Heard from Doc today

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No bad reaction to sulfasalazine.

Latest update to GI. Frequency is 7-10 times a day. She is bleeding frequently, not the fill the toilet amounts but enough to be concerning. Mucus. Tenesmus. Oddly things aren't total liquid. There is urgency and there have been accidents. Today seemed a little better than earlier this week. Maybe sulfasalazine is kicking in?

GI would like her to add Imodium twice a day to try to get control over the frequency. Yeah, I think that is odd. Seems to me getting control over disease activity is a better way to lower frequency but what do I know. He did suggest Imodium last year saying we had to retrain the bowel. So maybe he is thinking the frequency is a retraining issue again. I tend to think it is an inflammation issue. Plus last year he told her not to use Imodium if there was bleeding but now all of a sudden it is o.k.?

Humira levels not back yet so no clue there.

She has her next infusion on Monday so will run blood and fecal labs then.
 
Seems to me getting control over disease activity is a better way to lower frequency but what do I know. He did suggest Imodium last year saying we had to retrain the bowel. So maybe he is thinking the frequency is a retraining issue again. I tend to think it is an inflammation issue. Plus last year he told her not to use Imodium if there was bleeding but now all of a sudden it is o.k.?
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I agree that there is an inflammation issue here. Could O ask about Entyvio at 600 mg again, considering symptoms are getting worse? Or upping Humira to weekly? I know Sulfasalazine is used in UC, but we have always been told it's a pretty weak drug and MTX is more effective, though that may be different for arthritis.

I hate to say this but I wonder if he's suggesting Imodium because she's kind of been through all the options he has? Remicade, Humira, Entyvio, Tacro, lots of steroids in different forms, MTX, antibiotics etc. Stelara or Xeljanz might be an option (I know Xeljanz is only approved for UC but considering he's giving her UC meds anyway, maybe it's worth a try).

Would O be open to getting a second opinion?
 
No second opinion because she knows what they will say. She is sticking with the GI she has wrapped around her finger.

He won't up the Entyvio because she got leukopenia or so he says.

I agree Maya....he is just throwing whatever he can at her to keep her out of the hospital and keep her somewhat comfortable. Plus I think given what happened the last time she switched meds he is scared to attempt a switch when these are sort of working....if you call this working.

He has increased her Humira to weekly and it was approved by insurance. She took her first weekly shot this weekend....so far nothing but it will take time.

Her most recent calpro posted and it is 2,746.

There is still a fair amount of room to increase sulfasalazine.

I am guessing he wants to wait and see if the weekly Humira helps so waiting for the next infusion and cal pro.

That's all folks!
 
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No second opinion because she knows what they will say. She is sticking with the GI she has wrapped around her finger.
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Doesn't she have to switch to adult care since she has graduated from college? All of my daughters' pediatric specialists only kept them till they graduated from college. M just graduated and she will be switching from her last few pediatric specialists soon to adult ones. But of course, she is several years older than O.

Really sorry to hear her FCP is so high...yikes. I'm worried that she may be heading towards a hospitalization or sepsis if she continues like this.

I'm glad he upped Humira - at least that's something stronger and more likely to work than Sulfasalazine! If that doesn't work, perhaps Stelara is an option? I know he's worried she will flare while you're waiting for it work, but she's flaring anyway. Plus, a couple posters (@Pangolin) have mentioned their kids responded to Stelara relatively quickly. Should help her psoriasis too...
 
O has now developed scleritis and lost another 5 pounds (now 112).

Her GI said her labs indicate she has a high burden of systemic inflammation and the scleritis is a sign go high inflammation in Crohns. He said she has no other choice than to go back on steroids.

He requested that he, her and I get together for a chat. We chatted.

He feels Entyvio is not working. Humira might be helping. She is on LOTS of meds with a high level of immune suppression and we HAVE to avoid steroids. This is a short burst to calm the scleritis but we need a plan.

She is running out of phamaceutical options. There is 1 option left (Stelara) and that has maybe a 30% shot at working. There are promising new meds in the pipeline and he doesn't want her to be discouraged but there is no guarantee with them either. It might be time we admit that surgery is our best option.

She wouldn't.

So new plan is to give weekly Humira 3 weeks to see if it works. If it doesn't go to scopes, screen for cancer, evaluate disease status. If no cancer and colon isn't a complete mess, then drop Entyvio and add Stelara.

She will need bridge therapy and it can't be steroids and she failed Tacrolimus. So EEN it is. She won't be home again until December so there might be quite a few flares between now and then. His suggestion is during scopes have g tube placed. She wasn't thrilled. We will see if she can sweet talk him into considering drinking it or NG tube.

Who knows. Weekly Humira might surprise us. Especially after this week of steroids. Stelara might surprise us. It might get us to another drug being released. O might surprise us and finally agree to surgery.
 
I know they work out ok for some people, but the safety of these anti-TNFs really concerns me. Honestly I just don't think they're very safe overall--I've just read way too many reports on forums about them inducing lupus or psoriasis or worse. My son had red eyes and eye pain from Remicade. We went to an ophthalmologist, and nothing but dry eyes was diagnosed. Everything went back to normal after Remicade. Still, I wonder if it would have progressed to scleritis if he'd stayed on the Remicade.

Don't let them tell you "this is just the disease getting worse" when it's really a drug side effect.
 
Thanks @Pangolin but honestly she has been on biologics for 10 years now. Her disease is raging. Fecal cal consistently well over 2000 and as high as 3650. Her symptoms are insane and she is rapidly losing weight. I am buying the scleritis is a function of disease activity. Plus the steroids are helping it.

She had way more side effects from Methotrexate than she ever did with biologics and even if the scleritis were drug induced like her psoriasis dropping these meds isn’t really an option lest her Crohn’s land her in ICU…again.

Dropping Humira for Stelara isn’t an option because then we are treating her with two drugs with the lower success rates and we already know she is a non responder to Entyvio so Entyvio and Stelara doesn’t make sense.

I find his strategy interesting though because all insurance is clamping down on biologic use these days. Denying short frequencies, asking people to move to bio similars.

We got Entyvio and Humira approved and we think it went through easily because Entyvio goes through medical and Humira through pharmacy benefits and the two sides don’t always talk. But Stelara will go through pharmacy and I am thinking not likely insurance will approve two injectables.
We’ll see.
 
We had to do an appeal for Stelara approval, and then we had to do a lot of pestering to get the Stelara injections properly authorized.

I can only speak of my own family's experience, but my son had more limited problems off Remicade with much higher fecal calprotectin (over 10,000) than he did on Remicade with fecal calprotectin under 500. In other words, the anti-TNF was causing various nonlocalized effects that could easily be confused with extraintestinal manifestations or disease worsening. We know they weren't simply aspects of the Crohn's because they got better after some time off Remicade. The problem with a situation like that is that there's a temptation to add more medicines in order to deal with the side effects caused by the first, and the result can be a cycle of iatrogenic harm. Doctors don't have a good understanding of this.

Anyway, Stelara plus Entyvio has some impressive reports like this one: https://www.hindawi.com/journals/crim/2017/5264216/
 
Oh I am so sorry to read this and what a frightening and miserable situation for you all.
I was very pleasantly surprised by Stelara but like all the drugs no guarantees.
Surgery might be worth putting off discussing until after scopes because then they might have more idea about how likely it is they could do something temporary and reversible which is easier to get your head around.
All I can bring to the party is the idea of adding herbs to the vegan thing she’s trying- I am not an expert by any means but have been drinking a gut soothing tea and slippery elm taking turmeric and reishi since reading a website by a NZ herbalist called Richard Whelan. Just watch if she uses turmeric (supposed to help general inflammation) can inhibit iron absorption. I have iron in the morning and turmeric at night.
I think a 3 week window will be long enough to flag if diet/ weekly humira/ any of the above are enough to start turning the tide.
Also feel like, as her symptoms are so harsh, liquids must be easier to digest a little? I know she isn’t doing ibd-aid and you’ve been there but the website has some good easy absorb ideas in their phase one.
Also, and this is totally none of my business, I read your post as if she is going somewhere til December? And can’t help feeling her body is waving red flags that she seriously needs to rest and put all her energy into healing. Sorry if that is the wrong thing to say it is meant kindly! I get the impression she is brilliant at soldiering on but maybe this is not the season for that.
Anyway. I will keep praying xx
 
Hmmm @Pangolin. Interesting article but unfortunately Entyvio is an epic fail for her. It has been a year and a half and she is still massively inflamed so we are dropping it. Not until we get insurance approval on the Humira/Stelara combo though because otherwise then she would just be left with Humira and Humira alone won't be able to cut it. Of course this could all be off the table if they find pre cancerous lesions or her colon is blown to bits. Then it will be straight to surgery.

@Delta_hippo Thanks so much for your post. We always take what you say as kind and caring. You are preaching to the choir here. I have been asking her to take a semester or summer off for years and she will just not have it. Ya know, 21 and invincible. I guess I probably drove my mother nuts with some of the decisions I made but I don't think the consequences were so dire.

For some reason I do have hope in Stelara. Maybe it was Pangolin's recent post, maybe it is the good stuff I am reading lately. I know the numbers aren't in her favor but 30% is 30%...She has to be in the lucky minority at some point right?

So Hubby has a plan. BRIBERY! He has offered her a trip to Hawaii before surgery and a trip to Disney after so she could finally enjoy the park without worrying about bathroom issues. Some kids get kittens (@Maya142) others puppies (@my little penguin) so I guess I can't complain about a trip....as long as I get to go also 😂
 
I know they work out ok for some people, but the safety of these anti-TNFs really concerns me. Honestly I just don't think they're very safe overall--I've just read way too many reports on forums about them inducing lupus or psoriasis or worse.
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Anti-TNFs are very safe drugs. There are now 20 years of experience with them. My children would not be able to walk without them - I can guarantee that. I have seen the damage done PRIOR to the existence of biologics - my husband has needed 5 hip replacements and needs his ankle replaced. He also cannot turn his neck properly because his cervical spine is now fusing. He can't walk for long distances due to his ankle. He had no treatment options except an NSAID. My daughters, on the other hand, even the one with severe AS, have damage that is not even close to comparable. It's painful and miserable for the younger one, but she has avoided major joint destruction and deformation unlike her dad (except for her jaw joints). That is due to anti-TNFs and other biologics.

And @crohnsinct's daughter nearly died - Remicade saved her at diagnosis. I'm not sure if that is a story you read, but she became septic. And she lived in remission for much of middle school and high school due to Remicade.

This is not the time or place to be arguing about anti-TNFs, when someone's child is facing very serious disease and multiple complications and possibly an ostomy - that is hard enough for a parent to deal with. No one chooses to put their child on two biologics. It is done out of necessity. Plus, O did not even develop paradoxical psoriasis - if that were the case, it would have gone away when she was on Entyvio.

ALL drugs have side effects. My daughter developed drug induced Lupus on Entyvio. There are also reports of spondyloarthritis/AS worsening on Entyvio. My daughter's certainly did.
 
I really am so, so sorry to read that O is in this position! Ugh! I really wish she'd catch a break! I'll be hoping/praying that the humira/stelara plan works for her! It's so much for O to consider, big decisions. :(


But, I do like the bribes! ;)
 
Hope the EEN buys you all some time to figure out what's going on and what treatment will work best. Hang in there!
 
@crohnsinct Bribery WORKS! I'm actually serious about the puppy or kitten - it helped my daughter's mental health SO much. It made something very hard bearable for her. No matter how sick she is, no matter how much pain she is in, the one thing that always makes her smile is her cats. Instead of focusing on the NJ tube, that summer she focused on caring for her kitten. And now whenever she is down or not feeling well, all the cats migrate to her room. I don't know how they know, but when she's having a bad day, they're there. And they truly always make her feel better. Her kitten actually is officially an emotional support animal, so she could take the kitten to school with her.

Anyway, back to being malnourished. It's absolutely true that it affects how you think. M was also not thinking straight due to malnutrition. She now says she really didn't understand how bad it was to lose so much weight. I think the only reason she agreed to the NJ tube was that her psychologist explained to her that her organs truly would shut down if she continued to lose weight - she had already been diagnosed with Refeeding syndrome and an arrhythmia, as I'm sure you remember. It was something one of her doctors had said, but I don't think she truly believed it till her psychologist (who works in the GI dept) explained that once your body has used up all your fat for energy, it starts using muscle. Your heart is a muscle. She was so, so thin - it was horrifying. She had lost 20+ lbs and she didn't have any extra weight to lose to begin with. Her life changed dramatically because of the tube. She could not believe how much better she felt once she was getting 2000+ calories per day and was actually absorbing them. Her bone density increased - from osteopenia to NORMAL bone density (on the low side, but still normal!). Bone density can increase into your early 20s for females - O does not have to live with brittle bones.

And she had all this extra energy!! She just couldn't believe how good she felt. She was almost bed bound - just so tired all the time. School became easier. She had been doing well, but once she got the tube, it was a lot less effort. She stopped losing hair. Her period came back after a year or two of no period. It really, really was life-changing.

In O's case, perhaps she could do 10% food to make it a little easier on her? M had a VERY hard time with EEN but part of that came from the fact that she has a J tube and so her stomach was always empty and she was always starving. It was absolutely miserable for her, but with a G tube, O should not have that problem.

Anyway, I think she agreed because she trusted her psychologist (in addition to the promise of a kitten, of course!). I honestly think O needs to start preparing for surgery and one of the ways to help her adjust is seeing a psychologist regularly. At first, they don't need to even discuss surgery. She just needs to be able to talk through all of this because it is a LOT for anyone to handle. It will take time for her to trust her psychologist, but she needs help processing all this. I actually think placing the G-tube is a great idea because once her weight goes up and she is able to think more rationally, then she may have an easier time with thinking about the ostomy.

An ostomy is hard at ANY age - it's a huge change for her. But it could greatly change the quality of her life. I know she has lived with awful symptoms for a long time, but can you remind her how her life was not controlled by the disease when Remicade was working? She will be able to do SO much more when her life isn't ruled by Crohn's. i mean, look at what she has accomplished with raging disease - without it, I think the sky's the limit. She'll be able to go running without having accidents. She'll sleep through the night. She won't be tired all the time.

Sending big hugs!
 
Hi gang!

O finished the prednisone last Friday. Over the weekend she lost her appetite, lost weight, frequency went up and more bleeding.

Yesterday and today she felt bad. Dizzy, lightheaded and bad headache.

Today she checked her BP and pulse and her pulse was between 123 and 144. She wrote to GI.

She is admitted. The plan is to get fluids and a blood transfusion.

They are placing an NG tube tonight.

She will have scopes tomorrow.

Originally her GI wanted her to get a G tube during scopes but the attending feels like that is too drastic and that with a patient like O in the condition she is in that EEN might not even work so why do a surgery for something we don’t know will work. She also said that Humira weekly might work and we might not even have to do EEN.

So she will get NG and training and give it 5 weeks. If at the end of that time she is doing great, she will likely go in for G tube. If not, idk what.

Of course if we add EEN and weekly Humira at same time we won’t know which thing helped but I guess since she is inpatient again who cares. Just make something work!
 
Hugs to you and her
Normal protocol is ng first
See if it work
Then g tube
But she needs een from a nutrition standpoint
Until she is stable
Hugs 🤗
 
sorry that she is doing so poorly, but I think the plan sounds good. And in our experience, treatments can be synergistic, so I think it's great to do EEN and increased Humira at the same time. The increased calorie absorption due to EEN will probably make the more frequent Humira work better, which will reduce inflammation, which will increase the absorption of nutrients which will...

Fingers crossed that things look up soon.
 
Well she threw up three times with the NG tube in and at that point it half came out and the doc figured she would keep vomitting and no prep would stay in so just pull the tube and let the kid drink prep and we will figure out next steps tomorrow with the GI team.
 
Oh my...hoping they get things under control and area able to scope - sounds like there may be issues all over and not just in the colon.....please keep us updated!
 
Oh gosh. Sounds like she is in the right place. If there are other signs of possible perforation (fever, high crp) then they might decide it is safer to move straight to surgery rather than scopes so brace yourself. Poor girl xxx
 
This is scary. I hope they can stabilize her and figure things out there. Maybe full TPN/gut rest could allow a little breathing room while the very tricky balance of medicines is worked out?
 
Sending prayers and healing energy.

Can’t tell you when I was last on this site, many years. Something made me log on today. So glad I did so I can join Team O.
 
Scope done. Last scope was 15 cm's of severe damage. This one is 30 cm's.

Last scope TI was fine. This one the TI was frozen open. Could be stenotic. We are going to watch it for now and wait and see what biopsies say.

She was in pretty bad shape. Required fluids, stress dose of steroids, bleeding etc.

Found a polyp but likely inflammatory.

Need to wait for biopsy results.

Staying the night for observation given BP trouble.

She is scheduled for G tube surgery on Monday. We can be discharged and come back.

The team feels she is not a good candidate for G tube and EEN controlling disease. They feel strongly that if she is going to have surgery the better option is a port with TPN and the diversion. Or even just the port with TPN as then we are bypassing the GI tract altogether.

O signed the consent for G Tube but we will all talk again tomorrow before discharge. She can eat for now as she will be doing 8 weeks no food.
 
Her GI just emailed me. The port and TPN is a Gard no from him given she is away at college. Cross that one off the list.

So now we just wait to get Humira weekly approved and see if that and EEN works. If so, wait to see if we can stop EEN without her flaring. If recant then try Stelara I guess.

She has a virtual visit with GI next Friday.
 
Hi, this is Pangolin's wife. He sometimes shows me O's updates because he worries about her, and so many of them are so heartbreaking.

I stole the phone from him because of my utter dismay that O's doctor would refuse to treat her properly simply because she is in college???

Is that even legal?!

She has been literally vomiting blood, and they want to discharge her from the hospital and have her try to put food through there? 😢 That's not right. Shame on them. They need to heal her before they can do that. I know they'd need to keep her in the hospital to do a port/TPN, but if that's what she needs, then that's what they should do.
Poor, poor O. Of course I don't know what's best for her. I'm not even there. All i can say is good luck.
 
That poor kiddo
Second the if they are recommending tpn due to severity then that is what she needs
Regardless of college
 
I don't even know what to say on this. Please know that we are here for you - you can PM or email anytime. Us parents have to stick together. No matter how old how kids are, I know how it feels like to be worried sick. Thoughts and prayers to O..
 
Thanks guys.
I don’t think it’s so much that her GI is not choosing to treat her appropriately as much as she is determined to go back to school and if that is the case then she cant have a port because the infection risk is too high.

Unfortunately, I think the bad decision making is on O but to be fair she has made it this far with her bad decisions so hard to argue with her. Although it would be nice if the team sat her down and had a long hard discussion with her and tried a little harder to get her to see the benefits of surgery



I can kind of see her point. She says she is going to have to have a colectomy mine as well try everything in the book and delay as long as possible. She says nothing she is doing is making it more likely that she will end up with colectomy (ie refusing meds) just that they will take more out. She says when removing colon it doesn’t matter if they take part or all (actually surgeon said the same thing) as long as some of rectum is left. So if this helps her get to that decision and keep her life moving along to when the surgery is “convenient” then so be it.

She knows she is taking the risk that it will be emergency surgery and she is ok with that and points out that she is getting better about raising the flags ie:this time with the heart rate etc. The old O would have just powered through until things were super bad.

The funny thing is she would rather get a g tube than out in an NG every night. And we don’t even know if EEN will work! Seems like a lot of work for little payoff. I am going to have her try Kate Farms this weekend. Do those taste better than Boost or Ensure? Maybe if she can drink those we can call off the tube surgery.
 
I don't know if I'm thinking about this the right way, but from what you've said about O in the past she had always refused EEN. From the outside looking in, if she accepts the G tube then at least EEN will get a proper chance with no equivocation. I'm not sure you should help her look for other options. Also then she gets an elemental formula which may help her absorption of nutrients.
 
Per my kiddo
Boost /ensure are the best tasting
Maybe try kids boost or pediasure instead
Lots of flavors there
He hated Kate farms could not stand the taste
Also hated orgain
What I would suggest is setup sipping cups
Worst tasting first
Best tasting last (pediasure /kids boost )

some only liked resource breeze more juice like
Or the ensure clear from Abbott more apple juice like
Ds liked those

Talk coffee styrofoam cups with lids
Fill cup with crushed ice to the top
Put lid on
Straw to back of mouth and pinch nose
This by passes taste buds

added ah-Alaska organic choc syrup covers all bad taste
 
Agree with pilgrim
Een by g tube might be most likely for success
As in at least the formula will be going in
So you know

No battle no refusal since so far that has been her issue for years
Refusing ng and refusing to drink
 
@Pilgrim good point. I bet her GI would agree. Ok. You just saved me a boat load of money buying different formulas.

She says she can’t believe we are at this point. Wants to “double check” with her GI that the tube surgery is necessary now. Maybe give weekly Humira (which isn’t even approved yet mind you) a chance to work THEN do tube.

Ummm yes kid. You are at that point. Hospital admit. 112 pounds. Raging disease. Problems during anesthesia. You need nutrition.
 
...and I don't want to go there but remember that awful summer? A few days after scope, she was admitted because her BP dropped while getting the transfusion outpatient. CRP high, BP wonky. They discharged her and she got on a plane that night to go back to school. The next week she was septic. But they won't remember. You know what they say...those who don't remember history are destined to repeat it!
 
We had an infusion yesterday, and good labs. I was thinking about you guys and felt guilty. Hoping you can get her stabilized soon. I do like that she sounds like she is still being a PITA with all of this..kids dont skip a beat:LOL:
 
LOL @Jbungie!

Don't feel guilty in the least! I want everyone to have great labs and be off enjoying their lives. No jealously here. It feels my heart with joy and optimism. We celebrate everyone's success as if it is our own around here. But I guess the opposite is true also and we share the sorrows and trials.

That's what makes this community the best! I honestly would be in a home now if it weren't for you guys!
 
I hesitate to post O's journey because I fear it will scare newbies. However, as bad as it is, I think people should see how much she is still able to accomplish and that even severe Crohn's is not the end of the world.

I also like to detail all the options we are given and what we try so if some day someone else is in our shoes they have something to reference to help them have conversations with their docs.

O.K. maybe it is really more of a written record for me because my brain is a sieve and my recall crap.
 
I’ve been following along, and some of the things you are going through with O sound sooooooo familiar from when I was younger!!
Hopefully things will get sorted out and nothing more make occurs.... continue to be an advocate, listen and give your input and encourage her to listen to the doctors.... and as you are doing, be there.
It took me quite a while, and quite a few hospital stays to finally ‘grow up’ and start taking better care of myself..... and here I am still, turning 50 this year and I’ve had severe Crohns for over 40 of those years.....
 
More discussions, more info.

O was discharged tonight.

Attending came in to talk more. She explained that the ileocecal valve is likely a stenotic stricture.

More concerning was a small area of narrowing in the colon that was a little difficult to get through on way in but very hard to get through on way out. This bothered her and she spoke with colleagues. They now want O to get an ultrasound to evaluate if it is stenotic or inflammatory. This info might change the surgery discussion and maybe a resection if just that part can bring her a lot of relief. They are hoping u/s will also be able to evaluate the valve

They didn’t biopsy the polyp because they were concerned about perforation given the condition of her colon. They also didn’t do a “turn around” (don’t ask me what that is) again because of risk of perforation.

So basically her disease has kicked it up a notch and on top of being severe refractory she now has stricturing disease.

They also did a calpro while she was there and it was >3000. So for three months her calpro is about 3000.

They want her to use rectal therapy to increase QOL but insurance is balking.

She will also undergo an MRCP for evaluation for PSC because she is high risk due to family history and colonic disease.

But we are home. And going on our trip. And she is talking calmly about colectomy.

G tube surgery scheduled for Tuesday after next.

Still waiting for path results of the biopsies they did take.
 
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Many hugs to you and her
Hope she has a safe trip and does a lot of thinking
Really hope the ultrasound gives answers so the team/surgeons can present her with the best options available to improve QOL as well as her health
 
Oh my goodness, things went downhill fast! Poor O!
I am REALLY concerned about her going back to school. Her symptoms are very similar to my daughter's - the ones she has because of adrenal insufficiency. The fact that she needed a stress dose does suggest that. She needs to be see an endocrinologist and put on hydrocortisone. She also needs to be trained for give herself an intra-muscular (big needle) shot of Solu-Cortef in case of an adrenal crisis. Are they putting her on hydrocortisone at the very least?

I do honestly think she should be kept till things stabilize. Last time they let her leave and she became septic and spent what, about 30 days inpatient after that?

I think you're at the point where we were with M - too malnourished to think straight. She let herself get really sick before she agreed to an intervention (an NJ tube and then a GJ tube). And she regrets it now. Also, I know a G tube sounds like a big step when we talk about EEN, but it's a lifesaver and honestly, much more comfortable than a nasal tube. It can be changed at home. I also think it gives EEN a fighting chance because otherwise she'll have to force herself to drink formula and that will be hard on her. It's also an easy surgery to undo, should you not need it in the future. They just remove the G tube and it heals right up.

I am REALLY glad O is ok with a G tube (well, sort of ok). It really is a minor surgery. I do think she should be monitored in the hospital as you start feeds because that's when Refeeding Syndrome comes up. That's when it happened for M - she was about 80 lbs and so malnourished. She was supposed to be watched for 3-5 days for Refeeding syndrome but the first two days she did fine and they were talking about discharging her if labs were ok on day 3.

Well, on day 3, labs were most definitely not ok - potassium and phosphate and she was put on a heart monitor that showed an arrhythmia. She was given IV electrolytes. She ended up being inpatient about 10 days I think. O is probably even more malnourished than M was, plus she likely has adrenal insufficiency and she has a colon in really bad shape.

I can't believe they are letting her even leave the hospital!! I don't blame her - yes, she's 21 but we all know young adults do not understand risk vs. benefit the way adults do - their prefrontal cortex develops later, around age 25-26 (my girls use that fact to now justify prior bad decisions LOL).

But her GI is being downright irresponsible. If she needs TPN and he doesn't think it's safe for her to be at school with a port, then he needs to tell her defer the semester/year!!! Or that her colon really has to come out NOW. That if she becomes septic at school and is hospitalized there, they may remove the rectum leaving her with a permanent ostomy, not do the surgery laparoscopically (increasing risk of infection) or may be unable to handle her complex case.

She needs to understand that she is really at risk here - just adrenal insufficiency can be fatal. M is told to stress dose whenever she has significant diarrhea, and by that I mean if she has more than 5-6 BMs, she has to stress dose - 30 mg of hydrocortisone 2x or 3x per day. Then you have Refeeding syndrome - if she's not watched for that, that could be fatal. And she's probably at big risk for sepsis, given that state of her colon.

I think her GI needs to explain to her how serious the situation is - you don't want to get to the point where she's too sick to survive the surgery. What is the point of grad school then? He needs to tell her to stay home and get healthy because the world needs O - she's going to go on to do great things and I have no doubt she will make a HUGE difference to children with special needs, but she needs to be around to make that difference.

I think she's making great steps by at least talking about the colectomy. Her GI, on the other hand, is on my hit list. He needs to talk to O and insist she stay. That's how she got this point - he let her get here. O could have made better decisions, but her GI didn't help with that.

Sending hugs to you and O!!
 
O finished the prednisone last Friday. Over the weekend she lost her appetite, lost weight, frequency went up and more bleeding.

Yesterday and today she felt bad. Dizzy, lightheaded and bad headache.

Today she checked her BP and pulse and her pulse was between 123 and 144. She wrote to GI.
Click to expand...
These are all adrenal insufficiency symptoms...she should really talk to her GI. He could at least tell her to stress dose and take a small dose of hydrocotisone or Pred (the physiologic dose is 4 mg pred, if I'm remembering correctly), though normally you're referred to endocrinology and they do a work-up. We had to really push to get M's GI to refer us to endocrinology and once we saw the endocrinologist, she went off on a rant about how GIs and rheumatologists overuse Pred and taper much too fast etc. It's really a lot better to have an endocrinologist handling that side of things.

You're going on the trip with her, right??
 
Thanks @Maya142

The attending did wonder about adrenal insufficiency so she tested her cortisol first thing in the morning and it was spot on. IDK if that one test is enough to cross it off the list but that’s what they said.

Ironically, this is how that horrible summer started last time. Blood transfusion for feeling icky. Low BP led to admit. Kept O/N for observation. Released next day and was in a plane to school that night. I went with her and that’s when the damn burst.

I am going with her this time also. To help with the moving/decorating. I asked her GI if he was ok with it also and he said yes and if she gets inflamed while there we will just go on steroids. BUT SHE IS GETTING G TUBE TO AVOID STEROIDS! and SHE IS HAVING SURGERY!

I just don’t get it.
 
So there are two tests - one tests if you can make enough cortisol for every day. The other tests if you can make enough cortisol for when your body is stressed and that’s called an ACTH stimulation test. My daughter failed the first, so we never did the second - we just assumed that if she can’t make enough cortisol daily, she certainly can’t make enough to deal with stress. It sounds like O passed the first test but the second one wasn’t done.
@my little penguin is the best person to tell you about the second test because her son had it. Or perhaps @xmdmom can chime in?

I really, really don’t understand her GI at all. I don’t get why he doesn’t tell her that at some point, you have to put your body before school. Get healthy first - that needs to be the priority for her safety!
 
So yes they checked her cortisol levels while inpatient but
She just got a huge bolus of iv steriods during the scope the day before
So they should know that’s in her system
You can’t check for acth unless you have been off steriods for 8 weeks
Cortisol draw has to be at 8 am exactly not 9 am not later
Abd you can’t have steriods the day before by iv
That’s in your system did at least 2-3 days
 
“An isolated serum cortisol is often insufficient to exclude adrenal insufficiency”. From this .article.

A cortisol level on the lower end of normal would be abnormal low if the person was stressed/significantly ill when the sample was taken.

I think it would be worth finding out the actual cortisol value.
 
She had the test done at 7:23 a.m. and it was the day of colonoscopy so before the stress dose of the steroids. But she is also just off the 7 day burst of prednisone at 40mg so IDK if that might have interfered also.

Her value was 12.2 and normal is >2. So seems pretty o.k. but I am not a doctor.

There was this warning:

Clinical consideration: Biotin has been identified by the manufacturer as a potential interfering substance. Higher concentrations of biotin may be found in multivitamins, hair/nail supplements, and workout supplements. If the result does not match clinical observations and patient is taking a supplement containing biotin, repeat testing after patient refrains from the use of supplements for at least 12 hours.

They gave her a multi vitamin that contains 33% of the RDA of biotin but I don't know if that was enough to interfere with the test.

Her GI is very nonchalant about adrenal insufficiency.
 
So normal cortisol one of doesn’t show how her body does when it’s stressed
Ds produced enough cortisol on a day to day
But failed acth (when stressed he did not produce enough extra cortisol )
This meant day to day he did not need hydrocortisone
But any extra stress (ie scopes , broken leg , severe illness ) and he needed a stress dose of hydrocortisone for a few days

that said you can’t test acth unless your off steriods for at least 8 weeks

he eventually passed his acth by avoiding steriods for over a year but any addition of steriods and he gets tested again .
 
If she's just off a steroid burst, then usually they put a few weeks between stopping steroids and testing. But it does sound like she may need stress dose steroids even if she doesn't need them daily like M did.
I can't believe adrenal insufficiency is treated nonchalantly - we know two kids who went into adrenal crises and nearly died. One had JIA and the other had JIA and IBD. Pretty scary.
 
I wish I could say or do more than just share prayers and hope that she feels better soon! I do agree that she needs to put health first but we all know that... it's the 20-somethings that don't believe us! Ugh! I just hope that she understands that she needs to take care of her health right away, that her GI pushes her for the treatment she needs and that she has some improvement!! Just feel so bad that she's dealing with so much. :(
 
O is pretty rough but staying out of the hospital. She hasn't had fevers and isn't going off the rails so that is good. But super thin and going about 15 times a day.

G tube insertion is planned for Tuesday. Might be outpatient. They aren't really clear and I am not sure who is calling the shots orwho is directing the feeds right after the surgery. Her R.D. gave us a plan for once she has transitioned but not clear on the "transitioning" part. Her R.D. told us just to call her if they let her go home right away.

The surgeon doing the tube is the same surgeon who would do the colectomy. We all figured good for them to get acquainted/used to each other. He is also going to do a flex sig while she is under. This way he can check out the narrowing and let the GI know what he thinks. GI isn't so convinced it is a stricture. He thinks it is more just "tightness" do to extreme inflammation.

Biopsies are back and no dyplasia. Just inflammation in TI, transverse, descending colon and rectum. Quiescent Crohn's in cecum.
 
Just wanted to wish you all the best for surgery tomorrow from here in the UK - hope it goes well and she can put some weight on.
I have had two surgeries one emergency bowel resection while septic and weak from weight loss and one ileostomy reversal whilst healthy and having eaten well albeit low fibre foods. The first was traumatic and awful and I wouldn’t wish it on my worst enemy. 3 weeks in hospital, weeks at home before I could even hobble out to the garden, needed help to get upstairs or in the bath. The second was an absolute walk in the park by comparison, one week in hospital, couple of days feeling wobbly at home.
So my strong advice is, depending on what things look like tomorrow and how it all pans out, push for the planned surgery/ Disneyworld/ kitten bribes and try and discourage the let’s-wait-til-I-fall-over plan.
I know it isn’t your call and I’m sure O doesn’t want to hear the risks but just throwing my experience into the mix in case it helps her not go through what I did xx
 
Awww you guys! You are the best!

She isn't scheduled to report to hospital until 1:50 so I figure tush on the table at about 2:30. It will be a while before you hear from me tonight but I am feeling pretty positive today. Looking forward to the surgeons view on the flex sig more than anything.

@Delta_hippo Thanks for your perspective. I have taken to showing her the responses so that way the info is coming from other people and not just mom. I think she is appreciating hearing it from others.
 
I have been lurking your post and following O's journey. Just wanted to wish her the best and hope she gets some relief soon. She sounds like quite the trooper.
 
Hi guys! Your thoughts and prayers worked! Nothing but good things to report here.

Surgery was delayed. Then she had blood pressure problems with anesthesia again so they had to stop everything, take a break, gave her fluids and steroids and then restarted. After the restart she did great.

Surgeon did a very good job. The sites look great and he placed a Mickey button right away. O was VERY happy about this.

Surgeon was able to do the flex sig and said there are no strictures and that he got pretty far and things looked good. That "good" I think is from a surgeon's point of view meaning no need to resect due to stricture and no emergency surgery needed. He did say that the g tube is a very good first step toward the colectomy and that he felt O should be considering the colectomy permanent given the condition of her rectum but that we would try to reconnect and if it works then it will be a very nice surprise. But for now he just wants her to concentrate on EEN, regaining her weight and getting healthy.

She was admitted and is NPO until the morning when they will start her tube feeds.

She is resting comfortably and refusing pain meds.

She is in VERY good spirits and telling me that now she is not as afraid of the colectomy but that she is really hoping the EEN handles the inflammation and she can cycle on and off to mange disease activity until the new meds come out but she is at least willing to consider colectomy.

Thanks for all of the support!
 
Hugs to you both! I'm glad it went as well as possible. I hope it brings her some relief! And, it would be amazing if cycling EEN would mean the colectomy could be avoided! All fingers crossed!!
 
Way to go O!!! I hope she stays comfortable!! She is really amazing - EEN is hard and she is so brave for trying it again.
 
Doing o.k. Bit of a mix up on "the plan" but got is straightened out and first feeding went in at 6:30 p.m.

She is a little more sore today and getting up and down is hard but overall doing o.k.. Been 3 hours and tolerating the really slow feed well.

Onward and upward!
 
Feeds are going great. She is at 50ml/hour so 5 cartons. Goal is 7 so we could do the rest of the ramping up at home.

They are starting discharge paperwork and trying to find us supplies. No sense in going home if we don't have a pump...duh!

Pain is really bad and now she isn't so keen on colectomy.
 
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Yeah but you know how THAT goes. They tell you about discharge at 8 a.m. and you are home by 8 p.m.! We should start a pool!
 
So if they told you at 8 am
It will be close
Getting the pump /formula to your house by tomorrow is the sticking point
3pm pacific time discharge at the earliest
Probably noon pacific tomorrow given the pump need
 
Pain is really bad and now she isn't so keen on colectomy.
Click to expand...
Abdominal surgeries do hurt. Have they been able to control her pain? She really should not be discharged unless her pain is controlled - and of course unless she has supplies for feeds! What formula is she on?
 
Tried a bolus feed of a whole carton over 10 minutes and she vomitted. Waited an hour or two and tried another bolus over an hour and she made it all the way to the end and vomitted. It looks like it is a volume problem and not a rate problem. So they want us to stay another hour and then we are going to try a half a box over a half hour and see how that goes. If that works then we have a good plan for 10 hours overnight and 5 bolus half hour feeds during the day. Not ideal. She will be tethered to the pole and pump most of the day. Even with this new plan the best she can do is 1,200 calories. But it is just the beginning. It will get better. Her stomach has probably shrunk and the inflammation in her intestines is likely slowing everything down.

So we blew right by Jbungie's 2pm est estimate.
 
Why aren't they giving you a backpack?? M has never done bolus feeds so has always had to be stuck to the pump. But with the backpack, it's very easy.
This is the one M got - the mini for the Enteralite Pump: https://mdmaxx.com/products/moog-pc...ChNlnePnfV4mknLnYTEsmn-MgBmzYCCRoCSd4QAvD_BwE

Your DME should supply it and they pay for it. But they are available on Amazon I think.

You can also buy modified backpacks on Etsy. There is absolutely no need for her to be tethered to an IV pole. M's feeds were 20 hours a day since she couldn't do bolus feeds.

It is absolutely true that your stomach does shrink, so it will get better. The other option is replacing the G tube with a GJ. That doesn't mean an extra surgery, just that there will be a tube threaded into her jejunum. M was throwing up continuous feeds so she really needed one. She was able to get to 100 mL/hour through the GJ and so she got 2000 calories. 1200 calories is very low. They could also try a denser formula like Peptamen 1.5. Some people have trouble tolerating it and others don't.
 
@Maya142 They are giving her a backpack but I think they actually meant tethered to the tubing. They said she is going to want to get dressed, run around, shower, swim etc. I feel like they are just trying too much too soon.

She is on Ensure or Boost plus so I think it is a denser formula but given the stomach shrinking and the intestines being so inflamed it is just too much!

I said, Just let us go and we will figure something out at home. Even if I just keep her at 50ml/hr for a while...and they said, "no then she will have to be on it all day". Ummm so? Then we will slowly ramp up. I think her ultimate goal is 1,680 which doesn't seem like a lot to me but just a forum reading mom.
 
Everything about this is crazy. They put in a G tube but they're giving her Ensure? She should definitely be on elemental or semi-elemental formula with the state of her intestines. No wonder she's feeling nauseated. Even if she can tolerate a really slow drip of Ensure, it's not going to be absorbed nearly as well as a broken down formula.

My daughter got super nauseated with polymeric formula. Next we tried Peptamen jr, and it also made her sick. Turned out her body didn't like the inulin that it contained. She switched to adult Peptamen 1.5 (which didn't have inulin) and could tolerate that as long as the rate was slow: 60 ml/hr. Her doctor wanted her to get 2000 calories a day, so she had to be hooked up for 22 hours a day to get that. She was 12 and just 70 pounds, so it seems like O should be aiming for at least 2000 calories.

Big hugs--hope this all gets worked out soon so O can get some calories in her!
 
They're giving her Ensure plus instead of a semi-elemental formula?!! Of course she's nauseous! I would definitely push for Peptamen if she cannot tolerate Ensure. There is Peptamen 1.5 - that makes more sense. Or even Pediasure Peptide. The advantage of the G tube is that she doesn't have to taste the formula - they should give her something that is easily absorbed!! This is crazy!

M did better on a less dense formula but of course that meant a higher rate through the GJ tube. We first tried Peptamen 1.5 (adult), then went tothe regular Peptamen due to nausea and eventually ended up on Neocate. Neocate is for kids though, so once she switched to an adult GI they put her on Vivonex which is elemental.

I am a bit confused about what they mean about getting dressed - M did EEN for 16 weeks last summer and I promise you, she wore clothes! We stuck a command hook on the inside of the backpack, and wrapped the excess tubing around the command hook, so there was no tubing trailing on the floor - partially because I didn't want her to trip and partially because her kitten loves chewing on the tubing and loves Neocate :rolleyes: (that cat might be the only creature on the planet that likes the taste of unflavored Neocate!).

I agree - they need to take it slow. Let her put on some weight before starting to run or swim!! And of course you can disconnect to shower.

Ramping it up slowly is a good idea. It can be done inpatient or outpatient. Given how unhelpful the hospital is and that she'll rest better at home, i'd do it outpatient. They did make M stay until she got to the goal rate but that was because of refeeding syndrome.

1600-1700 calories seems really low for a kiddo who needs to gain weight. Has she seen a dietician? M was put on 2000 calories and we had to actually up it to 2200-2400 calories before she started gaining weight. She was 82 lbs when we started and 5 months later was 100 lbs. They should at least aim for 2000.
 
I would definitely email her GI ASAP or ask to see the RD - this is just nuts. Poor O!! Please tell her it is trial and error when you're trying to find a formula. She won't always be nauseous- you will find one that works. She probably just needs a different formula!
 
Staying another night. She tried the half carton over half hour. She didn't vomit but felt very sick. They gave her the option to go home or stay. She said she was just really scared to go home. IDK why, what's the difference, you vomit at home or vomit here? We can play more games with speed, length of time and have more control at home. But here she has the comfort of the nurses thinking of options etc.

I asked about another formula and they looked at me like I had three heads.

The intern came in and told her there was no pressure to go or stay. She also said there is no pressure to do the feeds any way or get a specified number of calories in. She said go as slow as you would like, do continuous or bolus or whatever works for you. She is sweet...but she is an intern so doesn't have much of a say.

O decided she would rather stay. She will be less nervous which will make her stomach calm and if the evening and night are uneventful then she goes home on a good note rather than unsure footing.
 
Good for O!!! Could you try continuous feeds at a low rate for 24 hours? Once her stomach is used to that, maybe you can try bolus feeds again.
Can you ask the intern for a consult with a dietician? A dietician will know different formulas.
 
I keep meaning to ask - how's her pain level? Is she feeling any better?

Also, is she taking pain medication (besides Tylenol)? Just wondering because that can certainly cause nausea and vomiting...If she is, they could give her Zofran with it.
 

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