Could my UC diagnosis be wrong?

Banana girl, that's what I'm concerned about with the dark stools with Lialda. Apparently it can cause internal bleeding... Great. That's insane that it caused you so much damage after just a month. How horrible. And sorry guys, I think there's been some confusion, the UC is just ABOVE my rectum. It is in the colon, but localized to the area of my colon just above my rectum. I've been feeling gurgling since last night that's like in the middle of my stomach... I hope it isn't spreading. I am taking Canasa as well, at night. I stopped the iron supplements, I forgot the name of them, I'll check when I get home. I know it's a capsule.

Conquer UC, thank you for the advice. I'll try that. I'm so untrusting of pharmaceuticals. I haven't seen anything where anyone has been like, "oh I love this medicine! It works so well!" No, instead people are force fed these medicines and I see where they get worse, have horrible side effects, take them consistently without any major improvement, have a flare up a little while later that's worse than one they've ever had, or they're stuck paying hundreds of dollars a month just to feel like crap. It's like they want us to be sick so we have to keep using the medicine, but not so sick that we die. After all, a dead customer and a completely cured customer won't make them any money! Jeez this is so frustrating. Why hasn't more research been done to find out how to cure this??? Aaahhhh!!!!!

Conquer UC, what's the squatty potty? Sounds interesting. Have people had luck with that?

Lol there we go!! What is pentasa? What are you taking now? Did you or have you had any side effects? Were you on any other medicines before finding one you liked?

EllieKay, you can see all my my meds in my signature.

It took me a long time to get where I am now. Part of that is because I was birthing and breastfeeding at the same time I was getting diagnosed and trying to work out a treatment plan. The onset of my IBD coincided with the pregnancy/birth of my first daughter. I started Pentasa (one of the oral 5-ASAs) about 2 years after the birth of my 2nd daughter, probably 4 years after I first had bloody diarrhea. So, a long while, LOL. In the first few years, before Pentasa, I took Asacol, which helped, but not enough. I was using rectal mesalamine all the time because the first thing my GI found was rectal inflammation.

Side effects: I stopped taking Pentasa in 2011 - 7 years after starting it - because of tinnitus. This can happen with Pentasa (but none of the other oral 5-ASAs). It was annoying to the point of distraction so I switched to balsalazide (generic Colazal). The price diff was nice too.

Other side effects: I take 1.5g of sulfazine/day. This is the joint pain treatment I'm on, and it can cause headaches. I have more headaches than I would like and I find it almost impossible to drink any alcohol without getting a pounding headache. It's worth it to me. The joint pain I had was horrible (hands/wrists/elbows) and now it's gone.

Iron supplements mess up bacteria? Great day I've heard that iron supplements aren't that good for us (far better to get it from food) but more from a cancer perspective than bacteria. Do you have info you can point me towards? Heme iron is just iron from an animal source and my understanding is that it's better absorbed. (I'm still working on trying to eat/like liver)

My GI just suggested I take an iron supplement a couple of weeks ago and of course I didn't ask the why or how of it. When I had to get a blood transfusion back in January, that doc said an emphatic NO to an iron supplement.

Also, about the thin stools, I get pencil stools sometimes and sometimes some squared off ones (those are weird), sometimes ribbons, sometimes fairly normal ones too. They change shape sometimes within the same hour. Is this normal as in does everyone expererience that (more or less)? I don't understand the language of this orifice

Sorry LL, I didn't read your first reference to iron sulphate thouroughly enough. Anyways, the paper you referenced was hard to read on my computer too, but with my nose on the screen and the reading glasses on, I got through it. Too bad they don't speak English . I see at the end they are neither recommending or suggesting to not recommend iron supplementation.

My GI specifically told me to take ferrous gluconate, so hopefully it's not an issue for me.

Thanks for clarifying!

re: nutrient absorption: Aren't the majority of nutrients are absorbed in the small intestine? So having UC doesn't/shouldn't pose that problem? Weight gain in a flare might be normal for some but 55 lbs in six months seems to be way outside of normal.

Update: I stopped taking the Lialda Wednesday after my morning dose. That night, I felt amazing. The following day I felt great, not wonderful, and then tried breaking open my vitamins to take the powder rather than the whole capsule. Bad idea. Definitely not meant to be taken that way. I got super bloated. This morning, woke up feeling great, used the bathroom, stools are getting back to normal. No longer black or shiny, and not turning the surrounding water a reddish color, which I found out meant the medicine was causing me to bleed internally, somewhere way high in the digestive tract. Plus, I was able to fully evacuate myself which I haven't been able to do since starting the medicines a week ago. I feel ten thousand times better.

That being said, like you all, I've been doing a ton of research, and a lot of thinking. These medicines are for symptomatic relief, and do not address the root cause of WHY this is happening. There is something wrong that is causing my body to attack itself, and I want to know. I don't want to treat the symptoms, I want to fix the problem. It's like putting a band aid on an infected wound without cleaning it. You're just covering up the problem, but it's still there, and will get worse. I will be seeing an integrative doctor to try to address the underlying cause. I've started taking e&d capsules, bee pollen, and probiotics, as well as started a juice fast. Now when I say juice fast, I mean juicing whole, fresh vegetables, and a few fruits, and allowing my bowels time to rest, and heal while getting all of the major micronutrients it needs. Watching the documentary, " Fat, Sick, and Nearly Dead" inspired me to do it. I'm on day 5, the medicine is clearing my system, and I'm feeling hopeful again. I know mine wasn't as advanced as many others, so I don't know how comfortable some people might feel doing it. I figured I had nothing else to lose. This site: http://public.thinkmoreraw.com/juicing/juicefastingfeasting
Helps explain. It gives a timeline of things people should be experiencing, and I'm right on track with it, except I haven't experienced any of the negative side effects you're supposed to feel in the beginning.

I just wanted to share this with you guys because I see how horrible this disease is, and how it can take so much out of a person's life. It makes you realize how valuable health is, which so many people don't even think twice about.

I will keep you guys updated about my progress through this.

Here's to one day finding a REAL CURE and eliminating this horrible disease.

Cheers

Seriously, Kazbern??? Read the title of my post... Get off the pessimism. Are you HAPPY living with these disease? I doubt it. So try being open minded to stuff DIFFERENT than what you've been doing. If you shoot every person that tries to share some advice then you may as well dig your own grave.

And yes, I have nothing better to do than to "troll" ulcerative colitis forums... Please.

Well, sorry to offend, EllieKay. We sometimes get into quite the heated convos on this forum about things like juicing. The forum rules do not permit posting of commercial website links for products related to cures. I haven't clicked through so perhaps there's nothing being sold at the thinkraw website you posted. Again, sorry to offend.

You have just been diagnosed. You were given meds to treat your condition. In the 3 days since you joined this forum you went from asking basic questions about the diagnosis to deciding you needed to toss your meds and go straight to juicing and a raw diet. It's an interesting history, that's all.

The website I provided does not sell anything. It's a breakdown explaining what juicing does. It's not for ulcerative colitis specifically, it's for everything. I found this site AFTER I started the process, and I found it helpful in what to expect.

Lodi, it gives the bowels a break bc the fiber is removed. All that's left are the vitamins. If you read the link I provided, it explains the philosophy. It explains that in nature when animals are sick, they fast. Fasting is the body's natural way of healing itself. Digestion requires a lot of energy, and when you're ill, it's better to fast so the energy can be used to heal. I only gave the site link so people could read about it, and the documentary is about a man with an autoimmune disorder of the skin who is on steroids, immune suppressers, etc. and it helped him. Being that this is an autoimmune disease, although a different one, I thought I would try. Like I said, I have nothing to lose.

The documentary is on Netflix, the site I provided is just information, no products. Usually people like resources that they can check out for themselves rather than just listening to someone. I plan to do this for 8 more weeks, and I would love to post about my journey through it in case anyone might find it useful, that is, as long as I don't get heckled about it. This was my decision. There are a million options, and this is where I'm starting.

And Kazbern, the medicine is only symptomatic relief. It's not solving anything. Why would I take a medicine for symptoms I didn't even have, only to be GIVEN those symptoms? I thank Bananagirl for posting her experience, otherwise I wouldn't have had the bravery to just stop, even though I had bad feelings about it. A medicine that only provides symptomatic relief, with so many severe side effects, is clearly not good. That's just my opinion, I'm sure many would disagree. I'm not endorsing this, I'm just stating what's right for ME. And if anyone can relate, and be helped by it, then I'm ecstatic that I was able to help.

EllieKay, I'm sorry you had a bad reaction to Lialda. It happens sometimes. If you read back to the earlier posts I also questioned why you were even given oral meds since you don't have inflammation above the rectum or right beyond it. Oral meds are of no use to that kind of disease and I suggested that you get in touch with your GI to get a better understanding of why s/he prescribed them. The best and most effective treatment of your inflammation is rectal meds.

Good luck with the juicing.

same old buzz word progression...

q

EK, The website looks interesting but it's not 'speaking' to me the same way as it is to you. Of course it's not your 'job' to persuade me, but please discuss what you know or are finding out.

When you said you were juicing WHOLE fruits and veggies, I took that to mean fiber and all, sorry. I also have a similar opinion to London Lurker that fructose is toxic (in quantity). I do see benefit in fasting, keeping in mind that while you are starving those bad bacteria you are also starving those good ones. The 'cause' of UC theory that makes the most sense to me is that we have acquired an pathogenic infection of some sort and our body's mount an immune response attack.

The reason I've become wary of diets that lack balance is because I developed UC after being low carb for a long time. I felt so so much better eating that way; no longer hungry all the time, no more menstrual issues, face cleared up, brain fog cleared up etc. etc. Well, I shouldn't have stopped there. That was a clue, not a solution and bottom line is that I wasn't utilizing carbohydrates well and I should be and I should have kept going and tried to fix the problem (which I now believe) is that our bodies evolved to need a fairly consistent stream of macronutrients which also can supply the micronutrients.
The UC developed as my carb starved body started to 'cheat' here and there and next thing you know...

The question is now that 'we've' become 'sick', what is the best way to get better - thus a lot of experimentation. I wouldn't be surprised if a juice fast is beneficial for just a few days and if it becomes your cure - great! Just a friendly caution not to get to wrapped up in the dogma of it.

One of the things on the website gives the analogy that some animals eat grass when they are sick (they are trying to make a point that we should eat plants) and yes, they often do, but that is because it will make them throw up, not heal their bodies. They also make a lot of claims about fasting and then link that to juicing (makes me confused). There are other 'out there' claims on the website too which, when they use is as proof, makes me skeptical.

I'm trying to use probiotics from foods(dairy and veggie ferments) and supplements to repopulate my guts' balance of bacteria. Also bone broth made from healthy animals. I try to eat a varied diet (meat, veggies, starch in the form of potatoes and white rice), some fruit and nuts. I stay away from gluten too. I plan to try something called intermittent fasting (where you keep your eating window to only 8 hours of the day) but I'll wait till I'm off of prednisone. Intermittent fasting seems safer than long term fasting. I'm on a lot more drugs than you are too, so you probably have more leeway in what you can try. Keep us posted!