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04-13-2015, 01:51 PM   #121
Spooky1
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Oh dear, perhaps as Clash stated that levels are variable then maybe it isn't too bad. How is his health and is he feeling ill at all?
04-13-2015, 02:59 PM   #122
Clash
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Yes, that is an upward trend but again fc test aren't generally used in such proximity since it can take a while for the test to produce declining number in relation to the slow healing in the bowel.

It might be wise though to call the GI about upping the Imuran or placing him on a higher dose of entocort.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
04-13-2015, 03:18 PM   #123
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lubnaexperts - is he eating anything else at all? Or are you doing exclusive EN?

If it's not food, then maybe the stress is playing a factor here?

It should be possible in most straightforward cases to induce remission on the EEN alone.
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Advocate of the dietary treatment of Crohn's, as detailed in The essential guide to controlling Crohn's Disease, Colitis and Other IBDs by Professor John Hunter

Other supplements as needed: Adcal D3, Sytron (liquid iron, much more gentle on the stomach)
04-13-2015, 09:45 PM   #124
lubnaexperts
 
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Dear All, many thanks , his health is fine nothing noticed thanks to god , but he is so so so stressed and afraid from exams and very stressed to miss his grade and not going to match his university offer.
ncman, yes he is not eating at all since 8 weeks and it was coming down gradually then start to raise slightly 77,100,117 as the exams become so near
I will see the doctor today and am sure he will extend the modulen more and dont know my son reaction to that as he was thinking its only 8 weeks and dreaming to remove entocort 3 mg as he is now 8 months in entocort
04-14-2015, 01:14 PM   #125
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we went to his doctor today, and after discussion and he knows that the exams are on 7th may he said let start food introduction in first of may and we will keep the 3 mg ento cort till exams end on 16th of june as a kind of protection and in this way he will complete 10 weeks and few days in exclusive modulen , the doctor wish to complete 12 weeks but my son refuse as he became tired, and the doctor saif about the calprotectin results its a variations and he said we will not do the test till the exams finished as he dont want him to upset during the exam period because if it raised because of food introduction he will be upset during the exams and he said exams now are the priority and nothing will happen in 45 days
04-14-2015, 01:27 PM   #126
Spooky1
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That's fairly good news, Lubna, Its good to take the pressure off of him for a while. Best of luck in his exams.
04-14-2015, 01:31 PM   #127
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thank you spooky1 for the support and care
06-08-2015, 09:49 AM   #128
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hi . hope all are fine , am here back again
would like to ask am still giving my son the lofflex diet since 1st of may he was fine and we noticed loose stool with tinned tune and mango , we did 5 days back CRP and ESR both are normal , I hope that this reflect that fecal calprotectin is ok as well , as we didnot do it as the doctor not advise us to do till the exam end, before yesterday he had the graduation dinner and he insist to eat with the students and I tried my best to choose the safest for him , but he got diarrhea today am disappointed and he decided to take pure modulen for 2 days for a hope to get to solid stool again.
I wish to know is there any correlation between CRP, ESR and calprotectin values as am so worried?
warm hugs
06-08-2015, 11:33 AM   #129
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There is not always a correlation between CRP, ESR and Fecal Calprotectin tests. My son always has normal inflammatory markers with blood work but his fecal calprotectin shows his inflammation.

When we did a baseline of lab work, colonoscopy, MRE and Fecal calprotectin at the same time the scopes, MRE and Fecal calprotectin showed his inflammation but his CRP and ESR did not.

Also if just one meal is causing issues then he is probably not near remission. Is he on any other meds for his CD? It may take more than a couple days of formula to get him back symptom free. And if continues that any time he eats outside of his diet he experiences symptoms then I'd get regular fc tests(every 3 months),if fc is a good indicator for him, to ensure you are truly achieving remission and not just staving off symptoms.
06-08-2015, 12:55 PM   #130
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Dear Clash,
Thanks for sharing with me all the info you have, actually my son is on imuran 100 mg and entocort 3mg and pentasa 2 gm, and while he is on lofflex he is fine without symptoms and this is the first dinner as buffet he experience diarrhea after 2 days , first time outside he eat steamed white fish with steamed vegetables and nothing happened, am feeling so worried from the test on 16th of june as he spent 11 weeks on full modulen and till now he is taking 2000 calories from modulen and 2 meals of lofflex list, I hope he will reach the remission otherwise he will be disappointed as he dont want to take pred tab or humira inj
06-08-2015, 01:40 PM   #131
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Ahhh so this was way outside his lowflex diet? How long has he been on entocort and Imuran? It can take Imuran a few months, 3-4, to reach therapeutic levels.

I wouldn't get worried yet. A drastic change from what he has been eating could 've caused his change in bm and not connected to CD. For instance, I mainly eat vegetables, chicken and some fruit and if I goto a buffet where there is a lot of grease involved it will cause me to have D and I don't have CD.

Also, has blood work been a good indicator for him in the past? If so, then there is no reason to think that has changed.

If the D persists then letting the GI know may be a good idea, he may move up the fc or get more labs.
06-08-2015, 07:42 PM   #132
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Dear Clash,
He is taking imuran 50 mg since end of october and raised too 100 mg in january end of 2015 and ento cort since sept.2014.
his blood work before has high esr and CRP as the calprotectin up and once down both before also come down and as I told you we are not allowed to do FC now as his doctor wanted him to finish his exam and we did blood work as regular check of imuran and we added ESR and CRP and iron and ferritin to have an idea which might give us some idea of whats going on after he started his lofflex diet
06-08-2015, 08:45 PM   #133
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If his blood work is usually a good indicator then it sounds as if things were moving in the right direction at least before the graduation dinner. Hopefully, he is headed toward solid remission. Maybe just track symptoms and if the loose stools continue or other symptoms show up let the GI know.

I hope things continue to improve.
06-09-2015, 10:41 AM   #134
Spooky1
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Hi,
it's sad he responds so badly after being perhaps symptom free for a while. It might help to remember that there are some who have Crohn's who just don't have diarrhoea but do have inflammation. Likewise there are some who have had intestine removed and have daily diarrhoea but no inflammation. It's hard due to his age. I was like that as a pre teen and have been on the loo ever since. If only we had a cure!!! Veg for me would be so hard to breakdown and digest.

Tinned tuna often isn't too bad, but fish can be 'oily' and cause a few issues, and mango is also probably fibrous with fructose. I can't do fructose for some reason, it really gives me grief. perhaps try and stick with the lofflex and as Clash has said, perhaps the Crohn's isn't in remission at all yet. as I said above, people can be diarrhoea free and still have inflammation, even if they aren't in pain.

Secretly I am pleased he joined in an occasion. I always try to with weddings, over xmas, and other special occasions. However, I still choose the less difficult to digest, so bland really. Otherwise I seem to pay the price too. Your son has a memorable occasion to be proud of, he should secretly be pleased too.
06-09-2015, 12:03 PM   #135
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THANK YOU SPOOKY1 , I really appreciate your nice wording and feeling.
He is in pure modulen since 3 days now as he is in the middle of A level exams and very hard exams coming in the next 6 days , then we will do fecal calprotectin and see as last reading on 30 of april day before we started lowflex was 117 , lofflex is good for him but he start to be bored as no bread , egg , milk , all wheat products and dont know if we can start reintroduction of the food , I hope but all will depend in his test results by next week
06-09-2015, 02:05 PM   #136
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Don't be discouraged if the FC result doesn't drop substantially since it can sometimes take 3-4 months for FC to start reflecting what is going on as far as a downward trend. It's important to look at the trend over time when the FC tests are relatively close together.

Some of the diets can be restrictive in the induction phase but offer more when you move through the other phases. Maybe your son could keep a journal, rating symptom improvement, energy levels and such as he progresses with the diets so he will be able to see on paper what improvement has been accomplished. This may give him the motivation to stick to it.

Good luck on all his upcoming tests! I hope he does great!
06-09-2015, 02:32 PM   #137
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I always love egg salad sandwiches. I cannot cope with the egg, milk and wheat, nor salads lol. Once in a blue moon I would have one. In fact, it's probably less than the occurrence of a blue moon.

Hoping he gets some great grades for his 'A's and that he can at least focus well.
06-18-2015, 11:12 AM   #138
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hi all , how are u clash and spooky 1
my son did the fecal calprotectin yesterday done and it was 115 we were so happy and the doctor want us to start remove entocort so for 10 days now he will take it every other day then stop it and see and during that we will start food introduction , and my son want to start introducing bread , any suggestion which best kind of bread to start with ? warm thanks for your support to me always
06-19-2015, 04:31 AM   #139
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Wow, good news at last. I think basically white bread is considered easier, though personally I find gluten and dairy difficult, however others have no issues.

Hope all exams are over now and the stress is less.
06-20-2015, 11:07 AM   #140
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thank you for your wishes , I read today in prof john hunter that reintroduction of food should be in specific order and bread is still so far , and we will start shortly with egg
06-21-2015, 06:04 PM   #141
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good luck with that, Lub.
06-27-2015, 05:15 AM   #142
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hi all,
today calprotectin of my son is 371 so upset , this is after 5 days of removing entocort 3mg , the doctor said we will not return entocort as he is using it for 9 months and its enough for his health and growth
he is thinking to increase imuran again from 100 to 150 mg daily and introduce food slowly and see, any advise
06-28-2015, 07:21 AM   #143
Spooky1
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I know how you feel, it's so disheartening that this happens. I have to confess there seems to be little to assist with full control of disease and its recovery or remission. For some it's easier as they respond well or perhaps don't have it so often or severely. I know what it's like as I never get it into remission, but then I also have other auto-immune issues to deal with too. they can make life difficult to cope with. Does your son have other auto-immunes at all that could be putting in an unidentified appearance?
08-23-2015, 12:50 PM   #144
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Am here again after summer vacation with my son , he did great in his exams and got an offer in the university of sheffield to study engineering.we did 80 % of reintroduction of food and remaining few to test and there was no any reaction to any and he is stable with no any symptoms, but today we did calprotectin and we found it 637 am really so sad and want to cry , he is travelling soon and his doctor told me give me couple of days to think what is the best thing to do before he travel to uk and he may do colonoscopy again , and i want to add that he ESR and CRP is totally normal , any help from you my freinds
08-23-2015, 12:58 PM   #145
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Im sorry he got another higher fc result. This disease can break our hearts!

There are no food that affect my son. He is asymptomatic yet he still has active disease. His CRP and ESR are always normal but his calprotectin levels always tell the tale.

You may consider switching to other meds like biologic or adding them to existing meds.

Also I'm going to tag Mr. chicken as she has a kiddo on a special diet that has helped her son reach remission along with his meds.

I know EEN probably isn't a great option with him traveling.
08-23-2015, 01:03 PM   #146
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thank u clash for fast reply.
but my son hates injection and refuse to take biologic , so dont know what the doctor will decide, did your son tried biologic? is there any better result with this grp of medicines?
08-23-2015, 01:12 PM   #147
Clash
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My son was started on Remicade at diagnosis which is an iv infusion. It was the med that took all his symptoms at the time of diagnosis away ie severe fatigue, fever, joint pain, mouth ulcers etc.

The biologic he is on now is Humira which is a self injection he gives himself every 14 days. He doesn't care for the injection compared to the remicade but honestly it's only a concern for the moment of injection time. He doesn't think about it beyond that.

Since he is headed to college humira will be ano easier option too since with remicade he had to go every 6 weeks for 3 plus hours for the infusion. Still during high school he used that time to do homework and stuff.
08-23-2015, 01:18 PM   #148
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is humira reduced the calprotectin ? did he reach remission ? as also am afraid from side effects of biologic !! add to that what after that if we started biologic so early , am really so confused from this strange disease who spoiled our life
08-23-2015, 02:25 PM   #149
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He's already on Imuran or 6mp isn't he? The latest studies have shown that the serious risks(like the fatal HSCTL)listed for biologics are the same with the meds imuran(azathioprine), 6mp or methotrexate.

For most kiddos it takes the more aggressive meds because for some reason the disease is more progressive and aggresive.

I don't have other meds beyond adding methotrexate to the biologic to compare to since C started with a biologic right after diagnosis.

C's disease had been hard to quell with even the biologics but I don't think his is typical most kids start biologics and reach remission quickly.

C also has to have the biologic for JSpA which is an arthropathy that can occur with CD.

I'll tag some other moms whose kids are on a biologic. Maya142, crohnsinct Tesscorm those are a few. Maybe they'll be along shortly with their experiences.
08-23-2015, 02:29 PM   #150
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warm thanks for all this info
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