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Ulcerative Colitis
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Posted 5/22/2014 7:14 PM (GMT 0)
Hi everyone!

I got diagnosed with mild to moderate UC back in December and was put on Salofalk suppositories nightly. Was on it for a few months and I found it did nothing for me, so I went in about two months ago for a short colonoscopy to see what was up. Nothing had gotten better, nothing had gotten worse, which I guess I can't really complain about. After that, my doc put me on Mezavant pills, two a day, and kept me on Salofalk.

I've since changed doctors and he kept my regime the same, just upped my Mezavant to four pills a day until I'm in remission. Prior to seeing this doc I was doing SCD and felt better, but alas he told me food will not cure me and to stop following such a strict diet. So I did, because really, bread is my life.

I've been on Mezavant for nearly two months (was told it would take a month to kick in) + Salofalk since Dec. and feel worse than ever. I don't know if the diet has anything to do with it, but I've been feeling lower abdominal pain this past week (nothing severe but I usually don't experience pain), and the situation in the bathroom is just not happening. I've noticed black/very dark mucus as well over the past month, month and half... no clue what that is. Plus just today I noticed I'm losing more hair than normal. Another thing to stress over, right? I thought I was supposed to be getting better, not staying the same/getting worse.

I'm told I have a mild case of UC... how is Salofalk AND Mezavant not helping me?? Have any of you experienced anything similar? I mean, really, I feel like these meds should be doing a little something... but nothing. Have any of you felt the same?
Posted 5/22/2014 7:28 PM (GMT 0)
Wow. Where to start? First, I'm not a big believer in following those diets much at all myself, just like your doctor. However, you have to be able to see the forrest through the trees. These diets do help some people and even though I don't think it is many, these diets do help some patients. From your description, I would have to conclude that this diet did indeed help you and your doctor did you a great injustice by simply poo-pooing it. I know it's not an easy diet, especially if you like bread, but if you can restart it I'm guessing your UC will improve.

One thing you have got to realize is that this is a lifelong chronic disease with no known cause and no known cure. All doctors can do is try a bunch of different treatments one by one until they finally luck onto something that works. You were very much misled that moderate cases were easily put into remission using this treatment plan. Like diet, sometimes it works and sometimes it doesn't. You really should read up on this disease as much as possible and be part of the treatment decisions because no doctor anywhere can assure you that any one particular thing is going to work so easily. Since there are both good and bad treatments you need to read up on this and take an active part in this decision making process. Since the doctors can't guarantee any one particular thing can work your thoughts on a treatment plan aren't any better or worse than a medical professional's but there is one big difference - this is your life and not theirs.
Posted 5/22/2014 8:21 PM (GMT 0)
Hey, IgotUC, I agree with Gary. Your Dr is an idiot for telling you to stop doing something that was helping you feel better. Diet is complicated, and I don't know if SCD is really the answer for you, but if it's working why quit it?

As for your black mucous, that is likely to be blood. And your hair loss is probably due to the meds - most of us who take mesalamines also take folic acid to help reduce these side effects.

There are a lot of people on the forum frustrated by their disease. That's why this forum exists. Stick around and learn. You will discover a uncountable number of ideas and alternative solutions to your problems.

And by the way, I think you'd be better served by a mesalamine retention enema rather than a suppository. And it might be worthwhile to use a steroid enema to help force a remission more quickly than the mesalamines can, and then rely on mesalamine for your maintenance medication. Your disease seems to be rather stubborn, even if it is being called "mild." Steroids are useful in cases like this.
Posted 5/22/2014 8:25 PM (GMT 0)
Thank you both so much for your responses!

Right, Gary, it is a life-long disease and my doc did say every patient takes their own special "cocktail" of meds that works for them. I guess I haven't found my recipe, yet.

I Might go back on SCD, or at least start eating way better to see if it helps again.

I will definitely keep your medication recommendations in mind when seeing my doc next, kazbern! And stubborn... that's a good way to put it! :)
Posted 5/22/2014 9:26 PM (GMT 0)
" with no known cause "

I thought auntie biotics caused yours gary ?
Posted 5/22/2014 9:42 PM (GMT 0)
The literature states UC is idiopathic. I strongly believe that antibiotics caused mine. No proof, only circumstantial evidence. Most patients and doctors don't have any idea what causes UC.
Posted 5/23/2014 2:37 AM (GMT 0)
My vote counts for absolute nothing since my experience is very limited, but I think if something is working for you, stick with it. I am hoping to try SCD on my son once we get his IBD under control.
Posted 5/25/2014 4:47 AM (GMT 0)
I agree with Gary & Kazbern. This is a chronic disease and you will manage it better if you read up on it extensively. I read lots of journal articles, clinical studies, books, and posts on this site for over a year, and consulted with several specialists. I was also allergic to several of the UC meds, either got hives or drug fever or both, so got sicker and creatinine levels very high. I felt like it was a losing battle many days. Had to wear thick maxi pads when blood would leak out. As for diet I personally concluded the SCD diet wasn't for me and I ate very plain food during a nine month flare - broth, hot water / tea, rice, bread (challah was really good cuz of eggs), and plain protein (tuna, salmon, turkey, chicken). No beef, no dairy. Was told the least fat the better. Also fiber didn't work for me (caused more cramps & blood) so avoided all fruit & veggies. It was extremely restrictive for 9 months. Several days I would go to work without eating much, because office didn't have private bathroom. Only after this flare subsided did I slowly reintroduce cooked veggies (squash, sweet potato), green drinks by Columbia Gorges, and easy to digest fruit (cantaloupe, papaya). But it's all trial and error, so your body will tell you. I was afraid of remicade given lymphoma risk but it finally stopped the flare & life is more normal than I imagined possible. I have great humility, much gratitude for fellow sufferers, and eating is fun again. It's a chronic disease but the bad times will pass if you persevere and draw on the strength of fellow travelers. There are veterans here who have much to offer from their experiences. I would've given up without their candor & support.
Posted 5/25/2014 11:25 AM (GMT 0)
Hi, food is the go so you can beat uc...loved one had this or just has this for now....had four years of pain suffering anger depression and all the rest so you follow this advice and you can win like we have...we honestly believe that uc comes from an extensive degredation of the gut sysem caused by huge influx of chemical riddled food poor quality food and equally poor quality life style...our loved went to university and followed the classic uni life style..all crap takeaway no real food acid food chemical foods huge amunts of grog beer and spirits..very spiorty out going and all of that...suddenly uc,,,did the usual doctor pill thing waited waited nothing worked...read the net extensively on uc ..complete despair...loved onec said only marriage would be to a toilet.....then came miracle..lokked at uc as a bug ...found a wonderful American health researcher who blamed food as the culprit and suddenly made sense...prior to uc we had a wonderfully operating gut system well balanced able to deal with the millions of parasites bugs germs and bacteria we put down it as we eat and drink..but the crap food the chemicals and the acids destroy our balanced system..think of the terms ..ulcerations colitis lesions contusions acids sores red raw abrasions...our new gut system...the bugs can now get in and they do..so reverse the process eat only good food..get this from web..other uc sufferers and what they eat...get rid of all wheaton glutten sugars acids dairy lactose foods..nevereat these...the bud loves you te eat them...it loves the new environment..do everything the the bug hates and you win..we did..go out into the sun you get vitamin d the bug hates this the bug likes you to stay inside and mope about crying poor mouth so go outdoors and have fun..the bug thrives on crap food takeaway food old reheated food chemical food filth food slop food and garbage food...that's why it lives on and grows...it got in the system because of this food to begin with...this is its food so stop feeding itand you win...its an awful long struggle but you can win...you were winning until you stopped...it took us three years to know this...every thing the bug hates you to do you mest go out and do..its you and yours against the bug..so get your boxing gloves on and fight like you never have before and you can win...we did..never eat takeaway..crap food 47 times reheated food strong curries dairy glutten wheaton or acid foods..the gut is very sore and hurting so you must gently help it back to normal...reverse the process that got you there...use alovera in the pill form..read the net on uc and see what you can eat...it really works...you said you felt better on that diet so quickly getback there..thats how to win..reverse the process with the food and never never go back...
Posted 5/25/2014 12:07 PM (GMT 0)
and more...would have climbed Mt Everest to find cure for loved one at the height of this sickness..made dreadful mistake of looking for the difficult the more complicated looked for something alien to the body something unique got lost in this until we applied the simple rule and looked for the obvious...it is the food that gets us to the uc point...and its the food that will get you back..did you know that some of the modern foods are so changed and degraded that the body does not even recognise them as food...think of the words genetically modified..chemicallcy enhanced...adulterated ..irradiated to name a few...no wonder the wonderful gut balances are destroyed..the bug loves it and screams happy Christmas and when you are really sick and eat some more of this food the bug has a party and screams happy new year..yes yes yes give me more.. so starve the bug help the worn gut and reverse the process..as you do this your body will respond and help to the human body is very very good at self help...get a book on nutrition from library...examine carefully all you are going to eat and see if the bug likes it or hates it and you win...it really is amazing to see the change...as I think you already were...the human gut system is alkaline soft genly well balanced and harmonious...you must slowly recreate this..like we did or our loved one did..and it worked...so work together with supportive loved ones..it is you and yours against the bug so more on the team is great for you....the only real defense the bug has is a corrupted gut system so change the system back to what it was..the bug hates this because it knows you are on to it..it lives thrives and grows on sickness...so reverse the process and it starts to lose ground...never never feed it what it wants....always do what it does not want and you win..examine all you are about to eat..go outside and always get healthy exercise the bug hates this..when you start to feel better never give the bug a break or a chance to rejuvenate..with good eating healthy exercise and positive outlook you beat the bug down get on net to see other uc people what they eat and drink,,,some will suit others wont...uc is like this..it took us four long years to find the simple solution always sad about that so get on net might help someone to see...hey you never know one person might do this or read this and get help....it really does work
Posted 5/25/2014 12:19 PM (GMT 0)
sorry forgot most important...you must use a very good pro biotic like vsl 3 or supershield to flood the system with good bugs and good bacteria the monster bug hates this..as ithink these gradually over whelm the bad bugs...by the way lowed one went to special uc clinic in big city..had all tests and shows none at all iof bugs parasites bacteria at all associated with tests of an active uc gut system...we all jumped for joy..the good doctor was mystified but we were not...but hey you cant tell them ...I guess it turns the medical books upside down...anyway they have a perfect answer ..its called remission...its the FOOD>>>>
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