Is there an end to this?

Hi, my name is Jason and my Wife, Jane, was diagnosed in 2000 with Crohn's disease after 3 or 4 years of misdiagnosis.
We have been through many surgeries including 5 re-sectioning. Three resulting in colostomy bags and one ending in a 3 week coma brought on by septicemia after the re-sectioning leaked into her stomach cavity and into her blood stream. Just to rub salt into the wound, this was following surgury on the 24th of December, meaning Jane was comatose for Christmas and New Years, not realizing she had missed the lot until weeks later.
Maybe 4 years ago we were having a pretty good run so decided to sell one of our investment properties to help fund a nicer house for us. With in weeks Jane suffered another serious flare up requiring months off of work, eating up any money we made from the sale.
Being the youngest child and most responsible by a long way we have also taken on the care of Jane's late 70's parents. This meant selling our home and our last investment to fund a larger home with annex for the parents. Days after moving I was made redundant, as if that is not bad enough Jane was hospitalized with in a week of the move for yet more surgery. A few days after returning home she bent down to pick something up and felt a strange warmth, her stomach staples had ruptured due to yet another bowel leak filling her stomach cavity with fecal matter.
Needless to say this disease has been a physical, mental and financial struggle for us for over 15 years now and we see no end in sight. As I write this Jane is again in hospital after getting an infection in her pick line (used by me to administer fluids at home via a Baxter pump) and maybe her 6th bout of renal failure.
Just to top it off they are now saying it is time to take the plunge, the plunge being total removal of her anus and lower bowel, due to happen on May 22nd.
Now, we have resigned our selves to the fact that we will not "grow old together" and that Jane may not see 50 (currently 42), this is something we have not discussed with our 14 year old son as yet but we really would love just a few years to enjoy what we have struggled and worked so hard to never get. Some down time. For over 10 years now all our annual leave and sick days have been spent in hospital, hell it would be 5 years since we had a weekend away.
Just because, I guess, the disease has decided to bless us with a fistula that has been feeding an abscess for over 3 years now that has been draining though a wound near her bottom.
This is not a life, this is barely and existence.
I didn't mention the drugs and I am sure you all know the stuff I am talking about even if my spelling is off;
Humira, lofexinal, Azathioprine, Infliximab, Metronidazole, Steroids, Remicade, Prendisolone and even Imodium
Will this ever end, if Crohn's does not go away what will happen? What is the prognosis? Are we waiting for colon cancer to finish the job or is there hope?

One goo think we have found for Jane is the energy drink V it seems to get absorbed okay and have a few vitamins in it. Everything else is in the bag with in 15 minutes.

Sorry to drop this on you but I was searching, found your site and really need to vent.
Cheers,
Jason

Jason,
I do understand what you are going through. I also have a wife that has had a very hard time with IBD over the last 35 years. The ups and downs of this can be over wellming.

I do want to tell you this though. There IS a light at the end of the tunnel. My wife had her colon removed 4 years ago and she has been doing very well ever since. She can do what ever she wants, eat what ever she wants and she is in good health again. Now, thats not to say everything is fine. You see I retired at age 58 and things were going well till I was 61, I lost alot of weight and went to the Dr and they did a colonoscopy and saw a bump on my apendix and said it had to go. They went in to remove my apendix and found crohns and did a resection on the spot, 7 days later I had water coming out of my wound and yes the resection was leaking and I went septic. They went back in and fixed it but they gave me a ilyostomy and I was set, right. I didn't sigh up for this. I just retired and was starting to have fun. After 9 months with the ilyostomy bag they did a reversal and I did well for 2 months then had a flair. I'm dealing with that right now but I think the Imuran is starting to work.

I just wanted to send you a note saying that there is people like yourself that do understand what you are going through. And, that it can get better. There is no need to think that your wife will not live a complete life. At one point I was so scaried that I would loss my wife and have to take care of 3 kids by myself. Well it didn't happen and now my wife is alot better off than me.

I want you to keep your head up man. Things will get better. I know you feel so alone right now and people just don't understand what you are going through, and you feel like there is nowhere to turn to. There is, I find peace with God, I'm not a Bible thumper, I don't even go to church much at all, but that is the only thing I find that helps me.
Keep your head up man, things WILL get better. I hope and pray that your wife finds good health again and that you find peace.

Jim (Pops)

PS: welcome to the forum and keep coming back. PM me if there is anything I can help you with.

Wow, good grief! I am truly sorry that you guys have to go thru this torture. I think you must be a truly amazing person for standing by your wife, and I hope everything works out for her. Will say a prayer for your family!

Thanks for your thoughts guys, the warm welcome means a lot. It is a heavy burden to carry only made more frustrating by the lack of medical understanding and seemingly hit and miss nature of treatment.
We live in hope

Welcome A112H & I am so sorry to hear how you have struggled. My daughter is 20 and was diagnosed five years ago. She has taken most of the meds you mentioned & is in a flare now, causing her to drop out of college. It is a ruthless disease, but your wife & my daughter can beat it. Do not lose faith & continue to vent here anytime. That's what this forum is for.

Jason,
Please know that my thoughts and prayers are with you. It is sad that good people like you and your wife are suffering with this dreadful disease. This is why we need a cure.

I cannot promise you anything, but I know of people that have not responded to Remicade and Humira but have found improvement by taking Stelara, which is a psoriasis drug but is an off label drug for Crohn's. You would have to get both a doctor and your insurance company to approve it for her because it is a very, very expensive drug. I know that there are other clinical trials going on for experimental Crohn's drugs.

The ongoing option, of course, is to monitor her diet to see what helps her and avoid what makes it worse. Some people with severe Crohn's need to go on some form of liquid diet.

Wa.... sorry to see you two have to go through so much.

I can't help but do a little bit of projection when I read that and well, I am glad to see that you are there and stand by her all that time. This is amazing and yet I find your story comforting as far that there are people like you that won't give up!

I don't know if anyone has brought up the existence of vedolizumab to you. It is maybe not on the market yet but it is getting there. I know that when I spoke to my GI about it he looked thrilled and had the face of a kid looking at a Christmas tree. I guess it will be a promising therapy. He seemed to say that certain people, which would not respond to humira/remicade/cimzia had positive response to that gut-selective treatment. I don't know if the portrait is still as good as of today, I have not checked the new conclusions of the trials as recently.

We live in hope. Thankfully the pendulum will go back your way soon.
My prayer are sent your way, don't give up!

Thank you so much guys, whilst I wish I was the only one going through this it is kinda nice in a weird way to know I am not.
Things are on the improve, Jane's blood cultures have been clean for 3 days so she was allowed a home visit yesterday. This really makes a big difference to her mental state. Just coming home and getting in your own shower, laying on your own couch, it was a mild day so she was able to sit on the lawn with the dogs for a while. Fantastic to see her smile freely for a time. Down side is returning her a few hours later
Another day or two without set back and she should be able to come home
Once again thank you all for the support, I will be sure to get Jane signed up when she returns home.