Marriage and Crohns

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staci100
Regular Member


Date Joined Mar 2006
Total Posts : 111
   Posted 8/24/2010 4:05 PM (GMT -7)   
My husband is having MUCH trouble understanding why I don't want to continue to go out with all of our friends. I am sick and have lost about 17 pounds in the last month. I have aches and pains that can't even be explained. I still "look good" or atleast that's the going comment from everyone. And, I am sure that is why he thinks I should just keep going out. This is the second time in the last 5 years that I have been really sick. He was awful the last time too. I was pretty sick for about 3.5 months and I think he decided to be nice after about month 2. When I go to the bathroom it is pure water. I am trying some different things before I go back to my GI and he will prescribe some awful poisonous medicine. I can't seem to get any comfort, sympathy, empathy or just kindness from him. Everything is a fight because we are constantly being invited places that I don't feel like going. Not to mention the ordeal with going to the bathroom at the spur of the moment! I mean seriously, how can someone who lives with me 7 days a week not realize that I am sick! We have been together for more than 16 years so it isn't like he just figured out I was sick. I am on here ranting but any advice would be helpful right now.
36 y/o Female
Diagnosed with CD 1993

Currently taking Asacol, B-12, Folic Acid, Probiotic, Fish Oil, LDN

Past meds: Humira, Immuran, Robinul, Flagyl, Cipro, Prednisone, Bentyl,

mlatida
Regular Member


Date Joined Aug 2010
Total Posts : 129
   Posted 8/24/2010 6:25 PM (GMT -7)   
I understand how you feel. I'm on week 6 on my Crohn's flare, and I haven't been feeling better. I'm going on Humira ASAP to try to get me into remission again. My boyfriend is frustrated because I can't go out, eat the same things he does, can't do much around the house, etc. He thinks I should be better by now. I explained it to him that Crohn's isn't like getting over the flu where every day you get progressively better. Crohn's is more like allergies that can fluctuate without warning. After my recent colonoscopy, I requested a print out of the photos. It looks like a bomb went off inside me. My boyfriend talked with the doctor and saw the pictures, and I think that made him finally realize that this is serious and that it is worth the sacrifices to get me healthy again. I don't know if any of this helps, but I understand what you mean. Does he know how you feel or do you hide it from him? Maybe he should come to a doctors appointment with you and have a chance to ask the doctor about your symptoms and hear for himself that you need rest and understanding.
26 years old. Diagnosed with Crohn's disease March 2008. Battled a C. diff infection from Summer 2009-Spring 2010. Have been dealing with a severe flare for the past several weeks.

kazbern
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Date Joined May 2010
Total Posts : 8375
   Posted 8/24/2010 7:15 PM (GMT -7)   
Staci, it totally sucks to feel so sick and I'm sorry that your DH is not understanding. But please don't wait to go to the GI. You're not going to get better w/o meds, sorry.

I'm not one to complain much and mostly it's my DH telling me to slow down and to call my GI. We all have our challenges, LOL!
*******************
48 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (6g/day), Sulfazine (1.5 g/day), Prevacid, vit. D (20K iu), flax seed oil (2 tsp/day), mesalamine enema as needed.

mlatida
Regular Member


Date Joined Aug 2010
Total Posts : 129
   Posted 8/25/2010 6:55 AM (GMT -7)   
I agree with Kazbern that if you are having bad symptoms, go to the doctor. I ended up having a C. diff infection when I was dealing with explosive diarrhea. The longer you wait, the longer you will be sick and the greater the risk of damaging your colon. I give myself a week of bad symptoms before I will go to the doctor if they don't improve throughout the week.

I cannot stop thinking about how not understanding your husband has been. I have a very similar situation with my serious boyfriend. We've known each other as friends for 6 years and finally got together just before I was diagnosed with Crohn's. I always feel super guilty for having to take time for myself and my health. I'm jealous when I can't go out, and I tell him to just go out without me. I do see your husband's side of the story because you aren't doing what you need to in order to get well. Don't sabotage your relationship by staying sick. I do understand that Crohn's flare do take time to resolve and heal, and I have a hard time dealing with the time it takes to heal, let alone my boyfriend understanding that as well.

I think you two need to use this opportunity to have a challenge in the relationship- It will either make your relationship and communication stronger, or it will be lost. I hope it goes well, but I think you two need to talk out your frustrations and get to the root of all of the problems. Maybe he isn't upset that you can't go out, but that you don't let him know until the last minute.
26 years old. Diagnosed with Crohn's disease March 2008. Battled a C. diff infection from Summer 2009-Spring 2010. Have been dealing with a severe flare for the past several weeks.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/25/2010 7:03 AM (GMT -7)   
I have to say that I too agree with Kazbern. This is a chronic and incurable bowel disease and must be treated at all times. I am sorry you husband is not being supportive, but maybe he thinks things aren't as bad because you aren't going to the doctor. I would make an appt asap, and TAKE your husband with you. Maybe the doc can help him to understand what living with Crohns is like. Sending healing prayers your way. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 8/25/2010 7:22 AM (GMT -7)   
You need to go to the doctor and you must stay with your maintenance medicines. As far as your husband it could well be that he is in denial. My wife has been great over the years but even so she doesn't understand, for example, why I can't go on a road trip to chicago with her next month. Nothing like being in heavy city traffic and getting that little bathroom twinge. Even if that twinge doesn't progress to an OMG moment the stress of wondering if that PAIN is coming and nowhere to go "potty" is STRESSFUL. This misunderstanding by those whom we love and love us is one of the things we must deal with I suppose. Your husband could be unable to deal with you being ill. It may make him so sad that he doesn't acknowledge it and makes trouble with you .......
Go to the Doctor please and stick with your meds........

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 8/25/2010 1:10 PM (GMT -7)   
staci, I hear ya. Men can be pretty nonunderstanding sometimes, but I think it's partly because they are proned to want to "fix" it. He could partly be in denial that his wife is a little "broken" right now.

Try to get through it, be as nice to him as possible, but do what you need to do to feel better.

BTW, are you still on LDN? How do you find the side effects?

mj7575
New Member


Date Joined Mar 2008
Total Posts : 6
   Posted 8/25/2010 6:11 PM (GMT -7)   
I definitely feel your pain! My boyfriend can be quite stoic when I express what I am going through and it can be very frustrating. I am very open with him when it comes to letting him know what medications I'm on at the time, when I'm sick or feeling worse than other days etc...but sometimes it just feels like he just wants me to get better magically. It may not be that he is uncaring or not understanding as much as he wants you to be ok so badly and can't fix you as others have said. If it isn't that, then it's really unfortunate that he isn't being supportive of you and what your going through. I truly believe no one understands the pain and frustration that comes along with IBD unless you experience it for yourself. Keep your head up and be as open as you can, letting him know exactly what you're going through. Good luck!

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 8/25/2010 7:38 PM (GMT -7)   
Sometimes I think loved ones can also be in a state of denial and don't want to recognize they have to deal with this too. It is so hard for healthy people to understand what we go through. Heck, sometimes the doctors don't understand! But, I hope by having your husband go to the doctor with you will help. They really need a support group for families too. If you have a spouse who is selfish and self centered, it won't be a picnic. Hopefully, he will come around soon.
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, high BP, fibromyalgia, Mixed Connective Tissue Disease
claritin, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, omeprazole for reflux.
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA.
Currently on flagyl and it is helping. Have apt with surgeon soon

staci100
Regular Member


Date Joined Mar 2006
Total Posts : 111
   Posted 8/26/2010 5:18 PM (GMT -7)   
Okay, first yes I tell him everything and I hide nothing. The dr. has talked with him in the past so he should remember that. Next, I AM taking meds to better myself but I have to give the diflucan time to get the yeast out of my system so that the LDN can have a chance to work. I am also taking asacol as well. I also never let him know something last minute. I let him know days in advance sometimes so I'm not real sure where someone got that. I am trying to get better but maybe not the way some people think I should. I refuse to just lay down and do whatever the next GI tells me to do. I do not believe in biologics and I am trying everything before I have to go back on them! I cannot get a shingles vaccine b/c I have been on immunosuppressants in the past. Humira is known too cause shingles. So.....wouldn't it have been nice if someone would have told me to get the shingles vaccine before I ever took the very first immunosuppressant! But, no I "trusted" the doctors and look where that got me. And, I have been to a dr. just not the GI. I do have 2 dr's overseeing me right now. Not sure where you all are getting that I am not trying to be well. I have had this disease for over 17 years so I know how it works.

Thank you Nanners for the prayers.....very much appreciated!

Roni, yes I am still on the LDN and I have no problems with side effects. Either people on here don't see LDN as a medication suitable for Crohn's or they didn't see it on my signature. I am about 2 weeks away from being done with the difulcan and I thought just for a day or two that things were starting to turn around but last night it went back to the same old same old.

I appreciate the support.
36 y/o Female
Diagnosed with CD 1993

Currently taking Asacol, B-12, Folic Acid, Probiotic, Fish Oil, LDN

Past meds: Humira, Immuran, Robinul, Flagyl, Cipro, Prednisone, Bentyl,

FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 8/26/2010 5:33 PM (GMT -7)   
Here is why people thought you were off your meds  "I am trying some different things before I go back to my GI and he will prescribe some awful poisonous medicine."

staci100
Regular Member


Date Joined Mar 2006
Total Posts : 111
   Posted 8/26/2010 6:26 PM (GMT -7)   
Yes, but on my signature my current meds are listed. I thought people looked at those. The different things that I was referring to was the LDN and HBOT. I assumed that CD patients knew that most GI's do not prescribe LDN. That is why I am seeing a different doctor (so that I can get the LDN) and try it out before I go back to a drug that no one can predict what it may cause in the future. This thread was about getting a spouse to understand sickness and what CD does to our bodies not whether or not to see certain doctor and take certain meds. I didn't realize that wasn't clear. I am sorry.
36 y/o Female
Diagnosed with CD 1993

Currently taking Asacol, B-12, Folic Acid, Probiotic, Fish Oil, LDN

Past meds: Humira, Immuran, Robinul, Flagyl, Cipro, Prednisone, Bentyl,

blueberrydecaf
Regular Member


Date Joined Jan 2010
Total Posts : 257
   Posted 8/26/2010 9:16 PM (GMT -7)   
Staci,
It is so hard to sort out all the relationship stuff when it comes to illness and disability. I know because I have been on both ends - my partner has a physical disability and uses a power chair and I am the one usually caring for him, and it is usually his body that causes "interruptions" in plans - right now it is my body. It is weird to be on both sides of it. I know when I am well (which is more often than him) and our plans get cancelled because his disability is preventing it, it is hard for me no matter how understanding I try to be. I love him, and I try my upmost to be supportive, but I also had to realize that every time something happened for him that disrupted both our lives it felt like I had part of his disability too - I had to go through a process of grieving what I felt I was missing because of it, allow myself to feel frustrated, and have an "evolution of dreams". I used to get mad and frustrated when it would happen, but had to learn to accept it (just like he had to learn to accept his disability, and now I am learning to accept my crohn's). I don't know if that helps in the least - we all have such individual paths. I guess what I am trying to say is that I understand your side (a partner's support is so, so important) and also your partner's experience (my guess is that he might be grieving a bit what he feels he is losing - i.e. going out with you - and it is coming out in an unsupportive way). Just a guess, I could be wrong. It might help for both of you to talk about how Crohn's affects both of your lives - because it is not your fault, and it is not his fault, it is this outside blindsiding unpredictable force of Crohn's that just happens and takes some pieces from all of us.
In the meantime, hugs, and best wishes on your path to hopefully a long remission!!
Blueberry.

FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 8/26/2010 9:21 PM (GMT -7)   
Don't be sorry. It's very easy to misunderstand things on the net. I for one don't always read signatures and things carefully as I am doing too many things at once. In fact I got the idea you were off your meds from other posters on the thread. In any event I hope some of the pertinent advice is helpful. Sure hope the LDN helps. I was considering it too for a while.

tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 8/26/2010 11:12 PM (GMT -7)   
Sometimes in our own pain and sickness we forget that we are not the only ones living a Crohn's lifestyle. Sure we are ones that are sick all the time and have the physical pain but our loved ones suffer too. We can not expect them to always be completely understanding when we can't do the things we used to and are not willing to try new things out of fear of how our disease may react. All of us in relationships have felt and gone through what you are going through to a degree and it is frustrating but it is also frustrating for our spouses. Because they are not sick they still want to do the fun activities and since you have had a remission with only 2 major flares in the past 5 years, you can't expect him to just know how to react and be patient all the time. If you had been flaring this whole time he would probably be more used to it and adjusted to going by himself or not going. As it goes, he is still adjusting and must love you because he is still around. Don't jump to the conclusion that he does not care but more that he may be going through the process of accepting your disease.
It takes a long time for loved ones to fully comprehend this disease. I pray that you are able to end this flare as quickly as your last one and have another 5 year remission but if not your husband will learn to accept and adjust to your situation. You sound like you have a really great and open line of communication with him, so tell him how you are feeling. Let him know that you would do anything to be able to go out but that you are in a lot of pain. On another note, push yourself to go out once in a while for him and also for YOU. Every single day I wake up and get ready for the day. I go outside and try to do something even if I am sick. If I get out there and I am still too sick then I go back in a lay down. If I do this I atleast know that I gave it a good shot and did not lay victim to my physical pain and sickness. Many times I find that once I am out of the house or out of bed I start feeling a little better and do get something accomplished. I challenge you to do the same thing with your husband. Drive separately from your friend to your activity. Then if you get sick you and your husband can leave without causing the whole group to be affected. Your husband will see that you are giving a great effort and will make him give a better effort into understanding why you are not able to go out all the time like you used to.

Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 8/27/2010 6:29 AM (GMT -7)   
Wait till hubby has a case of the runs or some touch of food poisoning and then ask him to go out with you. If he says no, say oh come on, you want me to go out when I feel like that. sooooooo, whats your take on it now ????
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/27/2010 7:22 AM (GMT -7)   
I think Sniper has a really good idea. I kinda did that with my husband when he had the stomach flu really bad. I said to him, imagine feeling like that some part of every single day, thats how I feel. It did help him to understand more. Hope you can get this worked out. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

staci100
Regular Member


Date Joined Mar 2006
Total Posts : 111
   Posted 8/27/2010 3:36 PM (GMT -7)   
Blueberrydecaf, you really helped me alot! I'm sure it is hard being on both sides but gives you an inside view of both!

Funguy, just a misunderstanding. I hope the LDN kicks in rather quickly too!

tsitodawg, thanks for the words of wisdom and prayers!!

And Sniper, actually he did have a case of the runs a week or two ago and had to go several times in the night and I did ask him if he was alright (after I prayed about it) and then he went several times the next morning. I did think maybe it was Karma but I didn't tell him that. But I like your idea!
36 y/o Female
Diagnosed with CD 1993

Currently taking Asacol, B-12, Folic Acid, Probiotic, Fish Oil, LDN

Past meds: Humira, Immuran, Robinul, Flagyl, Cipro, Prednisone, Bentyl,

FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 8/27/2010 4:32 PM (GMT -7)   
Ditto on Sniper. Happened to my mother. She is on medicine now that gives her the D on the run. She says she never really understood until she started taking that medicine.

Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 8/28/2010 5:19 AM (GMT -7)   
I try my best to be a good husband, not an A-hole in a man suit. I think a woman needs a man that is kind and thoughtful, one that is handy around the house , one that can cook and clean when needed, one that is good in the bedroom and most of all, a woman needs to make sure that they never meet each other.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 8/28/2010 11:31 AM (GMT -7)   
There are quite a few people here who are on or tried LDN. I've talked about it with a crohn's research doctor but he said he wasn't sure if it would be good for me because I also have other health problems. I had a mild cardiomyopathy while pregnant (Thank God it got better!), but I still have tachycardia.
I wonder if LDN is okay for heart issues?

Gary The Pilot
New Member


Date Joined Oct 2009
Total Posts : 14
   Posted 8/29/2010 11:08 AM (GMT -7)   
My wife left me after 10 years. Before Crohns, I was an athletic hockey player (I would have been playing in at least the AHL if things went better for me), good looking, made a good income, etc.. I used to work my ass off and provide for my kid better than any other dad out there. Currently, People look at me and figure I'm fine (They usually don't see me when I'm down and out). I lost my wife, job, house is in foreclosure. Friends and family think I'm fibbing or dont care? I want and need my old life back. It's a vicious uncontrollable disease. I often think I'd rather have the diagnosis of cancer. Then maybe people would be empathetic and just let me die. It's sad to say so, but Crohn's is horrible.

My advice... if he cares, have in chime in and read some of our responses.

I say to the Mr.: She's not crazy. Crohns is horrible. One goes from just fine to bad in no time at all. It sucks the life right out of you. Be there for her. She needs somebody to at the very minimum to be empathetic. I understand you want her to be with you when you go out. That's awesome. When she's sick, stick by her. Rent a movie and stay home. Just some initial thoughts. Crohns is a *****.

staci100
Regular Member


Date Joined Mar 2006
Total Posts : 111
   Posted 8/30/2010 12:19 PM (GMT -7)   

Garythepilot,

Thank you!  I hate all that you have had to go thru as well!  The life is definitely sucked right out of me at this time!!!  Think my husband needs to read your comment!!!


36 y/o Female
Diagnosed with CD 1993

Currently taking Asacol, B-12, Folic Acid, Probiotic, Fish Oil, LDN

Past meds: Humira, Immuran, Robinul, Flagyl, Cipro, Prednisone, Bentyl,

staci100
Regular Member


Date Joined Mar 2006
Total Posts : 111
   Posted 8/30/2010 12:23 PM (GMT -7)   
Roni,

forgot to give you a reply....I have accepted today that the LDN is not going to work for me. I made my appt with my GI and I dread it! I really had faith that LDN was going to be perfect for me. I somehow assumed that was what God had planned for me. WRONG assumption........probably should not make assumptions about God's plan. Hahha.
36 y/o Female
Diagnosed with CD 1993

Currently taking Asacol, B-12, Folic Acid, Probiotic, Fish Oil, LDN

Past meds: Humira, Immuran, Robinul, Flagyl, Cipro, Prednisone, Bentyl,

joy47
Regular Member


Date Joined Feb 2010
Total Posts : 75
   Posted 9/1/2010 8:24 AM (GMT -7)   
Hi Staci100, Sorry to hear about your problems with crohns. I know to well what your going thru. I've had it for 32 years. All you can do with your husband is talk to him or go to a counselor together. You can't let the stress get to you it only makes crohn's worse. He married you for sickness and in health its time he walks the walk. He already talked the talk. If it was reversed I'm sure you would be there for him, without a thought. I'm not saying it should be easy for him but if he is your friend and lover he should do what ever he can to make things a little easier for you. He needs to know he can be mad at the disease, but not you. I wish you the best life can bring to you good luck.
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