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Crohn's Disease Forum » General IBD Discussion » My daughter feels "good" so why isn't she


02-01-2016, 08:09 PM   #1
Danasmom
 
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My daughter feels "good" so why isn't she

New to this. My 16 year old daughter was diagnosed with Crohn's a day after her 14th birthday two and a half years ago. She was immediately put on remicade which worked wonders. She was also put on growth hormone. She gained weight and grew and did great until Remicade stopped working. Until we knew she was developing antibodies to Remicade she was only on prednisone and lost all which she gained while on Remicade. Eventually put on Humira 40mg every 2 weeks (shot absolutely excruciating- any one else with that pain?). After colonoscopy 2 day ago we were expecting remission because she was feeling great. The results were depressing and it looks like surgery is the next step. How is that possible? She feels great. She looks great. Except her insides are a mess. Does this make sense? How do I find the absolute best surgeon?
02-01-2016, 08:16 PM   #2
my little penguin
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Welcome
We have a wonderful parents group

http://www.crohnsforum.com/forumdisplay.php?f=49

A lot of parents there have had kids with surgery

Unfortunately crohns can silently cause damage

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02-01-2016, 08:27 PM   #3
Maya142
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Hi and welcome!

There have been some parents on here whose kids needed surgery even though they didn't feel terrible.

Both my daughters have been on Humira. It really does hurt a lot! We iced a LOT before giving the shot and did it while watching TV so they were distracted. We also took the shot out of the fridge an hour before giving it, so it had a chance to warm up (hurts less that way). They also got a treat - cake, cookies, chocolate - after the shot, that helped!

Some parents add Lidocaine to the shot to make it less painful. Other parents also say that the syringe is less painful (vs. the pen) because you can control the rate of the injection.

Check out the parents section - there is a lot of great info there. There are a few parents from Florida, so perhaps they will have some info on surgeons. Does her GI have one that is recommended?

Good luck!
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02-01-2016, 08:46 PM   #4
crohnsinct
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Hi there, welcome but sorry you have a need to be here.

UGH! I hate to hear that a drug that was working just stopped!

I also have a 16 year old daughter with Crohn's. Her disease was silent also until the first flare which two weeks after it started landed her in ICU.

How long has she been on Humira? It could take a while for a new med to work. Have you tried Exclusive Enteral Nutrition to try to get her to remission and then hand the drug a healed bowel to take over?

We had to do that with my older daughter. She went straight to Remicade but 4 months in it still wasn't working and she was steroid dependent. We did EEN to get her to remission and after that Remicade was able to take over.

Of course, this only works for active disease and inflammation. No amount of EEN or medicine can fix scar tissue.

no experience with Humira...good luck with the surgery decision.
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02-01-2016, 08:49 PM   #5
Clash
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My son is 19 and was dxed at 15. He was extremely symptomatic with severe disease activity. He went on remicade straight away.

After the first remicade we saw a 180 turn around. Symptoms abated, no fatigue, no pain, mouth ulcers etc.

The area that was affected was his TI and even though his symptoms were no longer present we had to adjust dose, add mtx, then up dose to high dose remicade.

At 17, in August of 2014, even though he had no outward symptoms except he remained thin, the original area was still severe and required surgery.

He was moved to humira, in March 2015, because after surgery he built up antibodies to remicade. 3 months after surgery at humira bi weekly we had another scope. Visually he looked pristine but biopsy showed active inflammation, still he had no symptoms. We felt 3 months may not be long enough with humira so waited another 6 and added entocort to his regimen.

In December 2015, he had another scope and to our dismay he had visually active disease from small bowel all the way to rectum. He was still asymptomatic, no pain, no fatigue, nothing. His only sign is that he is anemic. Hes an active full time college freshman with a job where he works around 30 hours a week. We've upped his humira to weekly and have an appt with the GI to see what our next step may be if this doesn't work.

He found the humira shots extremely painful. We just switched from the pen injector to pre-filled syringe. He has said it was much better pain wise than the injector pen.
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Dx May 2014: JSpA
8/2014 ileocecectomy
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PAST MEDS: remicade, oral mtx, humira
02-02-2016, 11:14 AM   #6
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Thanks for your responses. My daughter has been on Humira for almost a year but we are going to go from every 2 weeks to every one. Well, we will try. It hurts so much, even with using ice, taking out of fridge and lidocaine, I know she will have an extremely hard time doing it every week. Thought about doing the syringe but it takes longer to administer so that seems difficult too. Clash, thanks for letting me know your story. I couldn't understand how my daughter could be getting worse while acting perfectly healthy. She hasn't had any surgeries yet. It would be a resection and one of my biggest concerns is if she needs a bag for even a little while. I worry about her physical health but also her emotional one. Any suggestions?
02-02-2016, 11:54 AM   #7
Clash
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My son's surgery was an ileocecectomy, so part of the small bowel including the ileocecal valve and the also the cecum of the large bowel. A stoma or bag was not required, before surgery both the GI and surgeon felt one wouldn't be required but of course they don't full know the extent of any situation until they get in there.

My son balked initially at the weekly humira shots as well. I was really worried about compliancy so we did opt to try the syringes. It is true that the user is in control of the rate of administration of the shot but C found this helpful as slowing the rate at which the medicine goes in lessened the pain somewhat. Also with the syringe you have the option of adding liquid lidocaine to the shot which is probably more effective than that of topical lidocaine.

I would suggest, whether surgery becomes warrented or not finding a good therapist that works with chronically I'll patients and even specializes in working with those affected by IBD. They can even help with the dread of the humira shot and give them techniques to incorporate to help.
02-02-2016, 12:37 PM   #8
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Welcome my son has that silent disease as well. We are currently on remicade and have been for the last 2 years, dropping to every 7 weeks right now as he is also losing weight and his numbers are creeping up (at least for him). It's taken us many years, he was diagnosed at 10 to figure out his normal in regards to labs, for example, an ESR of 5 he's fantastic but at 8-9 things are going down hill and MRE has shown massive inflammation normal ranges would be 15 and below. Makes it hard to judge what's going on?
We just had surgery mentioned as well at last appointment, his GI's reasoning is sometimes there is a section that no amount of medicine seems to affect and he is worried my son has such a spot. Many find relief after surgery and the medicines are able to control any remaining inflammation.
For us the only clue in the past has been lack of growth and weight otherwise any other symptoms have been mild if at all. We've lost the growth indicator as he has grown from 5'1" to 5'11" on remicade so would likely only get a couple of more inches if any. So looks like you will have to monitor weight closely as do I to have any idea of when to start pushing.
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02-02-2016, 12:45 PM   #9
my little penguin
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Ds is 12 and has been on humira for 3 years almost in April
He switched to weekly in August and also is on weekly Mtx ( is she on Mtx it can help boost things )
He uses the syringe but adds lidocaine directly to the humira syringe ( not the skin ) this lowers the ph and lessens the burn .
Additionally he saw a psychologist who was from the hospital who helped him figure out coping techniques
He used to scream now he doesnt even say ouch

The brain feels less pain if it's actively thinking
So I ask complex questions that he has to think and answer
Pain is worse if you are crying and worked up
The turn painnofvthe shot is only 10 seconds
The dread when not dealt with is much longer and makes the pain worse

Adding lidocaine to the inside of the syringe doesn't increase the length of the shot since in Ds case it's only 0.2 ml


Hugs
02-02-2016, 12:48 PM   #10
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My D refuses to speak to anyone. She says she is fine. She is very active and gained weight and outwardly thriving. Blood tests are fabulous and show no inflammation. That's why results of colonoscopy were so upsetting and confusing. GI Doc seems confused too which worries me. I want him to have all the answers. Really glad I finally decided to reach out to this forum. Although I would rather put my head in the sand I know I can't and I can learn from all of you.
02-02-2016, 01:25 PM   #11
Clash
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C has been gaining weight as well and even at his worst before we decided on surgery his blood work including inflammatory markers were all normal.

It is a shock when outwardly they show no signs yet inwardly the disease is silently progressing. It can also presents a problem in how they approach their disease since they have no signals that tell them that damage is occurring. It has made med compliance an often discussed issue. Not that my son hasn't been compliant but he sometimes sees no reason to be diligent about healthy habits such as enough rest, eating well and even moderating the normal college social indulgences that come with being a college freshman.

It has taken a discussion with his GI to inform him of the serious repercussions that may result in the progression of his disease and beyond meds what he can do personally to stay as healthy as possible.

The bottom line is regardless of his lack of symptoms and compliancy with meds his disease has been progressing. I remind him that often this disease can be insidiously silent and whether he is experiencing symptoms or not this disease can permanently damage his insides which can lead to life threatening obstructions and life altering surgeries. The goal must always be to strive to achieve a state in which he is keeping his bowel as healthy as possible that includes being physically, emotionally and mentally healthy to combat the effects of his illness. All that being said, he's 19 years old and with that comes a certain amount of independence and stubbornness that can thwart all advice.
02-02-2016, 03:26 PM   #12
VeganOstomy
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How we feel isn't really a good indication of what's going on with our illness, which is why we have scopes, blood tests and other diagnostics.

This is especially true when we are on pain killers and other medication, since they often mask how we are truly doing.

When I was put on prednisone, I felt "good" (ignoring the horrible side effects I had) - I was able to eat, leave the house, etc. But my insides were not happy at all, and I had my colon removed later that year.

Hopefully your daughter's doctor will have another plan for her. But even if surgery is the next step, it may be something that brings her tremendous benefits.
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02-02-2016, 07:32 PM   #13
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My little penguin speaks to me with the screaming. My D screams so loud during the Humira shot that our neighbors probably think we are killing her. Knowing that surgery is in the imminent future (hopefully not until summer) I have been scheduling tours of colleges during Spring Break. Clash, your son is in college. Seems busy and I seriously hope Happy. I hope the same for my daughter. Teenagers have it tough enough without the added challenges of Crohn's. Thanks for the support.
02-02-2016, 07:43 PM   #14
Maya142
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My daughter was very against seeing a psychologist but her GI insisted. Eventually, she agreed and has been seeing a psychologist who deals with kids with chronic illnesses for the last couple of years. It has really made a huge difference! If you can't convince her to go, I'd ask her GI to try - sometimes kids listen when it's not Mom talking!

Humira is not fun. We have found distraction (asking questions) worked well for us too. My older daughter is at college and has her roommate ask her questions or quiz her while she is doing her shot. She also tries to keep her leg relaxed - she says it helps when her muscles aren't tense. We also got her buzzy: https://buzzyhelps.com

It works better for IVs and shots where the needle is the most painful part, but she says it helps a little and still uses it.

Good luck!
02-03-2016, 07:59 AM   #15
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Another kid here who is symptomatically "ok". She gets through the weekly Humira by counting during the shot, but for a teen maybe a backwards alphabet? Another vote for mental distraction.
Leaving you with the experienced parents of teens...just wanted to add my support and hopes that things improve quickly so that surgery is avoided.
02-03-2016, 08:46 AM   #16
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Buzzy? Never heard of that. But I will definitely give it a try. Our GI has already told us he needs to speak to my D alone. You are so right that kids listen to others more than to Mom and Dad. Sounds like you all think surgery should be last resort. In one way I would agree but I fear what's going on in there and getting to the point where it gets so bad that I waited too long. You know? I need that crystal ball.
03-03-2016, 04:19 PM   #17
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@Danasmom I am 23 years old and have been dealing with Crohn's in my large intestine and colon for 12 years now. When I was first diagnosed, I was already at a severe stage of disease but for the first 3 years, we resisted trying any steroids and instead tried holistic approaches and eventually 6mp and Pentasa.

Flash forward to today and I have failed every biologic (Remicade-developed antibodies; Humira-never responded; Cimzia-never responded; Stelara; never responded), been on numerous antibiotics, Uceris, an off-label drug, and now I am on Entyvio. In January of 2015, however, I was forced to have a diversion which left me with a loop ileostomy. Needless to say as a college student, i was none too happy to have to reach that point. I was told by my doctor that we could consider a reversal in 4 months. Well it has been almost 14 months and there is no end in sight. I have had so many complications with the ileostomy that it has almost been not worth it (persistent granulomas, yeast infection, going to the bathroom 10-20 times a day, chronic infections that have led to sepsis, and pyoderma gangrenosum that has not healed in 10 months).

I know this is largely negative, but there are two real reasons that I wanted to write to you. 1. I am currently in the position that your daughter is in. Since September after my sepsis dx, I have actually begun to feel amazing, almost better than I ever have. The doctors think that it's because of the diversion, but how is that possible? 9 months of being miserable and the diversion just decided to start working? No. In my opinion it had to be the Entyvio because I had just reached peak efficacy. Even though I have had two other hospitalizations since because of the infections, I believed my crohn's was under control because I wasn't having any symptoms. Two weeks ago I was hospitalized again for the infection, but this time, they did an EUA and took biopsies to see what was going on. I was expecting good news and to hear I was in remission because all signs, including my CRP levels were telling us that was the case. Alas, I was told that my bowel looked "horrible" and "awful" and that the only next step would be to take out my colon. Um, no. Nothing makes sense!! And to top it all off, the pathologist's report said that my tissue biopsies showed no active inflammation?!?! So I very much empathize with you and your daughter's situation because it is so frustrating and confusing, I just want to scream!

At the moment, i am refusing to let them take my colon and am instead, continuing on the Entyvio and am trying a diet similar to the Autoimmune Protocol (AIP) to try to heal myself. However, the second reason why I wanted to write was because I also want to tell you that even though I've had countless complications, practically speaking, having a bag is not the end of the world that we all think it is. There are nasty aspects and it is incredibly frustrating and can be rather isolating, but eventually, you get used to it. And it becomes your normal. It is not ideal, but I don't want you to think that it is a failure of any sort or wholly negative because it's not. But if there is any way you can safely hold off on doing surgery, I would.

Completely unsolicited advice, I know, but you're not alone! Crohn's is just a pain in everyone's behind! I'm so sorry your daughter is suffering with Crohn's and really hope that you all are able to find an answer! All the best to you guys!
03-05-2016, 05:27 PM   #18
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Sorry to just step into this Danasmom, I'm so sorry to hear all you're going through. I'm afraid us kids don't always tell our parents everything about what's going on with us with this challenge. Even in my 30's my parents probably don't know half of what I go through. I'm not sure if it's cause we don't want to worry you or why.

Does your daughter have anyone her age to talk to? That could help her some if she has someone she can trust. There's a group of teens on here who talk in a support group. Or, her doctor's office may know of some support groups as well. It never hurts to ask. In the meantime, hang in there. We're here for ya.
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03-05-2016, 05:33 PM   #19
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Sorry to just step into this Danasmom, I'm so sorry to hear all you're going through. I'm afraid us kids don't always tell our parents everything about what's going on with us with this challenge. Even in my 30's my parents probably don't know half of what I go through. I'm not sure if it's cause we don't want to worry you or why.

Does your daughter have anyone her age to talk to? That could help her some if she has someone she can trust. There's a group of teens on here who talk in a support group. Or, her doctor's office may know of some support groups as well. It never hurts to ask. In the meantime, hang in there. We're here for ya.
As was said we are here for you.
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