Introduction:
I am 47 and had to put my Master’s schooling on hold for various autoimmune issues. I am married to a wonderful and understanding woman. I am training a puppy to be a therapy dog to visit people in nursing homes and hospitals. I want my life back!
My Symptoms:
Cramping, frequent and urgent bowel movements, blood in stool. loose bowel movements and some loss of bowel control. Pain and aches with extreme exhaustion.
My Story:
I am seeing a GI Doc and was using cortememas to control the UC, but when I was told to ween down, the UC flared again. I was then placed on Prednisone. 40mgs to start for two weeks. The prednisone cleared up the UC pretty fast, and I was told to ween down less 5mgs per week. I am now at 20mgs, and have started to flare again. I am very uspet and feel so hopeless.
I have a call in to the GI Doc and left a message with his PA.
Has anyone else had a flare return after weening down from Prednisone? What was the next treatment you tried?
I am thinking that I will get put on Remicade because the Doc mentioned this before.
I am heading into some depression, I can feel it growing because the ween down from prednisone has brought the colitis to flare. I am also getting sores on my leg again. Everything autoimmune symptom that the high dose of prednisone fixed is back, the colitis, sores on my leg, and the rash on my hand. I will tell all of that to my Rheumy and GI Docs. This is going to be a long haul. I am wondering if my spring semester is in jeopardy too. Gretchen always says, “It is no big deal if you take the full year off before starting the master’s”. I still feel somewhat guilty.
I have also been diagnosed with Fibromyalgia and inflamatory arthritis by a Rheumatologist. I have sores on my leg, and a rash on my hand that also went away during the higher dose of prednisone, but are returning now with lowered doses. I had a small taste of my life being back to somewhat normal, and now it has all gone to hell.
Where I’d like to be in 1 year:
Back in the master’s program at school. UC free, and in remission. I would also like some relief from the pain and exhaustion from the Fibromyalgia and arthritis. I do not want to be so limited.
Colitis Medications:
Cortenema worked, but UC flared after ween down.
Prednisone worked, but UC flared after ween down.
Asacol not controlling UC.
written by John in PA
submitted in the colitis venting area
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I am a 47 year old (in 2012) Man returning to college for a Masters Degree in Psych, married with no children, and a new puppy that I will train to be a therapy dog to visit patients in nursing homes, hospitals, and aid in learning disability.
Have you tried Imuran ? Also some sort of probiotic ?
Hi Shahid,
As far as probiotics, I do eat Stonyfield organic yogurt which contains 6 active cultures.
Lactobacillus bulgaricus
Streptococcus thermophilus
Lactobacillus acidophilus
Bifidus
Lactobacillus casei
Lactobacillus rhamnosus
Hey John-
Just coming out of my first flare (6 weeks) after a year of remission. It sucked pretty bad but I’m coming onto the sunny side again. Remember health is there you just need to dig thru those layers.
Stonyfield used to be a good yogurt before it was bought by the big corporations. I actually tested a bunch of the commercial yogurts when I was in school last year and Stonyfield FAILED. I like the Seven Stars brand and I make my own… I bought a great yogurt maker (Euro-cuisine $30) and it makes delicious yogurt with active cultures (I tested it). Feel free to email me if you want more info about it.
tranter.allison@gmail.com
The joint pain from the inflammation is the worst and I know fibromyalgia is a bitch too. The UC is bad enough right?
Do you do yoga or meditation? It has helped me immensely with the depression and anxiety.
Also- I make sure and sit in the sun for at least 20 mins/day and take 1000mg Vitamin D.
I didn’t like prednisone because of all the side effects. Maybe one of the other drugs will help. Good luck.
Allison
Everything Allison said is totally on point. For the aches, I like to load up on healthy fats, such as real butter, eggs, olive oil, avocado, coconut oil, natural red meat…it helps lubricate the joints and heal the guts. Probiotics are a must, Omega 3’s. Just a few suggestions.
Prednisone is the most depressing drug I have ever been on. Coming off of it is probably contributing to the depression! I wanted to rip my skin off when I was on 40 mg 3x/day. UGH! I do not miss that at all!
Be well,
Richele
You never mentioned much about your diet, but are you eating gluten products? If so, that could be the reason for the rash on your hands. Also, a diet with gluten can irritate the bowel, a gluten-free diet is best for anyone with autoimmune diseases. Besides UC, I also have psoriatic arthritis, psoriasis, and chronic fatigue. Stopping gluten helped the foggy brain part of my fatigue but there are other causes to my fatigue and yes, I suffer from depression,too, but it’s not clinical so anti-depressants do not work for me. I’m also in a flare, mild, but still it sucks! Good luck to you, Paul. Oh, yes, nice photo, it’s always nice to see pics of other people who get on this site.
Hi,
Steroids only seem to work while you are on them. Your UC is steroid dependent, as most people’s UC is. Short term band aid…that’s all. All of the meds used to treat UC seem to be short term only. There is really no good news on the medication front.
The good news is coming from the natural approach! Probiotics, L-glutamine, natural anti inflammatories like fish oil and astaxanthin. Dietary changes really help in some people.
Do not despair! I am in remission with probiotics ans L-glutamine powder. No kidding! I went off all meds because they all eventually stopped working, and just made me feel sick.
Cheers:)