Crohn's Disease Support Group

Where to begin?..my husband of 3 years was just diagnosed with crohns and its proven to be a life changing event..Hes currently being medically discharged from the navy because of it..something that is very depressing for him since he had always wanted to serve his country for 20 years and retire with the navy. but as challenging as this is for him, and i feel horrible saying it, but its proving to be just as challenging for me. I feel so stressed i just dont know what to do anymore..we have a 2yr old and i'm 5 months pregnant..I just really need him to help me out a lot right now and he can't because of what hes going through..i just wish i could be the supportive wife he needs me to be but i can't help but get upset when he gets sick..i know again.horrible..but its just so much for me..working, cleaning, raising our son..alone. And now I have the stress of our financial future to worry about..if hes constantly sick how is he going to hold down a job? not to mention our sex life is basically non exsistant these days..its just effecting everything..and I can't help but feel resentment towards him these days when i get super stressed because i'm doing everything alone..i know hes sick and I know he would give anything to not be and I love him so much but i just dont know what to do to stop all these feelings..i'm so confused stressed and unhappy..and i feel guilty for having these feelings..i mean what kind of wife gets mad when her loving husband gets sick..

I am going to answer from the male with crohn's point of view. I am empathetic to your plight, especially to your husband(please send a thank you for serving in our nation's defense). First, be patient with him. I know you are facing a lot with a small child and one on the way, but focus on the here and now, because you are putting a lot of, though justified pressure, on yourself, when you do not need to.

Second, your husband needs to go see a GI at his local VA to monitor his condition. Are there any financial or transitional counseling programs at the VA for your husband? That would assist you and your husband in getting through the emotional grief.

Third, do you have any close family members, friends or neighbors that help you with taking care of your child while you take care of yourself and your hubby? There is nothing wrong with it and it will not hurt your pride.

Granted I am speaking from being single, but i saw the emotional stress my parents had and my work as a counseling those with crohn's and colitis for CCFA(which has resources and family support groups.

Last and as important, you are among the biggest experts of having crohn's--count on us to give invaluable advice and support.

All the best! Please keep us posted.

NeShama covered it all beautifully. You and your husband are in our thoughts and please know that each of us here are always willing to listen and lend an ear anytime.

I appreciate your responses and any advice you can give me..Hes actually not even 100% out of the Navy yet..we are waiting for his discharge orders as we speak. He was given a horrible( in my opinion) disability rating of 20% so we are going to be given a severance pay and have a nice life from the military...We are hoping to be relocating in about a month to my hometown to be closer to my family so they can offer their support and help with our growing family until my husband is more stable. But at this moment we have no one..no family lives near us..we are in San Diego, CA and my family is all in Wisconsin and his is in upstate New York..and i'm suffering from a bit of depression and therefore have found myself without many friends..at least not friends that i feel are close enough to really ask them for such help..and well to make matters worse my husband went to the ER two nights ago with stomach pain and was then checked into Internal medicine surgery ward...they are doing a CT scan today to try to determine if surgery is needed..now on top of my ushual stresses lately..i'm not sure how we are going to make this move across country when i'll be 6 months pregnant and he will be recovering and i'll have my 2yr old running around being a 2 yr old...although i can say i'm optomistic about him having surgery..i've heard most ppl feel great for years afterwards..although i know there is no garauntee the thought of having him back to his old self and having my partner back is so tempting..We've discussed going to a support group or even a counselor to try to help me be more supportive and help him understand that even tho he is the one suffering with the illness it still effects the family too..I just really need things to start looking up because so far I feel like as time goes on things keep being added to the stress load..

Navywife86:

I can sympathize with you on your situation. I would recommend that you find a hobby or relaxation technique that you can enjoy for just a few minutes, maybe while child #1 is napping or down for the night. Please do something to reduce your stress level!! As a mother of three (even though only one is still in school), I can understand how demanding all of your "jobs" (paid and unpaid) can be.

My husband of over 20 years was recently (March '12) diagnosed with fistulizing Crohn's. This diagnosis explains a lot of his illnesses over this time frame. He is also in the military, just not a full-timer. He has received his separation papers for medical reasons that might not be related to Crohn's. They don't even know of this diagnosis yet. It is very frustrating! We are so glad he wasn't diagnosed 20 years ago or he wouldn't have been able to serve his country for over 23 years. He was hospitalized in January due to a flare and since then it seems as though it has been constant traveling for doctors appointments. He just recently started his medication regime. He is not exactly good at taking medicine, so I feel as though it falls on me to remind him of which meds he needs at what point of the day. He has even set alarms on his cell phone to remind him to take his meds. Thank God he is only on 3 medicines at the current time. Waiting to see when they start him on Remicade infusions.

So far he is still able to work his civilian job, which is good. However, like in your marriage, the intimacy has greatly diminished to almost non-existent. I can usually tell just by looking at him whether he is having a good day or a rough day. I understand now when he is tired and just plain old not feeling good, I didn't even just last year. I never understood why he would run fevers one evening and be fine throughout the next day and turn around and run a fever again that night. Now I do! I try to be patient and caring. After all, I did marry him in sickness and in health! I would just like to have a little confirmation of love from him periodically. Give me a hug, a kiss, or even just hold my hand. I still want to feel loved! I know there are going to be days when he isn't going to feel the best and just wants to be left alone, but I sure hope he doesn't just shut me out of his world on those days. I have felt like that on several occasions in the last couple of months. One of these days he is going to tell me how sick and tired he is of me asking how he feels. I just want to help him feel as good as I possibly can! I have felt so stressed lately that I took a day "off" and went fishing with my parents. Just being out on the farm in the fresh open space felt relaxing.

Just remember there are other people out there that are going through similar things and we can all lean on each other for the moral support we all need.

He may get more from the VA. You can also appeal the medical discharge rating. They have attorneys and/or resources for that. Go down fighting. I cannot think of it now, but there is a certain medical retirement percentage you need to have to have all the benefits of military retired personnel that will include base privliges and tricare. Find out what that is and fight hard for it. Also fight hard with the VA. I'm 90% VA disabled and it was worth the fight to get that percentage.

I'm not married to the man that I love yet, but I can completly understand why you would be frustrated. I feel selfish to say it, but I feel like my life is on hold while this disease takes over his attitude. And don't even get me started with how upset he gets at the smallest things while on steriods for the inflamation. Best thing to remember I think for me to remember is that I need to do things that bring me peace. With him being one of the most peaceful parts of my life, it's very hard...but I try to go out with my friends, handle my family, and just stay calm. I don't have a kid and a half to run afte, but I do rely heavily on my man's help and assistance through the week. Plus, I smiply enjoy his company. But he's so frustrated right now, and I have no idea how to help him or myself. I am however, grateful to have found this site. At least I don't feel alone anymore. And I don't feel as selfish hoping on here.

My husband has MS and gets a 100% disability from it, I recommend talking to a service representative and getting them involved in getting that rating up. With verification from the Doctors at the VA there is no reason for that rating to be so low. Though I know now the VA is overwelmed with people getting out and filing for disability. My Daughter has Crohns and I know the pain and hardship it has made in her life. I have to say I found that people in pain have a hard time seeing past their pain to the other people in their lives. My husband won't comlain litterally this morning I was dressing him and loading in the car to visit the er as he is telling me he didn't want to go and I don't know how sick he is (I could see it all over him) but I laughed at the oxymoron... The doctors where concerned when he didn't want to stay because they said it was just ANOTHER UTI and they want to put him on IV antibiotics, explaining how close he could be to going septic and dieing... all because his white blood cell count is so high? How do you know that except you go to the hospital. Anyway though he is capable of taking care of his self and very independant and I feel like a loose wheel because my job is to take care of man who really is able and capable of taking care of hisself, even while doing that I am indespensible to him. I guess what I am saying is I don't know how we would do it with small children, even at his best he needs me to pay attention to what he is not saying and to encourage him to take care of himself and that is not even accounting for the "embarrassing" medical issues that insult his Machismo at any moment and hopefully only embarrass him in front of me and not in front of family, strangers and friends. My daughter is trying to find "the one" for her but really between the reactions from the drugs the trips to drs ers and urgent care, the fact that she doesn't look sick, Dr's think she is a hypocondriact let alone non medical professionals, I guess what I am trying to say is hang in there. Taking care of my husband is a full time job, adding children onto that will take super hero strength and adding the financial burden makes it almost impossible. Rely on family and friends and extended family and friends... take time for you, monthly massages time out with friends... They say God never gives you more that you can handle so we will pray for you, strength, peace and wisdom. And definately get that disability rating up

I have Crohn. I'm not married but I would think that your husband is going through a trying time and he needs your support. You have to be patient just as you are with your small child. Crohns is a scary disease. No one likes to talk about it. I was feeling find one day and the next day I wasn't. It's amazing that a stomach pain can cause your entire body to shut down. I have three children and I basically missed out on three years of their life laying on the couch wishing to die. My children found comfort in talking to a counselor about their feeling regarding me being ill. After three drugs, being doped up from pain pills I finally found a medicine that gave me my life back. Please research for yourself remicade.

Navy Wife, your situation stinks. However, just as your life was different a year ago it will be different a year from now, and it sounds like you will get the support you need after you move, stay tough, don't be ashamed to ask for help from people around you or hire a baby sitter, losing your sanity is more costly than shelling out a few bucks to buy some help when you need it. Your husband is still your husband, he'll be back to himself when his health is under control. Its ok to be angry bc everything stinks right now but try not to resent him bc its not his fault.