Another Crohn's mom

[DMS]

Hi all,

I've been reading the sight for awhile and decided to quit lurking.

My 15 year old son started feeling ill after Christmas and went for about 3 months of just not feeling right, at the end of March it was painful for him to go to the bathroom, and the D was becoming more of a common thing. We had 4 Dr's apppointments in 2 days and that was the first time I had heard of Crohn's.

Being a child he was referred to a GI specialist in Vancouver (BC, Canada), where we had one appointment and then never heard from anyone - even though we were supposedly on a short list for a colonoscopy and endoscopy. Through lots of research and a few visits with a great Naturopath we figured out that he had/has an abscess and a fistula. Finally got that C & E in July where we were told that the biopsies were clear, but because of perianal involvement they were going to start him on Imuran. We have opted to not start him on the Imuran at this time (something the GI is not too happy about, hubby came with me to that appointment as I did not want to appear to be the wacked out mom), we've been on the SCD for 4 weeks now, as well as probiotics, and a few other things, and he is feeling really good. Normal BM's, no urgency, we felt the Imuran was too harsh of a treatment at this time, without exploring other options to heal the fistula first.

So. . . I'll be posting on a few other areas here in relation to "the fistula" I think it should have it's own name - it's so evil. Suggestions anyone?

Thanks to all for sharing there experiences, even though some are tough to read, you are all a great group, and a special thanks to D. Bergy for all the time you spend posting some of the more alternative remedies, they have been so helpful.

Donna

 

[shazamataz]

Hi and welcome, I'm new too and it can be all a bit overwhelming.

It sounds like you are being a great mum and doing lots of good things to help your boy. The 'Natural' way is most appealing to me too and I will be aiming to stick to that as much as possible after I stop my Prednisone in a few weeks.

Not sure about the SCD though. I've looked into it and made some changes but it is so hard, especially when I am on low residue as well - almost leaves nothing to eat at all, moreso because I am allergic to nuts so can;t use those options as a carb substitute. I find dinners okay but lunch (especially to take with me) difficult - all suggestions welcome!

I laughed when you mentione naming the fistula. I named my abscess after my ex-boyfriend and it was very therapeutic to do so. I am a firm believer in the body-mind connection and am convinced it was made up off all the hurt and angry feelings about him festering away in my insides!

take care

sharon

 

[kenny]

I had thought all fistulas where like mine. A hole in the bowel that fed a growth of bacteria that grew into another organ or outside the body, making a pathway for GI material and infection to spread. But I'm starting to get the idea that not all these things are associated with perforations or holes in the bowel. I'll be looking forward to your thread so I can better understand what these things are and what to expect in the future.

 

[DMS]

Hi Kenny, the way the fistula was explained to me (by the GI doc) is that he had an inflammation response to something, and abscess formed and then looked for a way out to drain, creating a fistula - I thought the fistula came first and then the abscess, but apparently not.
The abscess started draining at the end of May, he had an MRI done in July that showed the track of the fistula, it is called a high fistula and goes between the sphincter muscles and just into the rectum area (not up to the bowel, colon or anywhere else), so surgery is not an option, and then he has another fistula from the abscess that drains out the butt area.

Shazamataz I love your idea to name it after your ex, I'll have to see if there's anyone in his life that he dislikes enough to name it after.

We tried SCD when he was first having problems in April - it was too hard and confusing at the time as he seemed to be reacting to all sorts of foods, so we just went low gluten at first. In July when we started it again it was much easier, just a lot of work for me (the cook). It would be really hard without the nut flour though. Sharon, I'm struggling a bit with lunches too - it's easy right now while he's home from school, but come September it will be tougher.

The GI seems to have a one track mind (Imuran and antibiotics), and if you don't follow his track his nurse doesn't answer E-mails or phone calls.
I asked about Tracolimus and LDN, and he was very closed to it.

Right now Mitch is on SerratioPeptidase which is a natural immunomodulator, we noticed a big difference as soon as he went on it, also Align probiotics are really helping him. They are really easy to culture (in yogurt) so I can make a 1 month supply last about 3 months.
He will also be starting LDN this week (prescribed through our Naturopath), and doing Hyperbaric Oxygen Therapy to heal the fistula - he'll be going for 12 sessions this week (2 a day for 6 days), we will be doing at least 20 sessions and possibly 40. This has to be done privately as it would take about 2 years to get into a hospital HBOT. I have read great clinical trials on HBOT and the Dr. we are working with - a specialist in HBOT, not our Naturopath - has done his own clinical studies as well as worked with other Crohn's patients. Crossing all our fingers and toes that this will work.
So, a busy time this week spending almost 8 hours a day in Vancouver where the HBOT clinic is - but it's right around the corner from IKEA (it's gonna be an expensive week!!).

 

[My Butt Hurts]

Hi DMS, welcome to the forum.
Good for you for researching and saying no to what you're not comfortable with. And great that you are seeing a difference with the SerratioPeptidase. Never heard of it. Keep us updated on your son's progress!

 

[kenny]

I really hope this works for him. And I am glad he doesn't have to have any surgeries.

Thanks for explaining the fistula thing too. This disease seems to have so many different ways it manifests its self that I find it hard to understand.

 

[SValienteZZZZZ]

Another Crohns mom

all I will say is if you want a baby do not get another shot, this is important you may be lucky as you have only had one shot i wason it 4 3years and have been off for a year and no look as yet i had to wait 8 months for a period.