Help please for daughter abroad - Crohn's and Colit...

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Help please for daughter abroad

bones-bones profile image
10 Replies

I am posting on behalf of my daughter who lives and works in N Cyprus . I hope that is alright. She is 54.

Around Christmas she started to get diarrhoea frequently. She was here for week in February and seemed not too bad. However the diarrhoea persisted and got more frequent so she went to see a doctor. She took bloods and stool sample which showed she had a severe infection. Then onto antibiotics and then a change to Flagyl which helped. She then had a Colonoscopy at another hospital which showed Colitis (by this time the infection had gone) She was given granules and steroids which cleared the whole thing up.

Fast forward to last weekend after weeks of nothing to eat but prebiotics and the fermented drink whose name escapes me and the odd boiled potato or dry toast, she gave in and had a take away beef burger. The diarrhoea started again predictably mostly at night.

I really don’t know what she should do now. She says she will go back to the original doctor with a stool sample and ask for bloods to be done again.

If she came back here she can’t use the nhs and going private would cost a fortune.

So what to do ? She is in N Cyprus upset and I am here wringing my hands ! If I was fit and well I would go out there. But I’m not unfortunately!

Any opinions from anyone would help enormously so thank you in advance.

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bones-bones
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012703060610 profile image
012703060610

Colitis is something chronic. A steroid or antibiotic treatment will help but it will likely return as I am assuming this is autoimmune. I would expect next step would be Rheumatologist to work alongside a GI. Inflammation was shown in colonoscopy and never a guarantee it will go away. I suggest research on LDN for colitis. It has changed my life. It is hard to get in the US as big Pharma doesn't make money on it. I learned about it on another forum for my three autoimmune issues. It's been used and is very safe with limited side effects in the UK for a few decades. I understand how scary it can be and have been through the bowel ringer. I still struggle but the improvement with LDN was remarkable. I am also on an immunosuppressive medicine called methotrexate that I inject once a week. There are many of these meds in all types of forms....but side effects vary greatly. My response assumes she has been tested for celiac and it was negative. Best of luck and always post here....someone is usually able to relate and help. I'm not a doctor but have been managing this for about 3 years.

Valbaty54 profile image
Valbaty54

I don't know how the health system works in N Cyprus but your daughter needs to see a gastroenterologist. Who organised the colonoscopy? Was it her doctor? Colitis is an autoimmune condition which is lifelong but treatable. It goes into remission then flares up again. The steroids worked well to suppress symptoms but it's not wise to be on them long-term. There are many other meds which would help which a gastro doc could prescribe for her. Her diet sounds very limited - generally low fibre can help, but cannot control the colitis inflammation. She really needs to revisit the doctor for some meds. Good luck!

bantam12 profile image
bantam12

Not eating isnt going to help her, she should eat as normal but stick to bland foods, pasta, rice, chicken, white bread and so on.

For me taking prebiotic’s did absolutely nothing and in fact made me worse so maybe she needs to decide if that’s something worth continuing.

She also needs to get onto a medication which will treat the flare up then stay on a maintenance dose of the meds which should keep her in remission, colitis won’t go away so needs to be treated long term to prevent flare ups.

Ciccia profile image
Ciccia

Hi, I lived overseas too when I was diagnosed with ulcerative colitis 20 years ago. Your daughter has had a flare and clearly things havent settled down. She needs to see a gastroenterologist again and look at stabilising her through steroids probably for a while, then getting her onto medication to help control her UC- this could be something like mesalazine which hopefully she will respond too but if not they might go down the immunosuppressant route.If she is still is in flare- which is what it sounds like, eating will be tricky., but it sounds like she is having something like Ensure from your description. As others have said try to keep it bland . Certainly not a burger! I know slippery elm powder if mixed with water sometimes help if you can drink it before eating. That said, I decided to come back and go private in the UK to come up with a management plan. My gp in Italy was really good and supported me with it afterwards.

Crohns Colitis UK are a fab organisation and it would be well worth it for her to look at their website to help her understand her condition. Best of luck!

bones-bones profile image
bones-bones

Thank you all so much for your help. My daughter saw the gastroenterologist again today and she is being admitted tomorrow. They do appear to be doing the right things and giving her the appropriate drugs.

The tests are done quickly and results don’t take long.I wonder how long it would have taken to get to this stage in UK at the moment. But it is nerve racking observing from a distance.

kel89 profile image
kel89

I pray they. Find something to help her. 🙏🏽🙏🏽

Eixor57 profile image
Eixor57

if I were her I would start the Specific Carbohydrate Diet. Intro diet first, but she may have to stay away from the chicken soup as some people can’t even tolerate that. There is a book out, and many websites about what to eat. A legal and illegal list of goods as well. Just Google it. Anyway, too much probiotics, too many carbs, or fats TOO SOON could be the culprit. This diet works for many people with IBD. The Specific Carbohydrate Diet and God has healed me many times. 🙏🏼🙏🏼🙏🏼 There is also a FB page. facebook.com/profile.php?id...

VeraSa profile image
VeraSa in reply toEixor57

I don't know, if you suffer from IBD yourself, but there isn't diet for our condition that works for everybody. For some it may work, for some, no matter what you eat or drink will cause enormous trouble! Crohn's and Colitis is so different for each of us! And if a diet would work, why there is so much medication? Well... you got the answer...

I am sorry, but I am tired of advices to get on a diet, cut this, cut that from you food list! It isn't working for everybody and each of us has to find their own way to live with it.

Eixor57 profile image
Eixor57 in reply toVeraSa

But a majority of people who use the SCDiet have found that it works! I have used Remicade a long with SCDiet and in 6 months my doctor looked at my colon and mentioned the word "miracle". I just told him with Remicade alone I doubt I would be so healed up. But with Remicade and the SCDiet my colon was healed. Lot's of prayer as well. 😀

Eixor57 profile image
Eixor57 in reply toEixor57

I stopped using Remicade after a year because of side effects, but I stayed on the SCDiet. No longer do I take meds.

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