Son's update

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Kimberly27

Kimberly27

Joined
Feb 6, 2013
Messages
226
Location
Mendocino County, Northern California
Well, there is nothing like a blood test to confirm what you already knew in your heart and soul...things got worse.

Reed's SED rate went from 24 in Dec, to 20 in Jan, and now it's up to 30! His pain had gotten so much worse. We're going the wrong way! Bummer.

The Xifaxin he started two weeks ago really exasperated his abdominal pain, so now he's off. Plus in a couple of days UCSF will drop him down from two VSL#3 probiotic capsules to one (and possible none for awhile). Additionally, they may consider dropping his Pentasa frequency from four times a day to two. (I guess there is research showing that twice a day may work better?) Lastly, they confirmed that he is on his maximum dose of Azathioprine 125mg for his weight (110 lbs). (Dec.19 - Jan 19 at 100mg; and then Jan. 19 - Feb. 19 at 125mg). They want to start fish oil after the next blood draw.

Anyway, Reed will get new blood work done in two weeks. They are also running a TTG even though he is gluten free just in case.

On a side note, I hold my breath when they measure him hoping, but no such luck, no growth. :(

I'm a little hopeful that there is a plan that involves less medication, but at this point, I'd shove 30 pills a day into him if it worked.

His doctor is the one who runs the IBD camp in Northern California. Reed is signed up as a jr. counselor. He will finally, officially meet others with Crohn's.

Reed and I snapped at each other a bit at the appointment, and the doctor just gave me a big smile. He gets it: Teenager and Crohn's!

Kimberly
 
Hugs
Sorry he is still having issues.
Is there a plan to scope/mre ?
Or switch meds to Mtx or a biologic to get him some relief ?
 
Thank you to all for the support.

My husband and I are hoping that the inflammation was caused by a reaction to the Xifaxin. We'll see. I think they want to wean him off of a lot of the meds to really evaluate how well the Azathioprine is working.

Reed did have an MRE in late November which didn't show any strictures or fistulas. His scope was clean. In fact, he was diagnosed through a biopsy. Reed's main presentation is pain, not diarrhea, so they feel okay about taking him off of the probiotics for now.

Reed went back to school in late November, and has started martial arts again. He spends the night at friend's, and is basically functioning through the pain. He does get tired. He is supposed to go on a school Spanish trip to Costa Rica in early April. The doctor and his awesome nurse feel that there is no reason for him to cancel his plans. (Yes, I'm worried.) They will not put him on a new drug before he leaves. We all expect the numbers to go down, but we'll see. Fortunately and currently, Reed doesn't have bathroom issues that might affect his participation.

On a side note, Reed was part of the American Youth Leadership Program in Cambodia for a month last summer (environmental community service). A couple of months after he returned, he was in the hospital which lead to the Crohn's diagnosis. I can't help but wonder if the microbes were the environmental trigger that got the ball rolling. So...microbes in Costa Rica? As I say, I worry, but not enough to clip his wings. We did, however, pay for the extra medical insurance.

Kimberly
 
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My son started losing weight a few months after we came back from the Dominican Republic. I will always wonder too if that was his trigger.

I agree about not clipping his wings but did your GI say anything about his travels? My husbands family lives in Dominican republic and he wants to go back but I am afraid to.
 
@ Johnnysmom,

The GI is the one who is encouraging him to go! I'm sure not having strictures, etc. might make the doctor feel more at ease with this. I figure if he's the head of the department, he probably has a good take on these types of things. I was surprised. I thought they'd discourage the travel.

Are your in-laws in or near a city with access to a good hospital? I think there is some kind of medical flight insurance available if you need to be airlifted out of the country. I'm not knowledgeable about that, but I bet there is someone on this site who is! :) Partly, I want Reed to see that he is still capable of doing amazing things.

I will always wonder about Cambodia... I wish there was a place to put that heavy feeling away.

Kimberly
 
I'd love to hear more about his travels too... especially gluten free. We were considering Costa Rica for spring break, but with my son having Celiac, we are so gun shy to leave the U.S.

I'm sorry he's not feeling the best right now. I hope you get some answers soon.
 
@ Mehita,

Reed's kind of a pro at being gluten and casein/dairy free. He's going on nine years of experience. I packed way too many power bars for his month trip in Cambodia. He mostly ate fish, rice, and fruit.

I hear that in Costa Rica it's easy to go gluten free. Meat, rice, beans, fruit. Simple foods - easy compliance.

I did take extra care to pack over the counter medications in case he got sick. I didn't want him to try to find gluten/dairy free medicine in a foreign country.

I think your trip sounds exciting!

Kimberly
 
We have a friend who is a Dr. and said he would arrange for airlift. He did say never to get treated at a hospital there or anywhere else if we can help it.

I am glad your son is able to travel and the GI is encouraging him to go.

I am sure once we have a little more experience under our belts about what to expect we will decide to do a trip. I am just a worrier!
 
I'd suggest having a hunt online and finding the most active expat forum for Dominican Republic, then check out what expats living there have to say about medical care. We've lived in a couple of developing world countries and the medical care has been patchy, some reasonable doctors and hospitals others you wouldn't touch.

Expat communities who live in place like that are generally really on the ball about what is and isn't acceptable standard (by western standards) locally and have a good sense of what circumstances they'd go straight to medical airlift out.
 
@ Johnnysmom

I totally get it! I was raised by a worrier, and I have acquired some of those habits. It can be hard to find balance in life. Also, the line for balance keeps moving, so you have to find it all over again! My antidepressants and my hypnosis/meditation track on my ipod that I listen to every night (no exaggeration!) have helped me tremendously. It's liberating to "let it go".

If Reed's numbers continue to escalate, then we will make a different plan. But for now, I don't want to borrow that worry. For now I'll concentrate on the positive- he's functional.

I would imagine that for Coast Rica and the Dominican Republic, Miami would be the airlift location. I bet Miami is set for emergency transfers from Central America and the Caribbean. I hope I don't need to know that first hand! Lol.

I think I'll contact the embassy and my congress representative to let them know when Reed will be there. If anything goes badly, I want someone to already know who he is.

Kimberly
 
Bad night at karate. Am I a bad mom for encouraging Reed to return? Now he doesn't want to quit again, but I'm afraid that he is aggravating his abdominal region (sit-ups, hits, kicks) and that it will affect his numbers on his blood test in two weeks. I don't want him to go on a more potent drug because I'm not protecting him. (You should see him fight. It's odd for me to suggest I'd be protecting him! He's small, but good.) We are both in the adult class, so I see it all.

He wants his normal life back, but he was so exhausted he was on the verge of crying.

Agh! Scream! Yell! :angry-banghead:


If there was an oscar for worst mother, then I think I'd be nominated.

Just a down day. :(

Kimberly
 
It is hard to know when to push and when not to.

My son was in basketball last year and had to take the majority of the season off because he had just been diagnosed and it took months for him to heal and feel well. We gave it a good ole try for a while but it became clear he couldn't continue.

The hardest part was that we thought at the time if we let him quit that meant we were conceding that maybe he would never be able to play competitively again at all. It was just too painful for any of us to accept. Our GI told us that being involved in sports would not in any way make his disease worse. And as long as he felt up to it, it was in fact good for him.

Now he is feeling great and this year made the select team and has played in every game. It just took his body time to heal last year and he needed the rest. We pushed him until he decided he needed the break. It might help your son if he knows that this too shall pass and it's okay to take a break, it doesn't mean he can't start again and be able to compete just as well as the others.

Read about Matt Light. He is an NFL player who played his entire career with crohn's disease and just announced at his retirement that he had the disease. He is one of only 6 players in history to start in 5 super bowls.

You are a great mom, you just have a lousy situation to deal with and are making the best you can of it at the moment. (((((hugs)))))
 
^^^ yeah that!!
We were told the same exercise is good and let them do as much as they want.
Granted my son was only 7-8 at the time of dx so he wasn't really pushing himself.
The Gi suggested we let him go / push him to go to keep normalcy since he will have it fir life and will unfortunately have to go to work or other event when he is not 100%.
But DS swims competitvely . It was hard to watch. He would only get in the pool once and swim maybe one lap and then leave.
After a year of healing he can now swim 45 minutes straight without resting multiple times a week.
So if you stick with it and provided he is on the right med to let him heal . I think sports are a good thing.
DS did not truly start to heal until he was put on remicade in the end of August.

Good luck
 
Thanks to both of you. Hugs.

I think my base fear what stated: That he would never be able to perform at the level he had been at, and that it really, finally meant that he was sick and that all of this was truly real.

This is all so new to me. He's always been so tough (not macho, just resilient), that I kind of thought, "He can push through this too." There is a lot of surrendering one has to do with this disease. Surrendering plans, hopes, goals...

(Big long breath...)

Okay. Round two.

Kimberly
 
With the right meds and time he can get back to the same level but there needs to be time.
Our Gi tracks my son's meet times . We have ones from three years ago to today .
It paints a good picture of disease and how and when the meds helped.
He is not up to pre dx yet but I can say his competition times are really getting there.

It will be ok
Honest give yourself time to grieve the loss of the past life
And embrace the new normal .
 
It's really hard to know what to do in these situations. I guess you can only let him guide himself exercise wise and to know when to stop or not. My son's surgeon kind of freaked me out a bit last week. He said while Andrew is feeling good to "live life to the full" and do whatever he wants, whether it be swimming or trampolining (I worry it will irritate his fistula) because this disease is so unpredictable you never know when he might not be able to do it :ywow:
Sad thinking he has to take advantage of being well in case it all goes wrong and he has to stop.
 
Well I guess I'm officially a basket case (I write while crying- again!).

Update:

A month ago, Reed was taking 19 pills a day and was feeling very ill. Yeah, surprise, right? UCSF took his meds down to 2000 mg of Pentasa (from 4000), took him off his VSL#3 probiotics, and most importantly took him off of the Xifaxin antibiotic (which made him very ill). The Xifaxin pushed his SED rate back up to 30. There was quite a bit of pain.

1 1/2 weeks ago Reed had his first "pain free" days (4 days) since September. Then...he had mid term tests- stress- and down the path of pain we went again. He was grumpy, wouldn't eat, would snap at me, etc. I couldn't believe how happy I was when he was pain free, and then my hopes were crushed when I saw the same old @#$# happen again!

Now he's better and today he officially got the go-ahead from his doctor to go on the school trip to Costa Rica. He doesn't have GI symptoms, so I think he'll be okay. I should be happy, right? Yes, there is no logic in this story.

A synopsis of my crummy day:

So...I totally freak out today! My husband took Reed to the doctor (long drive) because I'm out of sick days. I forgot to take my antidepressant this morning because I was worked up over the appointment. (Did you catch the part about forgetting the antidepressants- that's foreshadowing.) The nurse had emailed suggesting Remicade, and I was in a state over it. I was afraid to use the "big gun" medication so soon. I guess I was expecting our lives to radically change today and I was trying to amp myself up for it. After the apt. my husband emailed that they weren't planning on changing anything yet, and instead of being happy- I totally started freaking out and crying. (Thank god my students were at lunch!) My poor co-worker! I blubbered and carried on. I took the antidepressant at lunch, but I've still been weepy all evening.

I hate being out of control. I hate that I feel like we are always walking on a tight rope. I hate that my son feels bad. I hate that he's so skinny. I hate that this has changed me. I hate that, even when I'm off meds for just one day, I lose it again.

I wonder? What am I really like off this medication? I'm I so unstable I can't make it through one day? Wow!

Family:
Oh yeah, a wealthy realative called and told me I was suppressing my son's ambitions by suggesting we might need to pick a cheaper college because of medical expenses. Bad mommy.

And yet another family member: Blah, blah, blah, blah, blah. End of story message: bad mommy. WTF!

I don't understand how people keep questioning the diagnosis. We are getting the vibe from many family members that we haven't researched this enough because they don't think he has IBD. Oh, yeah, and while we're screwing around not following though on leads, we are basically being irresponsible and bad parents. Yes, I want to believe it's something else and we can get off this roller coaster, but it's not.

...And I thought I was doing so well.

Thanks for letting me vent.

Kimberly
 
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Kimberly, here's a big <<<HUG>>>. Your reaction today was not necessarily what you'd be like if you ever weaned off your medication, it is what you are like if you forget it and stop it cold turkey. There is a difference. You are okay. Your reaction to all those stressors has to more with the fact that your neurotransmitters went on a tilt-a-whirl than anything being wrong with you. Forget the family members. Give yourself a few days to readjust. It is going to be okay.
 
Sorry to hear you're having a tough time! I can totally understand the rollercoaster you are on. I wouldn't worry too much about freaking out when you didn't take your meds - a day when you were worried about Remicade and not being able to be there, and then being told they aren't changing things yet, would be alot to take in whether you had your anti-depressant or not.
I am a worrier too and when my son isn't doing well I spend alot of nights lying thinking too hard with tears streaming down my face.
I also understand that extreme of feeling so relieved when they are feeling good and then the knot in your stomach comes back when they feel bad again.
I am sure the doctors will get your son on a regime that will get him feeling better again, sometimes it just takes longer than we want.
You are not a basket case - life is stressful enough to cope with without dealing with Crohn's.
 
Thanks everyone. I really felt better after writing to all of you. This is a great place.

I'm also nervous about the travel to Central America. I keep reminding myself that this is a good thing. He leaves in one week for 10 days.

Thanks for the info about the meds and the cold turkey effect. I think I might have forgotten my Monday medication too. Hmm... I took it today!

Leftovers from yesterday: puffy eyes and exhaustion. Deep breath.

Kimberly
 
Medication or not we all have those days that everything seems to come at us at once or we just are as able to cope for whatever reason on that particular day.

I lost it a few weeks back, in the counselors office at school of all places. Couldn't stop crying all day.

I'm sure he will have a fabulous time in Costa Rica and will be a treasured memory for him.

Deep Breaths and hope you are doing better today.
 
Kimberly, absolutely vent away!! If you can't vent here where can you?

Big (((HUGS))), hang in there hun xx

:ghug:
 
You are doing great and are just being a normal parent of a child with Crohns. It is a terrible disease and our kids don't deserve it. I look at my son and think if you can cope then so can I. But we care and worry as parents and it is TOUGH. You can only do your best and tears help
 
Okay, so we don't always get to post good news...so here goes.

Reed feeling well and having a fabulous time in Costa Rica! :grr1d: He is horseback riding, kayaking, hiking, etc. He even messaged me on facebook to tell me he is remembering to take his medication and to wear sunscreen.

Yeah for Reed! :banana:

Take each good day when you can! :emot-dance:


FYI- In his backpack:

A double-sided, English/Spanish laminated copy of his medical conditions, medications, medical contacts, and emergency phone numbers.

A laminated page of Spanish phrases for ordering gluten and dairy free.

One extra day's worth of medication.

Hand sanitizer.

Kimberly
 
Holy $#%&!

The teacher from Reed's program just called from Costa Rica! Reed woke up from a nap shivering and vomitting. They called.

One of the chaperones is an EMT, and he, the teacher, and Reed think this might be just a bug he picked up. However, I'M FREAKING OUT!

I had them call UCSF, but his doctor isn't there. I asked them to call back the on-call doctor just to make sure this wasn't an emergency situation. I said if in doubt, take him to the hospital.

Oh my God!

Waiting for a call back right now.

Kimberly
 
Hi Kimberly,
I am wondering if you heard anything more. Keeping my fingers crossed that it is a simple bug! Sending hugs your way.
 
Okay. Here goes.

Reed seems to have a stomach bug. But, being the mom that I am, I had the teacher in charge talk to the UCSF on-call doc., who talked to Reed's doc. The long and short. They are not worried, which makes me worry less, but I'm still worried.

He is sleeping it off. UCSF gave the teacher (Bobby) directions on what to look for if things change. I'm glad one of the chaperones is an EMT (Bobby's brother).

I'm still a wreck! I might need a run to get this energy out! And a wine chaser! :eek2:

I'm dropping and fumbling things in the house. As I was waiting, I aggressively weeded the flower garden! It felt good to have my hands in the dirt.

I talked to Reed, and he sounded terrible.

I'm glad they called. I think they were playing it safe because of Reed's condition.

Kimberly
 
Just FYI,

Hand sanitizer only kills bacteria, not viruses. You need to wash hands or use the antibacterial hand wipes. The wiping action is what will remove a virus from the hands.

Sorry about the stomach bug. Call Reed's GI and talk with him if it will calm your nerves. I would want to hear the info from him.

Hope he is feeling better very soon. ((((Hugs))))) and hang in there momma!
 
I know it's hard not to worry and freak out, Kimberly... but don't let the stress get to you. Do what you need to do to settle your mind. Call him again, call the doc, whatever, but take care of yourself too.

Sending peaceful thoughts and prayers!
 
Kimberly for what it's worth I think your totally doing the right thing encourage your child to take cost into consideration when deciding on a college and that would be the right thing to do whether or not he had IBD.

We all have budget restrictions and the US college fees and student loans system are a real problem at the moment, hopefully congress will gets its act together and do something about addressing this issue (how ever it's hard to see current congress doing much constructive about anything). However if that doesn't happen I can see that it's very important for parents to encourage their kids to take options that aren't going to leave them when they graduate with student loan debts that their going to struggle to ever pay.

I find your relatives attitude quite staggering, I'm not an American and I don't live in the US but even I've read that their are hundreds of thousands of college graduates in the US now who are working minimum wage jobs, struggling with student debts and wishing they'd chosen cheaper college options.

My boys are 10 and 14 but we've already had this talk with them and they are clear on what our limits are in terms of what we are prepared to consider.
 
Sorry missed your last updates while posting :(

Hugs. Hope it's just a minor stomach bug and he's feeling good again soon. Agree with all the advice above about trying to relax.
 
I'm breathing now.

I gardened (Yes, it's Spring here).
I walked the dog.
I laughed with my husband.

Now I will have that glass of wine. I don't drink very often, but tonight sounds like the night.

I'm actually okay now. He returns on Friday. I hope he's well enough to go on the rafting trip tomorrow.

I'm so glad I had this site to go to! My husband was gone when they called, and I knew right where to go!

Thanks to all of you and your continued support.

Kimberly
 
Gosh Kim.....hard enough when they get a bug at home, but long distance in another country takes the anxiety up a few notches. It sound like he has good care and communication with his docs,and theat they seem to have things under control. Hopefully it will be quick recuperation. Hope you get some sleep!!
 
Awmom,

Boy oh boy!

When his teacher called and said, "This is Bobby," my heart sank. I told him, "This can't be good news."

I'm so thankful that Reed is in a group of doctor's that serve on-call for each other. Wow! Reed's in Costa Rica and a teacher in a dive hotel spoke with some hot shot from UCSF. Thank God!

I'm pretty wired. I'm planning on watching some Netflix until I can't keep my eyes open any more! I'm a teacher and on Spring Break, so I'll just stay up until I wear myself out.

Thanks for the support. Sounds like you had a rough day. Shoot, too bad you can't come over and hang out with me! LOL

Kimberly
 
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@ Maree,

Thank you. This college business in the US is crazy! There is major polarization in education in the US. The teens have to practically give up their lives while in high school (AP classes, tests, sports, community service, etc.) to go to a college that sucks them dry of money. With that said, we do have some awesome universities and opportunities.

Sometimes having rich relatives means they do and say the oddest things. My husband, son, and I live in a very small town 2 hours north of San Francisco, so my son is aching to get out! I understand that. I think you make perfect sense.

In general in this country, the label you buy when going to college can translate into earnings or contacts for jobs. Not always, but often. I think that is what motivates many of the kids when they are pursuing colleges.

I'm a sixth grade public school teacher in a poor county (district area). Where you live in this country makes a difference in the quality of education your child receives. Taxes for schools are in part based on the prosperity of your region.

I'm rambling...it's the wine. Sorry.

Kimberly
 
Kimberly

My daughter has a choice for univ next year. The ones she can get to using public transport and live at home and has the marks to get into.

Luckily this gives her the choice of three good places.
 
I can understand exactly how your son feels Catherine & I grew up on a farm three hours north of Melbourne and I remember that ache to leave and explore the world.

My boys know they will have to go to Australia for university as Australian passport holders they get discount fees there. As my husband & I probably won't live there again until he retires (I wish that wasn't the case, but got to be realistic) I don't mind which city they choose.

Although the boys have a sense of being Australian I know when they get there they are likely to feel like foreign students (they've spent so little time in Aus) and that they'll find it hard being half way round the globe from us (and if it was there choice they'd choose to be closer to us) but that's just the way it's going to be and they need to understand and deal with that. My oldest one is already expressing some sadness at the idea that he has only 4 years left before he returns, he sees going to Aus for university as the end of an adventure not the start of one.
 
Maree and Catherine,

FYI- Many states in the US subsidize education at their own state's colleges and universities for in-state residents only. For example, if Reed wanted to go to school out of California, let's say Washington or Colorado (I love those states!), then he would have to pay out of state tuition which can be astronomical! Some state colleges are opening more spots for out-of-state residents because the school can make more money that way! Yikes!

Oddly enough, some of the more expensive private universities can cost students less than a state sponsored school because their alumni endowments off-set the tuition costs.

Crazy!

And don't even get me started on health care. Getting ready to do my taxes: Medical out-of-pocket WITH health insurance... $12,312.00!

I still love Northern California anyways. I finally get to use the "hippy" emoticon! :hippy:

BTW- I almost got to work at the California exhibit in Bisbane for the World's Fair ages ago. I wish I could have visited your beautiful country.

Kimberly
 
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At the moment the maximum a univ can charge per year if you have a commonwealth funded place in just under $10,000 and they paid back using the tax system.

Thank you have remind me not to complain about health costs.
 
The best thing about the repayment under the tax system in Aus is it's indexed for inflation only (best loan imaginable) and repayments are tiered based on income threshholds, (with a minimum income threshhold you have to hit before you need to make a payment.)

Catherine at present Owen has his heart set on Marine Engineering. If that doesn't change his only option in Aus will be the University of Hobart campus in Launceston, (at least it's an inexpensive place to live) which means it's likely to be a two day trip to get home to us. Liam has no ideas at all and is much more attached to Melbourne which is odd as he was so little when he left Oz, so perhaps I'll take you up on that offer when he gets to university age.
 
Wow, what a stressful time! So sorry you had so much worry when Reed got sick. Hope he is feeling better and can enjoy the last few days.
 
I hope Reed's feeling better today and doesn't miss out on anything!

FWIW, my daughter will be starting uni this fall. Our local uni waives tuition 100% for in-state kids who score 28 or better on the ACT(a standardized test for high school achievement) and then maintain a certain gpa once in school. My daughter got a 28. Phew!! There are also incentives for doing well in high school classes. In Kentucky, it's called KEES, Kentucky Educational Excellence Scholarships. There are thousands of programs to assist and diligence is truly its own reward when it comes to US higher education…..to some extent health care is similar. I don't think it (HC) should require the same diligence but there are programs through drug cos., hospitals, health care groups, individual states etc. that, if one is willing and able to dig, there is help available. There are people whose sole jobs are helping others find this help. It can be a convoluted nightmare I have no doubt!!
 
Good Morning Kim, Sure would have been good hanging out last night....was up until 3! Did you get any sleep? Any news about Reed? I hope like crazy that he is much better today.....and then he comes home tomorrow right? YAY!!!
Let us know!!!!!!!!!!!
 
I'm going with the "No news is good news" approach. If he went rafting, he wouldn't be able to email me until tonight.

On an unrelated note concerning my brother, I got a phone call at 11:30 last night! (He's okay.) My heart practically stopped. I was in survival/efficiency mode before I even answered the phone thinking it was from Costa Rica. The last time someone called me that late was about four years ago. What are the odds I'd get a late call last night?

I slept deeply.

Thanks to all.

Kimberly
 
Reed's back in the US. However, he promptly curled up in a ball on the couch in pain. He said he had pain in Costa Rica, but that he managed. No diarrhea.

I hate this disease. He should be bubbling over with stories and sharing photos, but instead he's just trying to cope.

I think the Azathioprine isn't working. Reed is resistant to the idea of a stronger med, but I'm not convinced he doesn't need it.

He even asked when his next doctor's appointment is. Hmm...

Well, I'll try and focus on the positive. He's alive, he had a good time, and he has time to rest before school on Monday.

I guess my vacation from the disease is over.

Kimberly
 
I'm not sure you had a vacation from the disease at least not from the worry. You we're very brave to let him go. Sad that he's feeling unwell but great that he enjoyed I'm sure when he's feeling a bit better you'll get to hear all those stories and see the pictures.
 
Poor kid. Glad he had a good time though, once he feels more comfortable he'll start with the stories!!!

Maybe once he's seen Doctor and been able to discuss what's going on he will agree he needs different meds.

Hope he is feeling better soon. :ghug:
 
sorry I've been unavailable when you've been worried sick about Reed halfway around the world! I'm so glad he's home. So when IS his next GI appt?
 
Thanks.

The next GI apt. is in two weeks.

I'm feeling bullied by the disease. I'm ready to call "Uncle," and give into the thought of stronger meds.

He's taken some tylenol today, but we do have some pain meds from his surgery. Should I consider giving him 1/2 a pill? Doesn't it mess up digestion?


Kimberly
 
I'm glad he's home safe and sound with you... I can imagine your relief at being able to see and care for him yourself! :ghug:

Hopefully, it is just a bug he is still getting over!
 
Gosh Kimberly, I'm so sorry to hear Reed is in pain and I know how worrisome and stressful it is for you too. The pain med, if it is an opiate will slow motility, but I don't think it will do more harm than that. If he is in a lot of pain, I personally would give it. Hopefully a couple of days of home cooking will also help a bit until his appointment.

I remember how I struggled when they put Nico first on 6 mp and then a year later, on remicade.....I never thought it would come to that. Now I think that perhaps if they had put him on remicade to begin with, we might have avoided the surgery.....of course, one never knows. But all this to tell you that I completely understand how you must be feeling. It is soooo hard. So know that I am thinking of you, and hope Reed starts feeling a bit better. I'm glad he is home.
 
I'm so sorry to hear that Reed is having issues Kimberly. :(

If the pain isn't relieved by the Tylenol then I personally would give the half tablet to allow him to get some decent rest.

Thinking of you, :heart:

Dusty. xxx
 
Thanks everyone.

As expected, he refused the medication offer. He hates the way the pain meds make him feel.

Just like a toddler, I put him to bed early. (I can't believe a teenager fell for it!) I hope a good night's sleep will help. His pain is always more severe when tired. Is that true for most everyone?

Kimberly
 
We have very strong painkiller from a Er visit but Sarah's gi believe if her pain is severe enough to use them we need to go the er for advice.
 
we have tylenol #3 for my daughter for severe pain. Thankfully she hasn't needed it in a while. Her doctor always said to give it a try but if it did not help and the pain was that severe to head to the ER. She definilty gets more tired when she doesnt feel well.
 
He took all the tylenol he's allowed to take today. And this morning, he did break down and take 1/2 of a pain pill.

He pooped this morning, has had gas all day, and to me it seems like he's a little constipated, but he won't talk about it. He's been having one regular bm a day. No diarrhea.

I've been on pins and needles. I've been bugging him all day, and now I'm even annoying myself with all the endless questions!

What's the deal with steroids? I think they are short term, right? Do you think this is something we should consider? Are the side effects for just a couple of weeks really bad for a teen boy?

Kimberly
 
The problem with steroids ...
typical course is 2 weeks at dose but then you have to wean slowly
so you end up being on them for about 5-6 weeks if you are lucky.
most end up on them for months since once you try to wean - flare ....
Ds has had them twice once 6 weeks - the other time for over three months.
 
Typically-remicade before humira
since infusions (remicade) has a higher success rate and the doc can monitor compliance in teenage/young adult patients

Humira is used when remicade fails or the child intolerant
 
AZA and 6-mp are very similar.
OUr gi did not have us switch to AZA after 6-mp.
WE did try MTX for 8 weeks for DS.
WHen that was clearly not working ( DS could not wean down off pred while on MTX)
The GI placed him on Remicade.
He is now going to try Humira since he had two reactions while being on remicade.
 
With Sarah's first two courses of steriods with a starting dose of 30mg for two weeks, then going down 5mg per week. She had very few times effects if any and feel better very quickly.

With her current course of steriods with a starting dose of 50mg for four weeks then going down by 5 mg per week. She has severe acne and puffy cheeks.
 
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Reed and I just got back from side-by-side foot massages at the reflexology place in town. His spirits are up, and he's moving a little better- not great- but better.

Ahhh... I really needed to see Reed relax.

Do you ever feel concerned about the amount of stress we are under? I have no appetite when I'm stressed so I don't eat. That is a terrible thing to do for the body.

Kimberly
 
Stress always makes me physically ill too, when I look back on the times in my adult life when I've been hospitalised they've always followed high stress times.

I'm sure that stress management makes a huge difference for general health even for people with no underlying medical problems but I'm not very good at it. My pain management clinic use to say that stress is the volumne control knob for pain. I know there was an explanation given as to how this works at a physiological level but I don't remember the details.

I think the foot massage sounds like an excellent idea to help get Reed's spirits up and his pain levels more under control.
 
Glad the foot rub helped. Maybe you should go next! Stress is very hard on the body. Have you seen what it is doing to MLS?
 
Carolin- I did have one!

Reed's home from school in pain. We called the doc. and moved the apt. to tomorrow. They drew blood and are collecting a stool sample.

My husband has been running around with him getting all this done. I'm at work going crazy! (No more personal days.)

I'll go to the apt. tomorrow and see what's going on.

No fun being a work! Worried.

Kimberly
 
I'm glad you got one too. Sorry that you aren't getting to be with your son as he is suffering... Frustrating, isn't it? Praying for you and your son.
 
Sorry things have been so stressful but glad Reese has an appointment tomorrow, hopefully with some lab results in hand! Nico was put on steroids (40mg x 2 weeks and then wean for 6 wks)and should have been put on 6mp at the same time (had a provisional GI at the time and I didn't know better) so then did EN for 4 weeks while starting the 6mp+ flagyl.After noting the stricture, they switched him to remicade. The remicade works faster than the 6mp or AZA so I don't know for how long they would use the steroids.

But I know it all feels so scary. And you are right about stress being so debilitating....can't be good for us, but I guess it's part of the package. I often wonder what it would feel like to have one week go by without a major stressor.

Anyways Kimberly, I will be thinking of you guys tomorrow. I hope the appointment goes well and they find something to give him some relief. Keep us posted.
 
Thanks Carolin and Awmom.

Reed got a blood draw, but he still hasn't pooped, so no stool sample yet.

I'm amazed at UCSF's willingness to get him in so quickly. Apt. at 8 am tomorrow, (San Francisco traffic! Yikes!) and we still have our next Tuesday apt. closer to home to follow-up.

On top of everything, I can't believe he's going to miss all this school when he just finally got back on his feet. Sad and frustrating. Plus, if he's not well on Wednesday, he can't attend his student of the month ceremony for the high school.

I know many of you would not have sent your child abroad, but at the time things seemed good. I'm getting a lot of judgement from a few people I know. Some have said, "I can't believe you sent him! I would never have done that."

I just didn't want Reed to live in a cage. I had hoped the trip would show him that life goes on. He did have a good time and felt fine until the vomiting "flu" or whatever it was.

I'm rambling...sorry.

Stress reducers today: Cardio class, karate class, meditation, small 20 minute nap, posting here, and talking to my husband. But...I'm still amped! I feel wired.

Kimberly
 
Hang in there, Kimberly. I know the bigger meds can be scary, but a lot of them do work very well. You just have to find the one that works best for Reed. I forgot who it was on this forum who said it, and I know I'm going to quote it wrong, but the meds seem like horrible lions? tigers? monsters? when you're considering them, but when they work, they're more like a basket of kittens. I totally butchered that, but I'm sure you get the idea :)
 
Houston we have take off! Reed pooped! Yeah!

@Mehita. Thanks, I'm coming round. I know you're right.

Tonight's evening while anxiously awaiting tomorrow's appointment: Sitting around in sweaty work-out clothes, watching Net-flix, drinking wine, and ignoring a dirty kitchen. And I feel perfectly fine about it! LOL

Kimberly
 
At least you got the workout in! I'm sitting here vegging in a dirty house and feeling guilty, but not motivated to give my only completely free hour before bedtime up to do anything about it.
 
Kimberly I have nothing but respect for you for sending him on the trip. I think it was really brave of you and that it's great he got to go The trip was a fantastic opportunity and despite the fact that you've had this nasty patch following it, I'm sure he'll have fantastic memories from it.
 
I hope the docs sort him out. And as for the trip - they have to live life and can't be wrapped up in cotton wool all the time. We can't do right for doing wrong as parents. We can only do our best at the time and that's what you are doing. This is a horrible condition and no child should have to go through it.

Keep positive
 
Don't feel badly about having let him go to Costa Rica. At age 17, if Nico says he feels good enough to go somewhere, and GI issues seem to be under control, I let him. It was unfortunate that Reed got a bug, but it seems like he had a good support system there and that you had versed them well on his situation. I think it was a good learning experience at all levels for him (hopefully a lot of fun mixed in). Let us know how it goes this morning.
 
Thanks to all of you. It's nice to have friends on-line who understand.

Appointment update:

We saw our nurse practitioner (who is incredibly smart and kind). Reed's doctor is being hosted as a visiting professor in Minnesota this week (Mayo Clinic?). She is going to email him. They talked yesterday afternoon about Reed.

Current SED rate 67 and CRP 19.9. (One week before Costa Rica: SED 26 and CRP 2.6)
Liver fine.
Pancreas fine.
Kidneys fine.
No diarrhea.
No nausea or vomiting.
No blood or mucous in stool.
One regular stool a day.
No fevers.
No joint pain.

No medication changes for now. All indications are that the Azathioprine was working fine before the trip. (I'm not sure I totally agree with that, but he was getting better slowly.) She is leaning away from the Remicade idea.

The running theory is that this is still the bug he caught in Costa Rica working through his system. Until the stool test results are in, she prescribed Ciprofloxacin (Reed doesn't respond well to Xifaxin or Flagel), a stool softener, and an anti-spasmatic drug.

She also thinks that he may be reacting to the pain differently now since he's been mostly pain free. That maybe he is feeling more pain than is actually there? That his body is hyper-sensitive to his intestinal area and responds quickly to this? Not sure about all of that, but she didn't deny the pain and was not insulting about it. She did say there is a psychiatrist on staff at UCSF who is also a pediatric gastroenterologist who works with chronically ill UC and Crohn's patients. Reed is welcome to see him whenever he wants.

So...until the stool tests are in, we're in the dark. If things don't improve, than another MRE next week. At least we have a plan.

Next apt. is in seven days.

Kimberly
 
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"She also thinks that he may be reacting to the pain differently now since he's been mostly pain free. That maybe he is feeling more pain than is actually there? That his body is hyper-sensitive to his intestinal area and responds quickly to this?"

Kimberly,
I have heard similar things from our doctors. That their gut becomes hypersensitive. They put Caitlyn on Amitryptalline to try to help with this. I think it did work. She was on it for several years and we weaned her off recently since she is doing better. I was reluctant to try it at first but I think it did make a difference. Just something to consider for the future.
 
Thanks, Kim.

Reed's doing great and feeling no pain! I guess it was just a bug and not a flare. He's on Cipro. I even got a great hug and a very sweet smile flashed in my direction yesterday. :)

I still think the hypersensitivity thing might be happening. Once he was told by the nurse practitioner that it probably wasn't a flare, he improved- 9 hours after his first antibiotic pill. I wonder if the stress of it all made him ill, or if after six days, the bug left his system? Hmmm...

How will we ever be able to tell the difference between a flare and a bug? Curled up in a ball for four days on the couch, I thought it was a flare. Next time he travels, she's sending him with antibiotics.

Thanks for the warm thoughts and encouragement.

I'm feeling much better too!

Kimberly
 
Yay! So glad Reed is feeling better. Amazing how much better We feel when THEY feel better! How long will he be on the Cipro?
 

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