Crohn's Disease Forum » Your Story » Exhausting treatment options


05-07-2017, 08:46 PM   #1
Lbuck2000
 
Join Date: May 2017
Exhausting treatment options

Hi Everyone,

I am a newbie to this forum. I was diagnosed in 2011, have had surgery for an abscess in my abdomen and 12" of my small intestine removed. Since surgery I have been on 150mg of Imrun, I tried remicade for a year and also have tried humira. So far nothing has gotten my crohns under control. My last colonoscopy and pill cam showed that my intestines are full of ulcers that are about to break through the intestine wall. I'm not sad to be done with the remicade or the humira. The side effects were awful. I am at a lost though as to what I should try next. My doctor is leaning towards surgery. My flares are constant, I'm exhausted all the time, my memory is non existent and am failing at my job. There must be something I've missed.....any suggestions?
05-07-2017, 09:19 PM   #2
woops!
Senior Member
 
Join Date: Apr 2010
Location: Virginia
Have you looked into Stelara? My GI has told me that it's about the only option left for me. It has been working well, just takes a while to work. My major side effect is hair loss. Starts with infusion and the injection every 8 weeks.
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Wherever you be.... let the wind blow free!
05-08-2017, 04:16 AM   #3
eleanor_rigby
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Join Date: Aug 2012
Location: Cheshire, England, United Kingdom

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Have you looked into Stelara? My GI has told me that it's about the only option left for me. It has been working well, just takes a while to work. My major side effect is hair loss. Starts with infusion and the injection every 8 weeks.
There's also entyvio and cimzia.
05-18-2017, 06:50 AM   #4
peterh888
 
Join Date: May 2017
Location: Geelong, Victoria, Australia
Get your hands on a book called "life without bread". It's not a medication but it could be your path to relief. Do some research on diet, don't take no for an answer from anyone. After 20 or so years of prednisolone, imuran and finally 2 years of humira I decided to take my health into my own hands. Following a ketogenic diet for the last two years has seen me rid myself of ALL drugs completely and turn my health around to the point where I believe I no longer have crohn's diease. I am going to subject myself to a colonoscopy in the next two months to check and see where its at.
05-18-2017, 08:19 AM   #5
ronroush7
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Join Date: Oct 2013
Location: vienna, Virginia

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There is also Simponi. Wishing you the best. Prayers your way.
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
05-19-2017, 07:02 AM   #6
peterh888
 
Join Date: May 2017
Location: Geelong, Victoria, Australia
*sigh* I forgot to mention that there is always more medications that only treat the symptoms and only provide relief for a short time and then once again you will find yourself searching for another "wonder" to provide relief. Please take the time to read the side effects of these wonder drugs and decide for yourself if the possible side effects are worth the short term relief. 20 years of pedisolone only masked my symptoms and higher and higher doses were needed to provide only minor relief. In my opinion Imuran was responsible for my lose of a kidney due to cancer and the prednisolone was responsible for the bone deteriation that rewarded me with a broken neck and back from a simple fall off my bike. Humira caused all types of skin disorders, constant debilitating head aches, extremely sore and stiff joints , bleeding gums and all over tiredness and lethargy.
So go ahead and look for some more drugs and follow the usual Crohn's/Colitis treatment which ALWAYS ends up with surgery or take control of your own health and think outside the square. It has worked for me and I'm very pleased to be living an actual life again. No longer do I plan a trip by researching where the closest toilets are and hoping I can make it there before I soil myself again. I have even stopped carrying spare clothes with me whenever I just go to the shops. Doctors and other people will tell you that diet has little or no effect on the diease and you should eat what you can tolerate. I say eliminate anything that causes inflammation and NEVER EVER eat it again. No it's not instant relief and yes it takes time but stick with it and I'm sure you'll find some relief.
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