My fiancee....

[Kayla92]

My fiancee was diagnosed with Crohn's disease about 5 months ago. We couldn't go out and do anything. He was always afraid to go out and do anything, unaware of when it would flare up and force him into the bathroom. He felt like he was letting me down, simply because when we would go to dinner, I would eat by myself while he was in the rest room. Little did he know I have had my fair share of health issues and it never bothered me that he had to be in the rest room. I completely understood. Angry, because he wouldn't take it to the next level and go see a doctor. Stubborn? Yes, very....

I finally convinced him to go to the doctor and it didn't take long for them to order an upper and lower. I took off work to take him and bring him home and take care of him during the whole process. Once diagnosed they put him on a steroid that he takes 3 pills each morning. They have been a god send. Up until recently. I feel that his body is becoming immune to them. They haven't been helping so much lately.

He gets so angry, I understand... But he tends to take it out on me and I know he doesn't mean to but he doesn't realize he does it. I know I don't know where he is coming from or how to help.... He knows I feel helpless when it comes to his unexpected flare ups and his big thing is that he feels like he is letting me down. He asked me when he was diagnosed if this would change the way I feel about him. My answer? Obviously it was no. We were dating when he was diagnosed, and now we are happily engaged. I know that stress has a hold on him and from all of the research I have done, stress is extremely bad for someone who has this disease. We live at his father's while we find a house. His father is unsupportive, doesn't care about the diets or anything. Constantly they are arguing and his father initiates the arguments. My fiancee is also a smoker. Which his doctor advised him to quit. That was 5 months ago. His father and step mother are smokers also, we've told them time and time again that smoking irritates him. They still proceed to smoke in the house. It is hard for him as a smoker of 10 years to quit when everyone else in the house smokes. I am pushing to move out, but it is not in our hands at the moment.

All in all, I need help. I don't know how to be the support he needs. I can't take it. I can't take how much pain he is in, or how he constantly thinks he is letting me down, so we don't do anything. Is there anything I can try?

 

[Jennifer]

Smoking stimulates the bowels so its certainly not helping (I'm an ex smoker of 10 years). Smoking/life style aside, it sounds like the steroids aren't enough. Its often the combination of different meds that help get a flare under control. Yes stress and smoking and diet all play a role during a flare but even if you decided to be the most unhealthy person in the world, medications usually can get you back into remission (unless the disease is too far gone or too aggressive).

If it were me in your shoes. I'd urge him to go back to his GI and say that quitting smoking isn't an option at the moment but he's planning on quitting in the near future, in the meantime his flare is getting worse even with the steroids, is there another medication we can try to get this flare back under control along with the steroid? After that, you both do your best to move out of his parent's place (even if its a shabby apartment, that's where I live, it ain't so bad) because the stress and the extra smoke isn't helping either of you. We don't want you getting sick (or sicker since you said you have your own issues) on top of his illness.

As far as quitting smoking goes, we'll tackle that bridge when we come to it I think. Right now he's completely stressed out and its really hard to quit during that time especially when there are other smokers around. When I quit I did it cold turkey because my health is more important to me (I have heart problems that began recently) and I want to have kids and my fiance wanted me to quit (he's a non smoker). You have to have a reason to quit (our own health often isn't enough otherwise we wouldn't have started to begin with). Although I also avoided people who smoked and didn't drink alcohol for a while cause that's when I'd smoke the most.

Good luck to you both!

 

[Kayla92]

Thank you so much. It really helps!!!

 

[Astra]

Hiya Kayla
and welcome

These 3 tablets a day, are they Entocort?
If his Crohn's is located in another area other than the small bowel and the beginning of the large, these meds might not reach.
Prednisolone steroid might be more beneficial to get him back on track and reduce his pain and inflammation.
Time to have a meds review with the doc?
There are other alternatives out there, he shouldn't have to suffer in pain or 'just put up with it' IMO
You're doing a great job! Sometimes we just want peeps to go away and leave us alone when we're in pain, but remember this isn't a reflection on you tho! Just let him know you'll be there when he 'comes back'
Hope you get your stress sorted out, it's a killer, good luck and
lotsa luv
Joan xxx

 

[Kayla92]

Thank you Joan. It is Entocort that he is on. Unfortunately right now his doctor's office is fighting us on refilling his prescription. He is out of pills and I have been on the phone with them for almost 30 minutes... ALl the doctor has to do is sign the script and they can send it over... I am furious.

 

[M2M]

I hope you got the med's worked out Kayla.. that is too bad the doctors office was jerking you around. any steroid has to be weaned off; from 3 down to 2 down to 1! Entocort worked great for my daughter; and I have heard from a few others that they can affect moods and anger easier. Hang in there and yes; get him to stop smoking; that was #1 in the doctors instructions to my daughter! its hard but necessary. you will get great support in this forum! it saved my sanity

 

[xX_LittleMissValentine_Xx]

You say you don't know how to be the support he needs. I think you are doing really well.
I think it is important to remember that, as this is fairly new to both of you, he might not know what he needs from you either. Sometimes he might just want to vent to you, sometimes he might want you to help... All I can say is try to be flexible and to be honest with each other. You will both learn a lot from the journey.
And like the others have said - removing the stresses is going to help a lot.
Good luck!

 

[Kayla92]

Thank you everyone. It's nice to hear from people who are in the same situation as I am, or are the ones who have the disease. It is nice to have the input from everyone else.

I know that people say Entocort has helped, but was that the only medication they were on? Was there a combination? His isn't working as well as it used to. He finally went to get his MRI done last Thursday, so we will see what they say. I hate seeing him in so much pain...

 

[Jennifer]

No I never took it alone. I was also on Asacol and 6MP (Mercaptopurine/Purinethol) and at one point also took Prednisone before my surgery. In my opinion more often than not steroids alone will not get you into remission. I'm very much in favor of medications that suppress the immune system to control the disease on top of medications that reduce inflammation. A lot of people fear the side effects but not everyone has all the side effects listed if any and you don't have to take it forever if you don't want to (I do though because I want to go as long as possible without another flare).

 

[Kayla92]

Well, here's an update. I finally got him to go get his X-Rays done... (Not sure if that is normal protocal for Crohn's) but he went last thursday and we got a letter yesterday from the hospital stating that everything was completely normal. What does that mean? Could it really even be crohn's?

 

[Rebecca85]

Was it an MRI or an X-ray? And he just turned up and had them done? No prep or anything?

 

[Jennifer]

An x-ray is normally done with a contrast of sorts like barium and there should be more info about the findings on the test. What was normal? We don't even know what was x-rayed. Results should have been sent to the doctor who ordered them. What have they said about the findings? What's their next course of action?

 

[Kayla92]

I think it may have been an MRI. The only prep he had was drinking some white fluid. They took images every 15 minutes for two hours.

 

[Kayla92]

His doctor's letter stated that everything was normal. There were no complications and nothing looked abnormal.

 

[Rebecca85]

I am guessing it was an X-ray. Was it noisy at all? And did your fiancé lie on a bed with a thing over him, or did he actually go in a machine?

But to be honest, if he didn't prep (either fasting or laxatives) beforehand then the images will be next to useless.

 

[Jennifer]

White fluid sounds like barium and I'm guessing it was done in the morning where he didn't have anything to eat or drink after midnight? Probably x-ray but they can do a CT scan with barium. Not everything will show up in a small bowel series so I'd suspect they'd want to run another test. Has he contacted his GI yet or can you?

 

[Kayla92]

I have contacted his GI and he has an appointment on May 8th... Unfortunately I will not be able to make that appointment as I travel for work. I have a list of questions I want him to ask his doctor, and he is making a list of his own as well... I'm assuming this is full of tests in the beginning?

 

[Rebecca85]

Here's some questions to get you both started.

 

[Dazzafarr]

I know how you feel except.... It's the opposite with me.
I'm the one with the stomach issues and my fiancé is the one trying to help me.
It's hard, I feel like not going out anywhere because of toilet issues...
I feel like I'm failing my fiancé, we have a mortgage and I need time off work.
After getting osteopenia I decided I needed to sort it.
Sort it now before I become really bad.
He gets angry because he feels inferior... The same as I do.
He knows what he is capable of but the stomach illness holds him back.
I find it hard to look into the future at this stage as its taken a toll on me.
It's not easy and at least you are supportive.
My fiancé is putting stress on me about finance etc.
Lucky im a very patient man or I would of lost the plot by now.
Try becoming more knowledgable about the disease and once you do
He will be reassured that you are with him.
It's a depressing thing to have, makes a huge impact on your life.
I'm only up now at 2:36 am because my stomach was bad.
He might wanna see a GP to try other medications.
I have heard good reports on remicade.
I think that's how it's spelt.
I smoke too and yes, I know it agrivates it but quitting it hard.
In this situation it feels harder as I still haven't got a diagnosis.
I know it's an IBD from my symptoms and bone density.
I wish u the best and your fiancé.