Graduating to "severe"

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Gi-jo-mom

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My daughter 19 has had 2 Remicadee infusions. We just had an appointment with her GI. The doctor feels like the Remicadee is not working as quickly as she would like so she put S on azathioprone to supplement the Remicadee. She also said that she wants her to eat an anti-inflammatory diet, sugar and gluten-free.( which is a bit overwhelming) Her next step will be a CT scan to check for strictures. So now S is considered to be in the "severe" verses the " moderate/severe" category of Crohn's. What's my question? I guess i don't really have one. I'm just struggling. We found out that S has had Crohn's for at least 2 years undetected. How could I not know something was going on for so long? Now she is suffering.
 
I'm sorry. Of course you are shocked, angry, and confused.

My son is on a diet similar to this, scd. Yes it is restrictive. We were very unsure about trying it and what it would involve, particularly bc he wa picky, and loved carbs and sweets. We decided to try it for two weeks. There are many tips on how to make it work for her lifestyle here and in other websites. A year and a half later, he is still on it. He travels, eats in restaurants, etc. Yes it is restrictive and requires us both to plan ahead, research, and spend more time in kitchen. But once he started to feel better he was hooked.

I hope her new treatment regime gets her into a fast remission. Best to you both.
 
Sending hugs - always frustrating and scary when something isn't working. I hope the new combination works like magic!

Fwiw, my daughter has been on a combination of drugs for years. She was on Remicade + Imuran last year. Worked great for her IBD, not so great for her arthritis. She was nervous about starting Imuran since she had already tried Methotrexate and had awful side effects with it. Well, besides some nausea, which went away in a couple weeks, she had no side effects from Imuran.

Good luck!!
 
Gi-jo-mom said:
We found out that S has had Crohn's for at least 2 years undetected. How could I not know something was going on for so long? Now she is suffering.
Click to expand...

Sadly lots of Crohn's goes undx for long periods of time. My daughter has been dx 4 years at the end of month. We treated low iron and anemia for 4 years prior to dx.:ybatty::ybatty:

Once you get a treatment plan that works, your daughter will get her life back.

My daughter is now 20 years old. Living her life to the fullness. Currently living in the UK.
 
Hope the extra med helps a lot. The gluten and sugar free is difficult but doable. I did this myself and found the sugar free was actually the harder of the two, it is easy to find nice gluten free food but it is surprising just how many things have sugar included from crisps to sauces to crackers. Lots of label reading but you get used to it
 
Wow! Your daughter's story mirror's my O's perfectly.

She was also sick for two years before we realized it. Don't beat yourself up. Our second time around with my younger daughter I was smarter and raised the Crohn's question many times and even the docs didn't pay attention. It isn't a usual thing they look for so I doubt even if you were on it the dcs would have pursued Crohn's.

My daughter was also a slow responder to Remicade. 4 months in and on infusions every 5 weeks she still couldn't wean off prednisone. She did a course of EEN to induce remission and get off steroids and it worked. We later added mtx. Adding an immunomodulator has an added benefit of extending the useful life of anti tnf's by keeping antibodies at bay. As a matter of fact many docs prescribe them from the start of anti tnf therapy.

We also instituted an anti inflammatory diet and it worked wonders for my daughter. She didn't go gluten free but my younger one is totally grain free. It is hard at first but you will figure it out.

Have they checked her Remi levels to make sure she is getting the right dose for her? Imuran takes a while to build to therapeutic levels, is there a plan to handle the inflammation until Remicade and Imuran can do the trick? Besides the diet? Steroids? EEN?
 
PS don't get hung up on the mild/moderate/severe designations. They don't really mean a lot. My younger one was mild at dx and a year later has still has not hit remission. My older one was severe as could be at dx and now you would never know she had Crohn's.
 
Gi-jo-mom said:
How could I not know something was going on for so long? Now she is suffering.
Click to expand...

I know others here have already said this, but really try not to beat yourself up over this. My daughter had symptoms for 5 years before she was diagnosed. Crohn's can look like so many different (more common) things when symptoms are mild.

My daughter also took a while to respond to Remicade, but she's doing great now, one year after starting it. I hope that your daughter starts to feel better soon!
 
Not much to add as I'm pretty new to the whole "kid with Crohn's" business. What I have learned is that blaming yourself is not a productive response. . . You did the best you could. It's not like Crohn's is the first thing either you or the doctor would think of.

Jennifer
 
I agree with the others, don't beat yourself up there are kids that take years to be diagnose.
My daughter is also severe. Hoping the new med combo works quickly!
 
My son was also diagnosed this summer after 2 years of symptoms he did not share with his father or I (primarily diarrhea - later bloody diarrhea). He is 19 years old and was put into the moderate / severe because of a stricture. He was initially placed on Pentasa (along with pro biotics and ferrous sulfate) and then several weeks later given Azathioprine while starting Remicade. His GI said due to his age they would do an aggressive "top down treatment" and it has worked incredibly well (so far). We were told that the Pentasa is basically useless (but expensive!) and that Azathioprine takes almost six months to "kick in." He will most likely start weaning from Pentasa. He is a college student and misses classes due to the 8 week infusions and GI appointments but he signed up at the school's disability office and they have to "legally" let him go without any penalties. (Also re take tests, take tests that are close to a bathroom etc). I agree that it is important to not get hung up on mild / moderate / severe. If I understand that is less important than finding a drug combo that ultimately lessens or diminishes the symptoms - whatever they may be. Good luck with all of it. This forum has been so very helpful for a mom of a recently dx young adult!
 
Hugs
Ds was "mild" at dx only given pentasa ( useless)
After 30 days switched to 6-mp due to "moderate" from lack of weight gain /growth
Spent 8 months without any improvement
Started getting "severe " EIM's ( mouth ulcers ,joint pain , vascultis etc..)
So was switch mtx and later remicade and finally humira plus mtx.

I am sure his crohns is still "mild" by endoscopy but needs major meds to control symptoms
 
Wishing you the best. Like it has been said, don't beat yourself up. I was diagnosed at 34 but now I think there might have been signs earlier in my life.
 
Thanks to everyone who replied. You all are so helpful in getting me and my family through this battle. I feel much better knowing that i wasn't the only mom out there who was completely unaware as to what was going on with her kids.
 
As others have said don't necessarily give too much to labels. My son has also been labeled as severe but for the last 2 years, you would not know he has Crohn's. The first years were the hardest. My husband was also labeled as severe in the beginning but has not really had any issues the last 13 years. His new GI labeled him as mild after his last scopes in October where it showed him still in remission.
My son is pretty asymptomatic and our only clue that there were still issues prior to 2 years ago was his lack of growth. If it wasn't for that he really may have ended up in a much worse situation as damage would have continued so we have discovered what is normal for him and what is not. I keep an excel sheet with all his lab results and have discovered that for him that anything above an 8 on ESR is most likely inflammation present (normal range is 0-15) and even slightly elevated fecal calprotectin results equals inflammation.
 
ditto to all above... my son injured his back slightly months before his diagnosis, back ache kept returning and, as he played hockey, his GP recommended advils before practices and games. Thinking back, I don't know how I went along with this considering he was on the ice 5-7 times per week! At dx, GI mentioned advils may have triggered the crohns. :( But, on the other hand, GI also said the backache may have been referred pain from intestinal inflammation. :( Depending on how you look at it, I either contributed to 'triggering' his crohns or disregarded months of back aches (even though he would say normal 16 year olds didn't get back aches). :( In hindsight, it's easy to 'see'. Don't beat yourself up! No one looks for the unexpected, including doctors! :ghug:

Also, I've never even asked if my son's crohns is mild/moderate/severe. If severe, it'll just worry me even more! If mild, my son may slack off on his care/treatments. Better that neither of us know! ;) The label doesn't dictate treatment nor does it predict future crohns activity. Regardless, you need to get it under control and she will get back to her life. :)

Do look into enteral nutrition (nutritional formulas) as crohnsinct mentioned. My son did two years of supplemental enteral nutrition (EN) and this seemed to maintain his status,, although it did not eliminate all inflammation. Eventually, he also started on remicade. He reduced his intake of the formulas but continues to drink one to two boost shakes every day. I do believe that the nutrition (and extra calories??) he gains from these formulas have helped keep him healthy and, perhaps, have helped his body maintain remission?? In any case, the nutrition hasn't hurt in any way. ;)

As was mentioned above, aza can take some time to reach therapeutic levels. Is your daughter on medication (steroids?) to bridge the gap until aza and remicade kick in? Usually enteral nutrition (formula only, no food) or steroids are used to knock out inflammation and allow the maintenance meds time to reach appropriate levels.

Hugs... it is overwhelming at the beginning but, things do get easier with time. :ghug:
 
Tesscorm said:
ditto to all above... my son injured his back slightly months before his diagnosis, back ache kept returning and, as he played hockey, his GP recommended advils before practices and games. Thinking back, I don't know how I went along with this considering he was on the ice 5-7 times per week! At dx, GI mentioned advils may have triggered the crohns. :( But, on the other hand, GI also said the backache may have been referred pain from intestinal inflammation. :( Depending on how you look at it, I either contributed to 'triggering' his crohns or disregarded months of back aches (even though he would say normal 16 year olds didn't get back aches). :( In hindsight, it's easy to 'see'. Don't beat yourself up! No one looks for the unexpected, including doctors! :ghug:

Also, I've never even asked if my son's crohns is mild/moderate/severe. If severe, it'll just worry me even more! If mild, my son may slack off on his care/treatments. Better that neither of us know! ;) The label doesn't dictate treatment nor does it predict future crohns activity. Regardless, you need to get it under control and she will get back to her life. :)

Do look into enteral nutrition (nutritional formulas) as crohnsinct mentioned. My son did two years of supplemental enteral nutrition (EN) and this seemed to maintain his status,, although it did not eliminate all inflammation. Eventually, he also started on remicade. He reduced his intake of the formulas but continues to drink one to two boost shakes every day. I do believe that the nutrition (and extra calories??) he gains from these formulas have helped keep him healthy and, perhaps, have helped his body maintain remission?? In any case, the nutrition hasn't hurt in any way. ;)

As was mentioned above, aza can take some time to reach therapeutic levels. Is your daughter on medication (steroids?) to bridge the gap until aza and remicade kick in? Usually enteral nutrition (formula only, no food) or steroids are used to knock out inflammation and allow the maintenance meds time to reach appropriate levels.

Hugs... it is overwhelming at the beginning but, things do get easier with time. :ghug:
Click to expand...
She's not on a steroid as of yet. I am going to talk to her GI about that. Thank you for all of this info. It really has been very helpful.
 
One more thing. She just got a CT scan done on Monday and ut showed no strictures or obstructions, thank God but it did show that she has Gastroperesis. Anyone familiar with that? And is this common in Crohn's? She will be starting Reglan today for it.
 
Under General IBD section, there is an area , I believe, called and Crohn's Disease and Gastroperesis. Best of everything.
 
Yikes
Double check on reglan please
Black box warning
Our Gi won't use it
Can cause serious damage that can't be fixed

Ds has GP as well
He uses erythromycin and it works well
Paging maya142
Her Dd has it as well
 
Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat.

Stop taking metoclopramide and call your doctor at once if you have any of these SIGNS OF A SERIOUS MOVEMENT DISORDER, which may occur within the first 2 days of treatment:

tremors or shaking in your arms or legs;
uncontrolled muscle movements in your face (chewing, lip smacking, frowning, tongue movement, blinking or eye movement); or
any new or unusual muscle movements you cannot control.
Stop taking metoclopramide and call your doctor at once if you have any of these other serious side effects:

slow or jerky muscle movements, problems with balance or walking;
mask-like appearance in your face;
very stiff (rigid) muscles, high fever, sweating, confusion, fast or uneven heartbeats, tremors, feeling like you might pass out;
depressed mood, thoughts of suicide or hurting yourself;
hallucinations, anxiety, agitation, jittery feeling, trouble staying still;
swelling, feeling short of breath, rapid weight gain;
jaundice (yellowing of your skin or eyes); or
seizure (convulsions).
Less serious side effects may include:

feeling restless, drowsy, tired, or dizzy;
headache, sleep problems (insomnia);
nausea, vomiting, diarrhea;
breast tenderness or swelling;
changes in your menstrual periods; or
urinating more than usual.
This is not a complete list of side effects and others may occur. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

Reglan Overview - Patient Information Side Effects

SIDE EFFECTS: See also Warning section.
Drowsiness, dizziness, tiredness, trouble sleeping, agitation, headache, and diarrhea may occur. If any of these effects persist or worsen, tell your doctor or pharmacist promptly.

Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects. Many people using this medication do not have serious side effects.

Tell your doctor right away if you have any serious side effects, including: mental/mood changes (such as anxiety, confusion, depression, thoughts of suicide), decreased sexual ability, inability to keep still/need to pace, muscle spasms/uncontrolled muscle movements (such as twisting neck, arching back), abnormal breast-milk production, enlarged/tender breasts, swelling of the hands/feet, changes in menstruation in women.

This medication may cause side effects that look like Parkinson's disease. Tell your doctor right away if any of these serious side effects occur: shaking (tremors), slowed/difficult movement, muscle stiffness, mask-like facial expression.

This drug may infrequently cause a serious (sometimes fatal) nervous system problem (neuroleptic malignant syndrome). Get medical help right away if you notice any of the following very serious side effects: fever, rigid muscles, increased sweating, fast heartbeat, confusion.
Click to expand...


From
http://www.rxlist.com/script/main/mobileart-rx.asp?drug=reglan&monotype=rx-desc&monopage=0
 
My daughter was diagnosed with Gastroparesis about a year ago. Typically it is diagnosed with a gastric emptying test - never heard of a CT being used.

The symptoms usually are nausea after eating, fullness after eating, abdominal pain or discomfort after eating, vomiting and weight loss.

Gastroparesis is delayed gastric emptying, which means food is taking longer to leave her stomach which then causes the symptoms I mentioned. Typically, in a gastric emptying test, the patient has to eat a meal of eggs which have some radioactive material in them, and then over 4 hours pictures are taken to see how fast the meal empties from the patient's stomach.

If more 10% of the meal is left after 4 hours, then Gastroparesis is diagnosed.

About the meds - our GI does use Reglan, but I was too scared of the side effects to let my daughter try it. Most GI's use Reglan for less than 3 months - they say that is safer.

We have used Erythromycin, Bethanechol and Domperidone. Domperidone is similar to Reglan, but has fewer side effects. It is not approved for Gastroparesis in the US, so you either have to get it off-label, through a trial, or from another country, like Canada.

You should talk to your GI about the medication options, if you're not comfortable with Reglan.

Digesting fiber and fat is harder and takes longer, so most GP patients eat low fat and low fiber meals. Small meals, many times a day help.
 

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