What does remission feel like?

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I'm still in my initial flare, diagnosed with UC on 31/01/18. not feeling very positive at the moment. Just want to know what it feels like to reach remission? 

Can you tell if you're about to go into remission? 

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  • Posted

    so Jamie I tried everything when I was misdiagnosed with crohns and I had uc and found things that I ate made me better and no stress, Roasted kent pumpkin in the skin made it better, so you will have to find something that makes you feel better ha even pizza for me nothing with fruit -dried apricots, raisins and spicy foods made worse and laughter watch some good comedy programs, I was told try red vegies but make a diary on foods. look I was watching this programe on tv forgot his name but he was the guy who play super man and he was in a wheel chair and he said this lady had written to him and said she knew how he felt she suffer from intergestion can  spell and he smile so I just learn to laugh its hard but it can be done and people can catch that off you and they will be ok Thinking about hope this helps.

     

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  • Posted

    You can't tell when you will get to remission.

    Please tell me the exact meds your doctor has tried on you both oral and the other end. And what meds you are on now.

    Dr.s usually just go down a script of prescriptions.

    I am in remission 3 years. Tried all diets and meds except for immunosuppressants since I also nhave a blood cancer.

    I finally figured out my formula to remission, which involved one medicine to get the flare down, then no red meat and intake of LIVE probiotics.

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    • Posted

      Hi shimyyuh, 

      So, I started off on Asacol, 800mg x 6 per day + 1 Predsol Retention Enema daily. 

      I struggled with Asacol tablets being fairly large so moved to Salofalk granules, but had no change so struggled on with Asacol. 

      I've been on Asacol 800mg x 6 daily ever since. 

      About 2 months ago, I saw an IBD specialist who put me on Prednisolone tablets (5mg) as follows:

      • 8 a day for a week

      • 7 a day for a week

      • 6 a day for a month

      • 5 a day for a week

      • 4 a day for a week

      • 3 a day for a week (I'm nearly through this now)

      • 2 a day for a week

      • 1 a day for a week

      But, I'm really struggling, seems I'm making no progress. I have bloody mucus all the time. Not really ever passing any solids, just mucus and tiny bits of crap sad 

      I've just spoken to the IBD specialist again and they're going to prescribe me mesalazine enema and up my dosage of the steroids again. 

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  • Posted

    Hi Jamie,

    ?It has been some time since I have posted anything on this very good web site. Let me reassure you that there is light at the end of the tunnel, its just finding out what works for you, because we are all different but with the same symptoms. I can only speak from my own personal experience and its not to everybody's taste! I am still on meds and will be for the rest of my life, because like most of us when you have UC its there for good unfortunately just depends on how you can try to control it. I'm gonna try and keep this as brief as I can otherwise it ends up like War and Peace....... So here goes......I developed UC 2yrs after I had packed up smoking, and found there is a link between the two. When I was at my worst, 20+ times a day on the loo plus 6 times at night I did research into the link and even discussed it with my consultant who knew about the link. So long story short, he was about to put me down for consideration to have a bag to fitted, and at that point I said I was going to start smoking again because of what I had found out on the internet regarding the link. Well he leant back on his chair smiled at the UC nurse and said to me very quietly... Mr Brown start smoking and come and see me in 3 weeks. After the first day of back on the fags my visits to the loo started to get fewer almost immediately and as days progressed they got less until I was able to resume a fairly normal existence back in public. Now promoting smoking isn't a good idea I know but for me the alternative of having a colostomy bag fitted filled me with horror. I do not smoke any more I just used it as a temporary fix, but without a doubt I would be straight to the corner shop for twenty B & H if I started being very poorly again. 

    ?P.S. google search "does smoking cure colitis" and make up your own mind?

    Keep your chin up and do what is best for you.

    Terry.

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  • Posted

    Thank you for all the info, don't worry it wasn't TMI. At my worst I was crying on the toilet and barely eating anything! I prayed a lot. I was even giving myself warm water enemas while on vacation!

    So back to you...all the meds you listed are pretty much the script they go down....the not so funny thing is, if you look at the side effects for most things the doctors prescribe, they are very similar to what you are already going thru, makes it hard to see what might actually be working

    I can only tell you what happened to work for me and I'm sure you have seen during your research, the common thread of UC, is what works for one person may not work for the other. That being said, I do have a friend that I shared my info with and she was off her Lialda within 2 weeks even though I did not instruct her to do so😁, so that was a leap of faith on her part.

    During my Infinite searches on the internet, One evening I put left sided UC in the search and came up with MesalaMine enema NOT MesalaZine !

    1st let's just think about your traumatized intestine, just common Sense would seem to indicate that direct medicine to the wound rather than oral meds would be best.

    Also, stop with all the fiber, the wound doesn't want the scab to be rubbed off daily, right? Drink a lot of water, or coconut water is a great natural inflammatory. Soft foods for couple weeks, eggs, berries, avacadoes.

    I am sure you have tried specific diets, but think about it, will diets even work if the wound is Soo advanced. More than likely, your condition started from a storm of events, 1st your system probably doesn't like some foods that you have eaten all your life. So it has always been slightly compromised. Then throw in maybe some unmanaged stress, straining, anger, dehydration, maybe some antibiotics, and boom, the perfect storm.

    In my opinion, you have to be lucky enough to find a med that controls the flare enough that then you are lucky enough to find the food that might be agravating the condition.

    This is the light that Was given to me and I am forever thankful. Our lives are so busy that sometimes it might be right in front of our nose and we still miss it. That is what almost happened to me. The enemas showed noticeable improvement almost immediately! Then I ate red meat and had RED not pink blood the very next day. I didn't get the msg! The enemas cleared it up again, I ate red meat again, red blood again, this time the anvil hitting my head worked😁

    So here it all is. Get the mesalaMine enemas. You get 4 boxes of about 8 in a box, plenty. Google Mesalamine, there are 197 interactions with other meds;( of which 37 are major! You might just have to get off all drugs when you take them, hell, how much worse can you make yourself, right? Hopefully you see noticeable improvement right away. If you don't, then I would still stick with different medicine enemas, so you can keep applying right to the trauma.

    I would also stop red meat and dairy to start with, while you are healing. I would also eat 2-3 coconut milk yogurts per day, and also hydrate with water or very cold coconut water, the colder it is, the sweeter it is. Up to a liter a day. I found all these treatments all within a few weeks time, kind of like it was meant to happen. I also took a sip a day of Inner-eco LIVE probiotic coconut water. It might give you gas, so try every other day if you have toowink

    This is going to sound silly but if the enemas work to lower symptoms, then the rest of the healing is you listening to your body and finding out what it doesn't like, which is all found out in the bathroomwink. Red meat may not be your thing, who knows maybe it is gluten, or refined sugar, or whatever...though I would start with the red meat and dairy. I use almond milk and honey in my coffee and plant based butter and olive oil for cooking. We are pretty much a made from scratch family, I like to cook. So no boxes in our pantry. I was never a soda guy, so getting rid of refinwd sugar was easy since I only used it in my coffee. Honey is great, In use it in a lot of sauces toosmile Big jug at the Wally is the cheapest.

    Please write me if you get the MesalaMine enemas, because I have specific instructions on usage for that as well! And don't forget all the drug interactions, you might have to take a leap of faith. There are many posts out there of folks saying the mesalaMine didn't work for them, but NONE of them mention what other MEDS they were simultaneously on!

    Peace, G-d Bless

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