Long Time Reader, 1st Time Writer!

j with dogs fullIntroduction:

Hi! I am a 34-year-old wife and mother of a 3 1/2 year old. I suffer from Ulcerative Proctitis – one of my 4 current diseases. I also have a love of dogs, including my 2 small pups. Originally from Chicago, I’ve lived in the tri-state NYC area for 8 years now (just moved to Wayne, NJ). I am generally an upbeat, happy person, but this colitis just pulls me down. I also suffer from Multiple Sclerosis (MS), Common Variable Immunodeficiency (CVID), Diabetes and have a brain aneurysm.

Some more about me:

Hobbies: Dogs! Sleep! Chicago White Sox baseball and Chicago Bears Football! Watching TV! Reading! Oh, did I mention sleep? I don’t get much sleep thanks to my son, but he is the best thing ever. Except when potty training. Not so much fun!!! lol

Although I’m not working right now, I worked in radio for 12 years and fell into PR. I was living my dream job – working in an animal shelter – for a month until a HORRIBLE flare made me quit the job. Ugh….And I haven’t worked since.

Symptoms:

I am currently in the end of a relapse. Although it’s proctitis, I think it’s the same symptoms. Cramps, living on the toilet, blood, etc. The blood, thankfully, stopped after a week on Prednisone. However, I was having fevers of 102 degrees for about 30 hours. Went to the ER and found out that I had a Urinary Tract Infection (UTI). Went on Cipro and the fevers stopped. However, when I was in the ER, the doctors did that barium scan where you drink a gross, think drink and wait 2 hours for a CT-Scan. The drink set my bowels off worse than before the drink!!! Ugh. Now, due to the antibiotics and prednisone, I have a yeast infection. TMI, I know, but how can we really gross each other out at this point? :)

Long Time Reader, 1st Time Writer!

Well, I was diagnosed with Ulcerative Proctitis probably around 6 years ago. I didn’t think much of it. Just had blood in the stool, went to the doctor and got a colonoscopy. Sure enough, I had UP. I was put on pills and have been taking them ever since. I had previously been diagnosed with Multiple Sclerosis a few years before, so I just chalked it up to having something else! I went into an extreme flair in the spring, after having hemorrhoids surgically removed. I was in the hospital for 8 days. It took about 4 months for me to fully recover.

Now, after a big move, I went into another flare, although not as bad as in the spring. Both times, I had IVIG (Intravenous immunoglobulin) before the flare. (I get IVIG every 3 weeks due to a low immune system..Common Variable Immunodeficiency, or CVID). I am wondering if there is a link between to the two or if it’s coincidental. My GI says IVIG helps the colitis, but sometimes I wonder! Does anyone else here have immune issues? Or does anyone else have MS or even diabetes, too? My sugars are super high due to the prednisone, which is a common side effect.

Also – what are your thoughts about probiotics?

My GI just told me about getting on Align

so I can stop having what I call “rabbit turds!”

Hope it’ll help.

Last question – do you ever feel alone? I feel very alone with this disease. My husband is amazing, but it’s so hard without any family around. (They’re all in Chicago.) He doesn’t quite get it, as I feel like no one quite does!

I wish I was working again, but it’s hard to commit while being so tired and fighting my various diseases. I am not in a wheelchair or anything like that. Just a lot of invisible symptoms!

Medications / Supplements

Medications: Colazal (3 pills, 3x/day)
Prednisone – going down …should be off it shortly
Protonix
Novalog
Lantis
IVIG
Rituxin (for MS)
Vitamin D
Lexapro

written by Jennifer S

submitted in the colitis venting area





5 Responses to “Long Time Reader, 1st Time Writer!”

  1. AdamDecember 17, 2013 at 5:43 am #

    Thanks for sharing your story (Finally:) Jennifer!!

    Also, thanks again for including the picture of you with the dogs:) (Need more dogs here IMHO)

    OK, probiotics, well, there are for sure some probiotics experts here on the site. (I’m not one of them as I don’t take any other than that which I get from the foods I eat such as raw sauerkraut which is a great source of them. here’s a link to that post:

    http://www.ihaveuc.com/the-whats-up-with-sauerkraut-and-digestion/

    But, Bev, who is the infamous probiotics queen of iHaveUC has had excellent success with probiotics, and I think there are now hundreds if not thousands who have followed in her steps with some positive results. Here’s a link to the stories Bev’s wrote:

    http://www.ihaveuc.com/author/bev/

    I wish you the best, and thanks so much for keeping the positive spirits up!

    -Adam

    PS here’s the link to the probiotics survey we did in the recent past with about 130 participatns: http://www.ihaveuc.com/129-person-ulcerative-colitis-and-probiotics-survey-results/

  2. Polly
    PollyDecember 17, 2013 at 7:29 am #

    Hey Jennifer,

    Sorry to hear about your current troubles!!! Things will get better!
    I am pro-Probiotics!!! I would not recommend Align, though… if you take a look at the “other ingredients” on the label… it’s basically a chemical shit storm that might cause you even more problems… :P It’s also owned by Proctor & Gamble if that tells you anything… I take Primal Defense by Garden of Life and many people take the Renew Life brand, I think. You could also do some Fem-Dophilius to get rid of your yeast infection and repopulate all the good bacteria that the antibiotics wiped out.

    Has your doctor talked to you about LDN (Low Dose Naltrexone)? I personally do not have experience with it, but some people on this site have written about it in the past… I also have read that many people with MS are taking it and it is working wonders for them… so maybe… you could “knock out two birds with one stone” or however that saying goes… it might be worth looking into.

    I follow an anti-inflammatory medicinal diet… and it’s working for me! It’s definitely difficult at times… but… knock on wood… As of this week, I am remission for one year – symptom free!!! HURRAY!!! I take an arsenal of probiotics, Vitamin D, fish oil, and a few other things… but as far as diet goes… NO GLUTEN, NO SOY, NO CORN, no peanuts, no alcohol, no carbonated beverages, almost no sugar or fructose… limited amounts of organic dairy, lots of wild salmon… and as much as possible, I buy all organic. What works for one person doesn’t always work for another, but most of the reading that I’ve done… all holistic docs, naturopaths, herbalists, etc recommend a gluten free diet for UCers.
    I don’t have any personal experience with it either, but if you see an herbalist, he/she will probably put you on Boswellia (powerful anti-inflammatory herb) and glutamine. Over a year ago when I was in a flaaaaaaaaaaaaaare and had been bleeding for months, I started glutamine and 3 days later the bleeding stopped… So… of course you would have to do some research with all the meds you are taking because I don’t know about contraindications, but glutamine is an amino acid and for the most part they are pretty harmless.

    Hang in there, you are not alone! And your husband will come around… maybe you should have him read Adam’s book “Feeling Crappy to Feeling Happy…” that might help him understand a little bit what you’re going through. Adam also posted a link to this article on Facebook last week: http://www.salon.com/2011/04/26/when_nature_calls_mortifying_disclosure/
    and I thought the article was extremely well-written. We UCers can all relate…

    Sending hugs from Minnesota! Send updates and let us know how you’re doing!
    Polly

  3. bevDecember 17, 2013 at 3:31 pm #

    Hi Jennifer!.

    Welcome ‘home’. We are all one big happy (lol…) UC family here!!

    Like Adam said above, please read my posts on probiotics…what do I think of them??? They literally SAVED me…BTW thank you Adam for linking my post(s)….it is hard typing my ‘regimen’ over and over…not that I mind, but I make a lot of typos because I get so geared up.

    Cheers, and happy holidays:)

  4. AndyDecember 17, 2013 at 5:19 pm #

    Really sorry to hear about your problems!

    UC and MS have a co-morbidity, something like 10% of UCer’s have MS or maybe the other way around. I am worried about it myself, as I did a genetic test on 23andme (dot) com and found that I had some risk for MS as well as UC.

    Have you heard of Dr. Terry Wahls? She has a diet that helped reduce her MS and they are running studies. Give her a quick google.

    Also there was recently a study linking MS to a toxins from a bacteria that is not usually present in the human gut. The result was that researchers were going to try to find a probiotic to help fight it. So probiotics may be a good idea. I take the shotgun approach, as many different sources and types as possible. Mostly fermented food(kefir, sauerkraut etc), but occasionally store bought if I can find something interesting(checkout Mutaflor).

    Cheers,

    Andy

  5. Sherry SurrencyJanuary 12, 2014 at 9:53 pm #

    My name is Sherry. I am 48 years old. I had a promising career in the medical field up until about a decade ago, then everything in my fell apart. I was diagnosed with 23 bleeding ulcers of the upper digestive tract. The rest was soon to follow. Ulcerative colitis is definitely no laughing matter, neither is any disorder of the digestive tract for that matter.

    Later that year, I was hospitalized with a life threatening infection, then diagnosed with Common Variable Immune Deficiency. Now, I am looking at a very likely diagnosis of Multiple Sclerosis. Strangely, I am on the low side of diabetes.
    Unfortunately, I also have granular lymphoma of the liver and spleen, hypothyroidism, severe asthma, psoriasis, and arthritis to accompany all the above.

    You asked in your one of your posts if there was anyone out here who could understand how you feel in coping with the multiple disease processes and the loneliness. I share that loneliness. It’s a loneliness of not having someone who truly understands what you are going through… Are they really listening? Do they really want to listen? My family just gets frustrated if I try to vent.

    I was shocked to read your story. Shocked and relieved to know that I am not alone. I know that sounds selfish, but just knowing that there is someone else like me out there somewhere makes dealing with these diseases a little easier. It helps to know that I am not alone. I really appreciate your story. Thank you for sharing it. It means more than I can explain.

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