Worried about Partner with UC

[LOU]

Hi im new to this forum. My partner was diagnosed in february and has been struggling with medications and flare ups ever since. Hes been on courses of steroids and various drugs with have had no affect. His knees keep flaring up and hes struggling to work as he has a manual job. Now he is looking at alternitive ways to treat himself researching different diets and took himself off his medication. This seemed to be working but now he has flared up again. Were just at the end of our thether with it all hes feeling so depressed and low. We have a 18month old daughter and he is the main breadwinner at the moment so the added money pressure isnt helping. I have offeres to go to work full time and him go part time but he wants to work and feels hes worse at home. he also finds it hard looking after a toddler! just need some advise on trying to stay positive for him and look after him. I hate not being able to help him its horrible

 

[Fruitcake]

Hiya

Personally, I would not recommend coming off medication all together. I'm sure it feels like he's been suffering for a long time with no improvement but it can take a while for some people to find the right treatment to suit them. I know people who have tried the SC Diet (Specific Carbohydrate Diet) and claimed it's helped but when they stop they are back to square one. Plus these diets are so hard to stick to as they're very strict. I wouldn't see that as helping me, just putting off the need for meds as it isn't a cure.

So as hard as it is, I'd keep plugging away at the docs. Have you considering taking him to a different doctor or hospital for a second opinion?

Lyndsey xx

 

[TheWifeUC]

! just need some advise on trying to stay positive for him and look after him. I hate not being able to help him its horrible [/QUOTE]

Hello Lou and welcome! I'm new here as well but it seems that there are many of us here who are in the same boat. It is VERY hard to be so powerless to help the ones you love. My husband was diagnosed with UC almost two years ago and we are also still working on finding the balance of medication, diet and lifestyle to bring his disease under control. After prednisone tapers failed 3 times to bring about full remission, we've decided to try Remicade. With your husband's joint problems he might be a good candidate for it as well. There is a lot of research out there connecting bowel disorders and joint problems. Everyone's disease and body reacts differently to treatments so just keep trying until you find the one that works.
As for his doctors, if he doesn't have a good relationship with them then find someone he can connect with. We changed GI specialists after the first year and have found someone who is younger and easier to engage with. She has been much more understanding about maintaining a certain lifestyle than his previous doc.
I give you both a lot of credit for dealing with the aftermath of diagnosis while also running around after an infant, now toddler. :applause:
If you'd ever like to chat/vent privately, please feel free to PM me.

Wifey

 

[LOU]

Hi thanks for the replys nice to talk to people who understand. Friends and family think its not too bad and they know people who have had it and theyve been fine after a few steroids so they dont really take it seriously!I think they think OH is a hypercondriact! You were right about the diet fruitcake hes nearly collapsed at work today. so hes back to square one and taking the rest of the week off to rest. Will get him to ask his doctors about the Remicade that sounds worth a try. He has got a really good doctor I think its just like you said hard to treat and trial and error as everyones different. Hopefully he will be in remission soon and our little one wont think daddy lives in the bathroom anymore!

thankyou for your help x

 

[DustyKat]

Hi LOU and :welcome:

I'm so sorry to hear about your hubby and all that you are going through. You have been given very good advice and I can only say that when you see the doc lay it on the line about how bad things really are. Do you go to his appointments with him? If not, and it's possible to have your little taken care of, you could go and explain just how things are at home as well.

Good luck and welcome aboard!

Take care,
Dusty

 

[Dexky]

Welcome Lou! I do hope you find a course of action to help him. He seems very determined to remain the breadwinner. Best of luck to you both!!

 

[LOU]

Just a question has anyone know if you can claim disability living allowance or anyother help? OH is going to be off work for at least a month un paid i think hes been in hospital today he isnt fit for work at all. I work part time and due to recession i cant up my hours as there isnt any more available and i have a little one to look after? Ive looked on Naccs website and it looks a bit like people have a strrugle claiming?

any advise would be much appreciated

thankyou x

 

[Rebecca85]

I take it you are UK? Why isn't he getting SSP (statutory sick pay)? Unfortunately you can't claim DLA unless it's something that is expected to last at least 6 months, so you probably wouldn't qualify just on that point. However, if you are only working part time and have a little one you may be entitled to child tax credits, or if you are already getting them you may be elegible for an increase while he isn't earning.