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Ulcerative Colitis
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Posted 11/19/2013 4:52 AM (GMT 0)
Hi all, I'm 27F and diagnosed about 2 months ago with active UP. I've been having symptoms about 5 months now, had a week of bad stomach pain and cramps, which went away at the same time I started having bloody stools which have increased in frequency. I lose count but at least 10+ times daily. Half of the time is just mucous and blood. After the colonoscopy the surgeon put me on entocort enema for 2 weeks (not sure why only this long as the info said 4-8 weeks - although financially was good since I have no insurance and cost me $150 for 2 week supply). Symptoms such as urgency seemed to increase after tx and when I went for the follow up, surgeon decided to refer me to specialist. He did not want to put me on anything else as his first attempt was unsuccessful. That was 4 weeks ago, I called today to check status of appt with GI MD and it sounds like will be another FOUR MONTHS.

I am starting to despair. I am having a hard time finding info specific to UP. I feel like this has no end in sight and it is really starting to make work and social situations awkward and stressful.
Posted 11/19/2013 1:43 PM (GMT 0)
Since you had the c-scope and have a diagnosis there should not be a reason for no meds.
If it were me I'd call every GI possible to get in the door carrying a copy of your scope and diagnosis. That's what they'll need to see before prescribing. Don't wait. Go out of town if you need to.
If it were me I'd even go to a walk-in clinic (with your scope/diagnosis results) and beg for a prescription to get you through the 4 months.

At the same time I would call back your 1st doc and insist on a script for some meds to get you through until you see another doctor. You need to use a mesalamine enema which is different than the Entocort enema. These are not cheap so look and see if Rowasa has any help for uninsured.
The enemas will be the most effective med for UP, better than oral in my opinion.

With no insurance you need to check with your local services and see if there are any programs you can get into for reduced cost.

Sorry you have so little doctor support but your 1st doctor should be helping you more. Don't let him off the hook.

My original diagnosis was UP and if I had been faithful with Rowasa it might have prevented a lot of problems. Yes I got the Rx but didn't follow through enough with the enemas.
Good luck.
Posted 11/19/2013 2:58 PM (GMT 0)
ITA with imagardener. There are generic mesalamine enemas that should help with the cost.

You should also consider adding fiber to your diet (psyllium) - go slow though. And start taking a probiotic.

In general, you need to avoid using NSAIDs for pain management (ibuprofen, naproxen, etc.) as these meds can irritate the bowel for people like us.
Posted 11/20/2013 12:34 AM (GMT 0)
Thanks for the advice. I got in touch with my family doctor (i have an appt Friday) but she could not believe it will be 4 months for an appt and that the surgeon who performed the scope gave up so easily with prescribing after the 1st try was unsuccessful. Hopefully she can get me on something and perhaps speed up the referral.

What sorts of diets/foods to avoid? With the psyllium supplement is that like a metamucil? (only thing coming to mind- but I would have thought it would make things worse! worth a shot.) I've been sporadic with probiotics so need to be better with those. any brands recommended? I have genestra HMF as suggested by my naturopath (but she is not a specialist for these conditions)
Posted 11/20/2013 12:48 AM (GMT 0)
Hi Callah,
I too have proctitis. When I was first diagnosed, the doctor put me on canasa, which are rectal suppositories. They are really helpful with proctitis and worked great. Then, I got lazy and stopped using them. BIG MISTAKE. I highly recommend them for UP. Also, my trigger foods are salad, popcorn, corn, beans (anything that makes you gassy) spicy foods and liquor. Salad is the worst. Perhaps you can call the manufacturer of Canasa to see if they can send you some free of charge. I used the enemas too, but the suppositories worked better for me and were easier.

Also, do not wait 4 months for the GI. You could get even sicker. Imagardener is totally correct. Excellent advice. Good luck!
Posted 11/20/2013 1:31 AM (GMT 0)
Callah,

Welcome to the forum.
You've gotten good advice here already.

You're asking about diet, food, etc...

I'd like to share what's helped me, and hopefully it can help you too, especially if you are willing to invest in yourself in natural supplementation.

Some meds work for some and not for others.
For me, the traditional meds failed me and the mesalamines I became intolerant of.
And when the doc gave me a choice of surgery or remicade, I balked and had to find my own way.

He also told me diet has nothing to do with UC, but I found that it has a great deal to do with excarcebating(sp?) its symptoms!

I found that by doing these things it helped control my symptoms by 75%:
1) adequate high intake of vitamin d3 ( need to get your levels checked first)
2) probiotics are key, are you on any?
3) slippery elm powder to coate the intestinal tract helped greatly
4) l-glutamine amino acid powder for long term colonic repair
5) food combining
6) diet modification as in gluten and dairy free
7) rectal meds help lots of folks out


The Last 25% was taken care of by LDN, low dose naltrexone, which put me in remission.
If any of this interests you, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.
I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.
Posted 11/20/2013 5:24 AM (GMT 0)
the psyllium is the soluble fiber in the metamucil cookies. I can't eat the cookies (gluten free diet for me) so I take psyllium in capsule form.

When I first was diagnosed (proctitis for me, too) my GI suggested I add fiber and it turned out really bad. What I didn't know then was that I had inflammation at the cecum and terminal ileum as well as the rectum - the diagnosing GI didn't know that either, since he only did a sigmoid scope. Adding fiber to my inflamed gut was really painful.

However, more recently I needed to have better regularity so I added psyillium and it has worked great. It bulks the stool and keeps things moving. It is also a great pre-biotic - the beneficial bacteria really like soluble fiber so that's a good thing, too.

Cita mentioned Canasa suppositories. These are a mesalamine and are great if your inflammation is limited to the rectum. However, there is no generic, so they are expensive. The mesalamine enemas will give you coverage throughout the sigmoid colon and even up into the descending colon, which is really good for preventing the spread of your disease.
Posted 11/20/2013 6:21 AM (GMT 0)
Welcome to the forum!

I agree with what everyone else has said. Let me just add that when people say it can get worse, it really can. The Ulcerative Colitis can spread further up into your colon. Treating this now is your best shot at not having it spread.
Posted 11/20/2013 12:14 PM (GMT 0)
Thanks. I will look for the plain psyllium husks as I don't eat gelatin (sort-of-vegetarian). I was afraid it would make me go more, but I also read up an old thread on this forum and your comments so it sounds like a good thing as long as I take it slow. I am fortunate that in a few months I will be getting insurance but I don't want to wait that long and have it spread. I am considering a vegan or whole9 diet as a jumping off point- there are so many different diets IBD sufferers try that it's overwhelming!! I'm currently on genestra hmf probiotic (need to be less sporadic). Are there good probiotics people suggest?
Posted 11/20/2013 12:35 PM (GMT 0)
hey Shawna - welcome - good advice from everyone - ita -

just curious, do you know what blood type you are ?

and my advice is to try and figure out what foods are harmful and which are beneficial for YOUR body - I was a vegan when I acquired uc = now i'm more of a paleo type - most of us who try to help our uc through diet have tweaked something, whether it's scd, paleo, vegan, etc. ------ imo, strictly sticking with a certain prescribed diet can lead to problems - just leave yourself open to modifications -

like insofla suggested, try going gluten and dairy free regardless of what else you do -

good luck - 

 

Posted 11/20/2013 12:50 PM (GMT 0)
I believe I am A+. I am definitely open to modifying a specific diet (especially since I already modify vegetarian, I have no problem breaking labels!). First thing is to cut out dairy. (Basically cheese & yogurt) - already been on almond milk for a few years. I need to do research in how to cut out gluten- it's hidden in everything, isn't it?! Curious how long it took people to see/feel results once changing diet.
Posted 11/20/2013 4:24 PM (GMT 0)
Shawna,

Be on the lookout for carrageenan on labels too, especially on alternative milks like almond milk.

Carrageenan has been used to induce UC in lab rats!
Posted 11/21/2013 7:04 PM (GMT 0)
Thanks insofla- I recently started keeping my eye open for carageenan after reading about it on a vegan food blog I follow. I changed brands to avoid it - I have silk almond milk now instead of almond fresh. Actually tastes better!
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