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Hi, we're new here.  My 5yo daughter has a really complicated history so I will try to give you the short version.  She has severe cerebral palsy, seizures, autonomic dysfunction, needs O2, and has a lot of GI problems.  In 2006, after a virus, pancreatitis, and sepsis multiple times, she lost most of the function of her gut.  She has been on TPN (IV nutrition) since then.  She also has G and J tubes.

This summer she developed a large perirectal abscess with fistula that required two surgeries and a seton to heal. 

She also developed a perianal abscess with a large fistula and five skin openings that she finally had surgery to open up in September. 

Repeated scopes have shown chronic inflammation throughout her colon, but not enough changes to be diagnostic.  They think that her TPN has been "treating" underlying Crohn's disease.

Anyway, her anal fistula site that she had surgery on in Sept just will not heal.  It has tons of granulation tissue.  Her surgeon wants to take her back to the OR to cauterize everything.   We are trying silver nitrate in the interim, and while it does get rid of extraneous tissue, it is really irritating her poor bottom and I am not entirely sure it is going to help it heal up. 

Does anybody have any words of wisdom?  She is very complicated with multiple organ systems profoundly affected by her other conditions, so we have only treated her with sulfasalazine thus far from a medical perspective. 

Thank you in advance.

 Reply posted for srmina.

I understand your frustration.  Like you said, your daughter has so many other health issues it's hard to decide what to do considering the effects of the different drugs. 

One suggestion (that I haven't done myself - yet), but a friend of mine who has Rheumatoid Arthritis (also an autoimmune disease) has tried.  She has had RA for 10 years and was in extreme pain for many of them.  She went to see a Holistic Doctor.  The appts to see him were not covered by her insurance and were approx. $500, but the blood tests that he ordered were covered.  Basically, he looked to see what her body was missing and put her on different vitamin/mineral supplements including intravenous Vitamin C.  The good news is after 1 year of treatments, she feels the best that she has felt for years.  She is off 2 out of her 3 meds and has even been able to decrease her heart medicine, because her body is becoming that healthy.  I know that the TPN is supposed to be geared to what your daughter's body needs, but maybe another Dr's viewpoint may be able to add something that they are not putting in the treatment.

I've also been told that accupuncture (which some insurance companies cover) can help with chronic diseases.

Lastly, I did try hypnotherapy.  The hypnotherapist (who also works with children) gave me one cd entitled Sleep & Health.  It really did help me to sleep and it gave me back some of my energy.  It gets you to focus on your breathing and imagine a healthy you.  She also did a personalized cd that focused on reducing my stress, which is my big factor with CD.  She came recommended to me by a nurse.  It was not covered by insurance, but the 2 (1 - 1 1/2 hr) sessions that I had with her cost me approx. $275.

I know this is a lot of info, but you never know what just might work.

Best of luck with finding what works best for your daughter!

 Reply posted for JMD711.

Thank you so much for your reply.  She had a seton with her other abscess this summer and that worked really, really well.  I hope it works for you!

The only way to place a seton for this one would be to go through the sphincter, as the fistula starts there.  The seton was our initial plan until the surgeon opened it up and we figured out where exactly it was.  Her surgeon does not want to do the seton for this one because she would constantly leak stool, which is not what she needs (she has chronic diarrhea to start with) on top of everything else. 

We have been told that if she gets anymore abscesses/fistulas or other issues, we will have to do a more aggressive treatment.  It is so hard to decide what to do with my daughter because so many organ systems are affected.  Her liver, pancreas, lungs, and gall bladder all have some level of impairment.  Her gut and bladder are considered failed.  Her nervous system is profoundly impaired, both central and peripheral.  We always have to weigh whether side effects of meds will be worse for her than the treatment itself. 

 Reply posted for srmina.

Hi,

Welcome - I'm new to here too eventhough I was diagnosed with CD 7/11/07.  I'm so sorry to hear all the complications that your daughter has had to deal with at such a young age.  I was on TPN back in May after a bad episode.

I had a perianal abscess that is now a fistula.  I had the abscess surgerically drained the 1st week of August and other drainage spots have either been asperated by the Dr or opened up on their own.  I went for a 2nd surgical opinion and this Dr specializes in Colon & Rectal surgery and is very aware of CD.  I'm scheduled to have Seton placement surgery in December, because the fistula won't heal on its own.  It's too large and there is still alot of drainage.  The Seton placement surgery is scheduled as day surgery and I was told it is approx a 2 week recovery period (sitting will be at a minimum).  After the 2 weeks (all things going well), I am supposed to go back on Remicade.  Both my GI Dr and the 2nd surgeon are in agreement that the Remicade and the Seton should get this fistula to heal. 

I started taking Remicade when I was on TPN back in May.  To give me both, I had a PICC line with 2 lines - one solely for the TPN and the other for blood draws and the Remicade.

Ask the Dr if your daughter is eligible for the Seton placement and/or Remicade.

Good luck with everything.  It's not easy being sick - CD is very frustrating, because it can affect each person differently.  There is no one size fixes all solution.