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Ulcerative Colitis
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Posted 4/22/2013 3:51 PM (GMT 0)
Just diagnosed last week with Ulcerative Colitis. Had colonoscopy for screening purposes (Dad had colon cancer and Mom has Crohn's). Since the procedure (which confirmed active colitis in the last 15cm), I have blood and mucous 3-4x day. But am suffering constipation otherwise without the help of a laxative. I am also experiencing fatigue and red eyes. GI prescribed Canasa 1000mg and Lialda but Lialda was too expensive under my prescription plan. I have not seen much improvement from Canasa yet. I do plan to change my diet this week and hope to see improvement. Side note, I suffer from allergies (tree, grass and non-allergic rhinitis), psoriasis, and minor joint pain.

I have a few questions...Does anyone know if the biopsy confirms UC vs. Crohn's? Apparently, my mom had UC symptoms first but her GI did a small bowel follow thru and found that it was Crohn's. Also, any gentle laxative recommendations? And has anyone experiencing fatigue found something that works? My allergist tells me to talk to my GI and my GI tells me to talk to my allergist. My blood counts were negative for anemia. Any other words of wisdom? I feel like a 40 yo going on 60.
Posted 4/22/2013 3:55 PM (GMT 0)
Hey, lovestennis. Welcome to the forum.

Biopsies can often tell the difference between the two IBDs, but sometimes they are inconclusive. The treatment of rectal inflammation is the same in any case. I would suggest that you call your DR back and ask for mesalamine enemas. The Canasa is not going to treat 15cm of bowel. Mesalamine enemas can reach all the way through the sigmoid colon and will be a much more effective way for you to reduce your inflammation.

Your GI should schedule you for a small bowel follow through as part of the diagnostic procedure, especially given your mom's history.

In my experience, once you get the inflammation under control your fatigue will go away. But you should also consider other nutritional issues like vitamin D and B-12 as possible contributors to your fatigue. Has your DR tested your levels of these?
Posted 4/22/2013 4:03 PM (GMT 0)
Welcome to HW lovestennis!

I agree with Kazbern, Canasa alone may help but probably won't treat the entire area that is inflamed. I think you would have better luck with mesalamine enemas. If you can't afford Lialda, you could try ordering from a Canadian drugstore and paying out of pocket. I orderd 3 months of generic 1200mg mesalamine oral tablets for about $100. I take 2 a day...

Here is a post about buying drugs frmo Canada if you decide to go that route
www.healingwell.com/community/default.aspx?f=38&m=2169778

I hope you get things under control quickly. My fatigue has never improved with treatment. I am always very tired :(
Posted 4/22/2013 5:04 PM (GMT 0)
Also wanted to chime in w/ the Mesalamine enemas suggestion. Will treat a larger area. Also if you are having trouble paying for Lialda...call Shire Pharm and ask for a discount card. My insurance would have me paying $60/month. With the card, I pay $10/month. Big difference! BTW, I love tennis too :)
B
Posted 4/22/2013 5:28 PM (GMT 0)
Thank you for the welcome and the suggestion for a mesalamine enema instead of the suppository. I have a call into my GI. I have insurance and they still wanted $550 for a 30day supply of Lialda. I will check out the Canadian option as well as the discount card - sounds like there has to be a cheaper way. I wondered about vitamin deficiencies. My GI ran blood work last week and said "everything was normal". I will ask her to be more specific about what was tested and about the possibility of scheduling a small bowel follow through. Can that procedure cause an active flare to worsen? I feel like I caused this current flare by having a colonoscopy. Probably had the disease for a while but was seemingly "managing it" on my own until now.
Posted 4/22/2013 6:04 PM (GMT 0)
I've flared from a scope before. It's not fun, I know. I hope that with the right meds you'll get it under control quickly. The small bowel follow through is not as debilitating as the scope prep. You will have to drink the awful barium solution, but it passes through in a couple of days and does no harm.

Are you over 50? Or did you have the screening scope early because of the family history?

Many Americans are deficient in vitamin D even without having an inflammatory bowel disease, so don't be surprised if you get this tested and the result is abnormal. It is easy to take a vitamin D capsule and keep your levels within normal ranges. Having low vitamin D can make you feel fatigued and/or depressed.

Vitamin B-12 can be insufficient if you have inflammation in the small bowel (which is not found via colonoscopy). The small bowel follow-through can detect anatomical changes like inflammation and stricturing, but will not find minor inflammation (which can also cause poor nutritional absorption and fatigue) in the small bowel. Still, it is a simple test and should get you further down the diagnostic flow chart.

As far as oral meds go, Lialda is just one of many choices. I take a generic mesalamine pill, balsalazide, that may be an option for you. Depending on your insurance and the pharmacy you use, the other name-brand mesalamines might be better priced for you. Go to ccfa.org to read more about the oral mesalamine medications on the market these days.
Posted 4/22/2013 6:12 PM (GMT 0)
Welcome to the forum!

Vitamin B complex works really well in giving me an energy boost.
Posted 4/22/2013 8:39 PM (GMT 0)
I am 40yrs old and had the screening early due to family history. Thanks for the information. I have drank the barium solution once for upper GI series. They said I had gastritis. Took the pills prescribed (can't remember what) and it cleared up immediately.

I will definitely try to pick up some supplements. My mom takes a B12 shot monthly (after bowel resection 10 years ago). Going gluten-free (after reading Wheat Belly) to see if that helps. I have read about fish oil, aloe vera, magnesium and probiotics as helpful, too. Any thoughts? I suppose trial and error works best.
Posted 4/22/2013 11:51 PM (GMT 0)
lovetennis,

Welcome to the forum.

Glad you've found us, although I am sorry you have to be a part of this terrible club.

You've gotten some good advice already.

I think it's great that you are open to trying gluten free, I would also recommend going dairy free.

You'll probably hear the words SCD and Paleo spoken of here. IMO, Paleo is much better and is anti-inflammatory as well.

IMO, there are many things you can add to your bag of "tricks" besides meds: probiotics very important ( can you get your doc to prescribe VSL #3DS for you?), slippery elm powder, l-glutamine amino acid powder.

If any of these interest you,  there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

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