Hi, guys! I've spent a lot of time on Jpouch.org today, which is something I tend to do when I've not been feeling so hot. SO great to be able to come to a place where people actually understand! So...it's been a long road, as it has been for most of you. Got diagnosed w/ UC when I was 16...sick as a dog till I got sicker and ran out of options with meds, so had the surgery in 2005. Thought I was "cured" then had all kinds of complications-pouchitis, strictures, etc. Then finally diagnosed with Crohn's in 2006. Have a great GI and surgeon who say on top of things. I have been on some new meds that were successful for a few months (Entocort) but then stopped working...seems to always happen to me! So then I started Humira. It was amazing! I got SO much better so fast and finally got into remission. Well, now I've started taking it once a week, instead of twice a month, which is fine...but I've started to notice that I just don't feel as great as I used to on it. I'm on Imuran and Xifaxan and Canasa too and do monthly b12 shots and tons of vitamins like iron, calcium and Forvia. I don't drink alcohol, stopped eating sugar, watch what I eat, try to get enough sleep, avoid being around smoke, etc. Anyway...it's starting to take it's toll on me. Working about 30 hours a week is all I can do and even that is pushing it for me...but I have to do that to make enough $$ to live on...I go to yoga when I'm not exhausted and that helps tremendously and makes me feel great, but nights like tonight, I really couldn't do anything by lie around because I am exhausted and have an annoying headache and backache. So I did my shot tonight, a day early, hoping like hell that it will work as fast and as well as it did last week. I am so sore b/c I have a hemmroid and my pouch is sore (as well as my back and hips and legs, which are becoming a constant prob). I know I have IBD related arthritis too and the Humira helps w/ that too, but the "feel good" time between shots seems to be getting shorter too. So...basically I just needed to get that out. I have great close friends and family but I get sick of having to tell them how I feel when they ask. I am so grateful and feel so blessed most of the time, but sometimes I just get sick of being sick. I realize this is my life...I feel like I truly am doing everything I can do be good to my body and make good decsions about my health. It just seems like I always have a headache, am nauseaus, tired, achey, pouch is sore, etc. etc. There is so rarely a day that I feel good or great. Being able to sit at my desk at work comfortably is something I don't think I will ever know b/c my pouch, rectum, or back hurt so badly. I am elated when I have those rare good days, but I just feel like I've plateaued sorta. Just cause this is the best I've been in a long time, and to be honest...still not that great! I realize this when I am around my healthy friends. God, it seems they never get tired! They don't have chronic pain or get sick after eating... I don't want to have the pouch removed b/c I hated the bag. I was so depressed with it and hated dealing with it. Plus I can't imagine more surgeries and that would probably be bad for the Crohn's anyway. Anyway, I am praying things get much better in the next week. I have been keeping a journal for my GI of my symptoms and honestly that's what made me realize how "not great" things were. I tend to try to put a silver lining on everything and stay positive, but I also want to be realistic. Sometimes re-reading how crappy I usually feel just bums me out.
Thank you for listening!

I'm sorry to learn of your ongoing problems. I hope that either the meds or dietary/lifestyle changes start providing some much needed relief.

quote:

I don't drink alcohol, stopped eating sugar, watch what I eat, try to get enough sleep, avoid being around smoke, etc.

I wanted to provide some insight into my experience, to date, with dietary/lifestyle changes. I have choosen to manage my Ankylosing Spondylitis (which appears to be related to my "former" UC), largely, but not exclusively, through dietary/lifestyle changes.

A doctor started me with the elimination of the first type of food (wheat products). While I saw perhaps a slight improvement in overall well-being after a few weeks, I was uncertain if it was worth it. My former diet was very "wheat intensive" and convenient. I struggled to find things to eat. I used to be rather "kitchen clueless" (I'm now a promising work-in-progress...I think). I eventually started correlating intake of certain foods with increased pain levels. I eliminated the majority of those offending foods too. Aw crap, less to eat. Again, I questioned why I wanted to make my life more difficult when it was already so difficult due to pain. However, I noticed, although very subtle, that each day was an improvement over the previous day. I started to have more energy, the proverbial haze that hovered over my head and clouded my thinking started dissipating, my anxiety and unwarranted nervousness disappeared, I experienced a significant improvement in one of my blood tests for system-wide inflammation and I was, for the first time since the onset of the AS symptoms, optimistic.

My point of that rant is that it took a while, and I'm talking about several months, before I really realized that these dietary/lifestyle changes were making a difference. They haven't eliminated my all of my symptoms. I'm not sure anything ever will. They can't undo existing damage. However, they have allowed me to live with less pain and to function better. It also has given me hope and a better outlook on trying to manage this disease.

Good luck. I hope you start experiencing better days soon.

Hey Lizz, Sorry to hear that you're having a rough time. I know what you mean about feeling okay, but still not 'normal'. I get feelings of envy towards my friends and pretty much everyone that can go about their day and randomly eat what they want, when they want, and never have to think about the bathroom. I think sometimes we try really hard to be 'okay' because we really want them to be, and I think your positive attitude and trying to do things such as yoga will help you. Some days/weeks are harder than others, this is true. I hope your Humira kicks in and you feel better again. And maybe you need a long soak in the tub for your achiness, I've had more baths in the past few months than in the rest of my life! It's just so relaxing...haha, now I want a bath! Take care.

Hi, guys! Thanks for the sweet replies I took a bath tonight, Pixie! haha. Too funny. Hope you enjoyed one as well! LuckyOne, can you tell me more about this diet? I am so anal about what I eat now and it's really annoying. I feel so high maintinence now! ha! Anyway...this wheat thing intrigues me. I buy a lot of glutten free stuff and have started cooking more for myself, which helps, but you're right, it's kind of a pain convenience wise...However I'd like to hear what you are doing and how! The symptoms you describe sound eerily like me...the cloudiness, anxiety, etc. It's not a problem ALL the time, but the days I feel the worst, I definitely have all those. It's a really scary/bizzare feeling b/c I truly do not think it is a mental thing. Hmmm...So what do you eat in place of wheat? I guess just glutten free stuff would be okay, right?
Thanks again!

Hey Liz,
I don't have a lot of advice other than possibly avoiding dairy products as well. A nutritionalist told me that would help the tummy issues. Gosh you have to work at least 30 hours a week to pay for the diet! It's so expensive to eat "healthful" foods.
It sounds like your situation sucks but you have a good outlook. Take as many baths as you like! That's one thing I missed having a bag (since I had problems keeping one on) was that I felt like I couldn't take baths.
Best wishes,
Lori

Hi Liz,

I'm sorry you're having a rough time. Hang in there with that diet. It is typically not an overnight improvement and can take months to really feel a positive effect. I think LuckyOne's post reflects that sentiment.

Instead of doing a Humira injection every week, what about an increased dose? My GI just upped me to 80 mgs, but I'm still on the every other week schedule. I would inquire about that.

Yes, a more "healthy" lifestyle can be more expensive. The problem is not the price of food. Relatively speaking, "fresh" produce is actually cheaper than the processed foods we buy at our local stores. The problem is that our produce is shipped from who knows where -- it sits on a truck from coast to coast or gets flown-in from another country. If you can find local produce it will last longer, instead of being wasted and thrown out.

Check out this new documentary about America's farming industry. KING CORN

Hi Liz,
Sorry to hear things are not so well. Funny how things work on this site because I was going to post a similiar discussion when I read yours. I am only 2 months post TD but I too am having daily problems and I am like you said -"sick of being sick". I had 1 piece of baklava at work today and within 2 hours all H#^!ll broke loose out the backside....like battery acid! I know sugar is a no no but thought 1 piece(it was a decent sized piece but not huge) would be alright. I think foods do play a big part with daily functioning...no tomato sauce, dairy or sugar for me. Cinnamon also causes all kinds of problems. No large meals for me and resturant food is starting to cause problems. Maybe they put too many chemicals in the food.
I know I am much better off without my colon so I don't regret having the surgery. I am feeling just like you wrote about today - better but not great.
I really hope things turn around for you soon and the Humira keeps working. I was on Remicade for 2 years before my surgery and Humira will probably be my next drug if problems arise.
When I feel down I try to remember just how BAD things were when I was a UC flaring mess...Those were some of the worst(and embarrassing ) times in my life. Remembering those days help me get through the problems I am dealing with now.
Get well and feel better soon
David

Hi guys! Thanks for all the nice replies What a great group of Jpouchers we have! Well, doing the Humira did the trick. That stuff is freggin' amazing. I knew it would work, but my back, hip, and pouch pain are all gone. Even the dang hemmroid is better! I felt a little tired still today, but not exhausted and dizzy like I do when I can tell it's wearing off. I made myself go to yoga tonight and feel 100% better after that. I had been kind of shakey all day (part of the weakness, I guess) and didn't have to work today so I slept about 12 hours! ha! Thing is...I don't really have the means to have a day like this everyday! I was seriously considering trying to get on disability. I want to work a few days a week, but what I'm doing now is truly too much for me. Thing is, you have to be out of work in KY for a year to even be considered, and I just cannot do that. So, I'm just gonna stick it out and do the best I can with diet and exercise and sleep. It's just so hard to sleep when my back is acting up. I'll tell you, feeling better physcially will do wonders for your attitude! Shelby, I may have to inquire about a heftier dose...I never really considered it. I suppose they want to see how I do with the weekly dosing and then go from there. Good idea to mention though.
Last question. Do you think it's a mute point to ask them to do xrays to check for AS? I really suspect I have it, but if Humira is the treatment for that too then...?
Thanks, guys! You rock!

Liz,

I follow a low-starch diet. There is a group of individuals on an AS related site (somehow like The J-Pouch Group) that follow a low-starch diet. Other individuals over there are more extreme and follow a NO-starch diet. They test everything they put in their mouths for starch. No kidding. Many, not all, who try that extreme diet supposedly have astonishing success. They seem to be able to go without maintenance meds and apparently only experience pain or a flare when they inadvertently ingest something starchy. Keep in mind these are folks with AS, not Crohn’s. However, their “bible” is called the IBS Low-Starch Diet by Carol Sinclair. I have not yet obtained a copy. My to-date successes come from the aforementioned doctor (an “alternative” practitioner), learning of the success many AS’ers have had with dietary modifications and trying those, research/learning, and experimentation.

I scrutinize everything I stick into my mouth too. Adhering to such restrictive/specific diets requires us to be vigilant. Personally my thought is if one is to commit to such diets, it almost has to become a way of life. I struggled with it at first. There was a bit of “is this doctor crazy, I’ll starve to death”, to “I don’t see much change and I’m unsure it is really worth it”, to “hey, I’m starting to notice some changes” to “I don’t care if you all think I’m some kind of freak cause I won’t touch that food; do you know how much pain that will cause me?”, to “while I won’t ever be what I once was, this is the best I’ve felt since the onset of AS”.

You will have to experiment with foods, likely via elimination diets, to determine which foods, if any, cause problems. I can’t tell you what to eat or what to avoid, wish I could. You already sound like you are well on your way with some of the gluten-free stuff. You may want to target the biggest offenders first: wheat, corn, soy, shellfish, soy, eggs, dairy (thanks Olive Oil!) and maybe one or two more I missed. Wish I had something structured to provide you. Unfortunately I don’t and it’s not “one size fits all”, hence the experimentation. Also, do yourself a favor and a keep a food journal (I’m sure there are a few folks on this site that have the same sentiment). It will help you keep track of any problem foods and may even help you make some correlations to the symptoms in your other journal that you are keeping for your doc.

I’d be happy to PM you with greater detail if desired. Let me know. Best wishes.

Thanks, LuckyOne! I can tell you right now, my biggest downfall with this will be cereal. I LOVE cereal. I have been doing lactose free milk for a couple of years, tried soy, but feel like it does more harm than good. Rice milk just grosses me out, but I may have to try it...Thing is, I am supposed to be getting as much calcium as possible too, and I hate to cut out real milk. Also, I have noticed that a lot of glutten free stuff has corn and practically no nutritional value at all. You think oatmeal is okay to eat? I don't eat shellfish (maybe one shrimp a few times a year) and I don't eat pork or beef or corn...Lord, what do I eat? ha!
You guys are awesome.

Hey Lizz,
On the nonlactose milk front, my family and I have been drinking goat milk for years. Gross!, you say. And I did too until I tried it. The first time I thought it just tasted like liquid goat cheese, but now it just tastes like regular old milk.
It's even easier on your system than Lactaid. I don't know if UC patients and J-pouchers are calcium starved but I've always craved it and burn through quarts of goat milk a week. I have it with cereal, peanut butter, the works. You can get it at Whole Foods and many other places. Meyenberg goat milk is the best of all the brands.
Good luck and glad you're feeling better.
Jeffrey H.

Hi Jeffrey! Thanks for the idea...I used to drink it back in the good ole UC days and didn't recall liking it too much. However, I am older now and perhaps have a more refined palate! ha
In other frusterating news...I have "leaked" the past 3 nights, which is something I used to do badly and frequently before they discovered the Crohn's and my horrible stricture. Problem is, CD is not acting up that much after the shot, my stool is comfortably thick, and upon my own exam I cannot sense a stricture at the connection spot. Gr. Time to call the doc.

Liz,
Sorry to hear about the rough times the last couple of nights...lets hope the doc can come up with something to help. In regards to the cereal thing...I love cereal too but can't handle milk so I make my own chex mix and eat cereal that way. I even put some cheerios in it to help bulk things up. I would buy it already made but my 12 year old son eats it all.
Good luck with the doc - hope things get better real soon.
David

He told me to use an enema! ha! I think I may pass on that...

Liz

I was a big cereal eater too. What's more convenient than pouring a couple bowls of cereal when you get home from work? Once I shunned "conventional" cereals due to the gluten-free thing, I chowed on the gf rice krispy type cereal (was never confident of the real Rice Krispies being gf), Puffins, puffed millet and maple buckwheat flakes. Once I decided to go low-starch, all those were gone. I do have a bowl of puffed millet/maple buckwheat flakes (combo) very infrequently to see if anything has changed, but it continues to produce increased discomfort.

Shortly after my takedown, I became aware that my system no longer tolerated milk. I switched to Lactaid too. However, you couldn't pry my beloved ice cream out of my hands. That has since changed with the advent of my multiple dietary changes. Dairy, except for limited amounts of yogurt/kefir are gone too. Gone too is my morning mucus factory and twice yearly, at least, sinus infections. See, all of these dietary changes aren't so bad.

Tried the soy milk too for a while. It resulted in bloating for a couple hours after my morning smoothie. I wonder about the health benefits, if any, of processed soy products. There is a lot of controversy out there. I now use rice milk (although its starchy), although you don't seem to fancy that.

Don't know how often you eat vegetables, but green leafy vegetables contain valuable amounts of calcium and other good nutrients. I juice fresh veggies a couple of times a week and also supplement with calcium. AS supposedly sucks calcium from the body. I don't eat pork either due to nutritional considerations (although some refrain for religious reasons). I cut beef out for quite a while, but now eat it about once a week since I seem to need the iron and assimilate it well.

Hope your nighttime problems resolve soon one way or another. Sleep disturbances and deprivation is terrible.