Feeling Hopeless

if you still have the same doc that first DX'd you, it's time to find a new one -


if you haven't tried rectal meds, that should be on your soon to do list, assuming you can get a script from a doc -

what foods have you eliminated ?

Hey Ash, what medications are you currently taking to help the inflammation? Are you currently having a flare up? When you last tapered off the Prednisone did you achieve Remission or continue to experience inflammation symptoms?

Everyone's balance in diet will differ- its up to you to know your trigger foods. What have you tried so far in terms of diet change, supplements (vitamins), pro-biotics etc? Personally when in a bad flare, like when I'm at my worse: ( Bloody stools, nausea, undigested food, diarrhea, pain)- I try to ingest foods that will only help in soothing my GI tract: To me that means no lactose, no gluten, no processed sugars. Example would be herbal teas known to help mucosal lining, bone broth, juiced carrots, jello, apple sauce, tons of fluids. When I start to see results- my bowels reforming, proper absorption of nutrients THEN I will slowly begin to incorporate back soft, soluble fibers, fermented foods, protein etc into my diet. Example would be Kombucha, Kefir, Salmon, Free range eggs, Fruits/Veggies I'm known to tolerate. Eventually I do treat myself to an alternative treat to make up for cravings in Sugar once I'm in Remission, but moderation is the key for sure lol

This is all in conjunction with taking Vitamins ( VitC, b12, Iron, VitD, Multivitamins and I take more than the recommended while flaring), Prednisone for initial inflammation AND maintenance doses while working up to Remission.

Personally when I reach normalcy in Remission I can eat whatever I want within moderation. Do a liquid fast the day after eating something horrible for me, but I'm literally going to stop doing that. Every time I have had a flare up I was the one responsible for it. Not my genetics/stress/environmental factors. ME! I binge ate something or fiended excessively even for a day. Always results in a flare up! So while some encourage the use of medication throughout the entire duration of dealing with Colitis, I find no need to once I regain remission. The only thing putting me back in the hospital or back on medication is myself. 4 out of the 7 GI specialists I have spoken to agree with me that once I am in Remission I can take the necessary lifestyle changes to avoid inflammation again. Its not a cure, your gut will likely never be the same again but it's not a death or prison sentence.

Hey Red_34, I do take 4 Lialda daily to maintain my inflammation. I've been on Lialda since I was diagnosed in 2013

Natof9, I am currently in a flare up. I have been in a flare since March of 2015. For inflammation I take 4 Lialda daily and I'm also on Humira which I inject once every other week. I was put on Prednisone for a very short period of time back in April and I felt amazing. However, about a month of being off of prednisone, my symptoms slowly started to get worse. Mainly just diarrhea. A few weeks ago I started taking a probiotic. I've been trying to modify my diet for a while now. I try to eat salmon a good bit and I try to stay away from sugar. I don't eat any fruits or vegetables or anything with oats or grain (I used to love oatmeal so much). I also don't go near anything that contains carrageenan and try to avoid things that have ingredients such as xanthum gum, carrob bean gum etc. I feel like my body is extremely sensitive to food so I never really know what to eat. I eat a lot of white rice and baked or grilled chicken and also a lot of eggs. However, nothing I'm doing is working or helping me feel any better. I feel like I should try something new with my diet but I don't know what

Natof9 said...
... 4 out of the 7 GI specialists I have spoken to agree with me that once I am in Remission I can take the necessary lifestyle changes to avoid inflammation again. Its not a cure, your gut will likely never be the same again but it's not a death or prison sentence.

Is it within forum rules to have a sig that drives traffic to you own advice website? Seems discussions should stay here.

I also don't have much luck with dietary changes except low residue diet while flaring. Agree you need a specialist, do you know the results of your first colonoscopy? The location of inflammation is important, and you may need a rectal enema.

Definitely take a probiotic and a fiber supplement like psylium seed powder to bulk the stool.

Best.

I had zero success with diets and alternatives. Uc is very individual, what works for one doesn't necessarily work for others. Some swear by diets, others eat everything they see, so go by what works for you. Cheers,

@Ash94- Do you see any progress with the Lialda/Mesalazine? Like do you feel they are doing anything for the current flare up? I can't relate to your medications, because I only tried Remicade and Humira one occasion each and decided it was not worth it for my body. If these treatments are not showing adequate results in your inflammation I would go back to your GI and ask for any alternatives, even possibly returning to prednisone for a short period. That's if everything you're attempting is not working. In the mean time I believe it is important while during a flare to literally eliminate any factors that will contribute to reducing inflammation of your intestines and only consume foods/liquids that are known to have healing soothing effects on the GI tract. Start from square one basically. You know the liquid soft diet they put you on in the hospital? Jellos, soup broths, water, juices, teas etc Get on that for a few days until your digestive system has a small break. In conjunction with your medication you should be greatly helping along the process. If and when you start seeing gradual results ( Remember your body takes time to adjust. Weeks or months before experiencing lasting effects so you just gotta stick to a plan and keep it up) Personally I look for results by 3days, then a week and by the end of the month get a larger perspective of the cumulative results. Also try not to eat large meals and break them down throughout the day. Sometimes less is more and once you begin seeing signs of remission you can start reintroducing the heavier meal options. Just make sure you are getting enough nutrients. Frequent blood tests are a good way of monitoring that.

As for teas you can do some research on herbal teas for optimal digestion. There are many opinions, research studies and information on natural tea remedies, but what has been working for me is SLIPPERY ELM BARK POWDER (Cannot stress this tea enough lol) Green tea matcha powder and Raspberry leaf tea. I just rotate around those 3 and I know it's soothing effects are not just psychological.

As you're aware, everyone's genetics are different so it's really going to be trial and error. I've done it my stubborn way eating whatever I want regardless of consequences, I've done it the ultra disciplined way- getting stuck in weird diets- using myself as a literal guinea pig. My personal conclusion is that I gotta stay away from breads/yeast/sugar/gluten/wheat/bad quality meat/pastas/alcohol/coffee/lactose. If I keep to that, no problems. If I falter, then problems. :) Really hope that helps motivate you a little. It's not easy to accept drastic change. We all need encouragement and support.

@DBwithUC- I understand the need to be skeptical, but I'm just a 26 year old Nursing/Anthropology student deeply passionate about helping others and have found that helping myself has been the best way to do that. I haven't suffered this dis-ease as long as most I've met have, but I believe my intentions to heal are genuine, realistic and logical so why not share my experiences with others? Especially at a time when there is an increase, an epidemic in digestive disorders for youngsters in North america. My blog is a day to day journey of my personal healing process, my diet protocols, new upcoming research on the disorder and some motivational quotes etc. I'm not claiming or selling anything other than my own experiences and observations.

@Natof9 it's hard for me to say whether the Lialda is working or not. I've been on it for so long that I have no idea what would happen if I quit taking it. Same with the Humira. I don't know if I would experience worse symptoms if I stopped these meds. I am a fan of tea but have never been consistent with drinking it. I used to drink peppermint tea for my cramps so I'm definitely going to try the teas you mentioned and be consistent with it

U B Tough, thank you so much! That means a lot! I'm glad that there are forums like this where people can give advice and support each other!