What do you do when you've tried everything?

[Lilyw]

Hi to all,
I am a 38 year old who has had Crohns for 8 years. Mine started in the same way as most people - with the diarrhea, stomach pain and weight loss but my gastro specialist had told me that unlike most Crohns patients I have a particularly vicious form of Crohns. I have tried all the drugs from the azathioprine through to Humira and Infliximab but I am yet to have any period of remission. I have had a sub-total colectomy and a metre of small bowel removed to try and control the disease, neither of which worked, the Crohns just came back wherever the surgeon joined me up.
Then on October 29th 2011 I was helicoptered to hospital with a perforated bowel in two places. Since been told if I waited another hour I wouldn't be alive. I was rushed into emergency surgery and after a month in intensive care and another month on the ward I was finally allowed to return home minus another 15 cms of small bowel , an ileostomy and with a iv line in my chest and total parenteral nutrition every evening for twelve hours.
I am about to go back to hospital to have a reversal of the ileostomy but my surgeon & gastroenterologist have warned me that theres a high likelihood the Crohns will reappear - possibly as soon as one week post surgery! There is nothing left in the way of medication for me to try so I will be relying on my own body's ability to hold the Crohns at bay (which scares me to death!).
I feel totally defeated by this disease. I have been unable to work for the past two years because of the illness, I am unable to have children and my body is a shadow of my former robust self. I'm not quite sure what to do when there is no hope left in the form of a treatment? A least when you're trying a new medication there's that little grain of possibility that THIS will be the one that will work and put me in remission. I don't have that anymore and I'm not sure what to do next....

 

[Jennifer]

Have you tried multiple combinations of different drugs? I know they tried 4 different ones (Prednisone, Entocort, 6MP and Asacol before my resection). May not have worked for me but could possibly work for someone else (maybe not that exact line up of medications though). There are a lot of members on the forum who have stomas and live out there lives symptom free. Check out the subforum here: http://www.crohnsforum.com/forumdisplay.php?f=46 What has your GI suggested to you?

Welcome to the forum.

 

[mickey]

I am so sorry you have been through such an ordeal. Can I suggest you research and read up on building up your immune system and help your body heal? I have been amazed how many natural things help various parts of the body and can help improve overall health. For instance, I recently had a stomach infection and found that taking a daily capsule (could not stand chewing it raw) of true garlic nipped it quite quickly. I ws told it is a natural antibiotic. The first day I had already felt a reduction in inflammation. Daily probioticis also helped calm the belly and process foods easier. Whatever you can do to keep it calm and happy (plenty of ginger tea, yoga)...do. Good luck on your journey! There is hope!

 

[KWalker]

I'm sorry that you have to go through that like others have said though, have they offered you combinations of medication or does it seem like its trial and error and if one thing doesn't work, they just try the next? I hope you don't ever feel like this is your fault or that its something you're doing because having crohns, we need the help of doctors with this. Is it a possibility to try and get a second opinion from another doctor?

 

[Lilyw]

Thanks!

Thanks to everyone for their advice and support. In answer to your questions yes, I have had a second and third opinion. I've actually seen five different gastroenterologists in my Crohns journey. I have tried combination therapy with a variety of different meds and have travelled down the natural therapy route including diet, supplements, juicing, acupuncture etc.. I have even had my stem cells harvested because one of my doctors felt a stem cell transplant (2009) would be my best option. Unfortunately because I live in a very small country the health board wasn't prepared to risk doing a treatment that hasn't yet been proven with longitudinal studies results or been done in Australasia (I was really keen to go ahead with this but unfortunately wasn't my choice.
I know it seems defeatist to be so down about my situation but after fighting this for so long I am so worn out and before I always had a glimmer of hope in the next medication or treatment option. I just feel I've run out of choices. I'm sure it's just one of my "poor me" days (you know those days you just feel its unfair and why me etc...).
I really appreciate that there is a forum like this where I can vent my frustrations, learn from others and share the humour associated with having IBD. thanks everyone!

 

[KWalker]

Its perfectly normal for you to feel like this, and were all allowed to have the "poor me" days. We've all been through hell and back and that's what makes us the strong people we are is knowing that we deal with this every single day, yet we continue to fight. I was hoping you would of said you've only been to one specialist so we could suggest getting a second opinion but it shows that you're persistant and dedicated because of the fact you've already seen a hand full. Just hang in there. I know it gets tough sometimes and we all have our days where it feels like nothing works for us but things will get better eventually.

Were so glad you found us and you can always feel free to let our your emotions here. We all know what you're going through, and would love to help in any way we can.

 

[KazT17]

Hi Lily,

I am so sorry to hear about the rough time you have had. I am not able to have any meds either (tried em all) and I have an ileostomy. I also have been told the Crohn's will return if I have a reversal. I am not sure if I have understood correctly, but why are you having the reversal? I am more than happy living with my ileostomy, especially if reversing it will bring the Crohns back.

Love Kaz xxx

 

[Lilyw]

Hi Kaz
Thanks for your response. My ileostomy was done as part of an emergency procedure when my bowel perforated in Oct 2011 so it was never designed to be permanent. It was done in the process of them washing my abdomen out from all the things in there that didn't belong and my surgeon has said it was so touch & go of me surviving they weren't too focused on the placement of the stoma for long term comfort & function. it is very high up on my abdomen (apparently not the ideal placement for it) right in the crease of my waist, the stoma has receded below the skin level so every time the bag is being filled the contents leaks onto the skin and as a result it is so ulcerated, bleeding and stings most of the time. The other problem I've had is almost constant leakages. I've tried every bag, seal, cream, trick etc that the stoma nurses (& forum members) can think of and nothing has worked. Ive taken to sleeping on my couch surrounded by towels because I got so tired of having to wake in the middle of the night cover in poo, have to shower & change my beautiful white cotton sheets (which are stained for good) sometimes this would happen more than once. So all this, combined with the social impact having a leaky bag of poo that is constantly hurting and threatening to release its contents everywhere (& has done on a few occasions) has made me decide to have a break from the bag. I've found there is no routine to my ileostomy either. No matter what I eat or when I eat I flows constantly making changing it a bit of a nightmare.
I know eventually in my future, whether it be near or distant future, I will end up with a bag but once I make that decision it will be a permanent operation so I want some time to come to terms with that. I have had other Crohns friends who have had ever successful bag experiences but unfortunately I haven't been one of those lucky people.
Still maybe the next one will work better, I just hope I have some time off before I have to repeat the process. What's another surgery when you've had so many?

 

[kjkenny45]

Lilyw,

My heart goes out to you for what you have had to experience. I have a suggestion and I hope it works for you, which is a different medicine. The medicine is called "LDN" for "Low Dose Naltrexone".....

It is a compound medicine, currently in research for crohns, MS, etc.....The main medicine has been FDA approved 30 years ago for a different purpose. Some folks have had a complete 180 degree reversal of conditions like MS.

Please look it up online and see for yourself. Ironically it is inexpensive (say $30 per month) so my assumption as to why it is not widely used is the low price. Once big pharma finds a way to market this to crohns patients, then add a zero. Cost is meaningless if it works for you. I will be trying this medicine over the next 60 to 90 days.

Hope this finds you and actually helps out!

Best wishes!
Kevin

 

[Lilyw]

LDN not for me...but thanks

Hi Kevin and thanks for the suggestion. LDN looks really promising as a treatment for Crohns - the more options out there the better the chances of treating it early. I had a quick search on the net but sadly it's not the drug for me...
Unfortunately on top of the Crohns I also have a condition called Klippel Trenaunay Syndrome which is a very rare congenital vascular anomaly that is totally unrelated to the Crohns but causes me several symptoms including chronic pain for which I take opiate pain medication. Naltrexone blocks the opiate receptors in the body so cannot be taken by those who take any form of opiate medication. KTS has no treatment only a lifetime of management of the symptoms and it is also a progressive condition so it gradually deteriorates so I'm not looking at being off pain medication anytime soon.

I really do appreciate the suggestions though as at this point I am willing to try anything possible to try and achieve remission - even if it's just for a while.
After I posted my first message on the forum I did some net research to see if there were any new drugs being trialled that I hadn't tried yet. I found one called ustekinumab which was originally a psoriasis medication. I emailed my gastroenterologist about it and great news, a trial is starting soon in my hospital. He said he's not sure that I fit the criteria for the trial but he's going to look into it.
So there you go, you all said don't give up and a little glimmer of hope arrived!

Thanks for your kind, supportive words & messages today. This wasn't a good day for me but with all your help I made it to the end and feel much more hopeful about what next for me. Just sharing with others who know how challenging it can be makes a huge difference as it can be pretty lonely battling this giant on your own.

Lily x

 

[Angrybird]

Hello Lily, just wanted to say welcome to the forum. :bigwave: I am glad you have joined us and that you have already seen how wonderful and supportive people can be here. I really hope you are able to go onto the trial and that this perhaps will be the turning point for you, please let us know how this goes.