OK, so, getting to the end of our rope, perspective needed.

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muppet

muppet

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Aug 10, 2011
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I love giving my two cents around here and offering all sorts of advice (I'm sure you've noticed ;)) but I hate, hate, HATE asking for it. It implies I don't know everything...

Sarah is 14 now, and for the past 3 years, following her failed Remicade trial (3 infusions and then a severe serum sickness reaction that was quite dramatic), she's been on 37.5mg 6MP with 50mg Allopurinol and that has given her a few stretches of stability, but none longer than 5-6 months, and I suspect some quiet inflammation is going on throughout. She's probably 5 years from her last scope, which is way too long, but with all her hospitalizations 3 years ago I was in no hurry to put her through more. I didn't really realize until tonight, thinking about it, how long it's been.

I don't think 6MP is doing it for her. Her quiet periods are too short and too fragile. Her drug compliance has not been 100% (3 days per month, she and we both forget at the same time) and her diet compliance has probably been worse (she's a teen, and often sneaky).

Her diagnosis is still technically UC, but I worry all the time that it's only because Crohn's hasn't let itself be known yet. Her GI at CHB says that Humira really isn't an option for UC. I think he'd probably recommend a total colectomy given that Sarah's inflammation is throughout her colon (but none, as far as we know, in the small intestine, but she's never had an endoscopy or a pill cam.)

She's starting a flare right now, and I'm not sure where to go. I think I want a colonoscopy to not only get a picture of her inflammation but to look for granulomas (even though I know they won't necessarily be found even with Crohn's), and I think a pill cam might be in order, before I start entertaining the idea of colectomy for her.

Input?
 
I'm sorry Muppet, I really have no advice to offer since I'm just learning more about CD myself and have learnt so much from reading your posts I wanted to say thank you for all your help and I am so sorry I cannot offer any help to you :( I hope that one day I will know enough to offer guidance but am still so unsure of everything myself and look to you guys for help.

I really really hope someone can give you the advice you seek since you are always there to help us. I wish you and Sarah the very best and sure wish I could offer more.
 
Just remember you asked....
To figure out what to do
You need to know what the inside looks like
Upper / lower scope combos are the standard for kids now
So I would ask for that with a pill cam
Has she had an mre recently?
Fecal caloprotectin test?
Not one test can tell the whole picture but the combination
May be able to tell you more which is important in her case
Crohn's vs uc .
How is her disease being monitored outside of blood in terms of tests or just physical symptoms alone??
Has her Gi recommended a scope/ imaging tests and you/ she didn't want them ? Or is this they offered a while ago and you didn't want it so they didn't bring it up.

As far as humira and uc don't really know if it would be effective but given until recently remicade wasn't approved at all for uc and given just because a drug is approved doesn't mean that it will be effective in your child either I would ask about trailing it after you have test results to get a clearer picture.

If she has any disease in her upper area ( stomach duodenum small bowel via pill cam etc) then you don't need to find a granuloma .
Although from what I read kids tend to have them more than adults .

The other thing is a lot of severe uc kids go on to be crohn's kids/adults since Ibd tends to spread over 10 years in kids .

Second thing puberty is majorly coming in to play since hormones cause the immune system to shift so what may have been in control before - not so much at 14.

EEN is an option for adjunctive therapy but not solo it may get her over the hump but again proven not to be as effective in UC
EEN is more effective than TPN at least in crohn's .
Hence the need for more tests
May be worth a shot if surgery is the only option.

LDN could also be added to the 6-mp but has potential Neuro stuff .

I would suggest talking to her Gi about the tests see what info you can get and if it still uc talk through the options with the Gi
If not uc then you can make a new plan.

Second opinion places would be chop and cchmc .
We have been to cchmc twice for 2nd /3rd opinions
Pm me if you need more info there .

Good luck
 
I would try antibiotics that specifically target E-Coli. It has a decent chance of working, but I do not know if a doctor will go for this or not.

I put down a low grade flare some years back using this approach, but I used an alternative treatment to accomplish it.

I am really sorry that someone so young has to deal with this.

Dan
 
MLP - We haven't turned down any tests. Since transferring Sarah's care to CHB, things have been very quiet and I think he just hasn't felt the need for imaging. Sarah's remissions have been fragile, maybe he worries scopes will exacerbate something. I've admittedly been somewhat distracted with the fight to get our littlest one state and then local services and haven't been at the wheel to the extent I have been in the past with Sarah.

I don't think she's ever had an MRE or CT of her abdomen in her life. Colonoscopies only. Doc seems confident of her UC diagnosis and also confident Humira is a poor choice for her. He's a well regarded specialist and I haven't had reason to doubt him so far.

CHB was our second opinion facility and we liked it so well we transferred. It would feel weird pursuing a second opinion elsewhere, but I guess in the case of surgery we would.

"Neuro stuff" with LDN could be an issue since Sarah has clinical depression and suspected neuropathic pain, not sure how that would all interact.

I've been thinking about EN to get her over the hump as a stand-in for another prednisone course, which she's already had many of and often becomes dependent upon.

Remicade was a very negative experience so I'm very gun shy about Humira.

I agree about doing all possible to "make sure" it's UC to the extent possible.
 
I would absolutely look towards a scope for her (upper and lower as long as you're going), and an MRE or a pill cam, depending. Izz had an MRE after having symptoms that could have indicated sb issues, although her small intestine was clear.

Do you feel that you have exhausted all med options? Izz had a colectomy date in August at Boston childrens...I cancelled it two weeks prior after the Tacrolimus they put her on cleared her up. (SHe's been on it since April/May) Mind you, Tacrolimus has it's own list of horrors for potential side effects and they aren't keen to leave children on it long term, but I'd still prefer it to life altering surgery that may help temporarily. (organ transplant recipients, including children, are on it long term). I'd like Izzi to be a bit older and able to participate in the decision to have a colectomy if I have the option.
I'm so sorry you are facing this...and hope you find something that works for her.
 
I've had the same feeling about colectomy, Angie. It's been pushed many a time in Sarah's history and I've found ways to do end runs around it for 11 years, but we're running out of stuff to do.

I hadn't heard of Tacrolimus as a Crohn's/UC therapy before.
 
Doesn't methotrexate inhibit mucosal healing? I'm not sure why anyone uses it for IBD.
 
I'd just like to chime in and say that I was severely depressed pre-LDN and it jerked me right out of that. While I'm not as super duper happy as I was the first few weeks on LDN, the energy it has given me has made me feel better.
 
All of the studies I have seen it has been proven to be as effective at treating crohn's as 6-mp including in children .

DS failed it but I can dig up the studies if you want.
There was no way I was even going to try it until I had read a few of the studies .
 
Early studies showed that a successful course of steroids resulted in total mucosal healing in only one-third of patients,5 and similar rates have been reported after induction of remission with enteral nutrition,6 or even infliximab.2 However, as far as the relevance of mucosal healing lies in its impact of long-term outcome, it should be more reasonable to assess it during maintenance therapies rather than after short-term treatments. In that setting, mucosal healing has been scarcely evaluated. D'Haens et al3 retrospectively analyzed endoscopic healing in 20 patients responding to azathioprine. After a median of 24 months of treatment the authors reported 70% of total mucosal healing in colon and 54% in terminal ileum. Rutgeerts et al7 in a substudy of the ACCENT-I trial reported a total mucosal healing rate about 50% in 26 patients receiving scheduled infliximab therapy for 1 year. Recently, a higher mucosal healing rate has been reported in 26 patients treated with azathioprine after inducing remission with 3 infliximab infusions. Fewer data are available with MTX. Kozarek et al,8 in 1989, suggested for the first time that MTX could induce clinical remission and reduce steroid requirements in chronically active CD. Among 11 patients with clinical response, 5 (45%), all of them with isolated colonic disease, achieved total mucosal healing. Panaccione,9 in a series of 17 CD patients with clinical response to a 40-week course of MTX, reported total and partial mucosal healing in 10 and 4 patients, respectively. Our data agree with those previously reported with MTX, suggesting that clinical response to the drug is associated with mucosal healing in up to 40%–50% of patients, similar to what has been reported with other maintenance therapies. Although larger, prospective studies are needed, these data provide additional arguments for the use of MTX in CD.
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From:
http://onlinelibrary.wiley.com/doi/10.1002/ibd.21015/full

So yes mucosal healing with Mtx
There were plenty more
Use goggle scholar
Hope that helps
 
MLP
I don't know what neurologic side effects you are talking about. LDN has almost no side effects. The main side effects are vivid dreams, mild dizziness, and headaches.
See this link:
http://www.lowdosenaltrexone.org/gazorpa/LDNFAQ.html

Muppet,
Caitlyn has done great on LDN and the only side effect she has had was dizziness the first few weeks and occasionally a headache. She is in remission for the first time since diagnosis. She also failed remicade and imuran. She had minor success with methotrexate but was never brought into full remission from it and eventually it stopped working.
 
Hmm, so I totally missed that but I don't think that reallly creates any negative side effects other then causing the brain to produce more endorphins which is not a bad thing after all endorphins make us happy. :)
 
Except in the case of a family history of depression or bipolar ( manic depression) since the exact cause of both is unknown and this drug is being used in developing brains.
Not saying it doesn't work clearly it does but it does clearly effect the brain just something to discuss with your neurologist and Gi since there could be an unknown risk .
 
Naltrexone is an oral medication typically used to treat alcohol and opiate addiction. Some have suggested that low-dose naltrexone (LDN) might prevent MS attacks, help treat symptoms, and slow the overall course of the disease. Similar claims have been made for the use of LDN for treating AIDS, cancer, Crohn’s disease, and rheumatoid arthritis. Dr. Bernard Bihari, a New York physician, was the first to suggest LDN treatment for many diseases, including MS.
Regular doses of Naltrexone are around 50 milligrams per day; LDN is between 1.5 and 4.5 milligrams per day. There are several theories about how LDN might produce beneficial effects. LDN may increase the production of endorphins, thus alleviating pain and improving mood. Alternatively, LDN may provide therapeutic benefit by decreasing the formation of free radicals, harmful chemicals that may damage nerve cells and other tissue.
Until recently, only anecdotal evidence for LDN treatment of MS was available. Several recent studies involving MS and EAE, an animal model of MS, have produced preliminary findings. Two recent studies in EAE have suggested that LDN decreases nervous system inflammation, immune cell activation, and overall disease severity.
A study of 80 people with MS was recently conducted at the University of California-San Francisco (UCSF). This study suggested that LDN treatment does not affect physical functioning, but does improve several measures of mental health and pain. A smaller Italian study focused primarily on the safety of LDN was recently published in the journal Multiple Sclerosis. LDN was generally well tolerated. This study also reported that LDN treatment was associated with decreased spasticity and increased pain. LDN did not affect fatigue, depression, or quality of life.
The results of LDN research are suggestive, but not definitive. Many of these results are preliminary and have yet to be published. Both clinical studies mentioned are limited in size and scope: the Italian study did not include a placebo group and the UCSF study was not designed to evaluate disease activity. Furthermore, EAE research results often cannot be applied directly to MS, so these studies must be interpreted cautiously. Further research needs be completed to determine the safety and effectiveness of LDN in MS.
Safety data for LDN treatment in MS is not currently available. The two clinical trials conducted have suggested that it is usually well tolerated. Some people have reported “vivid dreaming” when they begin treatment. LDN appears to be associated with mild abnormalities of cholesterol, blood count, and liver function in some people. It may also cause irritability.
Although definitive information on LDN and MS is not currently available, some people may be interested in pursuing LDN therapy. Those interested should be aware of the limitations of the available research and should carefully discuss LDN with a health care professional before pursuing treatment.
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From:
http://www.neurologycare.net/low-dose-naltrexone-ldn.html
 
one or more GI side effects. The profile of the side effects is shown in the accompanying Table. In the patients with side effects, 24/74 (32.4%) had short-lived symptoms. In twenty of the 74 patients (27.0%), naltrexone was terminated owing to side effects. The rest of the patients were able to tolerate the side effects. The frequency of side effects for the group treated with 2.5 mg compared with the group treated with 5.0 mg daily differed in three symptoms, respectively:
1. Anxiety (11.9 vs. 21.7%)
2. Muscle pain (4.5 vs. 15.2%)
3. Diarrhea (6.0 vs. 13.0%)
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From:
http://www.gidoctor.net/client_files/file/Naltrexone-Side-Effects-and-Efficacy-in-GI-Disorders.pdf
 
I read this over but it seems to be the only place mentioning all these possible side effects. All the other articles I have looked at say over and over minimal side effects.
One interesting thing to note in this study was it was done by questionaire after the patients have taken the LDN. They did not use a double blind or placebo which are known to be more accurate. Anyway bottom line is it is overall a safe drug with minimal risks and seems to work for a lot of people. It is not going to work for everybody. There is not a drug which seems will work for everyone. Everyone's body is different and metabolizes drugs differently. All I can say is try things and see what works. I myself am the perfect example of someone who does not do well with medication. They either make me extremely sleepy or hurt my stomach terribly. I am probably the only person that gets sleepy from Tylenol. My daughter caitlyn had extreme allergic reactions to remicade and imuran, she got severe nosebleeds from pentasa and methotrexate stopped working for her so for us LDN has been our miracle, for you guys, MLP, iit has been remicade. My point to all this is I don't want someone to get scared away from trying LDN when it could possibly be the right treatment for them.
 
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I am completely with you - what ever gets rid of the symptoms.
remicade has some bad side effects but for DS it works and so far so good.
 
Im preaching to the choir when I say all kids are different. But Claire is doing better on her current regimen (including MTX) than she's done in a LONG time.

I'd probably ask for the scopes (since it has been so long), pill or MRE and the fecal calprotectin along with her labs. If your gut feeling (pun intended) is that she's not where she needs to be, go with it. The few times I've ignored or tried to postpone this feelings are the times I have ended up wishing I didn't.

Thinking of you all -

Julie
 
I know how we all love to put our carts before our horses but I am of the opinion that you really need to SEE what is going oninside before you can make an educated decision about treatments...although admittedly your options are slim. I would second the upper and loer scopes and a request for pillcam.

FWIW - we have a friend who has a daughter with UC who was on Remicade and I think Pentasa and she wasn't improving much. They did a course of EN and it kicked her into remission. Not saying it works overall in UC but it did in her case. Their plan is now similar to ours..Remi and Pentasa and hit flares with EN.
 
Well said everyone, Muppet I can only offer my support and hope you get answers and a plan to move forward on. We haven't gone the remicade out but were heading for humira when Jack's GI suggested LDN. It has been a miracle drug for us as well but I know just as many that humira and remicade have been miracles for.
We did use methotrexate for a time and it really worked in bringing the CD under remission unfortunately Jack had some lung issues and it is not an option for us anymore.
 
EJ is scoped annually, admittedly due in large part to his psc, but still 5 years would drive me crazy. Good luck Muppet! I have no doubt you'll find the best plan for Sarah.
 
I hadn't really realized how long it's been since a scope. Normally I'd never let it go so long. The past couple of years have been pretty traumatic for the Warner family and I lost track of things I normally would not.

Last time Sarah was hospitalized (with her Remi reaction), her little sister was a newborn in the NICU at UCONN and we were terrified she was being brain damaged by her severe jaundice (that her birth hospital had all but ignored.) It's time to get back on top of things that I've let coast for awhile. Sarah was doing fine until last night when she said her symptoms were coming back. Her bleeding is very mild and she only cramps "when I think about it," but she's pretty scared already because she knows that we're getting down to the last meds.

Methotrexate and Tacrolimus are new options, to me, hadn't heard of them at all before this forum. And LDN, which her doctor at Children's Boston has already poo-poo'ed once a few years back.

I emailed Dr. B and he's going to get her in on the 3rd or the 8th to discuss the remaining options.
 
How is her little sister doing now? I know it is difficult managing a lot of kids with different issues. Trust me we have five and four of them have issues! Good luck with the doctor appt and make sure to push for some testing. I have to agree that five years is way to long. Caitlyn has had a scope yearly until now when she is in remission and the doctor told us once someone has had these illnesses for more then five years or reached age eighteen then they need yearly scopes.
 
I can't add to all the advice above but lots of support and understanding. :ghug:

Has there ever been discussion re possible next steps for Sarah?
 
Izzy is catching up very quickly and hardly seems delayed anymore. She hates to make eye contact and has to be coached to do it, and when she's extremely tired, the "autistic" traits that earned her a diagnosis still surface, but every other time you'd never know. I still don't buy "autism" for her diagnosis, as autistic kids don't recover in the way that she has. A year ago she was like a little wooden puppet (even though we were SO relieved when she started talking). Now she struggles with a speech impediment that to me, sounds like apraxia but I've been assured again and again that it isn't.

I was told I needed yearly scopes after 20 years with the disease, I guess they keep pushing the bar down. :)

I can barely remember my last scope. I guess I should get that going, too...
 
Tess - only that her old GI felt that total colectomy was her best option. She was always very optimistic that it would be a definitive cure for Sarah because she strongly bought the UC diagnosis in a way that I do not.
 
It certainly seems worth trying all possible meds before taking that step... at least, as you've said before, until she's a bit older to make that decision.

Another possible option could be Cimzia??? I don't know if it would be any more effective than humira but may be worth asking about. Crohn's mom 's daughter has used Cimzia. I'm not sure where it is in the approval process - don't believe it's approved for Crohns/UC in Canada but is in the U.S. but, not sure about for children???
 
I've always strongly been for exhausting all the drug options before allowing surgery, and felt the same way about Remicade, but I've also watched Sarah suffer and be hospitalized and receive blood transfusions and be the subject of parades of medical students because of how "interesting" she is and I have to admit that if the new GI starts pushing for colectomy as a definitive resolution to this nightmare then I'll be very tempted to forget about the remaining 4 or 5 new "maybe" drugs that are out there.
 
Yes, we've been very lucky in that Stephen hasn't had to endure severe symptoms, etc. but I can imagine how heartwrenching it would be to see your child suffer and then to ask them to take on more challenges! :( Lots of hugs, not easy choices to make! :ghug:
 
I think there was one other person on here who's daughter was approved to try Cimzia (Kimmidwife ? Caitylyns mom) is who first comes to mind.

As far as I know tho, Cimzia is not FDA approved for anyone under 18 yet.
 
I've been doing my own Crohn's thing for 29 years now, and Sarah's for 11. When I was first diagnosed I was too young to be scared and by the time I was old enough to understand why I should be scared, it was too familiar to be scared of. Crohn's generally has never scared me as I've always managed to pull something out and get things "normal" again, but in the past couple of years Sarah's disease has been damned stubborn about not going away and my formerly well-stocked confidence is getting really thin. I have to finally admit that she's been on Prednisone far too often in the last 3 years, and things just aren't where they ought to be at all.
 
Cimzia is not approved for pediatric use yet.
There are on going pediatric trials at cchmc.
I believe for crohn's only but I could be wrong
Good luck with the Gi discussions
Never easy
 
Muppet, if you are going to Boston Childrens, I would ask about Tacro. THat's who put us on it (We saw Dr. Essers before he moved to Seattle and Dr. Zitomerski, plus the surgeon, Dr. Linden). There isn't a ton of great info on it but there are some studies, and the physician that put her on it told us it is regularly used in Boston. THere is also an adult on this forum that uses it.
We struggled with Crohns vs UC as well, especially pre-surgically. (Izz presents as UC but a granuloma was found.) ID even tested her for some obscure things for us just in case.
Expecially with Crohn's, but also potentially with UC, I have an intense fear that the surgery will just buy time, like all of the other drugs. I would be fearful that she would be better for a while and then start having Crohn's related issues again, and where would I be THEN? Unable to reverse it. Which is why, for me, I would much rather wait and try every drug available.
I'm not sure if it has been great for UC as well, but there are peds clinical trials dealing with stem cell transplant right now. Izz doesn't score high enough on the CDAI index to count, but it's an option at the back of my mind.
Wishing this were easier for you...
 
We're going to Children's Hospital Boston on the 3rd but to the Lexington office for GI which I've never been to before, and we're probably bringing Izzy (she never tolerates 30 minutes in the car, so 90 ought to be interesting) since my wife is working.

Hopefully there's a garage out there or something. I don't even know the name of the building out there and the website doesn't give one so I guess maybe it's just CHB at Lexington.

I wish I wasn't so clueless about public transit, we don't have such animals in CT. :) I know how to use the Green Line and that's it. Apparently you can get to CHB in Lexington on the Red Line and then transfer to the #62 bus (how you tell which bus is the 62 I have no idea, I guess on the little LCD screen thinger?) to go to the front door of the building, which I'll have to recognize from the crowded bus window despite never having seen it before. Oy.

When we go to the main CHB campus I just drive straight into Longwood and park in the garage.
 
Sorry I don't have much advice to give. Just wanted to send my best - hope the appointment goes well. I would second the EN - Andrew has done really well since he did the 8 weeks exclusive liquid diet. Might be something that could just push her into healing enough for the drugs to maintain.
 
Hey muppet,

One day in the garden doing hard labour and I miss all this! :yfaint:

I have to be honest and say that I only skimmed over all the responses so only going on your original post...

If it were me I would have upper and lower scopes done. Then an MRE to visualise the small bowel and if need be a pill cam. You need to establish what is happening before you can move to the next step of deciding if treatment needs to be altered, whether that be tweaking or change of meds or heaven forbid surgery.
Silly as it seems have them also do a thorough palpation of her abdomen, a pair of good hands can pick up issues that way too.

Dusty. xxx
 
I'm on board with all the imaging, but I'm not sure if Dr. B will be. I'm glad people brought up Tacro and MTX because I wasn't even considering them. LDN will be mentioned at our appointment again but I'm expecting it to be quickly poo-poo'ed.
 
muppet said:
We're going to Children's Hospital Boston on the 3rd but to the Lexington office for GI which I've never been to before, and we're probably bringing Izzy (she never tolerates 30 minutes in the car, so 90 ought to be interesting) since my wife is working.

Hopefully there's a garage out there or something. I don't even know the name of the building out there and the website doesn't give one so I guess maybe it's just CHB at Lexington.

I wish I wasn't so clueless about public transit, we don't have such animals in CT. :) I know how to use the Green Line and that's it. Apparently you can get to CHB in Lexington on the Red Line and then transfer to the #62 bus (how you tell which bus is the 62 I have no idea, I guess on the little LCD screen thinger?) to go to the front door of the building, which I'll have to recognize from the crowded bus window despite never having seen it before. Oy.

When we go to the main CHB campus I just drive straight into Longwood and park in the garage.
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We stay right at the hotel on Longwood, as I have a bad time with public transport. We stayed for 3 days last year, and not once did we get off the green line back at the hotel. We walked three miles one day after getting off (good thing for strollers for the kids lol...the first mile and a half were in the wrong direction and the hotel was two blocks from where we got off the bus lol!!) Good luck with Izzy in the car...mine were cooped up for 6 hours in the car and we had 2 appointments back to back when we got there...ugh. Not my best day for sure!
 
Hi Muppet,
Caitlyns previous doctor before we moved to florida tried to push cimzia on us. I did the research before hand it said not approved yet for pediatric use. When I brought this up he poo poo'ed it and said it is fine. I decided no and when I brought up LDN he also poo pooed it but I walked in there and said listen this is my child and this is what I want to try and write me the scrip and he did.
 
Sorry to butt in but I have a few thoughts. I have a child dxed with UC at age three two and also without remission. I actually want surgery but like you fear the CD dx post colectomy. Just wanted to chime in as we've had a second opinion from Dr B at Boston as well. He doesn't really hold much hope in mtx but I think he said it was worth a shot (this is for UC). We decided against it as my daughter was previously treated by the team of docs in Italy who published that UC/MTX study. They felt it was a long shot for her since they believe it works for some but not very well long term. If it's actually CD though it might be worth it if you're trying to avoid surgery at all costs.
Would you consider a fecal transplant? I ask because Boston Children's has approval to do this by scope for UC on an experimental basis. My daughter was supposed to be the second child to have this done there but she was too unstable to travel (we don't live in the US) so we didn't go through with it. It was Dr B who arranged it - it might be something else to keep in mind?
 
DustyKat said:
Why won't the doc be on board with it?
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He seems very confident in the UC diagnosis and I think he might find it overkill. He's a very conservative doctor.

Angie - Thankfully it's only about a 90 minute to 2 hour drive for us to Boston and so far we haven't had to stay. I don't think we could afford it. Although in the future it might be nice to make scheduled appointments into little mini sight seeing trips and hit some museums or something. I really enjoy some of the stuff in the food court at Faneuil Hall.

I may drive all the way to save time, but if Izzy ends up going I may use the T because the novelty of being on a "train" might sell the whole trip and keep the peace.

killcolitis - thanks for the insight, I may talk to Dr. B about a fecal transplant for some symptom relief for Sarah.
 
If it's been 5 years since the last images, surely you could convince him it's time for scopes. I'd be very uncomfortable throwing this or that at it without certainty of what you're dealing with.
 
Oh there's no doubt of the need for scopes. I dunno if we'll get a pill cam or MRE but will definitely be talking about both.
 
Wife (Chris) has swapped her nursing shift on the 3rd so that Izzy can stay home. I guess that's best in terms of giving my full attention to Sarah and Dr. B, but I was sort of hoping to use the long car ride as sort of a "training" exercise to get Izzy used to the idea of more significant disruptions in her routine.

Oh well, there will be other, better chances for that. We brought the kids to Mystic for a whole day over the summer and Izzy tolerated that spectacularly.

I think Dr. B considers things like LDN exotic and untested and therefore not good medicine (yet) but I really don't have a great read on him yet as we've just started with him. We were seeing Dr. Leichtner, who was my childhood GI, but he's off on sabbatical and who knows if he's coming back as he's got to be nearing retirement. I suspect he'll think a pill cam isn't warranted either but should I press for it? It's pretty much a roll of the dice whether it'll be any more informative than an MRE, isn't it?
 
From our experience and that of friends whose children have been treated by Dr B he's fairly open to alternative treatments and understands that parents have the same goal as he does, which is to get their child healthy. He has said this to us several times and to a friend whose daughter he diagnosed with the worst case of uc he'd ever seen. She went to two years of treatments (meds and alternative) before having her colon removed, which was his initial recommendation for her. He supported her parents in trying alternatives. That said, I don't know if he would consider rxing LDN (likely not) but then, as I mentioned, he will consider (or did last year) FT so it may be possible. Good luck - I do think he's a very good doc and we've seen quite at this point.
 
killcolitis - haven't seen you around, just hoping that your daughter is doing alright! :ghug:
 
Thanks Tess. Stephen too. She's flaring. I'm "here" I suppose - still scrambling and trying to figure things out...Thanks for asking!
 
When I talked to Dr. B about continuing Sarah on 6MP by adding allopurinol to prevent her liver toxicity issue, he described the protocol as "turning cartwheels to get things to work", so I dunno... :)

We DID end up doing it, and it worked... OK, but not perfect. That's what we're on now.
 
Muppet, our GI is a colleague of Dr B's and she said the same thing. My daughter's liver enzymes where 10 times the top limit on 6mp and she's allergic to imuran but the doc didn't want to add the allupurinol. That's not really an "alternative" treatment though I suppose? It's not worth the risk in the case of UC they believe.
 
Sarah has no allergy to 6MP (although she seemed to develop "chronic" ITP concurrent with starting Imuran) and the allopurinol protocol works very well for her in terms of controlling the "bad" metabolite. I don't really consider it alternative, but Dr. B seemed to think it was on the edge of good medicine. In any case we'll get to talk to the man himself in less than a week.
 
Good luck next week .
DS was on Allopurinol + 6-mp due to liver toxicity
But we could never increase the dose to therapeutic levels without more liver issues ...,
Hope the Gi appt brings about a good plan.
I don't think you can discuss meds until you know what those insides look like.
And not looking just because they believe its uc shouldn't be the reason.
Before DS scope last year the Gi believed it was EoE and or allergic colitis .
Looking every where is what got us the dx .
 
I guess protocols are changing because in 11 years she's never had an upper endoscopy or any radiology of her abdomen that I can remember, but it's definitely on my checklist for next Thursday.

Sarah is therapeutic on 6MP according to her Prometheus tests. One concern with the continued use of those meds is that the local UMass lab that does her Prometheus test is the ONLY local lab covered by our insurance for the test, and they've just been bought by Quest. I'm not sure how or if that will affect us yet. The test is prohibitively expensive without insurance coverage (though I think we still get to pay the negotiated rate, it's around $650).
 
OK so not to belabor the point, but the checklist for Thursday is:

[ ] discuss exclusive EN as an alternative to Pred to get this latest flare under control, maintaining 6MP as the maintenance med

[ ] discuss upper and lower scopes and either an MRE or pillcam or both

[ ] discuss colectomy but only insofar as to get on the same page regarding expectations (ie, if there is small bowel involvement, I'm totally against it, also would like to try other therapies first.)

[ ] discuss Tacrolimus and/or Methotrexate (not a fan of injections as Sarah already has not only compliance issues but a pathological fear of needles)

[ ] discuss LDN and possibly push for this as an addition to 6MP?

[ ] discuss fecal transplant as a possible thing to try as a supplemental therapy to quiet down Sarah's symptoms and let the 6MP do its job
 
Good luck muppet, I hope the appointment goes well and you are able to get some things in motion. C is on methotrexate in pill form once a week, so if injections are an issue you may want to include the fear of needles when discussing MTX with GI.
 
Good luck Muppet!! I hope you come out of the apptmt with a solid plan! :ghug:
 
Good luck! That's a good list I think. I don't think (from experience) he will go for EN but then you can always push more than we did. We decided to try out of pocket since none of the GIs would rx it and it was really expensive. And it did not work.
I hope you come up with a solid plan next week.
 
Just be fore warned - Gi may come back with
Current literature/studies did not show improvement or induced remission for colonic disease ( uc) when using EEN.
 
If need be, the yawkey inn offers free housing on a limited basis. If they have no rooms available, they have a number for another place.
We stayed in a hotel twice...it was crazy expensive (plus her dad and I got two rooms as we are not together).
Wishing it goes well...

http://www.yawkeyfamilyinn.org/
 
my little penguin said:
Just be fore warned - Gi may come back with
Current literature/studies did not show improvement or induced remission for colonic disease ( uc) when using EEN.
Click to expand...

I've only just begun looking up abstracts on this. If the literature doesn't support it then it may be a non-starter, but I've always been a big believer in bowel rest and it worked for me as a kid when my diagnosis was UC (but we know how that turned out.)
 
And of course I don't believe she has UC. I think it's CD. Dr. B isn't impressed by my intuition. ;)
 
my little penguin said:
Just be fore warned - Gi may come back with
Current literature/studies did not show improvement or induced remission for colonic disease ( uc) when using EEN.
Click to expand...

O has CD only in colon (I wonder if it is really UC and months later did say he found inflammation in stomach and rectum but still not sure if that meant - disease or just plain old inflammation) and her doc said there was a good amount of new literature showing that it is effective for colonic disease. I don't know if that meant colonic Crohns only or if that would apply to UC BUT it worked for O and it worked for her friend with UC. I say there is no harm in trying right? Well except for a delay in starting a treatment that would work but I would think you would see some kind of results within two or so weeks and then can evaluate.
 
CIC - I am with you in trying EEN just wanted muppet to be prepared with literature references since the older papers all state the same no improvement .
That will give him the best shot at convincing the doc kwim :wink:
 
Crohnsinct - Do you have any links which show efficacy for colonic disease? I'm asking because my daughter has UC, her doc uses EEN as a first line treatment for small bowel/upper CD. She has refused our many requests to try it for my daughter (it really doesn't work for UC from everything I've read, including the book Beat Crohns which is very well referenced). Like muppet, we wanted to try it on the off chance that she actually does have cd (Dr B said no to us too by the way).
She refused for the reasons stated (does not work in her clinical experience and makes things worse often, no research backing it etc). We've tried several formulas over the years on our own and they all have actually made her worse. I want to try (again) for tube feeding (she is completely against) and would love to show her some compelling research (though she is a top pediatric doc and doesn't appreciate this type of thing we are truly running out of options before surgery). I've looked on pubmed and can't find anything much.
It's great that it worked for your daughter and that her GI was open to it.
 
Is there are certain age or number of years after diagnosis when they become more confident of the UC diagnosis?
 
Muppet,

How is her height and weight for her age?

Any extraintestinal manifestations?

When you say she is starting to flare, what are her exact symptoms?

Have you ever tried any dietary changes with her?

Why is the doctor pushing colectomy? Does he feel there is a danger or is her quality of life low?

Are you willing to try experimental treatments that have a very good safety record?
 
The only thing I was going to add was a comment on MTX injection vs pills. Due to the absorption issues with IBD patients and the time it takes to determine if it is going to be therapeutic, our doc said the injection route was preferred.

I know you may not even be faced with that choice but wanted you to have that info.

Julie
 
Yeah, I agree with MLP and AZMOM, our doc did mention this about the injection too. We opted for the the MTX pill. Also, the side efects of nausea, flu-like ickiness is more prevalent with the pills. C hasn't experienced any reactions like that at all but others on here have. C responded really well to the MTX, he hasn't had any CD symptoms since starting MTX with his Remicade but I haven't read alot of posts about members that have responded as well as he has.
 
David said:
Muppet,

How is her height and weight for her age?
Click to expand...

She's a monster. :) Definitely not underweight or failing to thrive. Like me she tends to gain on Prednisone (with one exception where it failed to reverse a flare which led to our failed Remi trial).

David said:
Any extraintestinal manifestations?
Click to expand...

Too many to count. She has pain in nearly every area of her body, most notably and often her shoulders, hips, and ankles. Her complexion is almost always grey and terrible, but this may be down to being chronically dehydrated (something I wonder if EEN might address, and I'm interested to see how/if her joint pain would be affected by EEN.) The truly intense joint pains, especially the upper body ones, started after the serum reaction to Remicade and have never stopped. One of the symptoms of her reaction was that her shoulders and hips became immobilized by pain. She's never been quite that acute since, but the pain is still there intermittently, but the specialists both GI and Rheumatologist insist that it can't be a lasting effect of the Remicade.

David said:
When you say she is starting to flare, what are her exact symptoms?
Click to expand...

Abdominal pain and cramping (possibly masked by menstruation last week, but still continuing this week) and bleeding. Mucous on/in the stool. Her stool isn't soft or narrow, though. It's an unusual stool quality for her (but I'm relying on her self reporting.)

David said:
Have you ever tried any dietary changes with her?
Click to expand...

Low residue, no dairy, and we stay away from fast food (although we still rely on it maybe twice a month, as things get very hectic around here.)

David said:
Why is the doctor pushing colectomy? Does he feel there is a danger or is her quality of life low?
Click to expand...

The previous practice in Hartford was unimpressed by the quality and stability of her remissions on 6MP and she failed 5-ASA and eventually Remicade. They always told me it would either be Remicade or colectomy for her. 3 years ago we were told to choose one or the other when she was inpatient and not responding to Solumedrol and had received two transfusions due to heavy bleeding.

The new practice hasn't pushed colectomy yet but I think it's in the cards. Dr. B says our 6MP/Allopurinol regimen is "turning carthweels to get things to work" and he doesn't seem impressed with non-approved therapies generally.

David said:
Are you willing to try experimental treatments that have a very good safety record?
Click to expand...

We have broached all sorts of things with both old and new GI like helminthic therapy, fecal transplant, stem cell trial, all with very poor reception on their part. I'm willing but not without the support of an amenable GI to keep an eye on things.
 
Muppet

I couldn't find anything in the recent literature that supported EEN as primary therapy for ulcerative colitis. I actually was unable to find any studies in which it was studied in UC. Seems that it's only used to support nutrition in people with severe UC.

Does your daughter's doctor use blood tests (e.g. Prometheus) to help distinguish UC from Crohn's?
 
David - None that was obvious.

xmdmom - Sarah did have a result on a Prometheus test that showed potential CD indicators. I don't remember the details. Dr. B feels the test is not reliable for discerning the two, or didn't at the time.
 
Our doc isn'r a fan of Promethus testing either.
I am also frustrated by the lack of interest in stem cell transplantation. Izz isn't sick enough to qualify for the trials, nor has she failed all of the meds required, but I believe it is a promising angle. I was concerned about the potential sterilization until I talked to a friend with UC who had trouble conceiving until doing in vitro...he said the lesser of the two evils is infertility (2 children-1 adopted, 1 in vitro) <3
 
I know you are going to discuss imaging with the doc and he says he is confident in his diagnosis of UC but when push comes to shove this isn't his daughter. I don't think it is at all unreasonable given your history and the prospect of Sarah facing a total colectomy that you are reassured that the diagnosis is UC. I would want all bases covered and request both an MRE and pill cam. They each have their own advantages.

Good luck with the consult!

Dusty. xxx
 
killcolitis: I was basicaly going by what our doc said but I do remember frantically looking around for supporting documentation and found something. I want to say it was on here but I would be lying if I said I was sure it was here. I am visiting family but will look for it when I get a chance because I know I am not nucking futs! I DID see it!
 
Literature that I have seen still supports the theory that EEN is not effective for UC but when it comes to CD the consensus has shifted somewhat from it being primarily used for small bowel disease and is now often suggested that it be used regardless of location. As stated in the summary of this article:

http://www.naspghan.org/user-assets/Documents/pdf/PositionPapers/Use_of_Enteral_Nutrition_for_the_Control_of.29[1].pdf

...there is a paragraph that discusses location of disease and conflicting evidence regarding its effect on colonic disease.

Dusty. xxx
 
Tess,
Cimzia is not yet approved for children in the US. They are working on approval from what I understand.
 
Dusty: That looks like the paper I read supporting using EN for colonic disease but like I said before, I am not sure if the colonic involvement and response to EN would be different for a CD patient than a UC patient. All that said, we do have a friend who has a daughter being treated at Yale Children's Hospital and they got their doc to agree to use it around the same time we did and she responded remarkably well. She was on Prednisone and Remicade and since EN just uses Pentasa.
 
Except for the one linked here, I've found nothing to support EEN with UC. Still, I'm going to push the issue as I think it's worth a try before we get into the "surgery is all that's left" area. If nothing else it might help cement her UC diagnosis, right?

I've decided that using the trains will double our travel time, so I'm going to drive straight into Lexington and pray for parking when we get there.
 
So... we're here 45 minutes early. Better than stuck in traffic I guess. I even had time to pick up an EZ Pass transponder.
 

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