Aloha all - Hello and such from the new guy

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Lucky777
Regular Member


Date Joined Aug 2008
Total Posts : 128
   Posted 8/24/2008 4:48 PM (GMT -6)   
So, I have spent much of the day reading alot of these sites and decided to join this one. So, here's my deal. I'm an Iraq and Afghanistan Veteran, and on my most recent involuntary excursion for my country I wound up having some crazy GI problems (while in country). After alot of ups and downs for the rest of the deployment, I made it home and thought that was it - obviously I am here, so I was wrong. I started having flare-ups again within a month of being home, and had my first FLex-Sig in April 07. Doc said "Ok, can't see anything, but the biopsy tests show active colitis". SO we start Asacol, 9 a day. I have a decent summer, but things aren't perfect. But they were manageable. In the fall, had a flareup that was a bit more than the norm, doc said take 12 Asacol, and we try a little prednisone. Things are ok through the holidays (again, ok meaning it's just like I had IBS and had to stay away from stress and cheese), and then comes January. Things start to happen more often. February - complete and total explosion of symptoms. about 20 episodes a day. I take 2 weeks of sick leave and the doc starts all sorts of extra treatment, more prednisone, suspensions (cort and asacol). I go through another Flex-Sig - bam, doc says "I didn't see it last year, but this time, there's no denying". So ok, we knew, but now we know, Left-Sided colitis. So he turns the fire hose on: more prednisone tapering up, and we head to Azathiaprine, 50mg. That was April. Now, I am sitting at 175mg Azathiaprine, no prednisone (tapered off) and 4 x Lialda a day (I was passing the asacol whole earlier in the year, so he went with these, and they have worked much better because I time them for digestion. Am I Ok? Still no. And frustrated as hell. I went 4 solid months with no less than 10 episodes a day (and most of them just gas and mucus, that's it).

My toxicology reports show that I am metabolizing the heavy doses of Azathiaprine, so on that note I guess I am healthy as a horse. THe doc is cautious about going up to 200mg or more because quite frankly, I am at the top of the central band scientifically - he has said that if the toxicology reports show no toxicity next time, and that I am still not seeing benefit, and I agree to it, he thinks that the science can support another increase. It was an if-and-only-if conversation.

But that was not the last conversation we had. Before I left his office, we talked Remicade, and Removal. So I left with those two things floating in my head. And they are still bouncing around. I will invariably choose Remicade if I can afford, before I even consider seriously removal - I am 31 years old and still have every intention of going in the ground whole in 70 years or so. But it is in my head. Over the last 6 months I have exhausted all my leave - annual and sick. Options sliding, as they discuss medically retiring me, or worse, keeping me with no restrictions because it's hard to articulate how bad it is.

So, the only thing to add, is that I have been messing around with diet, and it seems that I had a few "really good days" in a row after a week of limited carbs (and it was only saying, hey, I haven't really eaten any bread or sugars this past week). SO I have been looking into this SCD thing I read about on some of the posts here.

So if anyone would like to respond to anything I have said here, or toss some knowledge about the drugs, options, SCD (very interested in SCD today), or whatever else, please do.

Sean

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/24/2008 5:17 PM (GMT -6)   
Lucky, I'm sorry you needed to find this forum, but welcome and I hope you will find it supportive and helpful.

First let me thank you for your service to our country. I'm understanding that you're active, not reserve or National Guard? If so, you may have the option of the VA to cover Remicade if you need it. I know we have some other service men and women here going through review for their continued service, they would probably be able to help you more. You may want to post a thread with a title specifically asking about UC in service, if they're around I know they'll respond.
Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/24/2008 5:21 PM (GMT -6)   

Try this link. I hope it will take you to the thread where this was being discussed:

 

http://www.healingwell.com/community/default.aspx?f=38&m=773011


Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Lucky777
Regular Member


Date Joined Aug 2008
Total Posts : 128
   Posted 8/24/2008 5:39 PM (GMT -6)   
Thank you for the reception, and for your appreciation.

I am currently a National Guard member, after serving about 10 years of Active Army service. I went to Afghanistan with the Guard, and work as a Dual-Status Federal Employee. I am certain that my Line of Duty investigation (which is currently processing) will attribute my service as to the cause of UC, and the VA also has my documentation and is processing my claim. Once it is finished, and a Service Connection is established, the VA will in fact likely be my primary outlet for treatment. As of now, I have Federal BCBS, and have relatively low co-pays as is. However, when and if they decide to medically separate me, I will lose my Federal job (dual-status means that Guard membership is a condition of my employment. I have been told by my HRO that if I am separated from the military due to no fault of my own or medical, and subsequently released from my Federal Civil Service, I will incur a pension until 62, and be allowed to retire as if I had never left at that time. This is the good news, and currently, it's the only good news I have. I actually have more of a fear that my condition worsens (or fails to enter remission) that the military keeps me with no limitations. SO that is my fear there.

But yes, the VA is an avenue that I am currently looking down, when BCBS fails to support my needs.

I too am sorry that I have had to come here, but I found comfort in all the help I saw and the common 'glue' that everyone has here. I felt compelled to join the site when I found how compassionate and understanding people were here. I do not have a support group that I have tried, so this is round one. I plan on looking for one locally, so we shall see.

Again, thank you for the reception :)

hekela
Veteran Member


Date Joined Nov 2006
Total Posts : 731
   Posted 8/25/2008 11:25 AM (GMT -6)   
aloha lucky and welcome!
as for the SCD, you can just do a google search for it or try these sites
www.breakingtheviciouscycle.info/
www.scdiet.org/
http://specificcarbohydratediet.net/
www.scdrecipe.com/recipes/

it has helped a lot of people and hopefully you will have luck with it as well!! since you are interested in learning about food and how it affects your body/symptoms, i suggest you keep a food journal (list everything you ate, drank, meds etc. and also your BMs, if you were gassy, felt overall good or bad that day etc.). that was the main thing to help me learn what really works for me. we are all affected by the disease so differently.

hope that you can start feeling well very soon!
29, happily married, stay at home mom to 2.5 year old son. due to have another boy 9/17/08
UC (probably pancolitis, but no c-scope yet), diagnosed June 2006, started having major symptoms sometime in January 2006, about 3 months after childbirth. 2nd flare (minor) may 2007 after taking caprylic acid for 2 weeks.

-Prednisone 8/28/06-2/28/07. and again may '07, 8 week course.
-Prayer! asacol, probio, ground psyllium husk, prenatal, folic acid, cal-mag

may you live all the days of your life.


Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 8/25/2008 11:34 AM (GMT -6)   

Hi Lucky,
Nice to meet you and welcome to the forum.  I can't offer much advice in the way of meds, because my inflammation is lower than yours (which requires different medication).  But I can give you my thoughts on diet.  I tried eliminating MANY different kinds of foods and tried all sorts of different diets, including SCD, just up until last week.  I was SO weak and so miserable and dehydrated that my muscles were cramping and my memory was actually getting bad (scary!), and I lost about 10 pounds.  Then I realized that when I was first diagnosed and eating more foods, my symptoms weren't as bad.

With that said, I had learned a lot over the last several months about foods that aggravated me.  I'll list them below.  But as far as strict diets, like SCD, they didn't help me.  And if you're going to try them, you have to be extremely disciplined and be willing to cook most of what you eat (which is no fun when you feel like crap already). 

I know those diets work for some people.  For me, with a toddler and husband to feed in addition to myself, it was not a reasonable option.  I'm actually a very good cook, but it was still just too much work.

You'll have to figure out over time which foods work for you and which don't (use a food diary!).  My list is pretty specific, but here goes:

NO:  fluid or semi-fluid lactose (milk, sour cream, etc.), fruit and fruit products, fried/greasy/fatty foods, nuts/seeds/granola, raw veggies, caffeine, large amounts of processed foods or white sugar, anything more than a few sips of alcohol.

I do still make the homemade yogurt that was part of the SCD, and I eat it daily.  It think the probiotics/good bacteria it provides have TOTALLY helped me. 

I hope this helps you.  Let me know if you have more questions.  I'd be happy to offer any help I can.


Katie, 30.   Chicago 'burbs.
DX:  Ulcerative Proctitis (10cm) January '08
Current Treament:  Rowasa 60 ML 2X daily, Cortenama 100 ML 1X daily, Bentyl 20 MG and Tylenol (as needed), and multivitamin daily.
Diet/Exercise:  Avoiding trigger foods.  Daily yoga, walking, or cardio w/weights.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Vitamins.
Status:  Flare since diagnosis
 
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 8/25/2008 12:54 PM (GMT -6)   
I have been dealing with this disease for a long time, since mid-1980s. Like me, you will figure out what you need to do to feel as good as you can, whether it's food or timing your meals and thinking ahead about bathroom visits or whatever. I don't even see my GI very often, she knows I know what I need and when I need it, and she calls in the Rx. Based on what she observes with other patients and because I manage well even with severe UC, she doesn't think the new treatments are worth the side effects for me. My colon may be a mass of scar tissue, but to look at me you would think I am very healthy (and I don't tell). But if you followed me around... you would know different!
I'm surprised at how quickly some folks start thinking about surgery. Not that it is wrong, I'm just surprised. On the other hand, I'm also surprised at how many people expect that, with some combination of diet or medicine, their UC will go away and they will be OK again. Has anyone ever been cured of UC, without surgery? I don't think so, if it was really UC.
Wow, that's kind of a downer, sorry! I meant to just say, it seems so mysterious now and it will be a challenge but you'll figure it out.
49 year old female, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA maintenance for 20+ years, usually 3 pills 2x day. 
Currently tapering off presnisone from lingering flare;
August 2008 sought care of naturopathic doctor. Tested gluten intolerant and started gluten-free, soy-free, etc. diet which resolved flare. Also Replete probiotic, DGL (licorice root, slippery elm), Permeability Factors. Slow-release iron and B-12 shots for severe anemia.
 


elliekate
New Member


Date Joined Mar 2008
Total Posts : 16
   Posted 9/2/2008 5:42 PM (GMT -6)   
Hi Lucky,
 
I've been on the Specific Carbohydrate Diet (SCD) for 7 months and I've seen huge improvement in my symptoms. Check out the websites in one of the previous messages. Here are two additional websites to read testimonials from others who are on the diet:
 
 
I also belong to a Yahoo forum for SCD members if you're interested. Keep in mind that your doctor will probably not endorse this diet or any other diet for your UC (mine certainly didn't). The diet isn't easy to stick to - it has many restrictions - but the sacrifice is well worth it. I was diagnosed with a bad case of UC in Feb. 2007 and after a short course of prednisone, my symptoms disappeared. I am now in remission. I take Lialda but I did not have to take Imuran, Remicade or anything else. The diet is truly a miracle. Please feel free to ask me questions.
 
EKW
UC diagnosed 2/07
SCD 7 months
Lialda
Assorted vitamins and probiotics

Lucky777
Regular Member


Date Joined Aug 2008
Total Posts : 128
   Posted 9/3/2008 8:45 AM (GMT -6)   
I have really been looking into the SCD deal (and a few others on here who's diets are limited but are not SCD). I think after the next paycheck I will budget out a two week SCD plan so that I can walk into it, and see if I can sustain it for that long and what it will cost me.
Sean - 31

UC Since April 2006, diagnosed 2007 (Flex-Sig)
4 x Liada (2 am 2 pm)
175mg Azathioprine
2 x Imodium
Remicade consult scheduled

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