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Frustrating disease

hello all!

I was diagnosed with Crohn's-Colitis about 11 years ago. At first, doctor thought just UC, but I soon developed other symptoms. Disease is entirely within my colon and rectum. I've had limited success with all the usual meds over the years - Remicade, Entyvio, Humira, oral and rectal corticosteroids. Stelara worked the best and longest, but now it's efficacy seems to be waning. I just started on Azathioprine. I've been in pretty bad flare since July. Constant bowel movements, up all night, blood mucous, cramps, the works. I finally had to put in for FMLA, which is about to run out. I am lucky enough to have an office job, but even that had proved difficult. I have no energy at all - from lack of sleep, anemia, anxiety. I had a couple of accidents at work. Unavoidable. As we know, you can go from "fine" to the "poop is coming out" in about 5 seconds. Embarrassing, and fodder for the jerks that seem to be everywhere in the world we live in. What is wrong with people? My life revolves around this disease - "where is the bathroom? will I make it? do I have spare clothes? Can I go to my daughter's recital? Will I be able to sit near the end of the row? What kind of permanent damage has been done to my colon by this disease? How about to my liver from meds? All of this has my head spinning constantly. Additionally, I went from a very active to a very sedentary life. I was an avid runner, 5Ks/10ks every weekend, one or two marathons a year. Now I do nothing. and have gained almost 100 lbs, which also affects my health.

I read so many other stories, and I know I am far from alone. I am lucky, in that I have a workplace that is accommodating. Other jobs, other workplaces, I probably would have been fired. Can't really afford to go on disability or retire yet, if that was even possible, and put even more burden on my wife.

I guess I'm just venting, I'd like to know there is hope for this and so many other auto-immune diseases.

As far as azathioprine, can anyone comment on their experience? I know it takes a while to have an effect. I've been on a 100mg dose 3 weeks and holding out hope. I'm 6'3., 295, so he wanted to start me on a higher dose. Doc has kept me on Stelara, hoping that once I am in remission, we can try to stop the azathioprine.

I'm also considering acupuncture. Anyone tried this? Maybe just help me with the sleep and anxiety.

Thanks for reading, thanks for the support!
 

my little penguin

Moderator
Staff member
So how often do you take Stelara ?
How long have you been on Stelara ?
Every 8 weeks at 90 mg ?
or every 4 weeks at 90 mg ?
Most kiddie Gi ‘s won’t combine aza with biologics due to fatal T cell lymphoma risk
They tend to lean towards methotrexate instead
Not sure on Adults ….
My kiddo takes Stelara every 4 weeks at 90 mg as well as methotrexate.
He started it in august 2017
In theory he will be an adult at the end of the year and has been dealing with this for 11 years (age 7 was dx )

Can they give steriods as a bridge until the aza kicks in ?
Formula only (EEN ) until aza kicks in ??
 
Stelara, 2 yrs, 90mg 8 wks
GI said no problem with Stelara, stay on it for time being.

I go on an off steroids. Usually oral prednisone 40-30-20-10 over 4 weeks. That helps - somewhat - but of all medicines, this is the one my dr is always reluctant to put me on, especially for more than 4 weeks.

I don't like being on prednisone, I lose my filter, become irritable, and appetite goes out of control.

My heart goes out to a child with this disease - or any serious illness.
 

my little penguin

Moderator
Staff member
You can ask Gi to up the Stelara to every 4 weeks
They did this for my kiddo and made a huge difference in symptoms
Fecal cal went to normal
Bm ,abdominal pain etc…
Definitely worth asking about

pred can’t be used long term due to osteoporosis,cataracts, diabetes ,adrenal insufficiency
All common things that happened when pred was the only drug available for treatment at the time
 

Catherine

Moderator
The Aza dose seems low. My daughter highest dose of Aza was 150 mg aged 16 and about 50 kgs.

There is also a blood test to check Aza levels.
 

dianasgarden

Diagnosed July, 2021. Ridiculously new at this!
Location
US (east coast)
Sorry you are having a rough time. Do you have access to budesonide, the gentler, milder, more GI- targeting version of oral corticosteroids? Far fewer side effects from it. (I know it is sometimes cost prohibitive; I am taking it now and am fortunate that my insurance covered it).
 

Lynda Lynda

Member
Location
Arizona
Sorry you are having a rough time. Do you have access to budesonide, the gentler, milder, more GI- targeting version of oral corticosteroids? Far fewer side effects from it. (I know it is sometimes cost prohibitive; I am taking it now and am fortunate that my insurance covered it).
I have Health Insurance and my Budesonide costs me $95 a month. I live in the USA. I checked prices in Canada, but the cost was not lower enough to really try to buy it there. I get Tier One and Tier Two medications for free from my Health Insurance mail order pharmacy, but I have 2 medications that are higher Tiers, making them more expensive.

Take Care 🦋
 
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