Docs avoid meds because CD is 'mild'

Hi!
New here... in short, diagnosed three years ago, managed ok until last year with very little medical attention but a stressful six months meant that I started ellimental 028 diet in Jan, followed lofflex diet until last week - dietician then told me to stop because I didn't remain in remission after finishing the drinks. Consultant today said they are reluctant to give me immune suppressants because my CD "isn't that bad", colonoscopy recently showed some inflammation but nothing too bad. Yet how come I experience terrible symptoms?? (I get a lot of bloating, blood in stools- main issue, wind/gas).
I'm just frustrated because although I'm relieved it's not worse than it is, I seem to be getting nowhere and sick of feeling rubbish.
Has anyone had mild crohns and been able to control with diet alone?

I have mild Crohn's and I am able to control it with very occasional short courses of Entocort. It stays in remission for a long time after the Entocort. In my case diet doesn't seem to help or hurt me one way or the other.

Have you had either MRI, CT scan, or capsule endoscopy? If not the doc may not have a clear idea of the extent of your disease in the small bowel, because colonoscopy can visualize only the large bowel and a very short segment of the small bowel (the terminal ileum). This could explain your bad symptoms. If you have little or no disease visible by colonoscopy but more serious inflammation and ulcers farther up in the small bowel where the doc hasn't seen them.

Make sure the doctors keep it monitored

I had an MRI in December of the small bowel - results were clear. I think food must have a big part to play and when they do the colonoscopy, because you prepare for a few days before it's not so bad. I had a couple of courses of budesonide last year but as soon as the course finished the symptoms returned. I'm getting antibiotics next to clear my current flare so I can start lofflex again next week. It's all so long winded and frustrating!

Scipio said:

I have mild Crohn's and I am able to control it with very occasional short courses of Entocort. It stays in remission for a long time after the Entocort. In my case diet doesn't seem to help or hurt me one way or the other.

Have you had either MRI, CT scan, or capsule endoscopy? If not the doc may not have a clear idea of the extent of your disease in the small bowel, because colonoscopy can visualize only the large bowel and a very short segment of the small bowel (the terminal ileum). This could explain your bad symptoms. If you have little or no disease visible by colonoscopy but more serious inflammation and ulcers farther up in the small bowel where the doc hasn't seen them.

Click to expand...

Ds is "mild " per his colonoscopy
But has many EIM 's
So he has been on biologics (humira every 5 days ) and immunosuppressants (mtx)
Our GI tries to treat the whole patient
Not just labs or a scope

Most GI now want complete mucosal healing
Which means not leaving inflammation to simmer and cause damage slowly .

Most want to stop the inflammation cycle
Which is what happens when you don't treat daily
The intestine inflames causes symptoms (in some folks )
You take steriods /entocort
Inflammation calms down
Then starts all over again
This leads to scar tissue and thickening of the interesting over longer term


Prior to immunosuppressants/biologics
They only had
Steriods
Steriods
And steriods
With spot treatment
This leads to more damage over time

Wishing you the best of luck

As said above, monitoring is important I think if you're getting symptoms at all, doesn't that mean the disease is active and potentially progressing and causing damage as my_little_penguin suggests? So this is a bit of a concern. My sympathies.

Yes, it's definitely active right now. Before starting the diets, my consultant said that she thinks I've coped with symptoms so long that it felt 'normal'. It wasn't until I had no symptoms whilst on the drinks that I realised how bad it was. I want to avoid causing more damage in the long run....but don't know what's best for this so just taking the docs advice. He wants me to try the diet again, then suppositories (if my next sigmoidoscopy shows inflammation low in the bowel) and then check how I'm doing in six months, therefore avoiding medication unless it's absolutely necessary.
Thanks for your replies

Aren't they doing a full colonscopy ?

This diet uses partial en with specific foods
Might be worth looking into ...
http://www.crohnsforum.com/showthread.php?t=71686

Ds is mostly on it and 50% neocate jr chocolate
Good luck

They did one in November which 'wasn't too bad!'

my little penguin said:

Aren't they doing a full colonscopy ?

This diet uses partial en with specific foods
Might be worth looking into ...
http://www.crohnsforum.com/showthread.php?t=71686

Ds is mostly on it and 50% neocate jr chocolate
Good luck

Click to expand...

I also did the elimental 028 exclusion diet from 2 Jan until last week but was told to stop by dietician last week (3 weeks of drinks, 4 weeks of low fat low fibre exclusion diet and then testing food )
She said it wasn't working because I couldn't email in remission on basic diet...so now they are giving me short term meds to treat this flare before going back to the low fat low fibre diet and trying again.

my little penguin said:

Aren't they doing a full colonscopy ?

This diet uses partial en with specific foods
Might be worth looking into ...
http://www.crohnsforum.com/showthread.php?t=71686

Ds is mostly on it and 50% neocate jr chocolate
Good luck

Click to expand...

I had great success managing crohn's with diet - Specific Carbohydrate Diet. I was on an immunosuppressant, Imuran, for less than a year, than just Apriso (an anti-inflammatory, not immunosuppressant) for the remainder of my ~3 year remission. I've been in a flare again the past few weeks, so you never know what the future holds, but I do strongly believe diet plays an important role.
At the same time, if you don't feel heard by your doctors, maybe it would be worth seeing someone else?

I came off meds I think a year after diagnosis. When originally hospitalised I had serious inflammation, and I was lucky not to have surgical procedures. Everyone is biologically unique, but I started with exercise and weight loss. Gradually improved diet. 10 years on, I see diet and exercise as means of taking care of the cell, and the cells we as Crohn's patients want to take care of most is the epethelial cells that makes up the gut wall.

From my perspective, immune suppression meds have powerful and undesirable side effects so if at all possible, natural and biologically compatible modulation and regulation of the immune system is preferable. Diet is a major player in causing unwanted immune reactions and inflammation in the gut wall. The key players are gluten/gliadin, endotoxins (from processed foods and chemicals), BPA and rancid inflammatory fats.

The microbiome plays an important role in controlling and regulating inflammation in the gut. Most if not all IBD patients have a disregulated/disbiotic microbiome. Starving the microbiome of fiber will cause disbiosis. The problem for IBD patients is how to restore the microbiome when many of us have difficulty processing fiber.

One solution might be to blend small amounts of fibrous food such as resistant starch and drink with liquid, perhaps taking specific digestive enzymes a the same time. In other words feed the microbiome first, in very small amounts which should not get clogged up in the stomach. Id that fails, a fecal transplant might help.

Amyamy
Most kids do een (enteral exclusion diet -formula only )
For at least 6-8 weeks similar to pred
This is because they know parents will ensure their kids drink it and it takes that long to heal

They do a lot less time in adults not because it works faster but because adults are less likely to stick to it

Lil mish and Happy I believe did much longer runs of een

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3837264/

https://www.hindawi.com/journals/grp/2013/482108/


https://clinmedjournals.org/article...tional-medicine-and-diet-care-jnmdc-2-015.pdf

If your scopes and MRI's and blood/fecal labs are all clear or relatively normal then you may have IBS in addition to Crohn's. They can co-exist. I'm curious if you ever did a fecal calprotectin test? and why are they only doing sigmoidoscopies instead of colonoscopies? that doesn't make any sense. Crohn's normally affects the terminal ileum which a sigmoidoscopy wouldn't reach.

I'm kind of against doing a minimal approach to Crohn's as it allowed my disease to progress unchecked with sub standard GI doctors. Now I am getting the standard of care with an IBD doctor (not a GI generalist) and doing 100% better. A Crohn's diagnosis is progressive, so you need to stay on top of it lest it get worse in time. Diet alone won't control your immune response.

Amyamy said:

Hi!
New here... in short, diagnosed .

three years ago, managed ok until last year with very little medical attention but a stressful six months meant that I started ellimental 028 diet in Jan, followed lofflex diet until last week - dietician then told me to stop because I didn't remain in remission after finishing the drinks. Consultant today said they are reluctant to give me immune suppressants because my CD "isn't that bad", colonoscopy recently showed some inflammation but nothing too bad. Yet how come I experience terrible symptoms?? (I get a lot of bloating, blood in stools- main issue, wind/gas).
I'm just frustrated because although I'm relieved it's not worse than it is, I seem to be getting nowhere and sick of feeling rubbish.
Has anyone had mild crohns and been able to control with diet alone?

Click to expand...

I would suggest you follow your doctor's lead. Minimal chemical treatment until life is intolerable otherwise. Steroids cause osteoporosis and mind and body changes. Biological can make your immune system a target for every parasitic disease out there. I was Diagnosed around 2006 ,perscribed steriods 80 plus mg for 9 months followed my 6 mp followed by humira followed by weekly humira 6 mp combo. Results, legionaires disease , osteopenia . Legionaires disease 12 days intubated 15 days icu month hospitalization. Year later fungal osteomylitis of spine , 2 week hospitalization , 3 month pik line iv anti fungal twice daily for an hour. Disk obliterated vertabre damaged. In short . Many meds are available. When symptoms warrant the possible side effects, use them. But weigh your choices carefully.

Go talk to your family doctor and state you have concerns over your treatment. Not sure what it's like over there (I"m in Aus), but you have a right to a second opinion.

my little penguin said:

Amyamy
Most kids do een (enteral exclusion diet -formula only )
For at least 6-8 weeks similar to pred
This is because they know parents will ensure their kids drink it and it takes that long to heal

They do a lot less time in adults not because it works faster but because adults are less likely to stick to it

Lil mish and Happy I believe did much longer runs of een

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3837264/

https://www.hindawi.com/journals/grp/2013/482108/




https://clinmedjournals.org/article...tional-medicine-and-diet-care-jnmdc-2-015.pdf

Click to expand...

I'm currently on all liquid. It is awful hard to stick to it. The last time I had super bad flare pain, I focused on it and tried exactly to remember every sensation. Then when I feel like, when walking through the supermarket, or simply ripping open a packet of bacon and eating it raw, I make myself remember the pain. It sometimes helps. People just don't realise how important food is beyond nutrition.

As much as I am an advocate of trying diets, I dont think its quite right to pressure patients this way into diet. When a patient does have recurrent flares in such a brief period, a medical treatment should be proposed. I understand the medical team ''good intentions'', but they should not decide for you. This is my opinion. Moreover, diets can be very hard to fallow in the long run and not everyone can do it. Diet does NOT work for every patient. and after multiple failures, you should have right to treatment without having to battle for it. You seem to be really suffering right now with important symptoms and this is unacceptable in my books. Maybe you can try to be more affirmative if you want a medication plan now or go for a second opinion with another team. It should be YOUR decision with your own free will to pursue a diet plan or not. If you feel motivated for another trial with diet and the suppositories, I say go for it too Personnally, I would not wait for the suppositories or enemas and would start right now. You have had enough suffering. When you take the elemental diet, you get 100% remission, no symptom at all?
The fact you have been treated with BUdesonide means you most likely had inflammation in the terminal ileum at some point. (Because budesonide is not prescribed for lower colonic/rectum disease.) How is your dr sure you dont have active disease in terminal ileum right now without a full colonoscopy? The symptoms you describe (bloading) question me that your disease maybe higher up than rectum or lower sigmoid right now. suppositories only reach rectum. Enemas a bit further.
wishing you well.