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Crohn's Disease Forum » Support Forum » Partners, Family, Friends & Caregivers » Husband is struggling and I feel so helpless


08-14-2013, 06:52 PM   #1
thunderbear1
 
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Husband is struggling and I feel so helpless

He is in a lot of pain today and his energy is low. He told me that he doesnt want to live anymore because this is not living. That he doesnt exist anyway. He said that sometimes he hates us (kid and I) because he HAS to live because of us. I try my best to be supportive and be a shoulder for him but the things he says are so hurtful. I dont know how to hel him. Hes so sad and depressed right now. He will not go see a therapist. I jist dont know how to help him anymore.
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Caregiver & wife. Husband dx in 2005 with CD. No surgeries (yet)
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08-14-2013, 07:00 PM   #2
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Did his GI proposed either AZA/6mp or biologics?
08-14-2013, 07:25 PM   #3
thunderbear1
 
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Tired, no meds at all! With the inflammation that showed in his colonoscoy, you would think at the very least mesalamine. But nothing!
08-14-2013, 07:33 PM   #4
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Who prescribed Flagyl? It usually is not a long term treatment. He has to get real treatments one way or another. If he has too much pain, then get him admitted to a hospital, this way they might take him seriously.
08-14-2013, 07:54 PM   #5
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His GP. Hes not on it anymore. We've been to the hospital and they say "abdominal pain" xoesnot meet the new criteria for pain meds.
08-14-2013, 08:26 PM   #6
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Don't go there asking a pain med or something, go there to have him admitted.
08-14-2013, 11:07 PM   #7
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Hes been admitted before. They admit him eveeytime but they always send him home the next day after observation with instructions to follow up with either his GP or GI. They give him IV meds (pred, zofran, pain etc) but nothing take home. And here the past few times they admit him long enough to get labs back then they discharge him. His GP says its his GIs job to give his mantinence meds the GI says its the GPs job. Its just messed up. 8 years of the back & forth is wearing on him.
08-15-2013, 05:58 AM   #8
upsetmom
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..I'm sorry your husband is going through so much.

His GP says its his GIs job to give his mantinence meds the GI says its the GPs job.
His GP is right it is up to the GI. If his GI won't give him any meds l think its time to find a new DR your husband should't be suffering like this.
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08-15-2013, 06:54 AM   #9
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I know upsetmom. This is the 5th GI we've had in the 8 years since dx. Theyre all the same. It took me 2 days on the phone with this ones assistant just to get an appt with the docs nurse practitioner. Idk what shes gonna do but it all we've got right now. Husband cant eat or drink anything. He didnt eat yesterday and took a few drinks of juice. He says he feels too full too quickly. This morning the pain is bad. Ad hes in a really bad mood. Im gonna try to get some applesauce and gatorade in him today.
08-15-2013, 02:37 PM   #10
upsetmom
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Sorry l didn't realize you've been through 5 GI's..
I'd keep ringing the GI / nurse and telling them whats going on.

Where is his crohn's located ?

My daughter was getting full after a few mouthfuls of food.
We were told is was probably acid.....we're seeing the GI in a few days.

I hope he starts feeling better soon.
08-16-2013, 12:45 PM   #11
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Well it started out in his terminal ilieum. Now it has spread to his colon and rectum. Hes starting to get the extraintestinal stuff with his eyes and skin. He also has a hiatal hernia and enlarged spleen. One GI told us that the enlarged spleen was caused by the CD.
08-16-2013, 02:12 PM   #12
723crossroads
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You need to start yelling loud and clear that if something else isn't done you are getting a lawyer. If they won't give him painmeds for CD then tell him to go to the Dr.s and complain about his back ona nd on and I'm sure it hurts so bad now it would convince them to give him some!!! poor guy!
08-16-2013, 02:50 PM   #13
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I have been thru 4 GIs until I finally found the right one!! I had to go to a biologic which put me in remission. He really needs to get to another Dr . If you try and call a new GI make sure to tell them he is depressed and you are worried. I always make a big deal out of things especially if Im in pain.
Its so hard to fight 2 diseases...Crohns and depression. I know... I have been for a couple of years now and there were alot of days I didnt want to live!! Depression is just as bad to me as my Crohns is.
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08-16-2013, 03:08 PM   #14
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723, Ive thought about the lawyer thing. Cuz this has to fall under some kind of medical negligence somewhere. We've tried the back thing (he has multiple herniations and bulging discs with Mri backing it up) but still, nothing. Hes so bad in pain, that he says he wants to die. :'(
Mary, I actually broke down crying last month at his GP visit and told him about my husband trying to shoot himself just a day before. I told him that I knew 2 of his paitents that get a bunch of percosets each for sciatica (I really do) & that they sell them and my husband is so depressed that he wants to die. The doc did nothing. Said nothing. Just gave us a referral to the only GI in the area that accepts our ins (his office is an hour away). The NP today told us that he has severe inflammation in his colon & rectum and some scarring but didnt prescribe anything. Not even mesalimine for the inflammation. Im so angry right now. He hasnt eaten in 2 days cause of the pain. It hurts to digest anything. Hes bloated. Hes nauseaus. Idk what to do. Ive left so many messages with his GP & GI theure not calling back. Ive lost faith in these doctors
08-16-2013, 04:05 PM   #15
lblair
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So sorry not sure about these doctors I some times wonder!!! I had the depression before Crohn's so I'm on something for that.

Praying for you guys!!
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08-17-2013, 12:36 PM   #16
723crossroads
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723, Ive thought about the lawyer thing. Cuz this has to fall under some kind of medical negligence somewhere. We've tried the back thing (he has multiple herniations and bulging discs with Mri backing it up) but still, nothing. Hes so bad in pain, that he says he wants to die. :'(
Mary, I actually broke down crying last month at his GP visit and told him about my husband trying to shoot himself just a day before. I told him that I knew 2 of his paitents that get a bunch of percosets each for sciatica (I really do) & that they sell them and my husband is so depressed that he wants to die. The doc did nothing. Said nothing. Just gave us a referral to the only GI in the area that accepts our ins (his office is an hour away). The NP today told us that he has severe inflammation in his colon & rectum and some scarring but didnt prescribe anything. Not even mesalimine for the inflammation. Im so angry right now. He hasnt eaten in 2 days cause of the pain. It hurts to digest anything. Hes bloated. Hes nauseaus. Idk what to do. Ive left so many messages with his GP & GI theure not calling back. Ive lost faith in these doctors
I thought there were laws about compassionate care and how people in bad pain were to be treated with pain meds. My PC gives me painmeds for my back, I have stenosis and 4 bulging discs and had a herniated disc and had sugery, Now the scar tissue is pressing on nerves and causing much pain. I sometimes couldn't do anything if I didn't have them, I just can't believe they won't help him. He could use some antidepressants too. Maybe some MJ in the meantime to get him through this. Are there any pain clinics nearby???
08-17-2013, 02:12 PM   #17
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Hey 723
Sorry to hear about your spine! I have stenosis, bone spurs, herniations and flipped lordosis and FM Its awful pain.
I dont know about the laws regarding giving pain meds, but in January of this year, Kentucky made all kinds of rules and regulations and criterias on prescribing them. The doctors even complain about these strict laws because they feel that they cany treat their patients properly. Now you have to take drug tests for sleep aides like Ambien. My son had the mumps a few weeks ago and they precribed him Tylenoyl with codiene and it went on my Kasper report and the nurse said "try not to break any bones in the next week because you arent allowed narcotic pain meds" The Kasper tracks your medications. My psych has to send them his session notes so Kasper can make sure my symptoms meet their criteria for my clonazepam. And I have to do 2 pill counts an a drug test everymonth. With my husbands CD ots considered abdominal pain and that doesnt meet their criteria. Hes been using MJ but even thats not helping. It helps the nausea and helps him sleep but he still hasnt eaten. Its been 3 days now. Its a mess here in KY. The people who do get them sell them so you know they dont need them. Then you have peole like my husband who is suicidal from the pain making him crazy and he camt get amy help at all.
08-17-2013, 03:40 PM   #18
723crossroads
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They really cracked down here too, I now have to drive to my Dr.s office to pick up my script. Then my Dr. gave me 3 scripts that each say when they can be filled. Too many people are addicted to them and now the gov't. is cracking down. But it isn't fair to those who truly need them. Did he ever try the cannabidoil you can order online? It is much more CBD's and better pain relief. I do feel for you both! Are there any other ways to get him help there, like seeing different Dr.s? So very sorry!!! Hugs!
08-17-2013, 03:51 PM   #19
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Im in the process of making cannaoil. I have read a lot about its anti inflammatory and pain med properties. Just takesa lot of MJ and Im waiting on the harvest.
And yes waaay to many pain pill addicts/abusers. Sad thing is, when the govt cracked down on narcotic pain meds, they turned my hometown into a bunch of heroin addicts. Very sad situation.
I want to try a new GP for him but if you switch too quickly or too often you get flagged. This is his 2nd just this year. Im hoping something changes soon. Hes already lost weight from not eating for 3 days :-/
08-17-2013, 09:03 PM   #20
723crossroads
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Wish so bad there was some miracle I could tell you that works. The only thing I know of is painmeds and a lot of prayers. Hope the oil gets done soon and he can try it. Hoping for the best for you too.
08-22-2013, 11:24 AM   #21
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I'm in a similar situation. My fiance has had crohns for 10 years and recently got insurance to see a GI. He had a small bowel resection in June and is still in intense pain. Lately the ER has told us he has been red flagged by the DEA for "doctor shopping" just because he had no choice but to go to the ER when he didn't have insurance and as a result of that was given pain medication by 12 different doctors since February. Most of the time he would only get sent home with 15-20 of them (enough for 3-4 days), but now whenever we go to the ER they send him home with nothing for the pain or have to make a note in his chart in fear of their license being suspended (not many doctors want to do that). His GI won't give him any pain medication either. No one has any idea what's been causing all this pain because he should be healed from surgery by now. He has been talking more and more about giving up and wanting to end it all and asking "what's the point?" And saying "i'd rather die than live in this much pain." I know how hurtful it can be to hear these things. He hasn't tried to kill himself recently, but he had tried before we met so i'm taking everything he says seriously.
08-22-2013, 12:01 PM   #22
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Kitten *Hugs**
It is hard. My husband hasnt had any surgeries yet. I think they need to look into his small bowel but they see it (CD) in his other parts so I guess they just dont check his SB. Hes on Medicaid which, is very basic. I am fighting with them now for over a year about getting an Mri on my back.
I think what happened to your fiance with the ER flagging him could be the problem with us. Before we had ins and even after, we made a lot of trips to the ER. And just like yall the doc would give him 15-20 tablets but now, they dont give him anything. If we're lucky, he gets a shot of salumederol, fluids and zofran. But usually its just fluids. Pot seems to help him. But he smokes a lot of cigarettes and already has asthma issues so.I dont really like him smoking it but until I get him some edibles made, its what we got.
08-22-2013, 12:47 PM   #23
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We've learned that going to the ER late at night/early morning around 12-3am you get the best treatment. When we were going durring the day my fiance wouldn't even get a room. The doctor would see him for less than 5 mins and give him prescriptions for prednisone and flagyl then send him home. When we go really late it's alot slower and the doctors and nurses seem to care more.
You might want to ask his GI if they can do some more tests (small bowel follow through, colonoscopy, endoscopy) to make sure he doesn't need surgery. It would also be helpful to get the results of all tests sent to get a second opinion and for your own records. A GI in NJ told my fiance everything was fine and a month later a GI in louisiana immediately found a blockage on the exact same tests.
08-22-2013, 02:44 PM   #24
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Kitten, the GI we've recently seen looked on a colonoscopy from 08 and seen scar tissue that the GI back then didnt see. I remember that colonoscpy and the GI said everything was clear and there was no active CD. Smh, doctors are full of it sometimes.
08-22-2013, 02:57 PM   #25
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I feel like most doctors just lie and say everything's fine so it's less work for them to do. It's so hard to find a good one who actually cares. We've started asking for the doctor/surgeons notes to get a better idea what they're thinking because most of the time they won't tell you everything.
08-22-2013, 03:24 PM   #26
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I just may start doing that! Theres no telling whats going on inside there
08-31-2013, 08:27 PM   #27
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He is in a lot of pain today and his energy is low. He told me that he doesnt want to live anymore because this is not living. That he doesnt exist anyway. He said that sometimes he hates us (kid and I) because he HAS to live because of us. I try my best to be supportive and be a shoulder for him but the things he says are so hurtful. I dont know how to hel him. Hes so sad and depressed right now. He will not go see a therapist. I jist dont know how to help him anymore.
Thunderbear1, I feel your pain as you feel your husband's pain.
I have been married for almost 4 years. My then-boyfriend and now husband told me that he had Crohn's since he was 12, and I was a total ignorant about it. But at that time he was fine, he was even able to run everyday and lift weight, chin-up bars, swim, and all what just a healthy person will do. But it was in 2011, July to be precise, when his condition deteriorated so fast and in just a difference of a month he was underweight, weak, completely weak. I was very scared because never before I had seen somebody to get so sick like he was.

My husband was at some point very depressed even though he still he had the driven to live. At the beginning he was stubborn to go to see a doctor, and I don't blame him because none of us had insurance and I was working as a nanny while pursuing my career. It was in February 2012 when he landed in ER, weighing 91 lbs, with swollen feet and practically dying. The doctors told him that he would have waited for another week, he would have died, due to the intestinal blockage that could have led to an deadly internal infection.
He's been back twice in the hospital for partial blockage but little by little he is getting on track. Every time he was there for a week, and the GI he is currently seeing is very caring, up to the point that called my husband one time after 8 pm to check on him... What doctor would do that?

My husband is also doing a holistic treatment, approved by the GI (Though for respect and not promoting business, I will not release that information). But initially he had a different GI who was very hostile about the holistic approach and just wanted to chop his gut, but the second time he was admitted due to the partial blockage, he was referred to another GI, the current one. My husband is taking 20 mm of prednisone, 100mm imurane and an aggressive intake of the holistic medicine, and also juicing. He hasn't had any surgery either.

Meanwhile, I had to learn in the hard way about his condition. I prayed and asked people to pray for him, but I realized that not many people understand the condition of Cronh's, so little by little I have to be very patient with their ignorance...which I noticed that it did not help my husband.

Has your husband accepted to see a therapist so far? Please tell him that he is not alone in this situation, but there is still a reason to fight for.
There were so many times I felt very down, and it was my husband who keep saying: "I will live, I will live, this condition will not define me, but I will live". I actually give to him the credit of teaching me so much patience when I wasn't and I thought just to give up.

He hasn't had any colonoscopy recently, because both holistic and GI doctors agreed that they should wait for him the be stronger. Tomorrow he will reduce the prednisone amount to 15 mm, as directed by the GI. I think before doing a colonoscopy the GI wants that my husband is taking less amount of drugs, or better to say, the GI prefers he is off from taking prednisone.

We send to you and your husband our thoughts and prayers.
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09-04-2013, 04:22 PM   #28
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Hugs and prayers to you and your husband, also!
I am slowly getting my husband to accept a therapist for his depression and suicidal thoughts. Hopefully, he will see one shortly.
09-04-2013, 05:17 PM   #29
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Thanks so much! My husband sends tons of support, he says "I truly believe there is a warrior inside him!".

You are also a strong person just for the fact to be supporting him no matter what!
09-06-2013, 01:50 PM   #30
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Thanks so much! My husband sends tons of support, he says "I truly believe there is a warrior inside him!".

You are also a strong person just for the fact to be supporting him no matter what!
There is a warrior in us all on this forum! The sufferers of this terrible disease, because they go thru things no one can possibly understand. And us caregivers for trying to understand and be patient and sticking it out with our loved ones when everyone else gives up.
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