Ulcerative colitis help

[Tanya-B]

I have just been diagnosed with ulcerative colitis after months of feeling sick bleeding from behind and awful stomach problems. I have been reading this can be auto immune related. Has anyone else got this and how do you treat it. My GP just prescribed steroid creams but it's making it worse.

Feeling horribly uncomfortable and struggling to eat much.

Thanks in advance .

[AnnT49]

Hi Tanya,

Yes, it is an autoimmune disease. Cream, steroid or otherwise, might relieve the soreness, but you need to take proper medication to calm the inflammation inside your colon.

I was diagnosed with UC over 40 years ago, so I doubt if I’d be much help to you now, as I’m sure that new and better drugs and treatments have been developed by now.

I don’t know how you got diagnosed, but I was eventually diagnosed after a load of tests carried out by a hospital consultant, after nearly 12 months of my GP faffing around, more or less saying that it was all in my head. By that time I was down to 6 stone, completely incontinent and like yourself bleeding.

Once I had been diagnosed, and prescribed the right medication, things got under control very quickly. The pills did make me feel worse at first until I got used to them, but there are better ones now.

You’d probably get a lot more current advice and support on the Crohnes and Colitis Support community. If you click on “Browse Communities” right at the very top of the page and then scroll down to the Cs, the Crohnes and Colitis link is at the bottom of the left hand column.

I hope you’ll feel much better soon.

[Tanya-B in reply to AnnT49]

Thanks Ann. I finally had a colonoscopy which is how I was diagnosed.I am waiting to see a specialist but it's a six week wait.

I shall have a look at the other websites.

Thanks again.

[Marz]

Have you considered being gluten free ? It may help you to heal the gut. Also look at supplements that calm the inflammmation - as anything ending in * itis * indicates inflammation - tonsilitis - appendicitis and so on

I was diagnosed with Crohns over 44 years ago - lots of surgery - now well

Do you know your VitD level ? VitD is a steroidal pro-hormone as well as being anti-inflammatory. Most people with chronic conditions have low D ....

[Tanya-B in reply to Marz]

I have started going Gluten free this week. I shall check my vitamins levels.

Thanks for your reply.

[Marz in reply to Tanya-B]

It can take time to feel better when going gluten free - gluten is hiding everywhere. Wishing you well .....

[Tanya-B in reply to Marz]

Thank you Marx, wishing you well too

[bantam12]

You need to be on proper anti-inflammatory medication prescribed by a gastro doc, steroid cream won't do anything to treat the inflammation in your colon.

Diet wise stay off high fibre, be careful with fruit and veg as they can make it worse. I can only eat white bread, nothing spicy, very little veg and virtually no fruit.

I've been on Asacol tablets for 26 years and luckily been in remission for all that time which is amazing as I've had UC for nearly 50 years.

So if you haven't been referred to a gastro clinic that's your first move, getting on the right meds is vital.

[Tanya-B in reply to bantam12]

Thanks Bantam x

[Idalmis]

I was diagnosed with IBS C for 20 years and then 2 years ago with UC. I have been on asacol since then and prednisolone a couple of times. However the consultant said my symptoms were not typical of UC and advised me to see a dietician and follow the FODMAP diet which I have done for 2 weeks. My symptoms have disappeared. It’s nothing short of a miracle. So now, I don’t know whether I really have UC. The colonoscopy can’t lie surely. There was bleeding inside my colon. I have so many questions.

Then this week I had a scan on my thyroid and it is slightly enlarged with nodules. Waiting to be called back. If it’s not one thing, it is another. Sigh!,

[Marz in reply to Idalmis]

It is possible all things are connected T3 - the ACTIVE thyroid hormone which is rarely tested - is needed in the gut lining/immune system. The highest amount after the brain. If you read my post above you will see I was diagnosed with Crohns over 40 years ago. No drugs - the correct thyroid treatment and a tray full of supplements since 2005 when I was diagnosed with Hashimotos.

Have you any thyroid test results to share ?

I was banned from the Crohns and Colitis forum for mentioning B12 and VitD which are usually low when there are absorption issues. Sometimes diet and lifestyle can help us be well.

[Tanya-B in reply to Idalmis]

I shall research the Fodmap diet and let you know how I get on.

Thank you

[Idalmis]

No, I went to see an endocrinologist because my thyroid was slightly hyper. I don’t have the numbers.

I take vit d everyday.

Sorry, I don’t know anymore at the moment

[Marz in reply to Idalmis]

How much VitD do you take ? There are also important co-factors to take - Magnesium and VitK2-MK7. As Vit D improves the uptake of calcium from foods the K2 ensures the calcium is directed away from soft tissue and the arteries and into bones and teeth.

You are entitled to your test results - they are legally yours, Data protection - so you can monitor your progress and so you can post in an informed way here

[SlowDragon Administrator in reply to Idalmis]

Or possibly you were not able to utilise thyroid hormones because your vitamin levels were too low

First thing endocrinologist should do (but don't) is test vitamin D, folate, ferritin and B12

[SlowDragon Administrator]

Just been reading your old posts

Would strongly suggest getting full Thyroid and vitamin tests

Gut issues affect our absorption

Ulcerative colitis will have affected vitamin levels

everydayhealth.com/ulcerati...

Low vitamin levels mean your thyroid hormones can not work

Are you on strictly gluten free diet? If not then would suggest trying it

Assuming you can't get full thyroid and vitamin testing from GP

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results

[Tanya-B in reply to SlowDragon]

I am going gluten free . I shall also get private blood test to check my levels.

Thank you for responding, I would be lost without this site x

[Marz in reply to Tanya-B]

Will look out for your results 😊 Best to start a new thread with them so they don't get missed ....

[MURRS]

Hi Tanya, I also have UC but only seem to have a flare up when my thyroid levels are out. I've been really well and symptom free of UC for 6 years but it's recently returned with a vengeance. I have had to request numerous tests from my GP including my thyroid levels (Which should be done every 3 months, but I always have to request them) one of my levels is sky high, obviously down to me taking too high a dose of levothyroxine. I read like a check list of Thyroxine overdose symptoms at the moment (worth checking for yourself) I need to reduce back to 125mg (I was on 150mg for 2 of the 7 days) I know for me, the UC and thyroid issues are definitely linked, with the thyroid being the cause of the problem. Prescribed Prednisilone steroids get on top the UC, they are not ideal, but nothing else works for me. I also have a sensitivity to any UC meds containing Mesalazine, they always make me feel much worse. I hope you feel better soon, It's a dreadful combination of auto immune disorders and I hope you have some understanding friends and family around you. x

[Tanya-B]

Thanks you for contacting me. It's really bad at the moment and I saw a consultant yesterday who has prescribed mesalazine but I am worried about taking it. My thyroid levels are really low so my GP has increased my Levo from 50 to 75 a day and I am taking 12.5 of T3. My breathing is shocking I can hardly walk and I have serious palpitations so am being referred to a cardiologist.

I was so well six months ago but having a tough time just now. My Endo is so desperate to get my TSH level up he's reduced my T3 and T4 and I am def under active.

My hubby is great but he gets frustrated. Don't have a massive support network as we moved for my husbands job and I am not very social when I feel like this.

Thank goodness for this site.

Take care and thank you so much for your message xx

[bantam12 in reply to Tanya-B]

Why are you worried about taking Mesalazine ? I've been on it for 21 years and not had a flare up since then.

[Tanya-B in reply to bantam12]

The GP expressed concern that the consultant has put me on 3 grams a day she seemed concerned and didn't think I should be on it for life. That made me concerned and I don't fancy taking more medication than I have to. But of course I shall try it but maybe at a lower dose.

Thanks for your reply I really appreciate it .

[bantam12]

The high dose will be to get you under control then you can reduce, I only take one 400mg tab a day now and just increase if I think I need to but I've not had a proper flare for 21 years. I would go with what your Gastro says rather than the GP.

[Tanya-B in reply to bantam12]

I think your right and I will start it today. I am struggling to breath and although I do have asthma it's never been this bad. I wonder if it's related to this flare up. I have cut out my T3 as I am having very bad palpitations.

Thanks again for your advice.