C winter update-frustrated

I think with ileal Crohn’s, when active, resected or scarred, the weight loss issue can become quite complex as it has the ability to affect the absorption of carbohydrates and lipids, so the most efficient way for the body to gain weight is hindered. Sometimes it can be this alone that is the pathway to difficulty in gaining weight but it can also be compounded as the malabsorption of fats leads to irritation and diarrhoea.

Also bear in mind that once a carbohydrate and lipid absorption is present it will in turn affect the absorption of the fat soluble vitamins A,D,E and K.

I can say at our end that both of my kids weights are stable but neither really has an ounce to spare. They can eat copious amounts of food and have little to show for it.

Dusty. xxx

Thanks, DustyKat. C is feeling great and doing well with school. We've been packing the calories in but not much improvement. He gains two lbs then loses one, vicious circle type of thing. His sleep schedule is fairly messed up and I wonder if that is playing a role. I have discussed it with the GI before but I think I may push for a sleep study. C is not really on board with this but we are discussing it and I have explained the issues that could result so hopefully he won't balk too much.

My weeks are up and down as well, POTs sucks. Sometimes, I can do almost normal activity and other days I'm so fatigued from my morning shower I have to take a nap. I had a month of really good days and now it seems to come and go. I blacked out after my shower today but didn't completely pass out.

The underlying conditions I'm hoping to get tested for is MCAS, Ehlers Danlos, and another Lyme test. Just not sure when and where I am going for these tests.

Hope everyone is doing well, though I'm not on as much I think of you guys, often!

It is good to hear that C is doing well, albeit with its glitches. I hope you can find answers for your lad Clash.
When it comes to routine in the general sense, I know that Matt in particular seems to me to be at his best and bouncy when he has the very structured routine he sets himself when at university. At these times his appetite is excellent, he has very good energy, his weight is stable and he is in a good place psychologically.

{HUGS} to you Clash I hope you find your own answers and are soon able to get on top of things. It is surely does suck! :voodoo:

Dusty. xxx

Clash see my post link in Caitlyn journey on mcas slides
Next to last post

I looked at them earlier my little penguin. When I read about other people's experience with MCAS and POTs my symptoms don't fit so well. But I do feel a need to see if there is an underlying cause to my POTs, even though I know there is a possibility that it is just a post viral result.

I'm really interested in Lyme and the co infections. About two years ago I had what my GP thought was ehrlichiosis(tick borne illness) I was treated with doxy for a month. the antibody titers came back negative yet the doc said that didn't mean that I didn't have it because it can take some time for the body to show antibodies. Anyway, I wonder about this now but the whole Lyme and its Co infections seems fairly controversial and I really don't know what to believe and what not to believe.

Uggh, Clash I'm just sorry you're dealing with this. I know nothing about MCAS, POTS, etc. so no advice at all... just wishes you start getting many more good days! :ghug:

I appreciate it Tesscorm!

Lyme,
That is interesting. We spend summers in a place with a lot of ticks. Maybe I should have Caitlyn tested.

There is apparently this big discrepancy between what the CDC requires for a Lyme positive and what some docs believe and also other countries. You can google it. I'm just not sure who is right or what is to be believed. I do know the Lyme literate docs feel you should get the western blot and not look at overall pos or neg but what Lyme and co infection strands are pos. So confusing. Most labs don't do in depth testing, Igenix is supposed to have the most in depth.

Are you still around Dan (D Bergy)??

Dan’s wife had Lyme disease and he is a wealth of knowledge on the subject Clash. Hoping he sees this and chimes in.

Dusty. xxx

Well we just left the nutritionist appt. I think it went well. She wants C to up his calories per day since he doesnt eat as well when on the go with friends on the weekend. She gave us samples of different formulas and told us to mull over ng tube. C actually brought it up and she was all excited about it and the fact we knew its advantages. So he can go with the calorie increase thing and think about the ng and if he decides on it then we just call and she'll set it all up.

So, another bit of news. My Mom is also on Remi and MTX but for RA. She has been on it a year longer than C with Remi and two years with MTX. Six months ago she had a sore on her leg that wouldn't heal. She has been going to the derm and he's kept an eye on it. He finally decided to biopsy two weeks ago. He said it being located in her shin he had wanted to see if they could just get it healed because it takes longer in that area or something like that. I don't know why it never crossed my mind, her being on Remi it could be something more serious or why her derm didn't know. Anyway, they called yesterday and it is squamous cell cancer. I told her to call her RA doc right away since she has a Remi coming up. The RA doc is supposed to be calling the derm to discuss it. How many times have I read the risk statement discussing the risk of non melanoma cancers in particular SCC and it never cross my mind! Sheesh.

Hope all is well with everyone!

UGH! Every correspondence I get from the makes of Remicade they include their mouse type 4 page documents of warning etc. At first it scared me...isn't once enough? Now I just toss them. Shows how complacent we can get eh?

I hope they caught this quick enough and that it doesn't cause to many difficulties. Weird that her derm didn't think of it also especially given Remicade is a drug derms use often for psoriasis. He should be familiar with the warnings.

CIC I thought the same thing about the derm, he should know and I'm sure she had to tell him all her meds. Now I doubt she had mentioned it to the RA doc because she didn't know the connection until I told her. She pays no attention to side effects/risk papers.

The PA is the one that called with the results and she said it was shallow and there may be some chemo involved but the derm would go over it all at the appt.

We get the papers each time as well.

C ate way over the extra cals the nutritionist recommended yesterday! Ha. We have the samples chilling in the fridge of the different formulas. The nutritionist and the GIs had been to a conference with the CHOP IBD docs. The nutritionist gave me a printout of the protocol for other countries and the protocol CHOP is using with initial and maintenance formulas.

Interestingly, the CHOP docs at the conference said they had done studies assuming that the elemental and more broken down formulas would produce better results but in their studies and others there has been no difference for remission induction or maintenance supplement between the different types of formulas.

One of the formulas the nutritionist sent home with us was one I had not heard of. She said they had a few on the peptide 1.5(the one I've seen MLP mention) but with her teenage boy patients she has been using a more dense calorie formula(or something to that effect) that is 2.0 cals(I don't have the notes in front of me so I my explanation may be a little off) and the samples she gave were Twocal HN. Anyone heard of that one?

Not heard of that formula, hope C can put up with one of them so you don't have to worry about the tube. So sorry to hear about your mom.

I'm also wondering about that, Sascot. I do remember a post on here about how expensive the formulas are if the ins. doesn't cover them. The nutritionist said she would help any way she could, in her experience if they are taken orally the insurance would not cover them.

A lot of the info was a little confusing to me. Like the difference between the protocol and the induction and maintenance plans. The CHOP one said something about 80%-90% 5 days a week for maintenance. I'm not sure how that relates to coverage and what not if you use a tube.

I'm having a potsie morning so I'm stuck in the bed right now but when I get can some mobility going I will go down and get the typed up paper and post it.

Sorry about your mom... you have enough concerns as it is!! I hope it's easily treated. :ghug:

Confused/curious about something re your insurance... it seems the insurance will cover the formula if a tube is used, so... if it's the same formula, can't you just get the tube and not use it? :lol: I'm sure I'm missing something... :ybatty:

Interesting about the different formulas... S is on Boost and, while I thought that was better than nothing, I also thought it probably wasn't doing as much good as the elemental. Reassuring to know that may not be the case.

Don't be too put off by the tube, until S went away (and had roommates, etc.), he definitely preferred the convenience of using the tube. Not saying he didn't grumble at having to put it in, etc. but, we're talking 10 seconds! - takes longer to brush his teeth (I hope!)

I think I've brainwashed S into believing the shakes are the end all of all IBD treatments! :lol: He had his wisdom teeth removed on Tuesday and has recovered quite well (very little swelling and very tolerable level of pain). Since then, for the most part, he's eaten only broth with rice and chicken and about 3-4 shakes per day. Last night he told me he believes he's recovered so well because he's used the shakes as his main nutrition so has given his body nutrients and allowed the gums to heal without the irritation of food. Right or wrong, if it keeps him on with the shakes, I'm good. :lol:

As far as coverage most plans do not cover formula per say...
But cover infusion supplies which formula is when received from a durable medical equipment place.
It also depends on the dx code etc....
DS started formula prior to dx due to FTT .
The more dense formula can sometimes be harder on the gut , more expensive etc...
But you need to drink less volume.
DS just drinks peptamen jr.

You can add Hershey syrup
Maple syrup
Or fresh fruit to help with taste
Make a smoothie out of them
Pumpkin
Banana
Fruit of choice
Formula

Good luck

Went rounds with the insurance company on the shakes and finally got them covered after deductible as he was receiving over 90% of calories/nutrition from them. I had the whole NG tube thing and it wasn't until the 3rd time calling and talking to a different person each time that the last one got it and it was the same as an NG tube he was just taking it orally, although we were at the point and his GI's office was on board of prescribing an NG tube and just not using it.
Haven't heard of that one, Jack found the 1.5 very thick. He said it was like drinking pudding, I wonder what the consistency of a 2.0 would be?
I agree with Tess whatever keeps them on the shakes is a good thing

Tesscorm, C thinks he would prefer the tube to the drinks. He is going to try drinking these samples but he has a real issue with the texture. Nothing we have done has been able to stop his gag reflex on this. I think now it is in his head and he can't get over it. The formulas are chilling now so we will see. I think if the nutritionist had said, off the bat, that he was going to be on ng tube, he would've been on board as he is the one that brought up EN and NG tube. C also mentioned a Mom I knew whose son did the NG overnight and stayed of meds for a year or more, haha your S! He does listen to my stories! The nutritionist wanted to know all about your experience and where you were from and how long that had been the first line of defense in your area, what type of formula and if he was still on maintenance!

I understand that "end all treatment of EN mentality", the CHOP conference apparently had the same effect on the docs and nutritionist at C's GI. She was all excited that the advantages of no meds and no side effects was such great thing. Now, I didn't go in depth with her about it because every time I started to I would get the eye roll from C but I am assuming she meant no meds as far as steroids for induction of remission, although she never clarified that. Even C mentioned, on the way home, if she thought a continuous maintenance would stave off meds.

C's biggest problem seems to be that when he is away with friends on the weekend he is not taking in enough calories. She said his week day diet was up to par going over his journal but that he was lacking on the weekend from being on the go. She told him at his age it was up to him to ensure he was taking control of his health. I think this did empower him.

When S did the supplemental through NG, he did it only 5 nights per week (so, for the most part, not on Friday or Saturday night) so that would work with C's weekend plans!

FYI, Stephen's formula was elemental and was called Tolerex (I don't think I've ever seen anyone else mention it here??), it's made by Nestle. And, we were told by nutritionist to condense it... so, I think it was 150 ml water per package (package instructions were 200 or 250 ml of water per pkg). Once it was all mixed, it was 1000 ml (1500 calories).

I gave her the name of Stephen's formula but I couldn't remember the condensing measurements you used. She was really interested. She was saying about the same about the condensed formula she gave C. I have it written out by her I think, or maybe that was just the different percentages with different formulas.

I want to post the paper info she gave me and see what the committee says as we all know how much the committee info should be valued and the nutritionist may learn something as well! Ha! As soon as I can get moving I will move that way and get the paper. I no longer need the wine to take me away, the POTs does a fabulous job of giving me the tipsy, dizzy, feeling!! Unfortunately, it doesn't produce Fireman on poles or any of our go to entertainment! Ha!

My daughter tried Peptamen 1.5 and it was very thick and completely disgusting. It was even worse than Peptamen jr (we both tried both!). Even flavoring it didn't help. We were told that if you're really looking to add calories an NG tube is best because the formulas with more calories are hard to drink.
It's really great that your son is on board with the NG tube. I think I'll use this story to try and convince my daughter (Tesscorm, I've already told her all about Stephen!)

Clash - S was started on EEN at Hospital for Sick Children (Toronto), I remember his IBD dietitien saying she often had calls from other dietitiens re EEN as it wasn't commonly used and they weren't well educated on the process. S's dietitien left the hospital just before S left so I don't know have a name of the new dietitien. Also, the head of the IBD dept was involved in studies, reports, etc. on EEN, C's dietitien may find some info related to her name - Dr. Anne Griffiths - this is one article I found.

http://journals.lww.com/jpgn/Fullte...trition__The_Neglected_Primary_Therapy.3.aspx

Maya142 - if S's experience with EEN/EN can encourage any child to give it a shot, I think that's great!

Here is some of the info that the nutritionist is giving patients from the conference they attended with/at whatever CHOP.

What are the benefits of using enteral nutrition in Crohn's Disease?
Enteral nutrition as been shown to induce remission, restore growth(weight and height) and spare corticosteroid use in children with Crohn's Disease. Therapeutic efficacy is 50%-75% in children.

Compared to Steroids
remission at 8 weeks
Enteral Diet = 50-79%
Steroids = 67-100%

Maintenance of remission at 0.3-2.5 yr follow-up
Enteral Diet = 80%
Steroids = 44%

Mucosal healing
Enteral Diet = 74%
Steroids = 33%

European Protocol
1. Induction: Exclusive EN x 4-12 weeks
2. Maintenance: (either)
a. Repeat 4 week cycle of exclusive enteral nutrition every 3-4 months
b. Medical therapy

CHOP Protocol
1. Induction: 80-90% of patient's caloric needs met using semi-elemental formula + normal diet as tolerated during the day. Continue x 8-12 weeks.
2. Maintenance: Enteral feeds 5 days\week

The rest of the info was info she wrote down for C to consider when deciding if he wanted to do EN. It was just how many cans of the 1.0, 1.5 or 2.0 he would need to meet 80% and 90%

Thanks Tesscorm, I am supposed to stay in email contact with the nutritionist about C's journal and if he is reaching what she has recommended so I will give her the info you posted as well.

So since the appt C has been meeting calorie goal through food and the shakes haven't come into play at all. Today after lunch, he came upstairs to tell me the pasta and chicken was good and for good measure he downed one of the two cal HN shakes. I would've thought these would have been the nastier tasting of the samples he had but he said other than being really thick it wasn't bad. After supper he drank one of the others we were given. I'm really surprised, he said the second one had the texture he doeant like and made him a little queasy but he got through it.

Can you dilute the 'thick' shake a bit with milk or water? I know it'll add volume but maybe it'll be easier to drink?? And then, maybe, he can have some as his drink with a meal??? I also buy S the Boost fruit beverages - he says they're good and taste like normal juice so he often just has one as his drink with lunch or dinner. I think they're a bit lower in calories and proteins compared to the shakes but, they're better for him than just a glass of regular juice.

The thick one isn't that much maybe four ounces? So no big deal to just down one of them if he hasn't met his calorie goal. I mentioned mixing it but he didn't want to be bothered. He has said he is going to follow the calorie goal and if there is no progress in weight gain he wants to make a decision about the ng tube within month. He has GI appt then Remi right after next week. The nutritionist said she was going to pop in to check his weight and give her opinion on where he is at and what she feels the next steps should be. I guess I need to be checking into our ins policy and what they will and will not cover as far as EN.

I am really trying to allow him to find his way and make his decisions about this. I know we are getting short on time of him being at home and having me in control. I would really like for him to "see" the cause and effect of his decisions preferably for the good but even it is for the bad then I guess there is a lesson in that as well.

Oops sorry C corrected me, the thick one is 8 ounces.

Clash PM me if you want Violet's Facebook, he can friend her and maybe a pretty teen girl who uses a tube can convince him it's doable.
Also tell him about Starbright World, site for chronically ill teens (V's on there too).

LOL imaboveitall. A pretty teen girl can get most teen boys to do just about anything.

He's on board with the NG tube says he'd rather do that than have to drink the shakes. At the appt he'd have rather done ng than add the calories through food but since his gi appt was only two weeks away and I needed to look into ins coverage we decided on the added calories per day along with sampling the different formulas to determine what hr wants to go forward with. He said he wasn't interested in sampling because he wouldn't taste them through the tube that is why it surprised me when he drank them.

I will tell him about starbright and mention V, I'll pm you if he isn't to shy and interested.

So it has been over a year since C has woke me up to say he has a stomach ache, but he just did. He asked for a levsin. I didn't press him on what kind of ache, does it feel crohnsy, yada yada yada but instead told him to wake me again if he needed me(like I'll be sleeping).

It's probably nothing, there is a bug going around yet it is insane how those words can strike fear in your heart.

Things have not improved. The pain is in his lrq and extends to the left a bit to under his belly button. He feels like it is CD related. No bm today and he can't remember if he went yesterday but knows it was no longer than Tues. since last bm and bms have been a little loose but not concerning to him. He explains the pain as if someone was squeezing something inside and that it is fairly consistently painful but intensity waxes and wanes. The levsin did nothing.

I have put a call into GI and left a message with pretty much what I stated above. Waiting for a call back.

I'm not sure what to offer him as I don't know what we are dealing with. I got the heating pads going and he ate a bit of cereal this morning but said his appetite is wonky. Any tips on relief?

C is still in pain. The GI has moved his Remicade up to Monday along with GI visit. I'm just trying to keep him comfortable until then if dehydration starts or heavy bleeding then call the in call GI and probably head up to CHOA.

He did have one bowel movement while I was back and forth on the phone with Gi, it was fairly normal bm. Since then he has gone 4 more times. The first 3 of those were weird, they were soft, formed and flat like ribbons. The final was mostly mucus and liquid.

I guess I knew this might be coming since we have had the weight problem but still pissed he is in pain and I can't do anything for him. I just want this weekend to fly by

Uggh, so sorry Clash!! I have no suggestions for the pain, other than if he does get hungry, keep the meals small... if it's a shake, I'd just give him a little at a time. I hope the pain lessens between now and Monday. :ghug: :ghug:

Oh Clash. :ghug:

Since you are already using heat packs the only other things I can offer up is a warm bath and some diversionary things like music and gentle massage, not necessarily on the affected area but his back and feet and legs.

Thinking of you. :heart:

Dusty. xxx

Thanks Dusty and tesscorm, he tried the bath and diversionary tactics. I will have to try the massage.

He is angry that he is back here again and I fear a fair bit afraid. He hasn't said so to me but has talked to his sis through text. He did tell me that he wished they would admit him and run tests because he wants them to see it while it is going on. He thinks it is bad. His appetite is still there but he thinks he may start with shakes tomorrow and see if it helps with pain. He had one tonight to see if it was another he could stomach so we could pick up some variety. I've explained that EEN may very well help with the pain but the decision was his.

He's trying to sleep now and I really just want to throw things and fling cuss words at the wind, possibly some primal screams for good measure. Rationally, I know the wax and wane of this illness is to be expected but damn the rough times just seem to knock me off balance.

I told him last night before the pain that his episcleritis looked as if it were flaring he blew it off and laughed saying I was looking for trouble. Today, he told me I called it but he thought no joint pain, no mouth ulcers no problems. Ughh.. hope everyone has a good night! Thanks for letting me vent!

Oh Clash…my heart goes out to you!…

I feel your pain and despair. :ghug:

:hang:

Dusty. xxx

I'm so sorry Clash... I can only imagine how frustrating it is for you and C to feel that you are back to this again!! :ghug: :ghug: Maybe over the weekend, a quasi-EEN diet may help... ie shakes mainly but with some broth w/noodles, scrambled eggs, pasta with butter, yoghurts/puddings, jello, etc. (can't remember if dairy is a problem for him??). Papaya is supposed to be anti-inflammatory, perhaps some 'cool' anti-inflammatory foods (off hand, not sure what else to suggest) might help 'cool down' any inflammation???

I feel so sorry that he's feeling frustrated and frightened, it's so unfair when these kids do all they're told and keep finding themselves slipping back! I wish I had some advice that could help him now.

This is just FYI (wouldn't be a quick fix today) but I recently posted some info re crohns relapses and fish oil supplements - copied it below. I've given Stephen krill oil supplements since he was diagnosed. He takes 1000 mg per day. This is the brand S has always used (although I just did buy a new brand... only because it was convenient at the moment.)

http://www.nowfoods.com/Neptune-Krill-Oil-60-softgels.htm

FYI, if this is something you want to try... this brand comes in 500mg or 1000 mg capsules. Initially S found that taking 1000mg at once caused looser stools (although this was also closely following his diagnosis..), so he went to one 500mg capsule first, once a day, then increased to twice a day (morning and night) - he handled this better.


Effect of an Enteric-Coated Fish-Oil Preparation on Relapses in Crohn's Disease

Background
Patients with Crohn's disease may have periods of remission, interrupted by relapses. Because fish oil has antiinflammatory actions, it could reduce the frequency of relapses, but it is often poorly tolerated because of its unpleasant taste and gastrointestinal side effects.

Methods
We performed a one-year, double-blind, placebo-controlled study to investigate the effects of a new fish-oil preparation in the maintenance of remission in 78 patients with Crohn's disease who had a high risk of relapse. The patients received either nine fish-oil capsules containing a total of 2.7 g of n-3 fatty acids or nine placebo capsules daily. A special coating protected the capsules against gastric acidity for at least 30 minutes.

Results
Among the 39 patients in the fish-oil group, 11 (28 percent) had relapses, 4 dropped out because of diarrhea, and 1 withdrew for other reasons. In contrast, among the 39 patients in the placebo group, 27 (69 percent) had relapses, 1 dropped out because of diarrhea, and 1 withdrew for other reasons (difference in relapse rate, 41 percentage points; 95 percent confidence interval, 21 to 61; P<0.001). After one year, 23 patients (59 percent) in the fish-oil group remained in remission, as compared with 10 (26 percent) in the placebo group (P = 0.003). Logistic-regression analysis indicated that only fish oil and not sex, age, previous surgery, duration of disease, or smoking status affected the likelihood of relapse (odds ratio for the placebo group as compared with the fish-oil group, 4.2; 95 percent confidence interval, 1.6 to 10.7).

Conclusions
In patients with Crohn's disease in remission, a novel enteric-coated fish-oil preparation is effective in reducing the rate of relapse.

http://www.nejm.org/doi/full/10.1056/NEJM199606133342401


Still hoping his pain subsides over the weekend! :ghug:

Sorry no more advice, just loads of hugs. The shakes really helped Jack's pain at the beginning of his last flare as long as he did not drink them too fast.

Poor boy. Hope the weekend goes by quickly for you both. Good luck for Monday.

He hasn't complained as much today but he hasn't gotten out of bed and is still mostly sleeping. He said the pain was rough overnight so I'm hoping it is just from that. Although, U remember all to well the all day/all night times spent in bed fatigued and asleep. Thanks for the support.

jmrogers4, C says the same, he has to drink them slowly.

Has he been prone to strictures in the past?

I hope the liquid diet helps. Poor kid

So sorry to hear he's in pain and not feeling well. I hope things turn back around soon

Mehita, no he hasn't had strictures. I've been wondering about it though and I am going to mention it to the GI.
He says it is tender and sore in the area of his TI. His joints are really starting to bother him now, too.

He got the sweetest text from his proxy(teacher that handles his school work when he has to do full indepent study). I was so appreciative of her words and it really lifted his spirits.

His bms are mostly D now. He hasn't been as often today. I've been pushing liquids and he has been drinking the shakes.

I really hope the infusion turns this around but I am also concerned that it isn't working like it used to.

I really hope he feels better soon. Sending hugs and support your way.

C's MTX dose was Thursday. I'm hoping for a little bit of rebound from it. The pain has lessened some in his abdomen, still tender to the touch and he complains it is sore. He's concerned that there has been no bm today, he said he felt the urge this morning but it passed before reaching the bathroom and now he feels as if he can't go. The joint pain is still bad, knees, ankles and lower back. He is drinking shakes. He keeps thinking he has a fever but it hasn't shown up on the thermometer.

Also, I felt sick, feverish last few days but no fever. Hubby then caught it from me with fever. Today was my daughter's 21st birthday and she wanted us to drive up to university and take her out for lunch...and we did still sick...so if yall here of some viral outbreak in Georgia...you'll know. Fortunately, no fevers and we chose to pick up full spread and picnic. J enjoyed it although her motives weren't completely pure she was after her b-day money. C was disappointed not to go but my Mom sat with him.

We are headed to the GI in just a bit. The pain is still there, joints are bad. He is bloated and and this will be the 3rd day of no bm. I tried to get him to take miralax but he was having none of it. He is scared it will make the pain worse. I'm hoping the GI can explain the prep vs a normal dose in a way that he will accept. He swears even the daily dose has made him cramp.

He has been taking fluid and also shakes. But since yesterday his urine has been cloudy, any ideas here as to what that means or if it is concerning? He was a bit dizzy standing yesterday.

We've packed overnight bags just in case. Wish us luck, all goes well and they can get him feeling better.

So, so sorry Clash!!! Sending lots of wishes that it can be cleared up quickly and that he won't need to be admitted.

Will be thinking of you... :ghug:

He has been adamant that he should be admitted for the last few days. He is convinced he needs testing. I really think that it has hit him hard that this is chronic since he has felt so good for so long then got knocked for a loop. I think right now the hospital represents a place of safety and that is part of his wanting to be there. I dont think he meets any criteria to be admitted and I've told him to just keep an open mind with the GI.

He just went back for his Remi and they are going to walk him down the hall to the GI appt in about 45 minutes.

I hope Remi makes him feel a lot better. Sending hugs.

How are things going?

Hi Clash,
Drew is home today and this weekend it seemed the Remicade stopped working it seems to be this way when we are ready for our next treatment. Then he gets the Remicade and he eats like a horse and acts great, but it wears off. We are due for Remicade on Wed but I called the Dr. because Drew is feeling so sluggish and not barley eating. I'm wondering what this means? He went off of Methotrexate a couple months ago but it must have done something because this is the worst he has been in a long time. How is your son doing now?

Cloudy urine can be dehydration or infection or sometimes crystals, or proteins. Dizziness could be dehydration.

Really sorry to hear he's feeling ill. Sending healing thoughts his way.

Oh no I just read I will pray that he feels better really soon ):

Tesscorm, we are at the hospital. The GI decided he wanted a CT, he was initially going to do an MRE but wanted to see some things outside the bowel and in the lower pelvic area so C is drinking the contrast right now. Depending on the results, we will either be headed home or admitted.

The remicade went well and the GI feels that it will probably quickly improve his status but said that was only half the problem since he is not gaining weight or height appropriately. I guess we will have a follow-up to determine what the next steps should be.

blessedby3miracles, C has had this issue before with symptoms starting to return right before the remicade. C also came off MTX for a short time this summer but symptoms returned so we added it back at a lower dose.

The GI said that C tends to always be sicker than labs would indicate, except FC test results. I really don't know what the future holds for the remicade and C but we will see.

I hope the CT is able to give his GI a better idea of what is going on. Whether you stay or not, I hope C begins to feel better now that he's had his infusion. :ghug: (I hope you're feeling okay as well... not easy for you to be staying either! :ghug

Thanks, Tesscorm. Honestly, we were with the GI for over an hour and it is a complete blur. C did alot of the talking because he was determined to get the GI to understand how bad he felt. The GI didn't need convincing as it is apparent in his appearance and demeanor.

He just finished the CT. Now we are waiting for the Radiologist to read it and write report then the tech said she would print the report and call C's GI and go over it with him.

Hope the ct sheds some light on how to move forward for him.

Oh but I do want to add that although C was telling how bad he felt when it came time to press on the tummy, the GI told him not to be the martyr. Although C has been guarding that area with his arm for days and will let me see the pain from pressing when the GI did so he tensed a bit but it was like he was holding back. What is up with that? Teenage boys.

It's not just teenage boys, Grace is the same way with her sore joints.:yfaint:

I hope the ct scan helps ease minds or shows the problem.
Please remember to take care of yourself also.

Hugs

M does that too with her joints, in fact her rheumatologist always teases her and says she's like a teenage boy!
Hope they figure out what to do for C soon!

We just left the hoapital. The GI read the report and called in to say he didn't feel we needed to be admitted but he wants to go over the images himself and will be calling us tomorrow. So now for the long drive home. Thanks everyone for the support.

GI nurse just called, the doc wanted me to know the scan showed a long segment of narrowing in the distal ileum. He had bloodwork done on C yesterday and he wants to see the results but e also wants to take some time go through all of C's testing through the last two years and come up with a plan. He is in another office today but will be calling tomorrow or the next day. He has mentioned surgery twice. I'm so crushed.

I suppose he didn't mention if the narrowing is caused by scarring or inflammation???

I hope he is able to determine that it is, in fact, inflammation and a different threatment method is worth trying before surgery... :ghug:

Tesscorm, the GI nurse said it was inflammation. I know that the doc just had her call to give a bit of an update since we were at the hospital so late and only got the decision of no need to admit without discussion of results. I'm hoping for a lot more info in the next few days.

C is supposed to start miralax today since no bm. C has extreme trepidation about this so might be a rough day. He is still sleeping now.

It is so weird even at the hospital you could tell C was feeling better, his demeanor radiated that. Both Hubs and I picked up on it, just more movement and alertness. This was only hours after Remicade. One of the parents at Remi was saying the same thing, different child only hours after treatment. It has always been this way with C, although usually it is a small downward trend to a huge up tick, this time the full flare may change that.

Clash, if it helps, you could tell him my daughter was also really afraid of starting miralax since she used it for her colonoscopy prep, but with a single dose she doesn't have diarrhea, just loose stools. No stomach cramping or anything.

I really hope they are able to come up with something to help him. Wouldn't prednisone help if it is inflammation?

DS uses it daily without cramping provided we don't give too much.
A steady rate produces more results that a large amount at once .
Just expect it will take time ( days ).
If its inflammation would another drug help to keep it down ???
Good luck with this

my little penguin, before the scan the GI was discussing what ifs. He said that he felt the Remicade yesterday would give Chase some symptom improvement but it was obvious it wasn't working at this stage because C keeps having blips(even if there was a long time between symptom flares) and there wasn't normal weight gain. Admittedly, I blanked out at this point because it just threw me. I know he was saying things about the other biologics and it seemed to not be positive but when I finally zoned back in he was saying "or the sister drug vedolzumab"(sp?).

I know he is concerned about the length of time C has been vascillating between no symptoms and symptoms. I said something about clinical remission and he said C wasn't even there that some docs may say he was in lab remission but he doesn't subscribe to that because he just feels C's labs aren't an indicator of how sick he is. That is one of the reasons he wanted to compare scan to blood results to identify any trends we may be missing.

Maya142, pred did not work for C, he has only been on it once while waiting from dx by adult GI to appt with ped GI.(6-8weeks in all) there was no improvement in symptoms but all the horrible side effects.

He is still sleeping, he has done the miralax before for constipation and swears it made him cramp but since it was during a miniflare I think it was the CD not the lax. Now, I just have to convince him.

I hope his GI can give you some solid suggestions soon! I don't often see much discussion of the use of flagyl but it really helped Stephen!! When S was diagnosed, he was inpatient. Upon admission, they were already strongly suspecting crohns and, I think, even while still running tests were already treating for a crohns flare. They started him on flagyl through IV right away. Between May 16 to 23, his CRP went from 136 to 3.6 and his ESR went from 63 to 43 (even though I know ESR is supposed to take a long time to move?!?!?). I think Flagyl played a big part in pushing S towards remission because it was at this point that he started EEN and then he did not continue with any flagyl once he was discharged on May 23.

IDK if this is helpful at all with C but, I just don't see flagyl used in this way very often???

A has had several rounds of Flagyl as well, and not for c-diff. Her labs don't show inflammation (although fecal calp does) so I can't really gauge it's effectiveness numerically. However, it does help to either stop her diarrhea or at least slow it down (3 times a day instead of 6....). It has always been at least somewhat beneficial for A.

Maybe something worth trying before surgery?

I will bring up flagyl to the doc. Does anyone know how it compares with other antibiotics? Specifically, those like bactrim? He has a reaction of severe D to bactrim and the docs said it would be wise to avoid that "family" or something like that. So are those similar or anything?

Hope the GI comes up with a good plan. Not sure about the Flagyl antibiotic "family". The only thing our GI said about Flagyl was that it was anti-inflammatory as well. It's never caused any side effects for My son.

Grace did flagyl when dx with c diff and it helped EVERYTHING for awhile. Of course we were still hoping it was the c diff causing all of her problems but interesting now that y'all bring it up.

Sorry, I don't know either about the type of antibiotic.

Thanks for the input guys! I'll discuss it with the GI!

The committee has spoken! (I think we need some sort of 'stamp of approval' smiley...)



Good luck!! Hope C continues to see improvement now that he's had his infusion! :ghug:

Yay committee agreement! He slept most of the day today. He says that his joints are hurting. He drank the miralax then 5 minutes later had a bm so the miralax was probably for nothing. He is trying to do some work now.

I worry about moving to another med. If Remicade is out then I'm concerned we may move to another biologic and it not work then face surgery leaving only one biologic afterward that is approved now. The GI said it was really good that C had no colon involvement and that made his candidacy for surgery more optimistic. I know surgery is seen as a last resort but I do wonder if we could start with a clean slate for the next med if surgery was employed. Souch to consider and so hard to know what to do.

my two cents - so going to hide
but Flaygl may help with the inflammation but can't be used long term and it "seems "
that remi was not enough to keep the inflammation at bay so you would still need another maintenance med.
AS far as leaving remi for another biologic and running out of options.
I have run that circle too many times.
But if remi is not getting it done then you are taking all the risk of remi but none of the benefits.
The drug options are what they are at this point and what may work is never really known for anyone.
so you hope and pray the drugs work and stay that way forever or until something better gets approved.
At least that is how I sleep at night.
Granted C is older so in theory more options open up at 18 since docs are less willing to give un approved drugs to little ones.

never an easy decision.
hope the gi has a good plan and can talk you through it.

my little penguin, I agree Remicade isnt getting it done and I can deal with moving on but if the options are surgery then another biologic or try biologic and if it fails then surgery or yet another biologic then I wonder if surgery then a biologic might be the better option rather than running through all the big guns to no avail.

I regularly worry about my daughters running out of biologics! When we were at CHOP for a second opinion last year, the dr pointed us to a powerpoint that they showed on the IBD Education day.
I'm attaching the link here, it shows all the drugs in the pipeline! Hopefully, it'll help you sleep easier at night whatever you choose, I know it helped me!
http://www.chop.edu/export/download...er/IBD_Day_2013_Whats_Hot_in_IBD_Research.pdf

Ok that is just awesome! Thank you so much Maya142!

Clash said:

I will bring up flagyl to the doc. Does anyone know how it compares with other antibiotics? Specifically, those like bactrim? He has a reaction of severe D to bactrim and the docs said it would be wise to avoid that "family" or something like that. So are those similar or anything?

Click to expand...

A close family member was looking at surgery for severe crohns and a flare that lasted the best part of a year. Flagyl and Cipro were reluctantly offered with the line "it won't help your crohns, but may help some symptoms". Well, that doc needs to go back to medical school. Recent scopes show remarkable and unexpected improvement. We are thrilled and hope it continues. You can actually be on antibiotics for a long time, and "pulse" on and off. I believe one poster on this forum has used the Flagyl/Cipro combo for over 8 years to maintain remission.

Wishing your boy a rapid recovery.

Grrr...we are in a holding pattern with regular updates to GI. If there is not a turn around then we will be talking with the surgeon. C has improved, stomach pain is gone, joint pain still lingers. We should he getting EN started next week to help out. There will be a fecal calprotectin in four weeks. Appetite is good, bms back to normal, still has screwed up sleep schedule and more sleep than normal I feel hut since he is having trouble getting to sleep it throws everything off. Still not sure if this is CD related, or patter disturbance or what. GI feels it is due to the CD.

Thanks everyone forvthe support I just feel we are always in a panic/wait state and the waiting is so hard.I feel even if symptoms are relieved that the disease may be silently progressing and that thought drives me insane!

It seems the GI feels strongly about surgery. I'm wondering if anyone of our parents kids have had TI area removed? what was their experience thanks.

No surgery here, but I definitely understand the agony of the "wait and see game". I always feel on edge because A is never well for long. I hope you see improvements soon and surgery isn't necessary!!

I think Dusty's kids had surgery on their TI area??

Did the GI say no to Flagyl or adding another med? Do you think upping methotrexate might help?
My daughter did much better on a higher dose, 25mg.
Waiting is the worst! Glad the stomach pain is better.

If its surgery can you get a second opinion?
Maybe at cchmc chop etc??
Since changing meds can be undone ( even remicade since you have up to 12-18 weeks from last infusion but surgery can't.
Big hugs

I was in the grocery when they called and didn't have my notebook of questions with me, so I didn't think about the flagyl.

The decision to try another med is in my hands, the GI wants us to get the surgeon's opinion concerning location, length blah blah blah. I'm not sure which way I am leaning. C is leaning toward surgery if he is told he has to leave Remicade. He wants to know if he has surgery and the area is removed could he then not have to leave Remicade. I told him that he could discuss that with the doctor. He is also hoping that this addition of EN will quell the inflammation enough to give the Remi a boost.

Thank you all so much for all the input, it really helps me stabilize and not stay in constant wheels turning, worry mode.

Clash, been there with Violet, and dual therapy plus IV steroid got her well.
I know pred didn't help him in the past, but IV steroids are quite another matter, it knocked V's symptoms out within hours last May when she was so sick she vomited in PUBLIC (right after that, was hospitalized).

You know from my posts how I fought dual meds but it worked for V! Now after 9mos on dual (Remicade and Imuran, but just d/c Remicade) she is in such a good remission, both by labs (like your boy, hers are never really bad other than fecal lactoferrin and calprotectin), presentation, and pillcam. Like your fella, her involvement is largely small bowel.

Formula feeds will be great for him. No downside to those.

Oh and Flagyl and Bactrim are different classes of antibiotics.
V did 3mos Flagyl with no help of symptoms.

Thanks imaboveitall!

I know C's GI typically avoids steroids. I'm assuming if it was dire and he was hospitalized then steroids might be employed. His last hospitalization it was not but his testing was not showing dire and joint pain was his major complaint.

He is on dual therapy, MTX and Remicade. We had some compliancy issues last year over the MTX and since his FC level(only reliable non invasive marker) was 48, we dropped MTX. Some symptoms started to return so we started the MTX at a lower dose.

I'm wondering about upping the dose of MTX again. He had good results with this and no side effects. I may discuss this with the GI.

C seems married to the Remi, which is odd since I know at times he is frustrated with the ride to the infusion center/GI is long. He asked soany valid questions at the appt and I was so impressed with his interest and input. Especially, since I didn't handle it as well and kept zoning out with each revelation!

C had him explain the reasoning behind surgery, certain tests and carrying on as is. I told my Hubs I wish I hadn't been mind racing because C seems way more at peace due to the convo whereas I'm stressing still!

Things are still improving.

I am so sorry I am late to this Clash. :ghug:

You have been given wonderful advice and there is not much I can add except to draw your attention to two things when it comes to C…

1. His age of onset.
2. The location of his disease.

C was not out the realm of what is considered ‘normal’ when it comes to being diagnosed with Crohns and having Distal (Regional) Ileitis, it is confined to his TI isn’t it?, then being the region in which Crohn’s was first recognised and described there is the advantage that this type of Crohn’s has been well researched over the years both medically and surgically.

As Tess has correctly pointed out both of my kids have Ileal Crohn’s and that is where their surgery was located.
I agree with the viewpoint that in most cases surgery should be considered a last resort but not all and one of those is Ileal Crohn’s. I am in no way suggesting that C should have surgery but rather just wanting to make the point that surgery, in some cases, offers the best outcome. I don’t just mean in overt cases like my kids but also the more the subtle cases, particularly in children and young adults, where there is never quite a resolution from diagnosis to remission but instead a simmering of symptoms that come and go, that feeling of getting there but never quite making it, a growth and/or weight target that is just out of reach, you all know the drill.

I dont know if you have seen this study Clash but it is well worth a read:

Decision-making in ileocecal Crohn’s disease management: surgery versus pharmacotherapy

I can only speak of our experience that is coming off the back of having no choice when it came to treatment, so vastly different to you. :ghug:
Surgery comes with its own set of legacies but Sarah had her surgery in July 2006 and has been symptom free since as has Matt who had surgery in April 2011.

Just to touch on the antibiotics. As as been said Bactrim and Flagyl/Cipro are different classes of antibiotic. I don’t know what the normal regimen is in the US but I have found here that when presenting to hospital with a Crohn’s flare then IV Flagyl, and Steroids (Hydrocortisone), is the stock standard. Matt was also on oral Flagyl for 6 months, three months pre op and three months post op. Flagyl does have both antibiotic and anti-inflammatory properties.

Thinking of you both. :heart:

Dusty. xxx

Thanks so much Dusty. C has been improving this week but still a lot of sleep. His appetite and bms have been normal.

As CD tends to have the worst timing, he was signed up to take his SAT this morning. It was the first morning he has been up before 11am but he pulled it together and went for testing at 7:45am and miraculously has been up since then.

We go next Thursday for the class on inserting the ng tube and formula feeds, hopefully. I mean it is scheduled but we haven't heard from ins.

His sister left out tonight headed to board a cruise with her friends for spring break. She has been so attentive to C since being home and he has been eating it up.

I'm going to hear what the GI and surgeon have to say. At dx it was determined that C's cd was located at the TI. The GI nurse said the MRI showed a long segment of the distal ileum was inflamed.? I'm going to get the report when we go next week for the ng session. Dusty, I have read that article when you posted it before and it is part of the reason I do want to weigh the options.

I know its mot the answer for everyone, my husband's niece had CD located at her TI and had surgery due to not responding to meds. The cd was back at that location and various others, has had 4 surgeries and now only has an inch or so of colon left with bag. Her CD is refractory and she is now steroid dependent. I know it can go well or bad and there is a lot to ponder and analyze before making the decision but I am so grateful for all the opinions and experience given by all of you. You can't imagine how much it helps!

Btw, C's episcleritis showed back up tonight so that is not a great sign.

Ugh, it sucks that this disease is so complex and individual. I am so sorry to hear about your niece and that C’s eye issues are starting up again. :ghug:

I do wonder if there are subgroups based on location and disease type. I know the disease is individual but there seems no rhyme or reason as to why one person responds in one way and another, like your niece, becomes refractory and steroid dependent when for all intents and purposes at the outset symptoms and presentation could be attributed to anyone of a thousand people with Crohn’s.

In our case I can’t help but draw the conclusion that Sarah and Matt’s genetic makeup plays a very large role in the development of their Crohn’s. Same location, same severity, same outcome, same response. Does their genetic make up therefore also dictate their response to treatment, both surgically and pharmacologically?? {shrug}

I so hope C continues the upward trend to getting better and the eye issue is just a glitch. Fingers, toes and everything else crossed!

Dusty. xxx

Dusty, I've often wondered the same.

I think genetics play a role for my husband's nieces as well. They aren't blood related to C but two of the three sisters have CD and both have severe disease yet started in different locations, I believe.

The one I mentioned above has had several surgeries with bad outcomes and the other refuses surgery for this reason. She is now on Tysabri but not in remission yet.

It hard not to look at their outcomes and not worry but then I think what if surgery is an option that will clean the slate for the meds to work more effectively.

There’s always more thoughts and questions than answers ay? {sigh}

How about we send a couple of members here to med school, they can specialise in gastro/IBD and then find a cure! Problem solved! :ytongue:

Re learning how to insert the tube... if C still has questions after his instructions at the hospital, I posted a link to a youtube video of a girl inserting her tube. It's on my post on the Kids on EN thread. She does a great job of explaining how it's done - she does make it seem to be a long process and, in reality, the whole thing took S about 30 seconds to prepare items and insert tube but, she really does explain every step quite well.

Hope he's continuing to improve!

Thanks Tesscorm, I think I showed him that vid when you posted it. I'm really hoping ins will cover this because if not we may have to come up with another plan...ughh.

Last night, on our scale he was at 111. I'm all confused now at remembering how that correlates with the GI scale. I think GI scale weighs two pounds heavier so 113 and he was 116 at last weeks weigh in on GI scale.

I don't know if it's any consolation, but we have no regrets with the small bowel resection DS had. In a way, it really did give him a clean slate and he felt wonderful for several months... until he flared again, but that's just the nature of the disease. Our mistake was stopping meds after surgery. Had we started Remicade right away, everything probably would have gone much better this last year.

For us though it was pretty clear cut that we were working with scar tissue and both the gastro team and surgical team were pretty confident that surgery was the best option at the time.