My story and advice on my next step, specifically natural vs. medicine approach

[alwaystraveling]

Hi everyone!

I am a 27 year old male of Eastern European background living in Thailand and diagnosed with Crohn’s Disease about 4 months ago. Before this I had been having stomach problems for about 5 years. Mostly it was an upset stomach and diarrhea more than seemed normal. About 5 months ago I started to have quite a bit of blood in my stool, which promoted me to do a colonoscopy. They found some ulcers around the terminal ileum area but nothing really in the rest of the colon. Based on this, a barium test, x-rays, MRIs they concluded it is Crohn’s Disease. I was then put on 2gms of Pentasa twice a day along with budenofalk 9gm once a day in the morning.

After starting the medicine, I quickly felt much better than I had in the last 5 years. I wouldn’t say I was always 100% but I went from 4-9 bowel movements a day to only twice a day and almost never having diarrhea.

For the last month I have not been taking the Budenofalk because the doctor did not advise doing so for more than 3 months. Now I am only taking Mesacol (almost the same as Pentasa but much cheaper) and my symptoms remain pretty good. Still it’s not perfect, I do feel I really need to go to the bathroom in the morning and its usually not very solid but other than that pretty good.

Last week I did another colonoscopy to see if I had really healed. Unfortunately, the findings show that its pretty similar to before, not worse but not better. Still multiple lesions and ulcers around the ileum.

The doctor gave me two choices:

1. Do not take any new medicine except maybe continue the Mesacol for a little while and wait until I have a flare up and deal with it from there.
2. Start taking 50mg of Imuran (azathioprine) everyday for at least 9 months if not a year or two. At the beginning I might also take prednisone for a short period of time.

I would really love to hear what people think is the best choice. On one hand, I have heard so many great stories on this website on how diet and lifestyle changes have really worked. So part of me wants to try no drugs and see if I can heal that way. I’m also pretty worried about the idea of taking any medicine for a long time, especially an immunosuppressant. On the other hand, I don’t want to risk getting much worse by not taking Azathioprine.

One of my big questions is, how common is it for my bowels to be getting worse and not experience any symptoms? To me it seems if I really did start to get worse internally I would also feel it, in which case I could start taking the immunosuppressant. What does everyone think? Is there such thing as asymptomatic worsening Crohn’s Disease?

Also, how long does it normally take for the ulcers to go away? Is it strange that after not having many symptoms for 3-4 months the ulcers haven’t gotten better?

Thank for you very very much for any and all thoughts and feedback!

 

[my little penguin]

You can have asymptotic Crohns unfortunately
Tagging clash
5-asa (pentasa) is not recommended by anyone as a monotherapy for Crohns
Simple because Crohns affects the entire thickness of the intestine and pentasa only works on the top layer
Most GI equate giving pentasa for Crohns to giving asprin for brain tumor
Not going to hurt too much and not going to help much either

Leaving inflammation go untreated or under treated can get ugly fast
It's like leaving a fire smoldering
In some it may be ok for a while others it can cause a lot of damage that can't be revesered

The new goal of Crohns has been complete mucosal healing (not just lack of symptoms)
Thus keeps as much of the intestine as healthy as possible for as long as possible and hopefully avoids surgery /short gut and other life threatening aspects of Crohns

Aza has its risks
As does all other meds for Crohns
Ds was dx at age 7 and now is almost 14 and tried all the various classes of meds
Including biologics
He currently is on his third biologic (Stelara plus mtx )

And tried all the diet lifestyle etc....
Most try a combo of meds and diet
But given pentasa didn't heal anything on your latest scopes
You may want to consider the other med to try and heal the gut first


There is proven een (exclusive enteral nutrition-formula only no solid food)
Used a lot in kids
Gets the gut healed like steriods but no side effects except not being able to eat
Typically it's not as effective in adults since most adults don't necessarily stay no foods


ds has done 3-4 rounds of een
Once solids are introduced more than 10-20% then the healing stops and inflammation tends to return

Some kids at least use 80/20 or 90/10 plan for treatment
Using peptamen jr etc...


The other proven diet with some success is scd

Good luck

Can you get a second opinion ???

 

[undone]

I'm not sure if the ulcers ever really "go away". They may subside and become less inflamed, and your symptoms may get better over time, but the root is still there.

I've learned over the years to stay away from certain foods: wheat, dairy, gassy foods such as legimes, califlower, brocolli, refined sugar, and now I'm finding red meats are triggering problems, too. When I am being a good girl and staying on my diet, I am noticably better - not entirely symptom-free - just a lot less symptomatic. I'd recommend starting a food journal and tracking what you eat and how it makes you feel.

Additionally, don't eat big meals, or large quantities of food all at one time. Smaller amounts of food spread out over the day is easier for your compromised system to digest.

Best wishes to you on your journey - and keep us posted.

 

[my little penguin]

Intestinal ulcers can heal with meds
And the intestine can look completely healthy

 

[alwaystraveling]

Thank you guys! This is all very helpful. @mylittlepenguine so much good information. Really sorry to hear everything that has happened to Ds, I really hope things improve for him Interesting to hear about the different diet options. I've also thought maybe I should just do a whole week of only liquid foods. Though here it would be harder to get the real formulated ones, the best I could do would be make smoothies, which maybe isn't as good... Sounds like your advice would be to keep going forward with medical treatment and also consider other diet/lifestyle changes, right? I am just a bit scared about the immunosuppresents especially because I am not a "sever" case right now. But I also don't want to become in a sever state either... I hear so many success stories about how alternative treatment works but I am also a science person. Not easy choices!

I really do want a second opinion! Just hard to get one here. Hoping to find a good doctor in the US or Israel that will be okay with a phone/skype session.

Again thanks for your help! Good luck for you too!

@Undone Thanks! I am trying really hard to figure out which foods work. And everytime I search what i should or shouldn't eat I feel everything is on the don't eat list! Hopefully with time I can figure out what works for me

 

[my little penguin]

Some have used meds like aza added diet
Got into remission
(Healthy looking intestine on biopsy /visually )
And then tried to use diet alone
It's never an either or
And what meds actually work for you may not even be what your worried about
Everyone is so different with Crohns
It's very hard to say med x will work best

I know lots of parents who worried a lot about a certain med
Finally agreed to try only it didn't work and they needed something else

The disease is a beast and use what is best for you

Formula wise the GI /hospital would be the ones to find the formula for you
Not necessarily over the counter

 

[Clash]

Hi my son is asymptomatic even though he has active inflammation that is moderately severe.

He was asymptomatic before diagnosis. He had severe pain, joint pain, inability to eat, nightly fevers, mouth ulcers, severe fatigue and his bms leaned toward constipation and not diarrhea. He was 15 at the time.

He was put on remicade and like magic he did a 180. All symptoms resolved after his first infusion. Regardless of symptom relief he still had active inflammation. His meds were adjusted and others added. He was doing well symptom wise but each scope and imaging showed severe inflammation.

Two years after diagnosis he required surgery because the meds were not working to stop the i flammayion. At the time of surgery he had no symptoms except in ability to gain weight.

He's been through some other different meds now (humira, stelara) but the inflammation returned shortly after surgery (it was still necessary since the damage crime inflammation was so severe he was at risk of perforation or blockage.) He still really has no symptoms. He has urgency first think in the morning bit that could be due to bowel resection. So, still had an inability to gain and keep weight and he's still hoping for remission.

 

[alwaystraveling]

Thank you everyone again. All this information certainly does help and it affirms for me that asymptomatic doesn't mean I'm in the clear. Hopefully the new medicine and diet change will do the trick!