Living with Crohn's and an Ileostomy: Seeking Support

I have a permanent ileostomy due to Crohn's Disease. Looking for others who are in the same boat. I struggle with flare-ups both intestinal and extraintestinal (uveitis/iritis, SI joint pain, fatigue etc.) Was on azathioprine for a few years, that gave me acute pancreatitis and almost killed me. I started Humira and my Crohn's got worse plus horrible side effects. Now I take LDN, and though I still have flare-ups but they are nothing like before, and there are no negative side effects. My ileostomy was an emergency surgery. It had to be done in two parts because my uterus and some other stuff had to be removed and they needed two surgeons. The Barbie butt surgery came later. Later needed stoma revised because there was too much scare tissue left from the fist surgery. I weighed less than 80lbs, needed blood transfusions constantly, IV antibiotics, TPN, and some other stuff I don't remember because I was also on massive amounts of morphine for the want to die pain. Spent two years in and out of hospital. Still end up in the hospital at least once a year since then. Just when you think everything is fine, whammo. Definitely have some hospital PTSD. I have eliminated gluten from my diet and find that makes the biggest difference. I am coping with my ileostomy, it saved my life and life is in many ways easier now than when I had a colon. But, the unpredictability and overall impact on my body from Crohn's is too much at times. I won't go into my experiences with gastroenterologists, it would involve too many expletives. I have come a long way and have learned a lot, gone to therapy, read a lot on the subject, but, well you know if you are in the same boat. Like with so many struggles in this life it is important to know that we are not alone. I could ramble on... 

No, thanks to sites like these, we are definitely not alone! 

Same here with the permanent ileostomy due to Crohn's, but *touch wood* apart from the occasional uveitis/iritis, I feel the disease has buggered off for good since my surgery 10 years ago, I realise that statement may come back to bite me on my non-existent arse in the future but I believe in accentuating the positive.

Totally agree about the drugs used to treat Crohn's, certainly don't cure it but just mask the symptoms and end up giving you a multitude of other diseases such as renal failure, liver disease, skin cancer, and the list goes on.  Before my surgery my gastroenterologist tried to get me to take Humira but my lovely pharmacist gave me a two page printout of the possible side-effects and the answer was a resounding NO!  

One of the best things about the surgery for me is I have rarely had to visit a doctor since (and yes I realise how lucky I am in this regard and am grateful for it) apart from the occasional blood test and blood pressure check up.

I also agree about the gluten free diet, even though I like the occasional Subway, too much bread/wheat products make me feel bloated, I often think there is a link between coeliac and Crohn's, both involving the small bowel but I'm no expert (just type medical reports where I often see the similarities in these diseases).  High protein diet works for me with magnesium and vitamin B supplements thrown in, both which can alleviate the lethargy.

And ramble on as much as you like newnormal (great profile name), because you are definitely in good company!

Cheers,

Jo 

 

 

 

Hi all I was put on azorthiaprine also and it knocked my sox off. damned near killed me as the doc. said stay on it and the body will get used to it(NOT) so he petitioned the ins. for remicade and they said no so then came humira and the ins. said ok for that but that didn't work so my next visit with the gastro. doc. I said no more meds to let my body recover from surgery and he agreed to my surprise. I also have problems with my eyes, they,re bloodshot and vision is off and my glass,s don't help.

Thanks guys, you made my day! I love to hear real stories from real people instead of all the ridiculous and dangerous hype sponsored by big pharma. And why, oh why do they still prescribe azathioprine? My husband says it's population control, and he's only half joking. And gluten is a problem for almost everyone I have met with this disease and many other autoimmune diseases. When I eat anything with gluten within 24 hrs I have pain that lasts for days and keeps me in bed. I was told by the docs that it was nerve pain and prescribed all kinds of drugs. 

JMC so glad to hear that you are doing so well. I have hope that I will get there too. You have an awesome pharmacist. I eat a high protein diet too and that does my body good. Supplements are totally necessary as we don't get enough from just food, due to the quality of the food and also having some missing bowels. I am seeing an integrative medicine doc and he has helped me a lot with figuring out what supplements to take. 

Hey Ron, good for you that you stood up for yourself! That can be really difficult when you are sick. I got so tired of the BS from the docs but I needed help so I did my own research and found LDN therapy. LDN(low dose naltexone) has changed my life. It is an inexpensive generic immune modulator (not a suppressant) that has been used to treat Crohn's (and other autoimmune diseases) for decades. ldnscience.org and ldnresearchtrust.org have some great info and you can find a prescriber in your area if you're interested. The integrative medicine doc that I see now has lots of refugees from the mainstream med fiasco. I still have flare-ups but since I started taking LDN, along with supplements and diet changes, life with Crohn's is more bearable.