Spouse has UC

[busymom]

My spouse had a colonoscopy beginning of march and everything went down hill from there. He was diagnosed with severe UC spent 15 days in the hospital. Went from 165lbs to 113lbs. Since march he has had 5 Remicade infusions and goes monthly now. He's also on prednisone daily along with an anti heartburn medicine. He also goes for blood and iron infusions regularly. In April he relied on me for everything including getting out of bed and showering. May was a great month seemed he was in remission and things were looking up. We have 4 young children and I'm currently a stay home mom, thank god.June hit and everything went downhill again. I try so hard to be understanding. One day I can wait on him hand and foot and be okay and others I'm sick of taking care of a 5th child who doesn't want to take care of himself. He does nothing but sit in bed and sleep, doesn't maintain his hygiene or help with the kids or house maintenance. He won't even make a list of meals he can or wants to eat so I can go shopping for them.I get "I don't know". Dr has been pushing since day one for him to go for surgery but he doesn't want to be stuck with an ostomey bag the rest his life. As far as I'm concerned that seems like a better life then what we currently have. I'm no longer his spouse I'm now a caregiver. There's no physical touching I'm lucky if he holds my hand.

I feel horrible for not always being compassionate and understanding but I'm so frustrated. Any thoughts, suggestions, opinions are welcome.

 

[DJW]

Hi and welcome.

Sorry things are so difficult right now. We have a great subforum for spouces,check it out. You're definitely not alone.

The early stages of diagnosis are the most difficult. Its definitely a life changer. There is also a grieving period people (patient and love ones) go through. Depression is very common. Would your husband consider joining?

Take it a day at a time. Sending you and your family my support.

 

[busymom]

Thanks for the reply, i found the support forum and have subscribed. i'm not sure my husband is willing to do anything for himself or anyone at this time.... i really don't even know what to say to him. I don't want to sound like i'm not supportive.

 

[DJW]

I have times when there is nothing anyone can say or do to change how I feel. Even if its unspoken I'm glad someone is there for me.

 

[vonfunk]

Before my disembowelling, at the times when things were bad I got to be very similar. I dropped 60lbs during my first flare, spent 3 weeks in the hospital. Had to work from home for a couple of months. I went through bouts of depression, I physically lacked the energy or stamina to do anything. I would get tired while eating.

It took me a long time to get used to the idea of having the bag. My doctor had been bringing up the idea of surgery the entire time, he started while in the hospital with the first flare. It took me 2-3 years to come to grips with it, and even then it was after I had exhausted every option.

However with UC, the bag isn't necessarily permanent. In theory if everything goes well with the first surgery they can reconnect the plumbing after a couple of months. I'm just now going through the process of reconnection, and that is only because I had issues with hernias. After having the bag for awhile, I had considered keeping it forever. It was a vast improvement over the quality of life. However there was somewhat of a grieving process before surgery, I personally had to come to grips with it.

 

[Orchid]

Thanks for the reply, i found the support forum and have subscribed. i'm not sure my husband is willing to do anything for himself or anyone at this time.... i really don't even know what to say to him. I don't want to sound like i'm not supportive.

You really sound like you're not trying to see the intense pain he's in, and just focusing on the fact he can't get out of bed. Right now he's in intense, churning pain all day and because his GI tract isn't working properly he has basically no energy. Moving will only make it worse and drain what little energy he has.

You ever seen Alien? The chestburster scene? The writer, Dan O'Bannon, based the scene off his experience with IBD (Crohn's in his case), so that's a good place to start when trying to think of how the pain feels.

 

[busymom]

You really sound like you're not trying to see the intense pain he's in, and just focusing on the fact he can't get out of bed. Right now he's in intense, churning pain all day and because his GI tract isn't working properly he has basically no energy. Moving will only make it worse and drain what little energy he has.


You ever seen Alien? The chestburster scene? The writer, Dan O'Bannon, based the scene off his experience with IBD (Crohn's in his case), so that's a good place to start when trying to think of how the pain feels.

I'm not sure that's what I'm saying. I know all about pain, I suffer from severe depression and have been in 4 car accidents. My body acts up quite often But I as a parent also know I have a family to care for as much as I want to stay in bed all day and sleep.

 

[If*]

Hello, my heart goes out to you.
Having children and caring for an adult can be overwhelming. You need to get some additional help. Can you ask family, have a nurse stop in? Sometimes the person who needs care will respond differently when an outsider comes to help. I say 'outsider' since it is out of the comfort zone. It might help them find their inner try try try.
I am not a care taker but am a mother with CD and have had to force myself to keep going. I understand the weight loss can make you feel like a wet noodle, (my weight was in the low 80lbs.) but the less you do the less you do, a little each day really helps even if it starts with little things like walking a lap in the house. Hygiene is a must! I also understand the pain. It can be debilitating. You need additional help and support. I applaud you on all your effort!! But if you drive yourself down who will care for the kids?
Start asking for help, people who can show up and give a hand. Asking for help is not a fail.

Be good to yourself so you can be strong for your marriage and kids. (This is 'the better or worse, in sickness and in health' mentioned.) Hang in there brighter days will come.

 

[busymom]

Hello, my heart goes out to you.
Having children and caring for an adult can be overwhelming. You need to get some additional help. Can you ask family, have a nurse stop in? Sometimes the person who needs care will respond differently when an outsider comes to help. I say 'outsider' since it is out of the comfort zone. It might help them find their inner try try try.
I am not a care taker but am a mother with CD and have had to force myself to keep going. I understand the weight loss can make you feel like a wet noodle, (my weight was in the low 80lbs.) but the less you do the less you do, a little each day really helps even if it starts with little things like walking a lap in the house. Hygiene is a must! I also understand the pain. It can be debilitating. You need additional help and support. I applaud you on all your effort!! But if you drive yourself down who will care for the kids?
Start asking for help, people who can show up and give a hand. Asking for help is not a fail.

Be good to yourself so you can be strong for your marriage and kids. (This is 'the better or worse, in sickness and in health' mentioned.) Hang in there brighter days will come.

Thanks so much for your input. My husband is up to 140 lbs now, not quite where he should be but getting there. My mom takes 2 of the kids every other weekend to make things a little easier but still doesn't help with everything i have to do during the week on my own. I really feel selfish for saying it like that but it's really how i feel

 

[If*]

Wow you are really doing super!! From 113 to 140!! That must have taken a lot of you. It is not easy (usually) to put the weight back on.
Can you ask his Dr. about how to get a little more help? A helper to come in 2x a week?? Ask family to throw in on the expense of a housekeeper if they can't show up.

Having kids is a big responsibility. The to do list is huge. If a person can understand what it takes to care for their self x that by how many kids and little/young/teenagers need even more time. Then the care of a spouse ~ your up to X5 what about you? Your health is important too and there is no shame in reaching out. You sound amazingly strong and have been through a lot. It is painful to see a loved one struggle, suffer and not have the energy to try. You have already made such a difference but please try get a little extra hands on help. It isn't giving in. It can help you gain a bit more control of the situation.

It will get better!!

 

[busymom]

Wow you are really doing super!! From 113 to 140!! That must have taken a lot of you. It is not easy (usually) to put the weight back on.
Can you ask his Dr. about how to get a little more help? A helper to come in 2x a week?? Ask family to throw in on the expense of a housekeeper if they can't show up.

Having kids is a big responsibility. The to do list is huge. If a person can understand what it takes to care for their self x that by how many kids and little/young/teenagers need even more time. Then the care of a spouse ~ your up to X5 what about you? Your health is important too and there is no shame in reaching out. You sound amazingly strong and have been through a lot. It is painful to see a loved one struggle, suffer and not have the energy to try. You have already made such a difference but please try get a little extra hands on help. It isn't giving in. It can help you gain a bit more control of the situation.

It will get better!!

There really isn't anyone even my mom lives out of town. Ever since we had kids everything has been about them, then him, and the house then there's nothing left for me. It took a lot mentally emotionally and financially to get his weight up to this point and now with this flare I'm afraid it may go back down again. The only frequent relief I get is therapy every other week for an hour. I just can't understand in pain or not how someone won't take care of them self.

 

[lisadc1]

It sounds like he is truly depressed. Having Crohns and other health problems, a family, and a career, there are days I truly feel like giving up. I often feel inadequate, when only a year ago, I was an active mom, wife, educator, volunteer. Those who do not live on this side of this horrid disease, as sympathetic as one may be, doesn't understand the complete fatigue, even when God, family, careers, and so forth mean so much. I pray you can find some peace through this struggle with your husband as you are picking up so much slack...as was mentioned before "in sickness and in health..." I know it isn't easy, so many prayers for you.

 

[If*]

I really do understand trying to do it all. As much as you want to, part of being healthy for yourself is asking for additional help. Please ask his Dr. for in home care support or to point you in the right direction. I know you worked hard for the weight he gained You can also ask his Dr. about en, liquid nutrition to help with weight.
Even when in pain as a cd person I have to consider others. No matter how much pain, weakness or sadness, sickness i might be dealing with. Everyone has feelings, yours are of value. Communication is important, does he know how hard you are struggling?

It will get better. I tell myself all the time

 

[busymom]

It sounds like he is truly depressed. Having Crohns and other health problems, a family, and a career, there are days I truly feel like giving up. I often feel inadequate, when only a year ago, I was an active mom, wife, educator, volunteer. Those who do not live on this side of this horrid disease, as sympathetic as one may be, doesn't understand the complete fatigue, even when God, family, careers, and so forth mean so much. I pray you can find some peace through this struggle with your husband as you are picking up so much slack...as was mentioned before "in sickness and in health..." I know it isn't easy, so many prayers for you.

I'm afraid that he really may be depressed. Its something I've mentioned to him before but he hasn't looked into it. How do you cope knowing you can't do what your use to?
My husband is on sick leave from work I feel he's kind of moping around.

 

[busymom]

I really do understand trying to do it all. As much as you want to, part of being healthy for yourself is asking for additional help. Please ask his Dr. for in home care support or to point you in the right direction. I know you worked hard for the weight he gained You can also ask his Dr. about en, liquid nutrition to help with weight.
Even when in pain as a cd person I have to consider others. No matter how much pain, weakness or sadness, sickness i might be dealing with. Everyone has feelings, yours are of value. Communication is important, does he know how hard you are struggling?

It will get better. I tell myself all the time

His Dr has said he'll put him in the hospital on a feeding tube so he can have surgery but there's been no offer just so he can get healthier. Hes not as reliant on me as he use to be. He can bathe himself and walk to the bathroom on his own now. I still have to fight with him to stay clean though. I still do all the meals, house work and taking care of the kids. I'm not exactly sure a Dr could suggest someone to help with all that without paying them.

I have told him that sometimes I just feel over whelmed and want him to suck it up he says he understands that.

 

[busymom]

Took my girls to the splash pad this morning while the hubby went to his GI specialist. We ended up having to cut the day short because the specialist was sending him to the hospital for blood his hemoglobin is 60. Now the girls and I are spending get the rest of the day at home.

 

[vonfunk]

Wow, 60 is super low. 70-75 is when they start to talk about blood transfusions. 60 is nearing the realm of "how are you still able to walk?".
I hit that point once, I was in really rough shape, saw my GI, he sent me downstairs for routine blood work, when the doctor saw the results the next day he called me at work and said that he was going to start to paperwork to admit me and he would call back in 2 hours.

 

[busymom]

Ya he said it should be double that. Hubby also had a fever of 103.6 last night and refused to go to the hospital. I can't get him to take his vitamins or iron pills so I'm sure he's gonna spend more time then today in there.

 

[busymom]

Weird part is he did this blood work Tuesday and he's just telling him today

 

[Orchid]

That's really fast! Many places would have to send it off.

 

[busymom]

That's really fast! Many places would have to send it off.

They do it in town usually results the next day and if they are that bad usually the Dr calls right away. At least our family Dr does, apparently not the GI

 

[Orchid]

Maybe he was busy, even doctors are human beings. You do live in the area of the world with the highest concentration of IBD so I imagine he's quite busy.

 

[vonfunk]

It depends on the doctor-lab set up. My GI was located in a hospital, the transfer of information was incredibly fast. If doctor and lab are in different locations then it would stand to reason, blood work done Tuesday, analysis completed Wednesday and sent over, Doctor sees results today. If the doctor had other things to talk about and he had just gotten the results I can understand why he may have wanted to continue with the app't as opposed to just sending him to the hospital. If he had just gotten them this morning or they arrived late in the day, there is a chance that he hadn't had a chance to look at them until directly before the app't.
My haemoglobin was a bit lower, hovering about 50 points, that combined with everything being done under one roof would have sped up the whole process for me.

 

[busymom]

I live in Canada. He's on the ball with stuff like that, it's his job. My hubby has been driving so what if he passed out while driving and his Dr knew his hemoglobin was low. Scary thought.

 

[busymom]

He went to the hospital for 1pm he just got blood 30 mins ago, they are saying 6-8 hours, holy crap!

 

[vonfunk]

It takes 3 hours or so for the bag to run, it depends on how many they are giving him.

I got to a room in the late afternoon, they eventually let me go around midnight the next day. I had the option to stay overnight for a second night, but live 4 blocks away from my hospital.

 

[busymom]

He's gotten blood before one bag has taken 2 hours. Geeze thats a long time to be in the hospital! Did you have to go back for more?
He's getting 3 bags today.

 

[vonfunk]

I was in and out of the hospital that summer, I think I received transfusions at 3 different times that year. The first transfusion took place end of May, directly before the 24 weekend, I was already severely anaemic prior to that, back then I had a colon and I was a heavy bleeder while in flares. For the first part of the year my count was hovering around 90. With this I was in the middle of a flare that was not very apparent so I was constantly bleeding but it was unnoticeable, this caused my counts to slowly drop. The flare got worse, I went back in a couple of more times over the next few months before they got things under control.

The hospital stay was 3 days before I was set to go on vacation, I had to cram 2 days of work into 3 hours. My doctor promised me I would be out in time to pack and catch my train. Several units of blood, a couple of iron and two days of hospital/TV time did wonders for my vitality.