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Crohn's Disease Forum » Your Story » What a long Strange trip


10-17-2017, 01:21 PM   #1
Billydubs
 
Join Date: Oct 2017
Location: Hidden valley lake, California
What a long Strange trip

Hi I'm new to this site, but not to Crohn's. I have spent many years battling a severe case, went to Rhemicade and had success,but it began to get less effective until it was too hard on my body.After I stopped I began to develope seizures. Now I am on to anti seizure meds. I have always ate healthy since getting Crohn's over 20 years ago. The problem now is the seizure meds have my Crohn's sooooo flared up that I have lost 35 lbs.in the last 4 months.HELP, I would love some answers. ...... I think I just am done. I am withering away!
10-17-2017, 02:42 PM   #2
ronroush7
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Location: vienna, Virginia

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Welcome. I am sorry for what you are going through. I hope the doctors can find some other anti seizure meds that won't cause your Crohn's disease to flare. Keep us updated
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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.
10-18-2017, 12:30 AM   #3
wildbill_52280
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Some things I do that helped me over the years. http://www.crohnsforum.com/showpost....18&postcount=5

Also if you haven't heard of the experimental treatment, fecal microbiota transplant, see my link below this post.
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http://www.crohnsforum.com/showthread.php?t=52400
10-26-2017, 04:29 AM   #4
valleysangel92
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Hello, welcome to the forum

Do you mind me asking what treatments you have tried so far?

In the short term, you may require a short course of steroids to get things under control, I'm not sure if you can have pred with seizures, but there is another steroid called budesonide which has much fewer side effects which may be suitable for you.

If you haven't already tried it, you could ask your medical team about humira, which works the same way as remicade, it may not be suitable due to your other problems, but it won't hurt to ask about it. Other biologics that may be an option are stelera or cizima.

If you find that this isn't something you can use, you could enquire about vedolizumab (entyvio). This is a newer biologic that specifically targets the gut, its not quite got the success rates of the other biologics, but I do know of a few Crohn's patients who have responded really well to it. I've been on it for a year now and although I still have problems I'm definitely better than before. Due to the way it works, it has slightly less risk than the other biologics, so your body may tolerate it better, and it also has a much better long term safety profile.

With regard to the weight loss, you might benefit from using a supplement drink like ensure, which can be used as a sole source of nutrition if you're really struggling to eat or as an addition to your diet for some extra calories. In the UK we have to have these prescribed by a dietitian but I think in the US you can get them from a pharmacy.

I hope this helps a bit, please let us know how you're getting on and please don't hesitate to come back if you have any more questions or concerns or if you just want to vent. We're all in the same boat here and even though we don't have all the answers we will do our best to help and at least try to point you in the right direction. There is no such thing as a silly question and no one here will judge you if you're finding things difficult.
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
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