Advice on alternative treatment

[Martin's family]

Hello everybody!

We are the parents to Martin dob 05.03.2010

He was diagnosed with IBD (ulcerative colitis) when he was 18 months old. Symptoms - loose stool with some blood in it

Medications

Sulphasalazine - no respond

Azathioprine for 8 months - not effective, Martin had side effects like feeling seek and hair loss

Prednisolone - was very effective at the beginning, not so much any more

Tried 4 Feacal Transplant ( FMT) in 2014, one of them was effective, stayed in remission for 3 months.

After another flare up ( 9 Dec 2014) tried 2 transplants - no respond.
GI recommended Infliximab.

Martin had 7 Infliximab infusions.
1st. Infusion - 4Feb. 2015
Last 7th. Infusion - 17 Sep. 2015
Infusions used to be quite effective but not any more. Last blood test showed Infliximab doesn't work.
30 Oct 2015 - 1st Adalimumab ‎injection
Martin is taking 20mg of Prednisolone
Otherwise Martin was born on term, healthy, no other health issues.

Doctors prepare us for the fact that Martin is sooner or later subject to a surgery...
We hope on to avoid the surgery and would greatly appreciate any advise on alternative treatment.
Thank you in advance!

 

[Charlotte.]

I'm sorry to hear Martin is doing so poorly. Have you tried exclusive elemental diet (E028) to achieve remission for Martin's Colitis? I know it's quite common to achieve remission for kids with Crohn's, Professor John Hunter (Addenbrookes Hospital, Cambridge UK) has been working with elemental and then elimination diet for ages, not his colleagues continue his research and practice. There is lots of evidence on pubmed if you google for Hunter that it is very effective in Crohn's, in his book he wrote, it is not as effective for Colitis, but why not give it a try?
Maybe you could talk to Martin's gastroenterologist about that, if you like?
The long term treatment that Hunter recommends would be the elimination diet.

What about Humira? Would that be an option as well, as Remicade was a fail?

 

[crohnsinct]

Both of my daughters did exclusive enteral nutrition to induce remission and it has worked well. It is supposed to not be as effective for colonic Crohn's and UC but my one daughter has all colonic involvement Crohn's and it worked beautifully. Also, her friend with UC used it and it worked for her. There is a quick read book about Exclusive Enteral Nutrition...Beat Crohns! We are now on the IBD-Aid diet for my younger daughter. I know that it has shown good results with symptom resolution but as far as I know, no diet has proven effective with endoscopic remission. But I say it is worth a try since it can't hurt. There are many diets that people have used successfully for symptom resolution...IBD elimination diet, IBD-Aid, Gaps, SCD, Fodmap etc.

Entyvio is showing very promising results for UC in the adult population and pediatric trials are set to start soon so hopefully that gets approved faster than your son's disease progresses.

:ghug:

 

[Charlotte.]

@crohnsinct: I've never heard of IBD-aid diet before, but looked it up; looks quite similar to SCD, right? Where exactly is the difference to the specific carbohydrate diet?

 

[crohnsinct]

Yes! It is based on the SCD diet. The big differences are the IBD Aid allows oatmeal, beans and soy...They focus more on balancing the gut bacteria to lessen inflammation promoting bacteria and increase anti inflammatory bacteria.

Although IBD-AID does not limit animal protein, our GI and dietician have asked us to try to limit it to once a week (no limit on eggs). Also no heavily processed lunch meats or sausage etc. This from the study from Japan.

copied from Umass's site:

There are many similarities, but IBD-AID emphasizes probiotics, foods with live bacteria within them such as yogurt and miso (see table), as well as prebiotic foods (which feed your good bacteria). This change was made because research shows that IBD patients have more bad bacteria in their gut which contribute to inflammation. This diet helps to restore balance between helpful and harmful bacteria. The diet also differs in that it gradually introduces patients to more textured foods according to phases.

In addition, IBD-AID emphasizes the importance of fiber, specifically soluble fiber, which helps increase beneficial short chain fatty acids as well as providing a gel matrix to enhance stool consistency and slow gut motility. This means decreased inflammation, more formed and regular bowel movements. Because we recognize the importance of soluble fiber, we allow steel-cut and rolled oats on the diet (SCD does not allow grains of any kind).

Finally, IBD-AID also recommends certain types of proteins— lean meats, beans, and soy products (tofu)—which are lower in saturated fat. In our experience, patients have tolerated soy well (SCD advises against soy).

 

[crohnsinct]

My Little Penguin has her son on the IBD elimination diet and is having success with symptoms. They are all somewhat similar. Some allow one or two foods the others don't. I think it is basically just keep trying until you hit on one that works. Just like meds...one size doesn't fit all.

Martin's family...do you live anywhere near the Food Hospital? I have seen a few videos they have put out and they seem to have helped quite a few IBD patients. They do not ask you to come off your meds. They approach diet as a supportive effort which is what we did with my oldest daughter. Remicade just couldn't get her all the way to remission. It got her 90% of the way but when we did EEN and followed with a strict vegetarian diet that is when her health really took off. Now the doc can tell when she is letting the diet slip a bit.

 

[my little penguin]

DS under the direction of his GI is on partial en ( peptamen jr. With prebio )
Plus the crohns elimination diet
http://www.crohnsforum.com/showthread.php?t=71686

Similar to IBd aid and scd

Even the diet list of approved foods some he just doesn't tolerate
It is suppose to be 50% formula the rest food but so far he only tolerates 80% formula
It's a work in progress

 

[Lady Organic]

im sorry for Martin.

im really hoping Adalimumab will work.
there is also Methotrexate (old immuno-supressant) weekly injections which could be tried in the future if needed. sometimes drs combine it with remicade or Adalimumab.

I fallow IBD-AID diet as well. You can look for it in my signature below.

may I ask which stool transplants were used for the procedures (which donor)?

even if doctors have talked about surgery, do not give hope. We continuously hear of success stories. There is never a certainty on the course of disease.

 

[CrohnsKidMom]

I'm sorry your little guy is sick and not responding to treatment. Is there any wiggle room with the infliximab-increase in dose, move the infusions closer together? As the others have mentioned, my mind thinks of EEN. We have not gone that route, but our GI was a huge advocate for it. I hope you find something that will work soon. Thinking of you as you go through this stressful time.

 

[Sudsy]

Poor little thing....

My daughter was on SCD for five years and it was very, very helpful for her. She was ed-free for over two years. She eventually went off b/c she became a teen and wanted to go for pizza with her friends (can't blame her). But you have a way to go with your little guy...

Hope you find the right answers for Martin. Hang in there.

 

[Martin's family]

Thank you All for your send-offs!
We have not tried any elemental diet or any other specific diet yet and Martin has started Humira 10 days ago.
As for stool transplants donors, they were his older brothers...

 

[Martin's family]

Just to check if signature is seen now

 

[CarolinAlaska]

Sorry, can't see it yet. I think there are settings on each post whether to show signatures and how often, and also I think you need to click to show your signature. Sorry I am not real savvy.

 

[Martin's family]

I can see it previewing the post, but on submitting it disappears

 

[Catherine]

check you first post, as the signature only appears once every page.