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04-16-2015, 05:28 AM   #1
EricaDawn
 
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New to Forum

I just recently had a colonoscopy and my Crohn's has gotten more severe than it ever has. I have a foot of large intestine left and that is inflamed and my last blockage surgery was in my small intestine, though they also removed some large intestine too, which is now affected with Crohn's and both having erosions throughout, and also ulcers in the stomach. The bathroom problems got worse after my last surgery and doesn't allow much time to make it to the bathroom and the embarrassment of having accidents has become a reality, so I don't go out much and stay home (mainly to be close to the bathroom).

There is a new type of infusion that I am going to start once the flare up gets under control and I'm very hopeful. I'm willing to try anything that will possibly help because I've not had the best luck in the past with medicines starting with Asacol, Remicade (had allergic reactions to that), Methotrexate, Humira, Cimzia, etc. Pain medicines take the edge off but the pain doesn't go away and once the medicines wear off it's right back to where it began, and the doctors around here don't prescribe pain medicines no matter how badly in pain you are. 2013, I think I was at the emergency room more than ever in my life with pains and symptoms that were much worse than normal. Once they put me in the hospital and started running tests, it came back most of my problem was C-diff. I'd never had it before, never even heard of it until then if you can believe that after having Crohn's for so long, and they treated it to which I got better for a short time, then that's when the last blockage came into play.

I'm sorry this post is so long. This is the first support group I've ever joined and it is nice to know I'm not alone with how I feel and things I have to also deal with. I look forward to getting advice on what helps you all and how you cope with the flares and symptoms and also deal with people who can't understand what it is like to deal with the problems that can occur with this disease.
04-16-2015, 02:50 PM   #2
buttER
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My Support Groups:
Dear Erica
Welcome to the forum. I'm sure one of the moderators will introduce themselves soon enough.
If you have time take a look around the different parts of the forum, such as for C diff, different treatments, different symptoms.
It is so strange to find people in the same situation - I don't know how I would have been without the support and experiences shared here.
04-16-2015, 09:40 PM   #3
EricaDawn
 
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Thank you

I'd never heard of Crohn's, Ulcerative Colitis, none of it, until I was diagnosed. It started with bathroom issues to which the docs were looking at travelers diarrhea and I hadn't even been out of town, let alone the country lol. 3 months later the stomach pains started and a diagnosis was finally made. I'm the first in the family, that we know of, that has it, but I figure it has to start somewhere.

Hate hearing about people going through all the problems that occur from pain to bathroom habits to people misunderstanding, but at the same time am happy that we can all relate to experiences with each other that others don't understand.

"No act of kindness, no matter how small, is ever wasted."~Aesop
04-16-2015, 10:21 PM   #4
Lady Organic
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Truly crossing fingers for your new treatment Erica. Do you know its name?
__________________
''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
04-16-2015, 10:48 PM   #5
EricaDawn
 
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Thank you much Lady Organic

The medication is called Entyvio. The doc called today and I get my first infusion tomorrow. Am looking forward to it in hopes that it will help. They did say it may take a few months before feeling up to par, but if it does help, it will be worth the wait.
04-17-2015, 07:30 PM   #6
Lady Organic
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Great! let us know how it goes!
04-17-2015, 08:22 PM   #7
EricaDawn
 
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Got it done and I just felt kind of weak afterwards, which might be expected. Other than that, no probs so far. When I did the Remicade infusions, I had allergic reactions to it and they had to give me benadryl and it never seemed to do any good. This medication may take a few months before I notice anything significant, but again, I'm willing to wait that long if it helps This infusion only takes about half an hr, and they make the medicine specifically for you after u get there, so I was there a little over an hr total between waiting and getting the actual infusion
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