. So I am getting pretty stressed which I can't handle with my health much more. What can I do????

 

[wild_one353]

try not to pity him, let him know you want to help, but dont smother the guy, guys dont like to feel like babys or children, we like to retain power over our lives. crohns can take all that away, we can feel powerless over it. and also, sexual function can be reduced for a long time, but it comes back when things level out a bit and are under control. the more you learn about what may really help the guy, as snuggling/cuddling wont change much, the more he will feel like he can control his life again.

having said that, consider buying a copy of the SCD diet/Breaking the vicious cycle and get him some drugs from a doctor.

i have managed my disease with diet for almost 4 years now, i have averaged 1 bowel movement a day for all that time, no bowel obstructions, no surgery and very little else for complications. i hate giving advice because so little people try it, but i will tell what i am doing/did to get here and how he might get there too. im still working on my regimen as it is not perfect.

-similar to the Specific carbohydrate diet, reduce your intake of lactose(milk sugar) and sucrose(table sugar and in fruits) as much as possible, mozzeralla cheese is very low in lactose and plain yogurt with no added sugar is also a good choice, i get half my calcium requirements from cheese, and i take a calcium supplment for the rest.

- no soda or sweets of any kind.

- eat only select starches. I eat plain instant oatmeal no sugar added with cinnamon and salt, wheat tortillas or noodles made from scratch with only salt and water added, and refried beans as my main source of carbs.
no potatoes, very little corn very little brown rice, absolutly no white rice or barley.

-i also eat a whole bag of frozen veggies a day broccoli and cauliflower.

-i limit my intake of fruit to maybe once a week because it contains sucrose.

-i eat 1/2 can green olives as a fat source, and also, 1/2 tables spoons canola oil and 1/2 tablespoon corn oil, and a few walnuts, all other nuts are hard to digest for me except maybe pecans and peanut butter, so i get my fat from these vegetable oils. do not eat soybean oil, its very low in antioxidants.

-since crohn's effect the ileum its most important to take a magnesium supplement(magnesium citrate, 25%daily value x2 doses a day) as well as b12 supplement cyanocobalamin may be fine about 500mcg, but i take a more complicated regimine of preformed verisions of b12, but cyanocobalamin is simpler.

there are more details and i will only give then too you if you are truly interested in more, this diet is just buying me time, its not something you can do forever and im almost done finding every alternative that exists, i believe in the next 6-8 months as i test all the things i need to test, im hoping my strategy will rival anything modern medicine has to offer. but if i do not succeed, i will then start taking medications, i have only taken medication for perhaps 1 month out of these past 3 years and 8 months since being diagnosed.

good luck.

 

[Jennifer]

What about what you're going through Stephenie? I know you're very focused on him and trying to get him to open up and for things to work with the both of you but its been a long time and its wearing you down.

Would you consider counseling for yourself to help you through this hard time? They should be able to help you learn to relax which should also help with your blood pressure.

Are you starting on any meds for your high blood pressure? It can be a silent killer so please take care of yourself. Be sure to get a blood pressure monitor for you to use at home to help keep track of you BP so you can get the best treatment possible from your doctor. Don't forget to take care of yourself too.

Who knows, maybe your husband will take his health more seriously if he sees you taking yours seriously.

 

[Stephenie]

Well this will probably be my last post. First I want to thank everyone who replied to my posts, the help and information. Unfortunately my boyfriend told me today he is moving out. Already has a place, never discussed this with me just informed me today. I know a few times he said he was thinking of leaving since he is so unhappy, but I never thought he would. Needless to say I am heart broken and told him so but he says it does not matter, it is done and he is leaving. With the holidays coming up, well not a good time for this to occur. So now all I can do now is wish him well and hope he finds what he needs to make him happy.

 

[LisaL]

Oh Stephanie, I was just reading this thread and I am sorry to hear that it has come to this. Your boyfriend sound like his is quite depressed, and some counseling would have been a good idea. I am sorry that he was not willing to do as you suggested, and sorry that ALL of your efforts to be there for him were somehow not enough for him.

I know it sounds cliche, but you now need to take care of yourself. You sound like a very warm and caring person who deserves to be in a mutual relationship. Take care of your feelings as well as your physical health. You can always come back here for support.
-Lisa