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Brian'sMom

Brian'sMom

Joined
Dec 5, 2010
Messages
1,261
Location
Midwest
Well, things have declined. DS has been having blood in his rectal drainage for past month or more. It's increased again and now is accompanied with bad cramps. Weight loss. Labs just came back that a stool sample of this drainage is all negative. Our Mayo team wants us to return to Minnesota. But they're having trouble scheduling with Christmas right around the corner. I am worried about waiting til after the new year. Will we ever get peace? remission? Last year at this exact time Brian was admitted to the hospital 1st time... And again at the end of January. Then the wait for surgery...
 
I'm sorry that he's not doing better. :( He (and you!) really, really do deserve a break from this and solid remission would be good!!!

Why does Mayo want to transfer him to Minnesota? And do they have any suggestions as to how what needs to be done now, ie more tests, tweaking of med dose/schedule, etc?

Lots of hugs :ghug: :ghug:
 
I'm so sorry to hear that Brian'sMom. I hope and pray this will give him the break he deserves. Is Vedolizumab not helping at all? There's no chance they'll try Stelara?
Sending HUGS:ghug:.
 
So sorry he's facing surgery again.

Sending both of you my support.
 
Sorry to hear your DS isn't doing well AGAIN.. UGH! You and your family deserve a LONG break from all this.
 
Mayo GI called this evening. Here is the plan. He wants to wait for that gene panel results. He says often that he wants to make sure we're treating crohns. That test should be back in 3 to 4 weeks. He wants to move Vedo to 4 or 5 weeks. This Friday would be the 4 week Mark. He added Ciprofloxacin to the Flagyl we started on Monday. Then he is scheduling scope, mri, immunology, endocrinologist, surgery consult and on surgery calendar all for January. By then Brian may have 2 more Vedo doses and DNA test back, so we'll have everything we need to make a decision to removing large bowel. I just hope the antibiotics help with the cramping. That's awful seeing your child in pain. If things get worse we may do a mri here. He said Vedo is slow to work, but seems safer than some of the other biologics. But also that it's new and no one knows all for certain. We've been on Vedo for 17 some weeks... I wonder if he's making sure about the genetic stuff... Its all so slow getting results from that
 
Wishing you great results with the new plan. For what it's worth, my teenage family member did really well on a cipro and flagyl combo when all else had failed. It is now her long term maintenance therapy.

Hoping for much better days ahead for you and your son.
 
Sorry to hear that. Hope the antibiotics can tide him over till everything can get done in January
 
They think that could be happening. But the rectal drainage was always present after surgery. I think he knows rectum isn't healing, even with diversion. And he hasn't grown this past year. And only lost weight since getting off TPN in April.
 
I am so very sorry to hear all this Kathy. :ghug::ghug::ghug:

I hope the antibiotics help settle things down until you have a clearer idea of what may lay ahead. Sending much love and warm wishes your way hun. :heart:

Dusty. xxx
 
Puzzling but good update... Mayo GI had us do Vedo at 4 week Mark instead of waiting to 8 weeks (and before we travel to see him in january). Before infusion starts they took labs. Before we left the inflammation markers were in. CRP was 1.7 down from 3.0 and SED was 31 down from 45. He's only been on antibiotics since Dec 8th for flagyl and Dec 10th for ciprofloxacin. He has been doing better since adding the ciprofloxacin. Almost no drainage and therefore no cramps. I don't think adding an antibiotic last week would change the inflammation markers that quickly.. Could it be the Vedo... Hmmmm
 
When S was diagnosed, he was admitted but the only med he was given was IV flagyl (no cipro as he'd had an allergic reaction weeks earlier when GP thought he was fighting a really bad stomach bug). The only other medical 'treatment' was that he was put on a low residue diet for the week, until they could do scopes. Between May 15 and May 23 (they were testing daily), his CRP went from 135 to 3!! So, S did have quite a dramatic response to flagyl. Hopefully, Brian is responding as well and this will push him into remission with Vedo. :ghug:

(FWIW, after stopping flagyl, ie when he went home, his CRP did inch up slowly, while on EEN only and did fluctuate btwn 5 and 20 for the next couple of years - so adding and removing Flagyl did have an immediate reaction. I've never understood why antibiotics aren't used more frequently to control flares.)
 
We also saw an almost immediate drop in inflammatory markers on cipro/flagyl-within 10 days. Symptoms improved literally overnight.

So pleased to hear that something is working for him.
 
Doc said that's what they used more frequently as a maintenance med before all the biologics. Our KC gi always worries about Flagyl and neuropathy from long term use. She only prescribes 14 days. She agreed to keep the ciprofloxacin for longer. What do you all think about that. I can go over her with Mayo... Once when Brian was little he was on Flagyl for a month.
 
We actually had the opposite approach-after a year on both antibiotics, cipro was discontinued, but still on flagyl. Thankfully, still in remission. Monitoring for any signs of peripheral neuropathy is ongoing. Bloods continue to be excellent-the first time in 7 years that there is no anemia. Sometimes I'm afraid to say these things out loud-I don't want to jinx it:smile:

Wishing you great results going forward with whatever you decide.
 
As others have said, Flagyl/Cipro can work wonderfully for some and quickly too. :) Bear in mind that Flagyl does have antiflammatory properties.

As to the length of time…yeah, I see the GI’s concerns but 14 days seems pretty darn conservative to me given the circumstance.
Matt was on Flagyl for 6 months, 3 months pre op (400mg 3 times daily) and 3 months post op (200mg 3 times daily). In his case he had no side effects whatsoever, his only preference was brand over generic.

Dusty. xxx
 
My son had IV cipro/flagyl combo for 8 weeks without issue and it worked to clear a fistula and abscess. he started on Remicade near the end of it too.
 
So ciprofloxacin alone isn't done? Just Flagyl alone or the combo? A few months ago we did 14 days of just flagyl. We've only had the dramatic effects when we added in the ciprofloxacin.
 
On this forum, kiny has some great posts about the effectiveness of antibiotics for Crohns.

Cipro is macrophage penetrating, which is effective against certain pathogens associated with Crohn's eg. MAP and AIEC. Flagyl has anti-inflammatory properties but is not macrophage penetrating. We are carefully monitoring for any signs of symptoms since our doc removed Cipro-but we have to go with his advice and then revisit if necessary.

Here are some of the posts I referred to:

http://www.crohnsforum.com/showthread.php?t=40985

post 2 mentions the specific antibiotics cipro and flagyl

And this thread describes different experiences with combo or solo use of cipro and flagyl:

http://www.crohnsforum.com/showthread.php?t=5035

It's so hard to know what to do with this disease-all we can do is be well informed and take the best professional advice we can.
 
Helenmelb , thanks for the links to those threads! Really helpful. May I ask what the strength of flagyl your child gets a day for maintenance? Do you notice lack of appetite at all?
 
My niece is 17 and weighed 42kg at the height of her flare last year. No amount of Boost or Ensure could bring her weight up.

She started on 500mg twice daily of cipro, and 400mg twice daily of flagyl. 4 months later, scopes showed tremendous improvement and her dosage was reduced to 1 per day of each. Last appt one month ago, the GI dropped cipro altogether. So now the only medication is flagyl once per day.

Bloods look great and weight is now 51kg.

There was some nausea at times, especially early on, but only minor nausea infrequently now as the only side effect.

Hope this is useful info-sending lots of positive thoughts your way
 
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Glad things are better. We used the Cipro/Flagyl combination for 2 weeks then just Flagyl. He was on Flagyl for 3 months with no side effects.
 
Sorry I didnt see this post until today. I am so glad to hear how much he has improved with the antibiotics. Hopefully he will continue to move Iin The right direction.
 
So yesterday was our next Vedo infusion. (the past 2 were the ones that have been at 4 week intervals). DS is still on Cipro (250mg 2x aday) and Flagyl (250mg 3x a day). His SED is 26 (was 31 4 weeks ago) and CRP is normal at >.5 (was 1.7 4 weeks ago). His weight went from 70lbs 2 ounces lbs to 73 lbs 10 ounces in the past month. So things looking good! Now I'm confused what is helping him tho... the antibiotics or the Vedo... or both? Our appt is set for January 27th-30th at Mayo. I am waiting on email from them about yesterdays results. Any thoughts? He looks good and has been feeling great. No cramps and rectal drainage is so minimal with NO blood anymore. (I think the drainage now may be normal for a diverted colon)
 
What great news that he feels good and has gained weight! Very happy for you both.

It is so hard to know, isn't it, what exactly it is that is working? So much about Crohn's seems to be a guessing game. Unfortunately, the only way to really tell whether its the Vedo, the antibiotics, or both, is to stop one and see what happens-a really risky move given that he is so much better.

We've been in a similar situation (with LDN and antibiotics) and our doc has been very reluctant to make changes-his attitude is generally 'if it's working, don't change a thing'. Once a sustained improvement was seen, then he was willing to tweak dosages.

If you've been happy with Mayo, I think the safest move is just to take their advice going forward.

Best of luck for your appointment and hope your boy goes from strength to strength.
 
So glad things are looking much better....a big relief for the both of you!! It is so difficult to know what is making things better when they make several changes at once, but it's certainly understandable that they had to do as much as they could ASAP, and I think you will find out eventually. For N, Flagyl helped tremendously.....he was on it for almost a year at one point, and then several times after that...once for a flare, and once for cdiff.

I hope your appointment at Mayo goes well, and that he continues to improve!!
 
So fab to hear that things are heading in the right direction Kathy! :dusty:

I agree with your thoughts and those above, there is no real way to know and you may never know even if you cease one of the meds as there remains the possibility they were complimentary to each other in achieving this desired outcome.

Sending loads of luck and warm wishes that the appointment goes well and Brian keeps going from strength to strength, bless him. :heart:

Dusty. xxx
 

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