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Advice for Newly Diagnosed Sufferer

ulcerative proctitis patient

recent picture of Patricia

Meet Patricia:

Hi I’m Patricia. Diagnosed with UP in April of this year (2014). I am 53 years old and a single mom to an 11 year old very active son.

Some more background info:

I advocate for animal rights, follow a vegan diet (unsure about continuing this) and foster homeless and abused dogs until they find forever homes.

Symptoms:

I am no longer in remission and have been very ill the past few weeks. I fight fatigue and headaches daily. On average I am in the bathroom every half an hour. If my employer gets upset with this I will be forced to supply them with a doctors note. Not much fun to have to tell the whole office my personal problems. Perhaps they already know if they can hear me and my noisy butt in the ladies room!

So Not only am I passing quite a bit of blood and mucus but I have contractions while sitting on the toilet. It feels like I may have a bowel movement (I wish) but then I begin contracting and large and small blood clots come out. Then the cramping begins so I go and lay down like I do whenever I can. Lately I have been having backaches as well. Not sure if that part is stress related since I am logically stressed by all of this.

Newly Diagnosed with Ulcerative Proctitis:

This bloody disease is scary, it’s disturbing and it completely SUCKS.

I am constantly fatigued. I feel lifeless and hopeless and in despair. I have been cancelling plans with a very nice guy who is interested in dating me but the last thing I feel like doing is being romantic with a new guy when I’m sitting in my own bloody shit! UGH. sorry. so graphic lol. But true.

I’ve read some articles about people having success with Vitamin E-enemas. Anyone have any experience with this?

The drugs I have been using are basically useless and completely UNaffordable.

I would prefer natural remedies if there are any. I was using hydrocortisone enemas since April but my current doctor wants me off them as long term steroid use is very bad he said. So the doctor prescribes me Canasa (675 my cost) and due to the fact my insurance sucks I cannot afford this Canasa, So..he puts me on Apriso (my cost $245) and I hate it and a week later it isn’t doing a damn thing anyway and then I hear it causes hair loss!?! A bloody ass and a bare head? What’s next. For a single mom this is not a great way to impress a man.

I am terrified that my initial diagnosis is now full blown UC since my symptoms have gotten so much worse. For me the worst part of this disease is not having any control over what is happening to my body. No matter what I drink or eat or what meds I take I cannot stop the contractions, the pain and the bleeding.

I’ve all but given up on medications. I would much prefer success stories the natural way. Does anyone have any?

I’ve read that slippery elm, aloe vera and turmeric help with inflammation.

Medications / Supplements:

Current meds:

Apriso- 4 pills daily
Hydrocortisone enema – 1 every night (I’ve stopped these due to doctors orders)
Probiotics (useless IMO)

Current diet:
Coffee (will consider stopping now)
Alcohol (not in weeks- too sick :(
Aloe juice with wheatgrass
Turmeric
Soy products
Almond milk (no dairy for me ever, I love those baby calves too much)
Vegan diet -NO animal products but considering eating yogurt and fish again.
Mostly rice and steamed veggies is what I eat. I’m scared to eat.

written by Patricia G

submitted in the colitis venting area