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Newly diagnosis

Hi All

I am looking for a bit of advice & help! I was diagnosed with Colitis just over two weeks ago and I am having a hard time getting my head around it. I had a flexiscope and they couldn’t go too far because of my inflammation being bad and said I would need to go for a full scope in 6-8 weeks. I have been put on steroids for 8 weeks and I am taking Mezalasine. I Have been told to follow a low fibre diet also. I guess I really just don’t understand how to control everything. My symptoms have improved very very slightly but is this normal that they haven’t improved entirely after two weeks? (May seem like a stupid question but I feel like the doctors didn’t explain fully I just got given medication and was sent home). Food is a big one for me I am so conscious of wanting to do everything ‘right’ I am obviously doing the low fibre diet recommended but I am so scared of trying certain foods etc with me obviously being in a flare is there anything anyone would recommend doing/not eating? Also once you are out of a flare how does food then impact? I have a staycation booked in a couple of months where we will be eating out and I am so worried about what I will be able to actually eat? If anyone can give just any advice/tips/help for someone who has been recently diagnosed it would be so majorly appreciated!! Thanks so much x

  1. Hi .
    Mezalasine can take up to a month to begin easing symptoms, so not really abnormal to still feel unwell two weeks in. Some treatments can take up to 3 months! Also, treatment is very much trial and error, so you may need to try a few different ones before you notice any real improvement in your symptoms.
    I literally wrote a blog a few days ago which may help!
    Food and Ulcerative Colitis: https://inflammatoryboweldisease.net/living/personal-food-boundaries
    - Sahara (team member)

    1. I was diagnosed in July. Got the same 8 week steroid medication but only 4 week's worth of mesalazine. After just 1 day I was cured (so I thought). I though after 4 week's I stopped the mesalazine and continued with steroids as this was the prescribed amount. I was very wrong. It immediately came back to the point I ended up in hospital. Now I have 8 weeks steroids and 8 weeks mesalazine. Again after just a day or 2 the symptoms are gone and I feel normal. I eat all sorts of different foods with no bad effects on me although I have cut down dramatically on alcohol and cut out spicy food altogether. I cannot say spicy food was a trigger but would seem a good idea to avoid.

      Like you I am new to the condition and new to the forum but come here to read and learn from others as well as learn from my own experiences.

      Would love to answer any questions even if I am inexperienced so far.

      Also, I was wondering if anyone thinks that something they ate a lot of, drank a lot of or did a lot of earlier in life may have contributed to getting this condition as it seems to affect people randomly. Personally I put mine down to years of very hot spices and rediculous consumption of beers and carbonated drinks. Can't be proved but I think I destroyed my insides over the course of 20 years of the above.

      1. Sleep and stress. Both coincide with this. Highly stressed and 3-4 hours sleep a day coinciding with the exact time this IBD showed up and while it continues.

        Update. Have been perfectly fine since coming out of hospital 3 weeks ago. Keeping up with all meds but it's starting again. I can only seem to go Bout 3/4 weeks without this. Early days I know. Will be spending the next few days monitoring it closely

      2. I hear that @uc_newbie!

        Stress and sleep are both issues I have too. I didnt have an issue with sleep before though, but then I had surgery soon after diagnosis so my stoma was often active at night, meaning I had to keep getting up to empty my bag. Then I had a Jpouch and had the same issue with that. Then a bag again, then back to Jpouch, and now perm bag lol. I only have to get up once most nights, but now I have Fibromyalgia too which wakes me pretty much every hour! It's a nightmare!

        I was the same as you for a good while. It took a long time to find a medication that helped my symptoms. Pred did work initially, but then I became steroid dependent, so every time I tried to wean off the flare would return. Keep your team informed so they know what's happening as it's happening. Fingers crossed they can find something to help you achieve relief from symptoms for longer periods!

        - Sahara (team member)

    2. I’m suffering with 3 diseases from last 10 years
      1 crohns
      2. GERD
      3. By lateral AVN

      Frankly after suffering from the sever crohns inflammations cramping, I thought the death was far better than i thought, as well as we know how sever the pain would be and I got multiple times hospitalised totally exhausted for weeks with a continuous inflammations,
      I was on medications, the crohns was like off and on

      Finally I guess the god showed me some mercy on me and I met one doctor he was giving me like a hybrid treatment with multiple combinations to treat answers he treated many crohns patients
      Today I’m able to eat and drink few bears and able to eat spicy food and I’m under remission from last 4 years till date no Inflamariin only remisssion leadin a happy life but still a bit GERD issues sometimes worh 70% controllable die to tat hybrid medications

      Coming to medicines I was taking 1 pill in morning before breakfast and 1 before before dinner from last 4 years
      And chia basil seeds liquid , papaya and eggs in the breakfast.

      I was permitted to drink but not smoke once in a week but I’m still cheating my self with my uncontrollable and taking one cigarette weekly once

      This has become my routine and surviving successfully managing my diseases without any issues till day.

      Let’s me know if you guys have issues
      I can share my experience to you bcos I have 10 yrs exp lol 😂

      1. Hi .

        I am pleased to hear that you have found something that helps alleviate your symptoms, but it is important to note that everyone is different and what works for one may not work for another.

        Any decision to come off or change treatment in any way should be dicussed with your IBD team first.

        - Sahara (team member)

        1. Hi @sahara,

          The final main moto of the medication is to escape from the operations and without side effects, they referred me to biologics but its far worst. So i took a differnt route now im taking only 2 pills per day its hardly costing me 200 to 300$ per month but im saved from all those issues and expensive biologics, but any how i spoke to my doc and he said when the medicine is workin then its fine i can continue.

          And currently the medicine is working for many people especially who is suffering from crohns everybody are fine

          Im able to live a normal life under remission for almost 4 years without any side effects

          Krish

        2. Hi @sahara,

          The final main moto of the medication is to escape from the operations and without side effects, they referred me to biologics but its far worst. So i took a differnt route now im taking only 2 pills per day its hardly costing me 200 to 300$ per month but im saved from all those issues and expensive biologics, but any how i spoke to my doc and he said when the medicine is workin then its fine i can continue.

          And currently the medicine is working for many people especially who is suffering from crohns everybody are fine

          Im able to live a normal life under remission for almost 4 years without any side effects

          But its worth a try rather dying wiht pain and nightmares

          Krish

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