Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

Sarcoidosis and Colitis Warrior

sarcoidosis and ulcerative colitis

the kids:)

Wife of a 30 year old builder diagnosed with Sarcoidosis in 2012 and Colitis in 2014. Mother two amazing children. Determined that her husband live to raise them with her. Looking for the healing path.

Sarcoidosis and Colitis

Like I said, I’m a the wife to an amazing 30 year old man recently diagnosed with ulcerative colitis. My husband has only told me he needed to go to the doctor twice in the 10 years I have know him. Once was with his UC in February of this year and once was in February of 2012 when we found out he had Sarcoidosis.

We have two wonderful children and I want him around to raise them with me so I am trying to find people who have more than one immune disease. I know there is a link. I worry the inflammation is eating away at him and will bounce from organ to organ. He took prednisone for 7 months at 5 mg per day when he was first diagnosed with Sarc only to stop it because of high blood pressure and all the other fun stuff that comes along with long term pred use. When they switched to MP, but have stopped that after an on again off again year of it. The Sarc is located in his chest lymph nodes and has inflammation in his lungs. We are trying to see what a rheumy doctor might do differently if we can get one.

sarcoidosis base lungs

Chest X-ray showing the typical nodularity of sarcoidosis in the base of the lungs from wikipedia

This year my husband suffered from constipation which turned later into bloody stools. Went to the gastro and he setup a colonoscopy which confirmed he had colitis. Shocked when when we found out he needed to go back on it at 40 mg per day to help with his current flare. He has also started taking Asacol HD.

What I am hoping to find are the soldiers that have fought this fight in connecting the diseases and finding a specialist who agrees. We are currently waiting for his new gastro dr appt next week to get a game plan. It feels like finding out about Sarc all over again. To go from never having heard of an illness to needing to be an expert on it.

written by “Determined Wife”

submitted in the family members of UC’ers section

 

Adam iHaveUC guy

Adam Scheuer, founder of iHaveUC.com

Hey Determined Wife,

A moment ago, I just did a quick PubMed search for “sarcoidosis ulcerative colitis”…that was the exact phrase I entered and as is often the case, quite a few results popped up.  One of the results was for a study released in November of 2013 titled:

Association of sarcoidosis and ulcerative colitis: a review of 20 cases

Unfortunately this particular study is not one of the “Free full text” studies I explained how to access in my previous “Using PubMed Post“, but one of the lead researchers from the study did leave an email address.  So, I just emailed that person requesting a digital version of the whole study, and permission to post it to the site for the rest of you to read.  And if I end up receiving access to it, I’ll be sure to post a link (if not the actual file) here on your story.  Might be something interesting for you to read into.

Here is the abstract from the study that was available:

Sarcoidosis and ulcerative colitis is a rare association. We report a case of this association and describe its clinical, radiological and functional characteristics based on a review of the literature. This association must be recognized by the physician and must be clearly distinguished from a systemic site of ulcerative colitis or drug-related pneumonitis.

Thanks again for sharing your story and best to your fam moving forward,

Adam Scheuer




One Response to Sarcoidosis and Colitis Warrior

  1. Marlee May 30, 2014 at 3:12 am #

    I have a 6 yr. old niece who, after suffering far more than her share of respiratory infections so far in life, has recently been diagnosed with CVID (Common Variable Immunodeficiency.) In her discussions with MD’s and in her own research, my sister-in-law has read that there are a whole host of “associated conditions,” including both lung and bowel issues. Since she knows I have UC, the other day she mentioned this to me, suggesting I ask my docs about it on my next visits, which I intend to do. The part we think is interesting, and worth looking into, is (and I quote from an online source other than the one below,) “It is believed that common variable immunodeficiency is not hereditary. However, polymorphisms are inherited, explaining why many families where one individual has been found to have common variable immunodeficiency also contains individuals with the same or another immunodeficiency believed to have a similar cause. Selective immunoglobulin A deficiency and IgG subclass deficiency are two such diseases. Autoimmune diseases also occur more frequently in relatives of people with common variable immunodeficiency.” Hmmmmmm. Apparently it can be diagnosed on a blood test, and treatment involves I.V. infusions of immunoglobulin. Not that I want to be diagnosed with another disease, but if it turned out I have underlying CVID and could be treated for that to prevent my bowel issues, I’d say “yippeee!” :) Here’s a link that describes CVID briefly and lists some of the associated symptoms. Enlarged lymph nodes is also on the list. http://en.wikipedia.org/wiki/Common_variable_immunodeficiency I’m thinking it’s definitely worth checking into, if a simple test can rule it out. Just thought I’d pass this info. your way. Could be nothing. Could mean EVERYTHING for you and your family. Your babies are beautiful and definitely deserve to have a healthy daddy!! Thank you for sharing your story with us, and best wishes!

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