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Newly Diagnosed with IC

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Ulcerative Colitis
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Posted 1/15/2014 2:02 AM (GMT 0)
Hi Everyone,

I'm sorry if this post seems long but it felt good to type it all out so enjoy if you get through it all! smilewinkgrin

I live in the Greater Toronto Area in Ontario, Canada and I am 31 years old.

After 4 years of intermittent problems with going to the bathroom and blood and mucus and all the other fun things that im sure everyone knows about here, I finally found a family doctor that cared! I have been dealing with years of stool samples, roid creams, psyllium husk, diagnosis of fissures and Doctors basically shuffling me along and on to the next patient. I was referred by my new and caring family doc to a GI doctor here in Ontario after a 2 month wait. At my first consultation and during a 5 minute conversation he basically diagnosed me with UC without even examining me. The funny thing was that he said quitting smoking 4 years ago is what caused my problem shocked .

He sent me for an initial x-ray and after we got the results (same day) started me on Mezavant (4800mg/day) and a Salofalk enema every night. He also scheduled me for a colonoscopy at Brampton hospital the next week. The actual scope was easy, the diet of laxatives and gatorade the day before was horrible! I didnt see the Dr immediately afterwards but the nurse said they found UC in the lower 3rd of my colon and rectum and to continue medication and book a 1 month follow up appointment.

In the last month the medication has worked great and I have FINALLY been able to enjoy some regular poops with no blood. I guess I am lucky that the medication has worked quickly and fast. Unfortunately the Mezavant has caused some side effects, mainly I have extreme dry skin under my eyes and it looks like I have 2 serious eye infections. I went to my family doc and he prescribed Corisone cream because he thinks I have an allergy to the medication.

I had my first follow up appointment yesterday with the GI doc and he tells me that during the scope he also found Canker sores in my small intestine. So he has changed my Dx to Indeterminate Ulcerative Colitis which basically means they arent sure whether I have UC or Crohns and that I might have symptoms of both. I also mentioned the problem I have with my eyes and that I have had psoriasis since I was very young. He said that psoriasis and IBD are linked and that he is not surprised I have both diseases. He says that the problem with my eyes might have been caused by the carrier agent in Mesavant and he has now switched me to Asacol 800mg 3 pills/twice a day. Also prescribed me another month of the Salofalk enemas and a supository for after the enemas are done.

So that is where I am now.. I have a lot to learn about myself and this disease in the years to come. I look forward to sharing and learning from everyone else in this forum. ttyl!
:-)
Posted 1/15/2014 2:09 AM (GMT 0)
Welcome to our world, Chris, but I'm sorry you had to join us. You'll get a lot of good ideas here. Let me just say it sounds like you've landed with a good PCP and a good GI, so that's half the battle.
Posted 1/16/2014 12:42 PM (GMT 0)
Chris,

Welcome to the forum.
Sorry for the diagnosis.

I would suggest you look into LDN, low dose naltrexone, which put me in remission.
There is a post on the UC REsources page all about LDN, check it out.

There are 2 studies done by Dr. Jill Smith of Penn State on Crohns patients going into remission ( quite a high percentage i think if my memory serves correctly around 77-88%?)

Once you read the post, if you need more info, feel free to email me.
Posted 1/16/2014 2:06 PM (GMT 0)
Welcome to the forum. Sounds like you are on a good treatment plan.

Many of us have other auto immune issues along with the UC. :( My UC kicked in after quitting smoking and having a baby. Go figure.

The biggest thing I will stress for you is to not go off of any of your meds even though you feel better and don't have symptoms. You can taper them down some but the oral shouldn't be tapered down for quite a while. After one year I finally tapered my oral meds down. Rectal meds I did every other night for quite a while and now I am at 2-3 times a week. If in tapering you notice symptoms returning bump it back up.
Posted 1/16/2014 8:14 PM (GMT 0)
Welcome.

q
Posted 1/17/2014 3:17 PM (GMT 0)
Thank you for the nice welcomes!

@sherbear46 - thanks for the good advice. This is the same advice my GI doctor told me. He compared it to peaks and valleys. He said you dont want it to peak too much because similar to battling a flu or cold your body gets better and better at fighting off the disease, even though your body is attacking itself :( So if you let it peak more often it causes more and more inflammation. It is so tempting to skip a night of the enema and so forth but im going to be vigilant!

@insofla Ive read a few of your posts about your nutrition plan and I find it extremely interesting. I already take L-Glutamine and Whey Protein as part of my workout regiment so it is great to hear that the glutamine specifically has good healing benefits for the digestive system. I looked into the Dr Mercolas (sp?) products available but unforunately they dont ship a lot of them to Canada due to border restrictions :( I am in the process of trying to find the Floracor in my area. My next appointment isnt for 2 months but I am goign to see if the VSL #3 is available for prescription in Canada. Thankfully my Wife has a good drug plan and most thigns are covered 100%

Food is a passion of mine and it is going to be very difficult to change my diet and exclude certain foods. It certainly isnt something I am going to do right away but I am going to try and incorporate as much as I can.

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