Spouse is withdrawing

soccamom
0 Recommendations

Has anyone had personal issues dealing with gastroparesis. This is going to sound terrible but I've had GP for 2 years now and my husband has totally withdrawn from me. At times he is angry. For instance, last night he came home from work and I hadn't vacuumed the house yet. I did however put everything away from our camping trip, did the laundry... but he was cold. I teach part-time so I'm off for the summer and I think he expects me to have the house spotless but I just don't always have the energy especially on the days I'm really feeling sick. I take Domperidone but as you all know it doesn't always help. I feel like such a failure and I don't understand how he can be so cold. Is anyone else dealing with these types of issues. I think he wants me to be the type A person I used to be but I just can't be that person right now. I feel so alone.

21 replies

Daisy25
  • By Daisy25
  • Posted July 8, 2008 at 6:57 pm

My husband isn't cold, he has been to the doctor's with me and has heard the doctor talk. However, I don't think that my two sons or some of my family believe that there is anything wrong with me. I feel that way with some other people I know, too. The first time I had symptoms of GP was after I had a colonoscopy. I never had a problem in my life, but a couple of days after the procedure, I was so sick I couldn't stand it. It lasted for about two months and went away. A year went by and I was fine until last summer when I got a stomach bug from my niece and the GP started again. I haven't felt good since. I have had all kinds of tests, the latest was another endoscopy dilating my piloric muscle and injecting Botox into it, which did not work at all. My friends keep saying that I should get a second opinion. I keep telling them that I know what the problem is, we just can't solve it. It is very debiliating to be sick to your stomach 24/7 and it takes a lot of energy out of you. I take Domperidone, too, and I don't think it works that well either. Remember, you're not alone. It's nice to meet other people who feel the same way and who understand what we go through.

soccamom
  • By soccamom
  • Posted July 8, 2008 at 7:20 pm

Thank you for your reply. It makes me feel a little better to know that you have gone through similar behavior from other people. My doctor believes I developed GP from a virus. I was sick with some kind of stomach virus 2 years ago. I got sick and then got the same virus back about 2 weeks after the first bout. I work in a school so there are all kinds of bugs going around. My first gastro doctor was terrible. He did a colonoscopy and an endoscope. By that night I was a lot worse and ended up in the hospital. My current doctor thinks he may have ruptured something. That first doctor then sent me to have my gallbladder removed which I did and it didn't help me at all. After that I moved onto my current doctor and he is fantastic. Thank goodness. Again, I really appreciate your writing and you have helped me feel much better!

Daisy25
  • By Daisy25
  • Posted July 8, 2008 at 9:03 pm

I went to the doctor's office yesterday and he wants to do a test to see if I have developed acid reflux. He said that because there is so much acid churning in my stomach he thinks I might be getting acid reflux because I keep waking up sick during the night. It's called an esophageal ph monitor. They put a tube down your nose through to your stomach. The tube has a monitor attached to it and you leave it in for 24 hours. They send you home with the tube hanging out of your nose and you go back the next day to have it removed. Did you ever have that test? Sounds kind of scary to me.

princessfaith82

Hi Soccamom,

I am so sorry about what you are feeling and going through with your husband. I too am married and feel like this illness has been extremely difficult on us and our marriage. Don't get me wrong my husband is great and very supportive, however, I can't help but feel that if it was not for me that he would have a much better more fun life. I had to have a total colectomy done right around our first wedding anniversary and we spent it in the hospital together. Since then he has been with me through all of the ups and downs. I know that he feels out of control with this illness and with our lives just as I do. There are so many things that we planned for and wanted to do. We did not even get to take a honeymoon due to my illness--the doctor advised against it. Now we are about halfway into our second year of marriage and things still don't seem much brighter. He truly does appreciate the things that I do, and admittedly even though I am sick, I am still type A. It seems more often than not he is irritated at what I do when I push myself and overexert myself that what I don't do. I just feel like such a failure as a wife since I am sick and don't work and since we often have to forgo doing fun exciting things that most newlyweds do, that I push myself to have our home perfect so he does not have to lift a finger when he gets home. He has been so supportive and giving that I feel guilty when I am cranky from being sick. When I had my ostomy still before it was reversed he even helped me change the bags and empty it when I couldn't do it myself. He learned everything he could about TPN and helps me hook up, but best of all he just holds me when I need to cry and rant and rave. I don't know what I can ever do to feel equal or on par with him after all he has done for me and with how selflessly he takes care of me. I feel like I owe him everything and I have so little to give besides love. I truly feel like a waste of flesh.

soccamom
  • By soccamom
  • Posted July 8, 2008 at 10:47 pm

No, I have never had that test. It sounds kind of barbaric. I hope it goes well and the doctor is able to help you.

soccamom
  • By soccamom
  • Posted July 8, 2008 at 10:57 pm

You are definitely not a waste of flesh! I am so sorry you're going through this at such an early stage in your marriage. It sounds like you have found yourself a great husband though. Luckily I have a twin sister who has been a great support for me. She has gone to some of my appointments and does check up on me. I feel fortunate for that. Sometimes the best medicine is to just be held and taken care of. My GI doctor is great and he keeps trying to convince me that great strides are being made and that in about 5 years they will be able to help us a lot more.

mphotographer

Hi Soccamom-Have you tried talking to your husband about how you feel? I was just newly diagnosed with GP, but I can understand some of the feelings that you are having as it has been hard talking to my husband about how I am feeling too. I think he is scared and worried and doesn't want me to be hurting...so his way of dealing with it is to not talk about it (it does get old talking about it all the time), but...that's why this site is so helpful. Don't get me wrong-he is very supportive and will hold me when I have weak moments, but...it's still very hard for the ones that love us to watch us suffer as you all know.

We can all talk to each other, but maybe you need to talk to someone else, like a counselor? You sound really down and it might help to talk to someone neutral about how you are feeling...maybe your husband would go too? I apologize if I have gotten too personal...just want you to know I care. I think it's something we all deal with in trying to have the "same" relationships with our loved ones as we did prior to getting GP and it's difficult. I try to keep a positive attitude (especially when talking to my parents on the phone-they haven't seen how much weight I have lost), but it's not always easy. I will be seeing them the first of August for their 50th wedding anniversary party and I am hoping that I can keep my emotions in check when I know my Mom will be emotional. Take care, know that we care and please keep talking and letting us know how you are doing.

Princessfaith82-You are SO much more than a waste of flesh!! You stated the most important thing about what you have to give to your marriage-LOVE...that's what it's all about...not how clean your house is, not how "equal" things are in the relationship..it all comes down to love and communicating. I have been married 20 years and it's something you have to work at all the time (at times-he's my best friend so it's easy most of the time!).

It is more challenging for you right now, having GP and just getting started in your marriage. I am so sorry you missed your honeymoon. Can you take a trip that's close to home (and close to medical aide) that could substitute for a lost honeymoon? Maybe you can improvise? You could do little things for him too that would let him know how much you appreciate him-love notes or chocolate in his lunch box? Rent a romantic movie and light candles? Gift certificate for whatever his favorite hobby is?

Please, please hang in there. It sounds like you have an incredibly supportive husband and I am sure he is more worried about you than irritated when you overdo-my husband worries too. They just want us to feel better and sometimes it's hard for them to show it. Know I am thinking about you and remember we are all here for you-

soccamom
  • By soccamom
  • Posted July 8, 2008 at 11:47 pm

I have tried talking to my husband and he gets defensive. I think he feels that if he ignores my GP as well as me it will go away. We have been married 21 years and the way he is treating me is really hurtful. I'm doing my best with two teenagers... Thank you for your support and I will keep your advice in mind for sure. You have brought up some very good points.

princessfaith82

Thank you both so much for your support. I never knew marriage could actually be work for either of us until I got sick. I guess I should count my blessings as you said and be grateful to be married to my best friend. I do try to show him how much he means to me every day. I pack his lunches and put notes on his napkins. =P I send him sexy e-mail chats during the day. I do my best to have a hot meal for him when he gets home (even though I can't eat with him!) I also try to buy his favorite things at the grocery. Last night I made him chocolate chip cookies just because they are his favorite. I think we may take your idea for a local trip and run with it. This year for our second anniversary we did spend one night in a local 4 star hotel and pretended we were on vacation far away. (I know it sounds corny) We even ordered room service and went down to the hot tub for the evening. it was great fun! I think the key to feeling more happy and more normal may be more alone time and small getaways like that. We stay in and watch movies together all the time when I feel icky, so he is a bit sick of that! Unfortunately money is tight now since I am on TPN, so we have to be careful. The insurance company only pays 90% so we pay about $400 a month out of pocket. I think that honestly the financial stuff and his concern about my health are his two biggest worries. I will do what I can to scale back with my vacuuming and house cleaning to help put him more at ease. I believe that you are right he acts irritated out of concern. I guess I did get very lucky when I married such a super guy. I need to stop trying to be his equal and come to terms with this illness. On another note we did try counseling and it helped us immensely when I was going through the bulk of the illness. It let us express our emotions with an unbiased third party, who in turn taught u show to appropriately explain what we feel without hurting one another. I absolutely recommend it to anyone if you can find a good counselor. She was even the one who recommended getting away locally. We no longer see her, but the effects of it are long term and we still do our best to treat each other as the best friend that we are to one another. I truly hope that things improve Soccamom, and that some of what I have said it applicable to you. Be stubborn until your husband has to hear you. He will eventually. Mphotographer, thanks for making me feel better as always! =P

mphotographer

Hi Soccamom (I love your screen name by the way-I played soccer too; I was the goalie)-Wow, having 2 teenage boys at home also makes life challenging for you. I am sorry your husband gets defensive when you try to talk-that makes it really hard, especially when you have been married for 21 years. Have you tried writing him a note with the way that you feel, acknowledging that you understand his frustration/concern/defensiveness and that YOU also wish this would all go away? If nothing else, it might make you feel better-especially if you could do it in a "politically correct" way, by saying that you can understand how he must feel....and then "this is the way I feel and can we set aside a time to talk about it as it would help me". Just some thoughts. Know that I am thinking of you and sending you positive energy. The fact that you have been married so long says that you can make it work and hopefully your husband will come around and appreciate you for the wonderful being that you are (with and without GP).

Princessfaith82-You sound so much more positive today!! Did you have a good stomach day yesterday and did you sleep well? I am so glad you sound better. Those "mini vacations" even if they are just down the street to a fancy motel like you said, can be the best. We love hot tubs too! And you are really doing great with your marriage from what you stated today-love notes, cookies, etc. You are doing what he loves!! Our favorite recreation is watching movies too as you don't have to go anywhere. Netflix is wonderful too-you never have to leave the house and they ship movies very quickly-cheaper also than going to the video store.

I am so glad that you got some counseling early on. I know that $ is tight, but maybe it would help you feel better (you alone) if you went and talked to her once again about how you are feeling just to get you through this rough spot in the road. Maybe she'd be willing to talk to you on the phone too if you explain your financial situation or offer to trade for something? A lot of therapists will be willing to work with you if you just ask...or maybe will allow you to make payments.

I am so sorry that your TPN is so expensive-that doesn't help the situation. Maybe it's time to explore less expensive ways to have fun. We too are on a limited budget. We love to go for walks around the parks (lakes), play games at home, go for short drives. Maybe you both could learn to play a musical intsrument? Just some ideas.

You hang in there lady-there is light at the end of the tunnel. Know I am thinking about you!! mphotographer

Eierannach603

I am so very sorry you are experiencing marital strife on behalf of your GP.....as though it isn't difficult enough on its own. I am always concerned about my relationship: I needed major emergency surgery because of GI stuff only 3 months after I got married. And that was just the start of appointments, sick days, hospitalizations, and the obvious financial and emotional drain from all of those. Andrew, my husband, has been to almost every single drs appt I've had in the last 2 years. But despite his unconditional support, I do feel guilty because I feel like my medical issues take up a dominant part of our relationship.

I know I am repeating what others have said, but you are not a failure! The fact that you are sick and still put your first thoughts toward your family and their wellbeing is testimony to that! Both you and your husband need to understand that your illness is out of your control, and unfortunately we have been given an illness that is very poorly understood and treated. Find an activity that you both can do, even when you're not feeling well. Somebody mentioned musical instruments, which is a great idea. or learning a foreign language, or even playing board games while on the sofa. Or planning even a small vacation. The planning in addition to the vacation itself is good for bonding. I know I'm not saying anything that hasn't said before, but I just wanted to let you know I'm thinking of you!

also to whoever was wondering about the NG tube monitor....both my hubby and I have had it done. It's uncomfortable but a very good and effective test. I did not like the sensation of the tube, so i was given dilaudid and it really helped me cope.

Whisperingdays

I to am so sorry that you are feeling stress on your marriage from your husbands behavior. I know that most men get upset when they can't fix something. Which has been mentioned on here in the past.

I know for myself and my husband he has been so supportive and he was the one that did most of the leg work on educating himself on the GP and finding out about different medications etc. I to feel like all of you the guilt of being sick so much and not having the energy to do the things I use to do.

My husband has said to me a few times that I just want you to get better, I want my wife back. That tugs at my heart as I know I am a lump in a log sometimes with no energy to do much and that just isn't like me. But I try and do things and even though I can't eat I still make him dinners that he likes and try to stay as positive as I can around him. Even when I am feeling terrible I will put on that I am fine and go do things with him, because he has been so great.

I agree that you should keep trying to talk to your husband and get some answers, I don't know why so many men can't cope with things as well as women do. But he needs to understand that it isn't your fault that your body isn't functioning right. The stress that you are getting from all of this just makes your health worse and that isn't good.
So many people will take there anger on items or nip pick on the little things to vent about something that may not have nothing to do with you in the first place. It really isn't about the vaccuming but just an escape to vent.

It's not your fault! Hang in there, try and make him talk to you so you can get some peace. You are experiencing what I think we all fear. I am also here for you and will have you in my thoughts and prayers that things will work out with you and your husband.

Big hugs,

Whispper

soccamom
  • By soccamom
  • Posted July 9, 2008 at 4:07 pm

I followed your advice and I just sent my husband an email stating how I feel. I also included some of the advice you all have given me. It was written as positive as possible so hopefully he won't go into defensive mode. We'll see what happens. You are all so knowledgeable and I truly appreciate your support. I'll keep you posted. I hope you're all having good stomachs today!!!

sumli
  • By sumli
  • Posted July 9, 2008 at 4:11 pm

You story is just like mine. I can't held back my tear while reading. I felt as if someone is writing about my life. I am 32 years and married for two years. I have come to US from India after one and half years of our marriage. In the process I had given up my career as an advocate. My husband is doctor and US citizen. My husband meant the world to me and everything was new to me------ new country, new culture, new language etc. I had come here with lot of hopes and dreams. But suddenly, I had fallen ill. Our honeymoon too was cancelled. I thought it was temporary and the syntoms will go away. But it persisted. Then, we realised something was terribly wrong and went for series of tests . The doctor 's found out Gastroparesis and chemical gasritis. Now, I feel nauseated all the time and can't eat anything at all. I am constipated and can't go to the bathroom without latative. I have lost more than 35 pound and now only 74 pounds. I am all alone and in depression. Initially, my husband was dissapointed and rude but being a doctor himself, he could understand. I feel that I have nothing to offer him except tears and pain. I truely believe that he deserves much better girl than me. We had planned lot of things for our future but all came to an hault. We can't eat outside or go anywhere. At home I cook for him and try out different things but myself can't touch any of them. He feels bad seeing me eating nothing. I only can take soya milk/ ensure and boiled rice, Even with that too I feel nauseated and full. At times, in the night I feel nauseated and wake up and cry and my husband pulls me towards me and puts his arm around me. In my family no one had such problem and my parents are quite healthy (touch wood). Food has always been a center of our family gathering. They keep saying try this out, that out or eat more. At times, it makes me feel irritated. My parents could do nothing being so far away from me. They constantly keep worrying about me. I had tried with different medicines but none worked instead I was having side effects. Now, I am left with limited choice. I never thought my life would take such a toll. Can any one help me????

princessfaith82

Thank you all so much for the suppory. Today was a better this morning as I actually slept some last night. I hang my porta cath put in on Monday, so I am sure the happy drugs are not hurting my situation any! =P I guess the most important thing is that we are still with our spouses and they are still with us through all of the suffering and medical BS. It is scary, it is frusterating, but maybe in the end if we talk to our spouses it can make our marriages stronger? Mike and i had a very serious discussion last night and we both came ot the conclusion that come hell or high water that it is better to be together and be sick than to be apart in any way, shape, or form. I know now that even though this is hard on him, he realizes that I would do the same for him. I guess I finally beginning to truly understand that he loves me just as much as I love him which is pretty amazing. I just hope that with good communication we can continue to evolve through this process. I also hope that we (in this group) can continue to support one another and speak candidly of the difficulties regarding our illnesses.

Kate1
  • By Kate1
  • Posted July 10, 2008 at 7:40 am

This is truly an amazing site... I have been reading this discussion and getting all teary-eyed. We all go through so much with these disorders, yet everyone finds a way to be there for each other. I didn't write at first, as I am not married and didn't feel like I had enough to contribute; however I feel as though I can relate to a lot of the fear, the sadness, and the strain that GP and other medical problems can put on a relationship. Right now, I am in a relationship (we've been together two years, but we have a much longer history- we were friends off and on growing up and dated a little in high school and even a couple summers through college). Anyway, my boyfriend is extremely supportive, but I know it takes its toll. When we were younger, I didn't understand the extent of my medical concerns (so he never knew), but when we got together again two years ago, I tried to explain to him about my health problems (about the unknown course of Cystic Fibrosis, the impact it could have on having a family, the concern over the recurrent pancreatitis, the chronic infections, my uncertainty about continuing to work full time for very long, etc.). And this was before the GP... He listened, but I don't think he "got it" until he started to see me hospitalized and in and out of the ER and going to specialist after specialist, taking morphine for pancreatitis and then not being able to eat for a couple of months with GP, and watching not only the CF and the GP, but all the reactions I have had to medications over the past couple of years (e.g. muscle spasms and a heart arrythmia- possibly the result of medication complications). Anyway, I keep waiting to see what the last straw will be. When we were young, we went on spontaneous road trips together- once driving 36 hours on a whim to go to Mardi Gras (man, did my stomach hurt for those few days!!!). He still has his adventurous nature and he is a world traveler at heart. I am too, but I can't live up to that now. How content is he really going to be to stay in with me night after night to watch a movie and go to bed early?? He's also an athlete and it's hard for me to participate in these things with him (even attending events is often hard). We used to hike together, even in the winter. Sometimes we would hike to some remote spot and watch the sun come up over the ocean. My life is so far from that level of activity and spontaneity. He talks about getting married still, but in my heart I can't believe in it like I really want to. Will he just resent me? Does he still not understand what we could be in for? He still mentions having children from time to time. I've told him I don't think I can. My health is not great, I have to worry about possibly passing on a genetic illness, CF often comes with fertility issues, and I'm just so tired and nauseus all the time, it's hard enough to just take care of myself. I'm afraid it would be selfish and irresponsible to have children when I feel I have so little to offer (unless something drastically changes). He says he understands and it's ok, but then he talks about it so naturally at other times. I don't know if he really understands what this is all about.

I entered into this relationship after ending a tumultuous and heart-wrenching 8 year relationship. I thought at that time I had given up on the idea of marriage and sharing my life with someone. He gave me hope back, but now I am so sick, I am afraid that I will ruin the best part of my life.

Anyway, I know my situation is different and that I don't have much to offer as far as advice goes, but the more I read, the more I wanted to contribute at least a little of my own experience and struggles. I agree with everyone that communication is key, but how this happens varies so much from relationship to relationship. And sometimes it's just as important to know when to approach a sensitive topic as it is to know how to approach it (if that makes sense...).

Thanks for listening. And I hope to hear more about how everyone else is doing with these relationship issues. They really are a big part of coping with these illnesses. I hope everyone is doing (relatively) well today.

Kate

Kate1
  • By Kate1
  • Posted July 10, 2008 at 8:17 am

Sumli,
I am so glad you found this site! I hope you continue to write and tell us about your experiences. I can't tell you how helpful it has been to get support from other people struggling with similar issues. Some of us may even have helpful suggestions regarding what to try for your diet, supplements, or medications to ask your doctor about. GP and other motility problems are so complicated (and it seems as though the medical community doesn't understand them that well) and it helps to hear about first-hand experiences.

I am sorry for the strain that this illness is putting on your relationship. At least to some extent, I can understand, although being married and being so far away from your family must make it so much harder in many ways. It seems as though your husband is being supportive, even if he was frustrated at first (maybe before he understood what was going on??). I hope that this is the case. Do you have friends or other people that you can talk to here, even though your family lives out of the country? Are you doing anything to get nutrition (such as feeding tubes or TPN)? I am really concerned about how low your weight is. Do you feel like you are getting good medical care?

Sorry for all of the questions. I hope to hear more from you, and just want to be encouraging :)

Kate

Charlotte1

Dear Soccamom,

I have been married 7 yrs and very blessed with a husband that cares about me. GP and any illness as far as that goes will take the best out of a marriage. My husband is scared for me to have surgery and I am headed that way. Know yourself and what you want with your illness and then it will be easier for him to know how to help you. You will remain in my prayers.

God Bless,

Charlotte

SeussRN1
  • By SeussRN1
  • Posted July 10, 2008 at 11:54 pm

Daisy,

Here are my thoughts on ph probe studies for GERD. First of all - if you think about - you probably do have acid reflux due to the fact your gut doesn't work - so me presonally - I would just get some med - I use previcad solutab and if you dont have symtpoms then the medication works.

SeussRN1
  • By SeussRN1
  • Posted July 11, 2008 at 12:12 am

I am single and fortunate enough to have a great mom and some near and dear friends that make excellent substitute moms. I put off of dating and getting into a relationship to finish nursing school and then I was a traveling nurse for several years. Sometimes, when I am having a woo is me day - I wonder if I did the right thing. I can't even tell you the last time I went out on a date. Now I wonder how dating will work. I am hearing my little clock tick - as I always wanted to get married and have a few children - but frequently I can't even take care of myself and I dont know how those of you with kids do it on those bad days! So eventually - I want to get back to dating - but GP makes it complicated. So for now - I will just do what I do and call mom at 4am to take me to the ER and yell at the MD's who have me labeled as the frequent flier and dont treat the issue at hand.

And I have all of you. Family is great - but truly the only people who know the struggles are those who have the problem!

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