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Newly Diagnosed and Confused

Diana colitis australiaMeet Diana:

I am 33 years old. I was diagnosed with pan colitis a couple of months ago which came as a big shock! I am still trying to adjust to this condition. Having a sense of humor and being partial to toilet jokes definitely helps.

Some more about me:

I live in Australia and I work as a researcher and love science. My hobbies include reading, reading and more reading as well as yoga. I do more reading now and less yoga, but hope to get back into it when things settle down.

Current Colitis Symptoms:

Abdominal pain (especially lower right abdomen), lack of energy. The medication is so far keeping other symptoms away.

My Colitis:

Hi There!

I am so glad I found this site – Adam you are a life saver! The life stories shared here have helped me so much already. And now, I am finally strong enough to vent! Apologies for the long post….

Unlike many people whose stories I have read on this site I have always suffered with constipation – and been admitted to hospital a couple of times because of it. This year new symptoms emerged – pain, urgency, having to run to the bathroom lots of times with what I thought was a stomach upset, then passing nothing more then blood. My worst flare up happened in July this year. I was supposed to be enjoying time off in Europe but spent most of two weeks looking for the nearest loo! I was passing lots of blood (and nothing else!), fatigued and extremely worried. And, the worst part for me was that my bum felt like it was on fire! I couldn’t sit down. I hope some of you out there can relate to this. Needless to say, my husband and I did not get to do a lot of sightseeing!

My symptoms continued when I got back home, and I lost a lot of weight. My doctor ordered a colonoscopy, and I got the diagnosis of pan colitis. Whilst still reeling from this, I was told to take prednisolone and mesalamine, but (knowing something about prednisolone side effects) refused the steroids, and have been taking mesalamine in various forms for the last two months. I am not sure if I made the right decision, as I was in shock at the time, and felt I wasn’t being taken seriously by the doctor. I have switched doctors since, and my new doctor does not want to try prednisolone yet.

The drugs worked brilliantly and my bum breathed a sigh of relief (!) almost immediately – the pain went away, and I felt normal. It did not stay that way, and I have had several episodes of constipation accompanied by pain in the lower right abdomen, but no urgency and no blood. I have completely modified my diet, and eliminated dairy as well as most sugars and processed foods. I still need to take some red meat due to low ferritin levels, but have cut down. I have celiac disease, so I don’t eat gluten. I take Aloe Vera Juice and a probiotic (40 billion). I take vitamin D as I was told I am low. I have cold pressed vegetable juices every day.

I had a repeat colonoscopy a couple of days ago, and was told that the inflammation looks better but is still affecting my entire colon, and I am waiting on biopsy results. And now (maybe because of the scope?) the pain in my bum has returned. I am also getting mouth ulcers, as well as ulcers on my hands. So I am a bit down, and uncertain if this means that I will have a flare up. I feel like I am doing everything right, yet I can’t get on top of things (or to the bottom of things!), and I can’t seem to gain any weight. I am scared of being told to take Prednisolone or something worse.

I am so new to this, and have lots of questions.

  • How can I put some weight on?! Nothing seems to work!
  • Does anyone else have constipation instead of diarrhea as a symptom of their colitis and how do you deal with it?
  • Does anyone else have lower right abdominal pain?
  • How about mouth ulcers and ulcers on your fingers?
  • How long does it take for the inflammation to go away?
  • I am kind of disappointed that the colonoscopy still showed inflammation. But maybe it is too early to expect it to be clean?

I’d appreciate any advice you could give this newly diagnosed UCer.

Thanks heaps!

Colitis Medications:

I take 2x 1g mesalamine suppositories, 1x4g mesalamine enema (what fun!), and 4g Pentasa granules.

I also take:

written by Diana

submitted in the colitis venting area

11 thoughts on “Newly Diagnosed and Confused”

  1. hi there, my name is april, and yes i can relate to alot of things you are talking about. Im also 33 years old and have colitis. I was diagnosed 22 years ago tho. I did have alot of pain on the right lower abdomen and was diagnosed with endometriosis and had to have surgery for tissue removal on theoutside of my bowels. Being a women i was told the only way to get rid of the pain and the endmetriosis was to hve a histerectomy or stop your period. I have had surgery but nothing more as of yet. but the pain has subsided somewhat. I am however going for a colectomy now becasue the disease has gotten worse over the 22 years… but this is just my findings. You may want to ask if you can get tested for endometriosis. It is commo with women and bowel issues. Even the pain in the bum is common with endometriosis. Good luck hun.

    1. Wow 22 years April, I am sure your joints and body just aches. I think that is the side effect of the steroid. Any suggestions on how to get rid of joint pain?


  2. Hi Diana
    So sorry you had to go through that and on your vacation no less. This disease is very crippling you feel like you have no control over anything. But it does get better so hang in there. Your mesalamine choice was good especially in Europe. I’m from Turkey and I live in Canada. When I got diagnosed I was in Turkey and my doc gave me mesalamine granules it was the best thing ever. Unfortunately they don’t have the granules in Canada and I have been taking mesalamine tablets which aren’t as effective. So looks like you have a good diet and supplements with a great medication. Don’t get discouraged you’re gonna do great:-)

  3. Hi Diana,

    So sorry to hear what you are going through. I have had colitis for 14 years and really think you may need to take the steroid to get the inflammation under control try think positive you may only need to take it for a little while. Once you go off continue your meds and continue your diet. I really think diet is most important. Hopefully this will all work out for you and will not flare again. Wishful thinking I know but always try to think positive.


  4. Hi Diana
    I’m sorry to hear that you’re holiday got spoilt and that you’re still suffering. Colonoscopies sometimes do agrevate UC symptoms as it did with mine.
    I live in sunny Qld. I too used to have constipation and bloody diarrhea. Like you I am also celiac and also have low iron levels. I was diagnosed with UC earlier this year and was given sulfasazaline and salofalk enemas. After 5 weeks of being in and out of hospital and given various meds for constipation in between I decided to start a modified SCD diet – no gluten, No dairy, no nightshade food (no potatoes, chillies, tomatoes, eggplant). I’m not on prescribed medication but do take probiotics and supplements. I have been mostly symptom free for last 6 months. I still have the constipation problem especially when I eat red meat. I eat cook spinach and carrots with meat and this seems to help. There’s also a tablet with Siena which helps soften the stool (available over the counter in pharmacies). I take that if I eat a lot of meat.
    If you are able to then use steroid Enemas until everything settles down. Use Flushable moist wipes – helps calm the fire on the bum :)

    Hope you feel better soon :)

  5. Diana,

    Always keep taking the probiotic and the vitamin D. Forever. The probiotics will help with your intestinal flora, and the vitamon D is great for inflammation. You can always up the vitamin D without harm, and eat it with fats…it is absorbed better that way!

    Also, take the ptobiotic first thing in the morning, on an empty stomach, with water.

    I have pancolitis too, and have managed to attain remission and also get drug free (I was on mesalamine for over 13 years straight)…just with a 50 billion strain probiotic and fermented L-glutamine powder…and vitamin D!!

    Cheers, and welcome to the site!


  6. Hi Diana,
    I agree with Shona. If it were me I’d take the prescribed pred. What I would seek to do is squash the flare – this is what the pred can do. Once you have stability you then look to keep it that way. This is what drugs like 5-ASA (Pentasa) are for. There are side effects from pred, and they are well documented in the literature, but when I’m having a flare I feel the pros definitely outweigh the cons when it comes to getting better. I dislike having to take it myself but I now know from experience not to wait for the bleeding to get worse and worse but to hit the pred and knock it on its head straight away.
    I too have pain on my lower right abdomen (descending sigmoid colon I think its called) just below where my ribs end. And I put on weight when I’m on the pred as it makes you want to eat heaps!
    Good luck,

  7. Title sounds like the Led Zep song Dazed and Confused.

    1. How can I put some weight on?! Nothing seems to work!

    This is tough, usually it takes until my diarrhea is gone at least. After that I try to eat alot saturated but healthy fats, such as grass-fed butter and coconut oil. GF butter is a good source of byutrate but watch out if you are sensitive to dairy, I usually take two tablespoons.

    2. Does anyone else have constipation instead of diarrhea as a symptom of their colitis and how do you deal with it?

    Nope. Not me. Are you sure you don’t have a fistula(narrowing of the colon)?

    3. Does anyone else have lower right abdominal pain?

    Occasionally usually at the flexure.

    4. How about mouth ulcers and ulcers on your fingers?

    No ulcers, but weird pimples with no head.

    5. How long does it take for the inflammation to go away?

    It’s very unlikely that it will ever completely disappear. I have had UC years and been symptom free, but still a little had a little inflamation show up on the scope.

    6. I am kind of disappointed that the colonoscopy still showed inflammation. But maybe it is too early to expect it to be clean?

    Hard to get it completely clean, although not impossible. Symptom free is what I aim for.


    Outside of that, I follow a routine fairly similar to Bev, and I highly recommend it. Probiotics(I use kerfir) in the morning, l-glutamine, vit-d and I have recently added Zinc and L-Arginine. Zinc seems to be a big one I was missing, might be more commonly depleted in UC patients than is thought. When I added it I had some more solid BM’s. I did this based on:

    Seems to be a key compontent to a tighter gut.

  8. Hi all,
    Thank you so much for all your replies.
    Update – my biopsy results came back and my UC has gone from “moderate/severe” to “mild”, (even though it is still affecting my whole colon) – which I am happy about. I was also told my UC is now not active, which is sort of confusing because I still don’t feel a 100%, I guess it takes time. I Have another appointment with GI doc next week so will ask about taking pred to reduce inflammation even further.
    April, how did they diagnose your endometriosis?
    Shona, I’m from Melbourne (not always sunny here!). Why did you eliminate nightshade food? Do you have pancolitis? I started the SCD diet pretty much as soon as I was diagnosed, however “fell off the wagon” just prior to second colonoscopy. I am now back on the diet.
    Andy, I do feel dazed and confused. I am pretty sure I don’t have a fistula – I specifically asked about this and was told they saw nothing like that when they did the scope. I will aim for symptom free and try to find the other supplements you mentioned.
    Thank you all again!

    1. Hi Diana,

      Glad to hear your UC has calmed a bit. Take it easy and get plenty of rest. Oh you live in the Shopping city Melbourne :) I hope to visit one day in summer. Unfortunately the cold weather is not going to help if you have joint pains and I suffer from joint paints from having UC. Now my GI didn’t tell me what type of UC I have, all I was told was that over 35cm of my colon is inflamed. I get pains on left side when I have a flare and mostly right side if its constipation. I don’t eat nightshades (potatoes, eggplant, chillies, tomatoes) because they seem to flare up my UC and the whole stomach cramps and bloody diarrhea follows. Even if I eat a tiny bit it seems to flare up. My skin also becomes red and really itchy after eating foods from nightshade family. My blood results came this week and I need to up my Vit D even more so now I am taking x3 liquid Vitamin D capsules (1000 IU each) – despite living in sunshine city I’m stuck inside an office most of the time. I follow a very strict diet and I used to keep a diary of the foods I ate. There are Apps for IBD to help keep track of your symptoms, medication and mood and even bowel movements :)
      I hope you get a speedy recovery just in time for Christmas.

  9. Hi Diana,

    I’m sorry to hear about what you’re going through.

    Have you been tested for Crohn’s? Just wondering. The mouth ulcers make me think of Crohn’s…

    You have made GREAT dietary changes… congrats! Probiotics and Vitamin D are great things too! You are on your way to healing your colon, but yes, it does take time. And it is different for everyone. After a nasty flare, I think it was over 4 months before the healing really kicked in… inflammation went down…
    In addition to diet, probiotics, and Vitamin D, you might consider a turmeric supplement (an excellent anti-inflammatory) and glutamine powder.

    You can try drinking coconut water when you have those horrible stomach cramps… works wonders for me!

    As far as putting on weight… patience… it will come back!!! And even if you do weigh less than you did before, some of the muscle mass that you lost will come back. :)

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