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Crohn's problems

scoop1976

scoop1976

Hi, my name is Trevor.
I was diagnosed with Crohn's back in 2010.
When I was diagnosed I had lost 2 1/2 stone and was in a really bad way.
I have been on all the medications/steroids but these never helped me.
I was then prescribed Humira.
I took my first dose at home and my face and lips started to swell up.
I was taken to hospital and they kept me in for a few day to monitor the situation.
I saw my consultant and because I had tried all the other meds, he decided it was time for to try Infliximab infusions.
I had my first infusion (half a day in hospital as you know).
I went from the hospital to my sons school to pick him up.
He got in the car and we were driving home and then I lost 20 minutes of the journey and came around not knowing where I was.
I was rushed to hospital as they thought I had a stroke.
It turned out I had a reaction to the Infliximab and have now got temperol lobe epilepsy, as if the Crohn's isn't bad enough.
Over Christmas my partner of 9 years and wife for 5 years decided she couldn't cope with my various health problem and told me to leave the family home.
My question to you all is:
Is this a common thing to happen?
and there was no warning.
How do you move on with your life?
I attempted suicide 18 months ago but as you can see I survived.
If anyone can give me advice on moving on etc, it would be much appreciated as have been in such a bad way over the new year etc.
Many Thanks
Trevor
 
V

valb

I am so sorry!! That is a lot to go through. Do you have a local Crohns support group that you can attend? Perhaps talking or even just listening to others going through and understanding this disease may be of great help to you. It is very difficult for those who have no idea what we go through everyday how difficult just doing simple day to day things are. You need as much support as possible!! This group is fantastic and never hesitate to vent here. This is my go to when I need help and have questions . Take care!
 
S

smt

Hi Trevor,

I am sorry for what you have gone through. I am an Indian research scholar in business management.

However, at the same time I am extremely enraged. You write that your partner/wife/whatever (sorry - my words fail me to describe such a person) asked you to leave the family home. I am sure there are laws in your country; can that person quote any relevant law under which an ill person can be thrown out of home? Is this not inhuman?

My suggestion is: besides fighting the considerable battle against Crohn's for which you would find support here on the forum, get rid of this person, legally, emotionally, physically. I know that this is your personal matter, but you brought this matter before the forum, and hence I think I have a right to make a comment on this.

Please do not contemplate suicide, otherwise the child (the one in the picture) might be at the mercy of your wife/partner/whatever, and that would be deleterious to her interests, is what I believe.

Regards
 
scoop1976

scoop1976

Hi,
Thanks for your replies/advice. I have moved out and was put in temporary housing. I was attacked whilst in temporary housing and sustained serious head injuries. I was then moved to a more suitable place and have since been attacked twice by a psycho woman from next door. All this stress has made my Crohn's worse and am now housebound. The only reason I left was because my son is autistic and couldn't understand why I was still at home if we had split up, this was causing him real distress and it wasn't fair on him. I think my wife is having a midlife crisis, as all the classic signs are there. I just want to move on for my son's sake. Has anyone else been in this position? I posted on here when was first diagnosed and recieved so much support from lots of kind people. Sorry to moan.xx
 
scoop1976

scoop1976

Thanks ronroush7.
It means a lot to me to me.
(people don't understand how difficult things can be for us)
Have my infusion soon so should feel a bit of relief.
How are you doing at the moment?
Hope things are ok with you.
Cheers fella.
 
tots

tots

Location
Austin, Texas
Hey Trevor-

I am so sorry your having such a bad time!

I wish I could say your wife reaction is abnormal, but I can say my husband is not good with my disease. I think a lot of IBD patients feel lie there are people that don't get it in their lives!

I hope things turn around for you really soon, you deserve a break from the trauma!!


Lauren
 
Jennifer

Jennifer

Adminstrator
Staff member
Location
SLO
I'm sorry to hear what's happened to you since you first joined the forum. :hug: Difficulty finding the right medication that works for you can be very common and people who don't suffer from an invisible illness often have a hard time understanding and there have been many people on the forum who mentioned that their partner just couldn't cope unfortunately. That doesn't mean it's impossible to find someone who is more understanding and willing to work on a relationship and support you through hard times plus with the right treatment there will be fewer hard times.

I had an ex with a bad attitude who said, "there's always something wrong with you!" While I understand their frustration they really weren't the right person for me and after 5 years of dealing with their verbal abuse I finally found the courage to leave them and felt so free without them bringing me down. It was hard to adjust being alone and we didn't have any children but I'm glad I got out of it as I eventually met my husband who is very understanding, possibly because he has illnesses of his own too. I've been able to focus on myself more since I got out of that previous relationship. I'm sure you'll find someone else eventually too but for now do your best to focus on getting well physically and emotionally so you can be strong not only for your son but for yourself too.

Keep us posted on how the Remicade is working and if it doesn't come by the Treatment section and look over the new medications that have been approved (not sure if they are in the UK) since you joined in 2010. Another is supposed to be approved for Crohn's soon as well. :)
 
ronroush7

ronroush7

scoop1976 said:
Thanks ronroush7.
It means a lot to me to me.
(people don't understand how difficult things can be for us)
Have my infusion soon so should feel a bit of relief.
How are you doing at the moment?
Hope things are ok with you.
Cheers fella.
Click to expand...
I am having a little flare. Hopefully the specialist will have some ideas. Best you
 
fuzzy butterfly

fuzzy butterfly

Well-known member
Hi Trevor things have been really really rough for you. Im so sorry that you have had to deal with all that. You will get to a better place with your self and the world it just takes time,and effort. Believe in yourself and be as positive as you can coz it does help. Iv been so down with this disease but now i think positive and wont let the begger get the better of me. Remember us crohnies are tough..we have to be..
Hope you find the right treament to help you feel better and then are able to find enjoyment in life again. Trust me it can be done. Remember we are all here for you.:hug:💕
 
susser2000

susser2000

I know it can be difficult, but some day you will be able to figure out a way to stop the pain. I had gone through multiple medications that failed me and surgery was the only solution for me. It is a really rough time going through the trial and error phases with medications. I remember thinking that nothing was ever going to work. I have now been pain free for 8 months since my surgery.

As far as your partner goes, you did the right thing by removing yourself from the situation; stress only makes things worse. It is very important to surround yourself with people that support you and your condition. Good luck with everything and I hope you find remission soon.
 
S

smt

scoop1976 said:
Thanks guys, I'm trying to stay positive.
Good luck
Click to expand...
Yes, please do that. Also no giving in to any sort of unkindness, brutality or uncivil behavior. As MandyK said: "We Crohnies are tough...". I know that it is difficult, but please try to do it.

Best wishes. May you find remission sooner rather than later.
 
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