Community Forum

Hello, my husband is in the midst of a pretty big crisis with his health. He's been suffering from major gut problems for the last several years now. It's been affecting our marriage, lifestyle, finances, and pretty much every day to day aspect of our life. 

At any any given point in the day , he suffers. It's rare, and I can't recall the last time he had a day where his stomach wasn't giving him some issue. I want to be as supportive as I can possibly be, but any suggestions I give get angerily pushed aside. He's been to several gastrointestinal doctors. Gone through every test imaginable and they still can't pinpoint or officially diagnose him with Crohn's even though his symptoms are the exact matches of Crohn's. 

He has only only been relatively "ok" when he is on prednisone. But, they are not putting him on prednisone again for various reasons that aren't easily explainable.

I'm at the point where the next step is Cleveland Clinic, which thankfully is only 2 hrs away from our home. I think he is "almost" there too but is worried for his job. He's had to take so many sick days off and doesn't want to lose his position. I don't know how to support him properly when everything I do or say about his illness is met with anger and frustration. It's like when I act too concerned I'm hovering. When I don't act concerned enough? I'm being selfish or cold hearted. It's like I can't find a balance here on how to be a good caregiver for him. It also means that if when I get sick myself randomingly with little colds, the Flu, etc....I feel like I shouldn't complain. Or that i get frustrated that he is complaining about his constant stomach ailments and I want to scream "get over it!" .....which I KNOW is messed up and wrong. 

I know it's much harder when there is not an official diagnosis. That he's going through a lot right now that I can't relate too. I hoped he would go get some therapy for this with a chronic pain psychologist but I keep getting the "yes I'll do that" , and it never happens. 

I guess I'm looking for advice on how to help without babying or making our entire lives together about his illness. Marriage is hard enough as it is , throwing this in the mix makes it doubly hard. It makes intimacy a total non-factor as well, which is turning our relationship into a roommate situation. I'm sure we aren't the only couple that has dealt with issues like these so if anyone has some tips or ways they worked through these issues together please let me know! I'm grasping at straws right now.

Today is our 6yr anniversary and it's been clouded by a prescription issue at our local pharmacy for one of his medications. Which happens on a semi-frequent basis ( medication pick ups, problems, switches, not working, working with bad side effects, doctor script pick ups, etc...) On the one pretty important day where he was rarely feeling "ok" , he's now stressed and feeling poorly again. 

Becasue, it's not just a pain issue it's a mental and emotional one. His moods are erratic and unknown from one hour to the next. Something can make him laugh one minute, then the next he's quiet and surly. It's like walking on a tightrope. Ita also affecting how my own life is going.

I'm trying to finish my degree in Geology, but I had to drop my classes and not go back until who knows when to take care of our home , my husband, and our two dogs. One of our dogs has a very expensive disease herself. A blood disorder that takes 12 pills a day to keep in check and about $500 a month in vet /medication expenses.

An issue that I thought we should have gone a different way. That we didn't have the money, sta

Reply posted for MarieTharpRocks.

(sigh) This sounds exactly like my life...but add in two young children...Husband was diagnosed with UC 7 years ago, same week I found out I was pregnant with our first son, but after a year of awfulness, trying to figure out what was wrong with him and dealing with family deaths, him quitting his job because he felt so bad & wasn't getting answers, a miscarriage.....
I, too, have days where I just want to tell him to suck it up, but I know that is so selfish of me. I hate to say that the mood swings are a very big part of the the gut not connecting right with the brain. The moody behavior is also a common side effect of many medications, so you don't win either way. This year has probably been the hardest for us as his body was rejecting Remicade, he had a polyp removed, and his insurance company rejected the meds his doctor wanted to put him on. He was forced to try Humira before going to the other med, but it takes 4-6 months to kick in.....so we are on month 3.5 and no relief in sight. Although his nurse says Humira just "kicks in" one day....I find that hard to believe, but we'll see.
My advice-support him in making sure he has the right foods/diet. Meal prep on the weekends helps so that he will have lunches for the week instead of going out and getting food that doesn't agree with the gut. Have him sit down and have an honest conversation with his boss. Yes, it might be embarrassing, but this is also such a serious disease that hospitalization will eventually happen. My husband works at a small place of about 10 people and he and another guy have UC-we are grateful that his boss gives him the flexibility to come in late, leave early or take a day off when he is just too exhausted. Yes, it hits us financially, but forcing himself to go to work will sometimes just make it worse. And there will be lots of times where you will feel pushed away, both physically & emotionally.....just give him a quick hug and say something positive, even though he might snarl at you-it at least helps you get through the day.
Thoughts and prayers to you both.  Hang in there.....

Reply posted for MarieTharpRocks.

• You are not alone, and I guess neither am .I don't have any answers but hang in there! Wow, this is like reading my own journey with my husband. He has a diagnosis of Severe ulcerative colitis. Hecan no longer taker steroids for many reasons but had been on them for several months. We still have no found anything that works without making something worse.  He is a bear,tired, angry mean  and sick.  just want him better, I want off this emotional roller coaster for our sake and our childrens sake
•