New to here. id really appreciate some Crohn's advice please

[Tashtashtash]

Hi, im new to this and im probably a sceptic as i know this is for support and not diagnosis. I have been diagnosed with Crohn's colitis for 3 years now I'm 24 and I've recently come to the conclusion I'm struggling by and now im struggling to mitigate my current symptoms into a normal 24year olds life. I need to take some positive action. I suffer from around 7 to 30 toilet trips a day, have left side burning and twisting pains and lots of blood in my stools alongside fatigue, rectal pain and swelling and other normal Crohn's symptoms that vary. I Had a few relatively high cal tests which didnt really worry me but recently life has been progressively worse. I recently Had a cal protecting test which came back at 5773.I know this is relatively high and it does reflect how I physically feel. I dont have to worry as much now because I've been in hospital with steriods so things should get better although no long term medication has worked as yet. I just wondered if anyone else had similar readings? And if so what does it mean? What did you're doctor tell you to do? What meds do you take? (As all meds so far have not worked accept predisolone) I'd also like to ask if anyone had any dietary advice for me? Any advice would be much appreciated, I want to put my mind at rest more than anything and possibly meet people going through similar. I want to move forward in life and to be a normal 24yo again . Many thanks in return.

 

[ronroush7]

Welcome. I am sorry you have this disease. Have you tried a food diary to see what foods don't agree with your stomach? Has your doctor talked about biologics? Everyone is different. I hope your doctor can get you on a medicine that will put you in remission soon.

 

[Scipio]

A fecal calprotectin of 5773 is quite high. That tells the doc that there is definitely significant inflammation in your gut somewhere.

What are the medicines you've had that didn't work? There are quite a few different medicines for Crohn's these days and more are coming along in the future. But we can perhaps offer better suggestions if we know what already has failed.

 

[Maui Surfer]

Hi, Im sorry your experiencing those harsh symptoms. It will get better with the right meds My doctor put me on 50Mg of prednisone and 50mg of Imuran to manage an acute flareup. It seems to work pretty quick. Honestly, the most efficient pain relief that helped me instantly was medical marijuana (legal in my state). Not something that you want to get into a regular use, but it can help when symptoms are bad. I was told that stress can be a major factor that leads to a flare up. Learn how to manage your stress levels and do things that make you feel relaxed. I am now only on the 50 mg of Imuran and am getting better with zero symptoms. As far as diet goes, I would avoid all dairy products, fast foods, and candy. I hope this helps.

 

[Lady Organic]

Hi there,

what medication have you tried and failed?

In terms of diet, you can look at IBD-AID in my signature for some ideas.

Elemental liquid diets are also quite popular for crohn's in the UK, you can ask your dr or nurse.

Wishing you well.

 

[ivan.fiedoruk]

I'm new to this but what helped me is to take note of everything I eat on an APP.

I also started cooking for myself and not eating out of my house. Even rice where they use onions and garlic for taste make me feel pain.

Don't give up!

 

[Tashtashtash]

A fecal calprotectin of 5773 is quite high. That tells the doc that there is definitely significant inflammation in your gut somewhere.

What are the medicines you've had that didn't work? There are quite a few different medicines for Crohn's these days and more are coming along in the future. But we can perhaps offer better suggestions if we know what already has failed.

Thankyou for your reply, this forum is great for asking general questions. They have used the general medication tiers in the UK and have so far ruled out, mesaline, azerphioprine,mecaptopurine and methotrexate. I'm currently still being investigated and they have decided to put me on humira on Wednesday so I'm hoping for some positive results off them. I'm a little wary though as anyone would be. Do you have any tips for creating a food diary by any chance? Or any experience or advice about humira? Thankyou so much for taking the time to help me much appreciated

 

[gger7]

Hi, I’ve only recently been diagnosed with IBD and spondyloarthritis, my inflammation was really bad so they fast-tracked me to Humira which I started last September. It has eased my joint symptoms, not so much my IBD, but I think this may be because they did not prescribe me the 4xinjection loading dose. I can’t offer much advice for the IBD management as I’m journeying through it and trying to find my way, scouring these pages for tips! With the Humira, I can say that in the UK they removed the substance that causes a sting, so its not that bad. I take mine out of the fridge about 30mins before injecting and pinch my tummy and go for it, it is over before you know

 

[Tashtashtash]

Hi, I’ve only recently been diagnosed with IBD and spondyloarthritis, my inflammation was really bad so they fast-tracked me to Humira which I started last September. It has eased my joint symptoms, not so much my IBD, but I think this may be because they did not prescribe me the 4xinjection loading dose. I can’t offer much advice for the IBD management as I’m journeying through it and trying to find my way, scouring these pages for tips! With the Humira, I can say that in the UK they removed the substance that causes a sting, so its not that bad. I take mine out of the fridge about 30mins before injecting and pinch my tummy and go for it, it is over before you know

Thankyou for your reply, I'm glad humira is clearing up some of the pain for you. Hopefully it will help some of my rib and joint pain too fingers crossed. What is sponyloathritus? If you don't mind me asking? Did you get any side effects from humira? I know it's personal to each patient but I thought there's no harm in asking. Does it resrict your life at all? Like going away on holiday or anything? Sorry for all the questions. I just know starting new meds is a big commitment and any information collated would be useful. I do hope the humira starts to sort you're ibd out though, please let me know any progress

 

[Tashtashtash]

Thanks to everyone that had written on this post. All the advice has been greatly welcomed and I've decided I should probably start to write a food diary so I can try and control certain symptoms. Does anyone have any reccomendations where to start? There's so many foods I'm feeling a little over whelmed haha. Or has anyone used a dietrition or food diary app and recommend them? Just to update I will be starting humira soon so fingers crossed it will get things in to remission again but long term of really like to give myself a personalised diet plan. Anyone got good ideas for what to look for when good is intolerable ECT? I feel constantly sore at the moment so should I start when I'm in remmision or should I go based on more ibs based symptoms like bloating? Ahh sooo many questions

 

[ronroush7]

Thanks to everyone that had written on this post. All the advice has been greatly welcomed and I've decided I should probably start to write a food diary so I can try and control certain symptoms. Does anyone have any reccomendations where to start? There's so many foods I'm feeling a little over whelmed haha. Or has anyone used a dietrition or food diary app and recommend them? Just to update I will be starting humira soon so fingers crossed it will get things in to remission again but long term of really like to give myself a personalised diet plan. Anyone got good ideas for what to look for when good is intolerable ECT? I feel constantly sore at the moment so should I start when I'm in remmision or should I go based on more ibs based symptoms like bloating? Ahh sooo many questions

I hope the humira gets you in remission.

 

[ivan.fiedoruk]

Thanks to everyone that had written on this post. All the advice has been greatly welcomed and I've decided I should probably start to write a food diary so I can try and control certain symptoms. Does anyone have any reccomendations where to start? There's so many foods I'm feeling a little over whelmed haha. Or has anyone used a dietrition or food diary app and recommend them? Just to update I will be starting humira soon so fingers crossed it will get things in to remission again but long term of really like to give myself a personalised diet plan. Anyone got good ideas for what to look for when good is intolerable ECT? I feel constantly sore at the moment so should I start when I'm in remmision or should I go based on more ibs based symptoms like bloating? Ahh sooo many questions

I'm using MySymptons Food Diary and Symptom Tracker App to register anything I eat, medicines I use and food I eat.

What to eat I research on Internet... my base menu is fish, chicken, Eggs, soy milk, White Bread, etc.

I know garlic and onion destroys me and I still cant eat red meat. No problems With ham tho.

It's try and error.

Enviado de meu SM-G950F usando Tapatalk

 

[gger7]

The type of spondyloarthritis I have is called Ankylosing Spondylitis, it mainly affects SIJ (lower back) but I also get problems with my ribs, knees, ankles, feet and hips. Lucky old me! It is another condition caused by inflammation, like the IBD. I also get psoriasis on my scalp and get inflammation in my eyes - all apparently linked. I tested positive for a gene called HLA-B27 which apparently makes carriers susceptible to inflammation illnesses.

The Humira doesn’t restrict my life at all, I inject at home every 2 weeks, my nurse said if I was going on holiday I could take it a day early or late if needs be, or I got a travel bag that I can take with me. I haven’t actually travelled with it yet though! I haven’t noticed any bad side effects, all the symptoms I have now, I had before Humira. It hasn’t given me any extra symptoms or made anything worse, it has only given me improvements - unfortunately just not as much as I hoped for but I’ll give it some more time and see what happens, I’m staying open-minded about medication.

I really hope it works out for you, this whole journey is so daunting, I’m trying to adjust to my new normality and trying to stay positive, things could be better but they could be a whole lot worse.

 

[Tashtashtash]

I'm using MySymptons Food Diary and Symptom Tracker App to register anything I eat, medicines I use and food I eat.

What to eat I research on Internet... my base menu is fish, chicken, Eggs, soy milk, White Bread, etc.

I know garlic and onion destroys me and I still cant eat red meat. No problems With ham tho.

It's try and error.

Enviado de meu SM-G950F usando Tapatalk

Amazing ..... that's gave me a good start .... I use garlic and onions a lot and I've never gave it a thought... so that's a good start. Do you eat the food on it's own to tell or just track it in different meals? Looking forward to slowly becoming my own dietician .... hoping it's not too restrictive though fingers crossed....

 

[Tashtashtash]

The type of spondyloarthritis I have is called Ankylosing Spondylitis, it mainly affects SIJ (lower back) but I also get problems with my ribs, knees, ankles, feet and hips. Lucky old me! It is another condition caused by inflammation, like the IBD. I also get psoriasis on my scalp and get inflammation in my eyes - all apparently linked. I tested positive for a gene called HLA-B27 which apparently makes carriers susceptible to inflammation illnesses.

The Humira doesn’t restrict my life at all, I inject at home every 2 weeks, my nurse said if I was going on holiday I could take it a day early or late if needs be, or I got a travel bag that I can take with me. I haven’t actually travelled with it yet though! I haven’t noticed any bad side effects, all the symptoms I have now, I had before Humira. It hasn’t given me any extra symptoms or made anything worse, it has only given me improvements - unfortunately just not as much as I hoped for but I’ll give it some more time and see what happens, I’m staying open-minded about medication.

I really hope it works out for you, this whole journey is so daunting, I’m trying to adjust to my new normality and trying to stay positive, things could be better but they could be a whole lot worse.

How did they test the spondlo? Just intrigued as I have been wondering why right sided rib pain and joint pain has recently been added to my journey so may be worth them looking into ....will obviously hold off though if you said humira seemed to help yours.but great to know if it still persists after. That's so interesting about the gene testing I've always wondered about that. How did you get tested for that? Genes fascinate me would be crazy to know if all ibd suffereres were all carriers of that gene wouldn't it. I'd love to know what exactly causes it and unravel the many mysteries behind it. Glad to know that it's gone relatively well for you. I know that sometimes side effects act like symptoms of ibd so fingers crossed it's actively managing you're disease and that they're just side effects.but one thing your story has done for me is proved there's a silver lining to anything and it's really spurred me on to stay positive and appreciate the small differences and progressions made

 

[ivan.fiedoruk]

Amazing ..... that's gave me a good start .... I use garlic and onions a lot and I've never gave it a thought... so that's a good start. Do you eat the food on it's own to tell or just track it in different meals? Looking forward to slowly becoming my own dietician .... hoping it's not too restrictive though fingers crossed....

What I do is try Just one different food per day and see how my body reacts.

I'm starting Infliximab next week and I hope I can add more stuff to eat.

Not an easy disease but I keep going

Enviado de meu SM-G950F usando Tapatalk

 

[ronroush7]

What I do is try Just one different food per day and see how my body reacts.

I'm starting Infliximab next week and I hope I can add more stuff to eat.

Not an easy disease but I keep going

Enviado de meu SM-G950F usando Tapatalk

Best of luck.

 

[Guerrero]

You can try some liquid diet like modulen also as a substitute diet for a meal or two by day. It could bring interesting results.

I was on humira, it didnt change much my life.