I've had CD most of my life with 3 bowel resections. I'm now 60 and have a 10cm narrow section. I have spent the last 4 or 5 years on azathioprine and now Humira. Over the past few years I've been getting basil cell carcinomas and squamous cell carcinomas, on my skin. Recently, however I had an object removed from my tongue which turned out to be squamous cell carcinoma (with p16 expression). The pathologist confirmed the depth of the incision but not the margin so I may have to have that done again. I may also have CT scans of the neck. I've been thinking I *ought to* take my chances on a fecal transplant and abandon immunosuppressents?
Endgame?
- Thread starter Gunnhild
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David
Co-Founder
Hi Gunnhild and welcome 
Ugh, I'm so sorry to hear about the cancer That's terrible.
Are you still on the azathioprine or just the Humira? As it sounds like you've read, either of those does increase your chances of some cancers and together that risk is even greater.
How bad is the 10cm narrowing? Is it due to inflammation or more due to scarring? How much of your small bowel has already been removed?
With answers to those I'm happy to give my opinion on some of the treatments I'd research. I will say that either way, I am going to suggest you look into Low Dose Naltrexone. Not only is there some positive data for it in Crohn's, but it may help some cancers as well.
Ugh, I'm so sorry to hear about the cancer
That's terrible.Are you still on the azathioprine or just the Humira? As it sounds like you've read, either of those does increase your chances of some cancers and together that risk is even greater.
How bad is the 10cm narrowing? Is it due to inflammation or more due to scarring? How much of your small bowel has already been removed?
With answers to those I'm happy to give my opinion on some of the treatments I'd research. I will say that either way, I am going to suggest you look into Low Dose Naltrexone. Not only is there some positive data for it in Crohn's, but it may help some cancers as well.
According to the latest coloscopy report "the ileal surgical anastomosis contained a benign appearing, intrinsic severe stenosis measuring 10cm
All up I've lost about 90cm . I've been on pentasa since 1994, more recently azathioprine, but for the last few weeks humira only. I think the immunosuppressants are over done as I've been getting fungal infections.
The state of the squamous skin cancer in my tongue is uncertauin at this stage. I go back to the oral surgeon next week. I've been treating the skin cancers on my head with the the sap of the euphorbia peplus plant and it works a treat. Today I tried chewing some and it left my mouth a little burnt, but no other side effects. At least it lifted my spirits
All up I've lost about 90cm . I've been on pentasa since 1994, more recently azathioprine, but for the last few weeks humira only. I think the immunosuppressants are over done as I've been getting fungal infections.
The state of the squamous skin cancer in my tongue is uncertauin at this stage. I go back to the oral surgeon next week. I've been treating the skin cancers on my head with the the sap of the euphorbia peplus plant and it works a treat. Today I tried chewing some and it left my mouth a little burnt, but no other side effects. At least it lifted my spirits
David
Co-Founder
Wow, that's a tough case
Do they think removing the current stricture is a good idea?
With 90cm of bowel removed, I'd be concerned about your nutritional status as well. Do you get regular vitamin and mineral levels checked? If so, are you deficient in any? Examples include vitamin B12, vitamin D, folate, magnesium, potassium, zinc.
If I was in your situation and went off the Humira, I would make sure to hit the disease from every angle I could, not just the Fecal Transplant. There's lots of ideas on this forum but some to get you started are:
- Low Dose Naltrexone and Total Enteral Nutrition (both under the Treatment section)
- Medical marijuana if it's available in your area. It has been shown to not only help with IBD but some cancers as well. Though there is some data that shows it increases some cancer risks as well.
- Supplements such as Tumeric/Curcumin
Do they think removing the current stricture is a good idea?
With 90cm of bowel removed, I'd be concerned about your nutritional status as well. Do you get regular vitamin and mineral levels checked? If so, are you deficient in any? Examples include vitamin B12, vitamin D, folate, magnesium, potassium, zinc.
If I was in your situation and went off the Humira, I would make sure to hit the disease from every angle I could, not just the Fecal Transplant. There's lots of ideas on this forum but some to get you started are:
- Low Dose Naltrexone and Total Enteral Nutrition (both under the Treatment section)
- Medical marijuana if it's available in your area. It has been shown to not only help with IBD but some cancers as well. Though there is some data that shows it increases some cancer risks as well.
- Supplements such as Tumeric/Curcumin
Thanks David,
My Vitamin B12 is o.k as I have injections every three months. I'm taking fosamax and calcium for osteporosis. I've started multivitamins and I usually eat sardines quite often. I'll try the curcumin and turmeric.
I found one thing that helps is putting food in the blender and having it at regular intervals (when I'm flaring).
My Vitamin B12 is o.k as I have injections every three months. I'm taking fosamax and calcium for osteporosis. I've started multivitamins and I usually eat sardines quite often. I'll try the curcumin and turmeric.
I found one thing that helps is putting food in the blender and having it at regular intervals (when I'm flaring).
David
Co-Founder
What was your specific B12 level last time you were tested?
With the osteoporosis, have you had your vitamin D and magnesium tested? I can tell you're into this stuff a bit so I suggest you read about vitamin K2 as well.
With the osteoporosis, have you had your vitamin D and magnesium tested? I can tell you're into this stuff a bit so I suggest you read about vitamin K2 as well.
David
Co-Founder
It's mostly absorbed in the terminal ileum which it sounds like you don't have a whole lot of anymore.
David
Co-Founder
Both of which are symptoms of magnesium deficiency.
