Post FMT confused for next decision

We have been doing FMT for last 2 months. My daughter's stools are very well formed with no blood and frequency is either once or twice a day. She is on very strict SCD diet with very minor exceptions.

Her ESR in November prior to FMT was 96 and now it is 50 when it was taken 2 weeks back.
Her Calprotectin in November prior to FMT was 1400 and now is 260.

New symptom post FMT: She is complaining of consistent headache and some days very severe headache after FMT similar to migarine.

However her abdominal pain is steadily increasing and now she is complaining of it being unbearable. She is currently on Lialda and 6MP and GI wants her to start on remicade.Before her pain was just in colon area and now she she is complaining every where. Should I have to give more time? It has been almost 1 1/2 years for us and with no proper remission and not a single day of relief.

Very confused as most symptoms improved but some symptoms have either remained same or deteriorated.

Have to decide if I need to jump to remicade ship or not.

Post Edited (kamakya) : 2/20/2015 4:31:02 AM (GMT-7)

The pain scale is between 2-5. Pancreatitis I thought would be unbearable.

One question would have to be if the FMT transferred a virus. Or if the large alteration of the gut microbes is directly related to the headaches. Hard to know.

It is also hard to know if a strong probiotic regimen in combination with strict SCD would have produced the same symptom relief. That is a problem with several treatments at once.

I wonder if some nutritional deficit from strict SCD is causing the pain and headaches. But, it is also possible that while stool has improved (its drymass is over 50% microbes), the inflammation has spread. Was she also on 5-asa meds during this time?

I think you should try Remicade, or if you delay, at least have another scoping to see if inflammation has spread. If you do try Remicade, also take something to prevent antibodies or it will likely lose effectivness after a year or two.

It is indeed confusing. If she is having normal bowel movements without any issue, I think the abdominal pains could be a non-colitis issue (maybe aza?). By those metrics, my doctor would say I am in solid remission.

I would ditch the SCD and add in "safe starches" like potatoes, rice, plaintains and maybe even fermented wheat. I think the diet is problematic in many ways. Has she put on any weight from before?

Weight gain is a sign of healing IMO.

Today morning she is behaving like a normal person with no major abdominal pain.

This is interesting. Could fiber be affecting her? How is her energy level? Is she back to feeling normal?

Dear Kamakya,

First I am really happy to hear that your dd's condition has improved. I hope she continues to do so and gains weight. I have been following your posts for some time but have not responded for reasons I cannot properly explain. It seems to me that the best decision u and ur wife made was to have the fecal transplant, after which there has been real improvement. Indeed the standard therapies seemed to have helped little. I am not sure why u think remicade would get rid of the pain and migraine. I think there is something to be said about pancreatis and would actually re-think Aza, which if I am not wrong did not seem to do much in the first place. As father of a 4.5 year old daughter diagnosed with indeterminate IBD I would much rather taper that than to introduce the biologic. After all this may well be a side effect of the Aza on the pancreas. Regards.

Pancreatitis is unbearable. I had it last winter and my pain was a 9-10. I couldn't even wear my jeans comfortably and I knew it was not a UC pain so went to the ER. I also vote for remicade.

kamakya said...
OurStorywithIBD

I was actually curious to know ayurveda treatment that you had followed for ur daughter. Infact, when my daughter was 1st diagnosed one of the first posts that I had come across was yours a was very eager to get in touch with you. My DD was also diagnosed for fructose malabsorption like your daughter and we where giving just pumpkin for few months after reading your post . Last June, for a brief time we followed ayurveda with bael,kutaj,musta and some concoctions. It did not work even though we tried for 2 months. Worst case if nothing works we do plan to visit India (I'm a tamil vegetarian). How is your daughter doing now? Is she in remission?


Today has been a pretty good day for us and she is running around like a normal person. Same time yesterday and day before she was on bed complaining of heavy abdominal pain.

I was also thinking if it could be pancreatitis but her pain level is generally 2-3 and worse has been 5. Just now she said "Daddy my tummy is paining" and then in 2 secs continued to play with her brother on the ipad.

Could it be digestive woes? Like maybe some issue with roughage or fiber? Sometimes as food as passing through the digestive tract, the irritated or inflamed parts will start complaining and then it will go away. Maybe a low residue diet would work out better there is more healing?

Kamakya,

Makes me wonder why to consider remicade for stomach pain and headache!!! Please don't go for it!!
Consider the positive symptomatic improvements including weight gain after FMT. That shows her colon is getting better.

Regarding the stomach pain- it was there before FMT.
If the stomach pain is constant then, I am assuming it could be from 6mp or lialda.
If it is only after food consumption, then she could be allergic to some tolerable/legal foods. Keep a food diary and track.

Headache- can be a sign of food/pesticide allergy.
I recently found out mine is so.
Sharing in case this would b of help...
Most vegetables have some sort of pesticides esp cabbage and cauliflowers and it is tolerated by most without problems.
I found out each time I have cabbage or cauliflower curries,(not immediately) only after 24 hrs to be exact- I will get strong unbearable, severe headaches.
So before cooking-I started soaking cabbage/cauliflower halves in salt water for few hrs changing water in between. You wont believe it...the smell of pesticide in that soaked water was so strong that even just a grasp itself made me nauseous and our entire family felt the same.Trashed it entirely!!
The strength of pesticide smell varies each time we buy. Sometimes there is nothing.

Indian store vegetables too same story ..even the tendura!!!

We switched to organic vegetables which i do the same preparation and so far no pesticide smell.
My headaches are much much less now.I believe sensitivity varies with people.Only me get these headaches even though my family of 5 eats the same stuff!!

Dear Kamakya,

Early last year my dd had her second flare after about a year in remission. When u asked I did not feel I was in any position to give advise. The difference the second time was very little or no blood but loads of mucus. We went through the usual list, initially steroids in addition to sulfa. When that did little, she went on 6mp. But it did nothing after trying for 5 months. Rather it only increased the number of flu episodes (worsening the flare). In August we decided to stop the 6mp. Because of her high WBC she was given antibiotics, azithro and flagyl, that helped. Sustained at about 5 a day of which about 3 were just mucus. Got sick again in November, and was given azithro/flagyl. Again improved to 4-5 a day. Tried homeopathy, which did not do much for the UC but did great for anemia, Hb count jumped quite a bit with no other support. Doctor suggested once a week azithro as a prophylaxis because there tends to be a cyclical pattern in my dds case (which is how many bacteria work). Alternatively humira. We turned both down and instead went to Ayurveda again. This time we are getting the herbs direct from an organic farm near Delhi (no bottled stuff). We are seeing gradual improvement, down to 3-4 times a day, better formed (once in the night though) Mucus gradually declining. Her weight is up and she is active and going to school regularly (touch wood). Also it has shown the ability to quiet things from a worsening flare (due to flu etc.). But I do think in terms of stools per se ur dd situation is better post-Fmt (which I don't have the option of here), except for the pain and migraine. We started Ayurvedic enema yesterday and had a generally good day. I am not expecting a quick fix but the option of gradual improvement is preferable to us than the higher allopathic drugs. That said she is taking sulfasalazine twice a day. Our Gastro does give us the usual scares though, but she too through her facial gestures admits that allopathic meds have been pretty useless so far, and knows that biologics for under 7 year olds has a very low success rate. Iwill be happy to point u to my Ayurvedic source but do note that improvement if any, will be gradual. We have learnt patience. International transport will be difficult, so u basically have to get friends to pick up from somewhere in India and hand it to you in the US. Regards.

Her current Ayurvedic meds are as follows:

AMA kadha ten minutes before any food.
Kutaj Ghan Vati 1/2 tablet before or after food.
Raktaj pravahika after food
Pitaji grahani after food
Shivsakar pachak after food.

This basically twice a day. The ayurved will tell you suitable dose for her age.

No brand for meds. The doctor basically prepares it by hand. Give me an email and I will send u the contact.