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Crohn's Disease Forum » Your Story » Help me, please!


05-11-2014, 06:00 AM   #1
alicedoll
 
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Help me, please!

Right I was diagnosed in January 2013 with Crohn's disease, it's been over a year and if this year has taught me anything it's that I don't have a clue about anything... it's like as soon as I get better from a flare up, a week later I'm ill again, I just think I'm pretty clueless about what I should actually do to manage this disease.

I'm currently doing my finals at university (my illness and fatigue from it is not helping me at all with revision concentration haha - very, very annoying) and I finish in a couple of weeks. I am then taking a gap year before I start work in September 2015 and think that this year break would be the perfect time to figure out my health, figure out what I need to do to feel and be healthy. It will be the first time since my diagnosis where I have had no other important commitments or tasks that will be able to get in the way of my mission to get healthy; unfortunately I think I let my busy lifestyle in the past year overtake what should be my main focus, my health.
So, my yearly goal on my gap year, unlike others who get to travel, explore and find themselves, is just to smash this thing and get healthy and STAY healthy by figuring out what lifestyle I need to lead to avoid those annoying flare ups!

I am clueless though. Completely clueless.

Please, please if anyone has any tips that really helped them figure out what worked for them could you post, I've heard food diaries are good (as you get to keep tabs of the food that causes you problems etc), any other good tips?

Any foods that are universally known to cause flaring, or cause flaring in the majority of Crohn's sufferers?

Any lifestyle tips that might help stop flaring, such as daily exercise, (by the way, I am not a smoker, I know that's the big one with Crohn's in terms of lifestyle)?

Thanks a lot, Alice x
05-11-2014, 06:33 AM   #2
Farmwife
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Hi and welcome.
I'm from the parents forum. My five year old suffers from this also.
I'm sorry you have to use your gap year for health reason but am happy that you'll get to rest and take care of yourself.

Ibd is such a multifaceted disease. It affects everyone so differently.
IMO is not just diet, it's the right combo of meds, diet, distressing and determination that things will get better. All of which will take time.

Study about what you have and ask question. This is a great place to find info and advice but remember to ask your doctors what is going on, why this or that is happening and push for answers when you need too.

We have a great diet and fitness section. Check it out.

What meds do they have you on? Where was your disease located?
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
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Bladder and Bowel Dysfunction
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Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
05-11-2014, 06:46 AM   #3
joeyme1
 
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Hi. College was a tough time for me and Crohn's disease. During that time, I discovered thr Specific Carbohydrate Diet. It helped with my Crohn's like nothing else ever did. Now 20 years later, I don't use the diet. However, it taught me a lot about what I can eat to help stay healthy. There is a forum here on the diet.
05-11-2014, 09:05 AM   #4
Honey
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Hi there, and welcome
Crohn's is a very individual illness. It takes time to get the right meds that suit you to keep down the inflammation. I did not do well on a number of meds, so had to agree to infusions. I am now currently off that as I became ill with pleurisy. I am O.K. just now.
Food does not cause the symptoms of Crohns, but you will find certain foods that can trigger it. For me, that is rich, creamy or cheesy sauces. Also, nuts is a no no! I am sorry Crohns is taking up your Gap Year. Remember, take one day at a time and do not worry.
You cannot beat it, but you can live a full life with it. Talk to your doctors and ask plenty of questions. Being fully informed helps. I was only diagnosed a few years ago. It takes time to to get your head round it. Good days and bad days. I have shed a few tears.
This Forum is a great help. Feel free to ask questions and talk.
Best wishes
05-12-2014, 02:46 AM   #5
theOcean
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Welcome to the forum! I see you've gotten a few responses already about food.

Are you on any medications to treat your illness?
__________________
Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
05-12-2014, 03:58 AM   #6
valleysangel92
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Hi there Alice

I'm sorry to hear you've been having such a tough time of things. Crohns is a really individual illness so it will take a bit of time to work out what will work for you, the foods that I find safe are generally the simple, low fiber ones, things like mashed potatoes, soups, chicken, white rice etc. You can find the diet and fitness section here.

Make sure you take time out to rest during this year, keep a track of what seems to make your symptoms worse, not just food but anything. Try and get your doctors to test your vitamin and mineral levels every few months or so (easier said than done in the UK I know) as there are a lot of deficiencies that go hand in hand with Crohn's disease.

You might like to check out our young adult support forum where you can get advice and support from other people around your age on how to cope with this disease and get things back on track.

What medications are you currently taking?
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
05-12-2014, 08:58 AM   #7
Jay Woodman
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Right I was diagnosed in January 2013 with Crohn's disease, it's been over a year and if this year has taught me anything it's that I don't have a clue about anything... it's like as soon as I get better from a flare up, a week later I'm ill again, I just think I'm pretty clueless about what I should actually do to manage this disease.

I'm currently doing my finals at university (my illness and fatigue from it is not helping me at all with revision concentration haha - very, very annoying) and I finish in a couple of weeks. I am then taking a gap year before I start work in September 2015 and think that this year break would be the perfect time to figure out my health, figure out what I need to do to feel and be healthy. It will be the first time since my diagnosis where I have had no other important commitments or tasks that will be able to get in the way of my mission to get healthy; unfortunately I think I let my busy lifestyle in the past year overtake what should be my main focus, my health.
So, my yearly goal on my gap year, unlike others who get to travel, explore and find themselves, is just to smash this thing and get healthy and STAY healthy by figuring out what lifestyle I need to lead to avoid those annoying flare ups!

I am clueless though. Completely clueless.

Please, please if anyone has any tips that really helped them figure out what worked for them could you post, I've heard food diaries are good (as you get to keep tabs of the food that causes you problems etc), any other good tips?

Any foods that are universally known to cause flaring, or cause flaring in the majority of Crohn's sufferers?

Any lifestyle tips that might help stop flaring, such as daily exercise, (by the way, I am not a smoker, I know that's the big one with Crohn's in terms of lifestyle)?

Thanks a lot, Alice x
Currently I am keeping a daily diary of all food, drink, supplements, bowel movements, everything : ) It is helpful for me in seeking to establish patterns. Perhaps this may be a starting point for you to consider : )
05-12-2014, 10:22 AM   #8
Kit
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Alice Doll, this is such a life changing disease and as everyone has said on this forum everyone is individualized. Here are some things in general i have figured out, and the Crohn's and Colitis Foundation of America is a great resource from lots of things including tracking apps, support , new research and lots of information.

1 Make sure your physician is keeping up with your B12, Iron and Vit D counts. These all can be fatigue factors especially if your small intestine is affected.

2 Raw vegetables seem to be a big trigger, some people can't tolerate dairy or gluten. But again that is individualized. A food diary is your best bet. Saturated Fat, Trans Fats, and artificial anything seemed to bother me. I bought most processed foods organic. Eating single item foods can help you single out trigger foods.

3 Exercise in general is good when you have energy. Gentle Yoga, Tia Chi and walking seem to be the best for me. I do get exhausted after exercise most of the time. Sometime 5-10 min is all I can do. That is if I can motivate myself to exercise at all.

4 There are tracker apps out there for food, bowel movements, exercise and such especially made for IBD patients. Check into them. GI Buddy and GI Monitor are two I can think of offhand.

I hope I didn't overwhelm you to much. I am so happy to hear you can take the time for your health. Not having as much stress will help a lot.
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Last edited by Kit; 05-12-2014 at 10:25 AM. Reason: Needed to add a few thins
05-12-2014, 01:13 PM   #9
alicedoll
 
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Thanks all for your advice!!

I think I will start a diary to figure it out, and take your suggestions as the first things to test out on it! The phone app sounds great to track- will definitely download one of those you suggested.

And to all those who asked I am on
I'm currently on a dosage of 2g twice a day of oral mesalazine and take suppositories if things get worse..
Have been on localised steroids once, but keen to avoid steroids if possible so wouldn rather not do that again and try natural ways to prevent me from having to put those toxins in me.
These are the meds my gastronologist prescribed me.

I recently had a flare up when holidaying and didn't have the NHS at my side to help me get the extra suppositories etc I needed without a very hefty price tag, and because I was in Barbados where the Crohn's rate is very low they didn't have mesalazine in stock.
I was wondering whether anyone knew of any over the counter drugs that might help if I find myself in a situation like that again, obviously I wouldn't never take over the counter on a normal basis just if I find myself in an emergency like that again! Haha! I don't think there is an over the counter, is there?
05-12-2014, 01:27 PM   #10
theOcean
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I think we would all like to avoid steroids, but unfortunately we sometimes still have to go on them (hopefully only short-term, though). Something you have to take into consideration, though: uncontrolled Crohn's is actually far worse than any "toxins" from medication to treat it, and can be incredibly dangerous if it isn't treated correctly.

Mesalazine is a very mild medication, and it sounds like you need something stronger because you haven't been in remission. I would recommend an immunosuppressant like Imuran, 6mp, or Methotrexate, though they take three months to get to a therapeutic level. Because of that it's recommended to go on a short course of either prednisone, or entocort (not as powerful as prednisone, but doesn't have the same awful side-effects) while waiting for that to kick in.

The next step-up from there is trying a biologic, but I would try an immunosuppressant + temporary steroid first to get your illness under control.

I know you want to get your illness under control with lifestyle changes and diet, but unfortunately that's not always possible, and those things are considered to be supplemental rather than considered real "treatment".
05-12-2014, 02:13 PM   #11
valleysangel92
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The medications you are taking at the moment are really mild and although they can help some people they are not always enough to control crohns and achieve remission.

You have a few options. You could try a larger dose of mesalazine , you could have another course of localized steroids to bring you into remission ( on top of the mesalazine). You could try the bigger steroids and then the localised ones (for a few months, not long term) and then go back to the current plan. Personally, I would say your best bet may be to try a short course of steroids (I know they're horrible but they do wonders for a lot of people) and then possibly immunosuppressive medications if your consultant will agree to it. I know it's hard to persuade doctors here sometimes.

I understand your desire to stay away from heavy duty medications and do things more naturally, but it's often not enough on its own. Under-treated crohns can get really very nasty and isn't something you want to be dealing with.

As for over the counter, you'll only really get symptom relief. If you travel within Europe then make sure you get an EHIC which entitles you to health care in most European union countries. I'd recommend making sure you take a good supply of medications with you next time though .
05-12-2014, 03:51 PM   #12
alicedoll
 
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Of course would take steroids as needed - much better than being ill lol. Was just wondering whether there were other options.
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