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Heard from Doc today

my little penguin

Moderator
Staff member
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
 

Maya142

Moderator
Staff member
Pain is really bad and now she isn't so keen on colectomy.
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?
 

crohnsinct

Well-known member
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.
 

Maya142

Moderator
Staff member
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.
 

crohnsinct

Well-known member
@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!
 

Maya142

Moderator
Staff member
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.
 

Maya142

Moderator
Staff member
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!
 

crohnsinct

Well-known member
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.
 

Maya142

Moderator
Staff member
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.
 

Maya142

Moderator
Staff member
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.
 

crohnsinct

Well-known member
Time out! The formula they are using is 350 calories per carton so 5 cartons (what they want her discharged on) is 1,750 calories. The goal of 7 is 2,450 calories per day. That sounds more like it.

I have asked to see RD but of course they are not around. I called her regular RD to see if she will intervene on her behalf.

Pain is getting a tad better. She is taking only Tylenol. She did take an oxy night before last but that didn't help so she refuses to try anything again.

As much as I wanted to go home, I think O is right. Better to go home feeling like, "yeah I got this! let me go" than unsure and scared. I think tonight will seal the deal for her.

Ironically I spent my birthday in the hospital that summer she was really sick and I think she was just really pushing herself to get home for me. Like who wants to go home and cook, clean and do laundry on her birthday? No thanks! I will stay here and continue getting my door dashed meals and quiet time.
 

Maya142

Moderator
Staff member
Oh that's a relief! At least she is getting 1800 calories now and you can go up to 2000+. That makes much more sense. I hope you are able to see the RD but if not, they can change her formula once you are home.

I absolutely agree she should not go home when she's scared and unsure. I'm SO proud of her for staying. That shows maturity. M says she deserves a kitten (well, actually M said she deserves two kittens, but I didn't think you wanted to hear that 😂 ).

If the pain is bothering her a lot, then I would ask to speak to the intern - they can switch pain meds. They could try Morphine, a higher dose of oxycodone or even Tramadol. She doesn't have to tough it out if she's in a lot of pain. I know she is insanely tough, but she doesn't always have to suffer. They can make her comfortable.
 

crohnsinct

Well-known member
Definitely going home! Since MLP didn't specify a date I guess her 3pm estimate counts as closest! We are doing her last bolus feed here now and then will hit the road as soon as paperwork is complete and formula arrives!
 

crohnsinct

Well-known member
Weekly Humira was approved on appeal! Woohoo! The two hospital admissions helped no doubt. But being fair, I am actually shocked that insurance keeps approving all this stuff and doesn't say, "enough already pull the plug and do surgery". That would be so much cheaper for them.

Home feeds going well. Surgery healing going slow.
 
Glad things went well 😊 yes vomiting after abdominal surgery is a special kind of misery, I hope that has settled down. I remember oxy doing sod all and giving up then a nurse saying you have to keep going to get a good level in the body rather than one off so I did and then it was magic, to the point I refused to give up the machine that supplied it and sulked for a day when they refused to refill. So yes the pain is miserable but it can be reduced a good amount with the right stuff.
I hope O is managing to get some calories in and rest a bit. In terms of her plan to stave off colectomy there’s also stelara stlll a possibility to assist if the een can wrestle the inflammation down. Hopefully the weekly humira will kick in too.
I really hope things are starting to settle, she deserves a break xx
 

crohnsinct

Well-known member
Hey y’all! A bit of up and down here. Mostly O losing weight and feeling faint/dizzy. Did labs and everything was spot on so not electrolytes or anemia. Left with nothing else other than a vagovasal response to increased BM’s.

Things straightened out and she has gained 4 pounds (from her low after surgery). She was doing a 10 hour feed of 4.5 cartons overnight at 108 ml/hr and then a half carton half hour bolus at 8:30, 11, 1:30, 4 and 6:30.


She was going to the bathroom too many times to count and still bleeding. Her RD said that sometimes the concentrated formula causes diarrhea for some people. So now we are trying the less concentrated formula but that means more volume. So she will be connected 19 hours continuous. She said she thinks that might actually be easier than the constant bolus feeds with all the filling, priming, flushing and washing.

infusion is next Monday so hopefully we will have a new calpro soon and be able to see if this is helping at all.

Thats it for now
 

Maya142

Moderator
Staff member
YAY for weight gain!!! Way to go O! We also had to switch formulas to deal with diarrhea. In our case, she went from Peptamen 1.5 to Peptamen and then to Neocate which she stayed on for several years. Now she is on Vivonex which is elemental but for adults. Neocate is formulated for infants and kids so it had more carbs and certain vitamins and not enough protein (I think - not totally sure) so she was switched to Vivonex last year.
 

crohnsinct

Well-known member
Things are not better.

Frequency still through the roof, still bleeding.

She can't go back to school like this.

Message in to RD and GI. They advise to stay the course and hold overnight feeds at 170ml/hour. She has an appointment on Friday so we will discuss more then. Hopefully we will have labs back and can make some decisions. I just don't see how asking the kid to continue going to the bathroom 20 times a day and hope the formula kicks in is a good plan. Wednesday will be three weeks. My patience is wearing thin.
 
Poor old O, this wretched disease. I remember you thinking a while ago she might be steroid dependent I don’t know if it’s worth another short course to calm things down while een settles - I don’t know how long they expect een to take to start working. There is a website by a retired English GI John Hunter where he writes about the different types of formula, I’ll try and find a link, but you probably know it all already.
 
Here you go

Depending what one she’s on says could take 6-8 weeks to kick in

Will keep hoping and praying and sending love

I also wondered if she needs (or is on) vitamin or mineral sprays given how quick everything is going through her. Garden of life do a good b12 one I haven’t tried their others.
 
Here's how I see the difficulty for O:

Ideally, you could take an incremental approach. You could start from a baseline and add EEN, see what it does and whether it's enough, then add another treatment, measure changes and adjust dose, add another, etc.

Unfortunately, right now it's very hard to take an incremental approach because you can't really get to a baseline and because O already has a number of treatments going on. So you're looking at turning multiple knobs at once, and it can become very difficult to isolate the various parts and really understand what's going on.

Maybe she needs EEN and Stelara/Humira and surgery and maybe even something else all in combination, but it's just hard to figure it all out at once.

I don't have a solution, just identifying a difficulty. I hope O can find a combination that works.
 

crohnsinct

Well-known member
Update:

- H&H are down...a lot...in two weeks . Crit just under normal, HGB at the low end barely holding on
- Albumin down but right at bottom of normal
- CRP is up to 25...from 16 while inpatient. Not terrible like when she was septic and 240 but not a good trend
- weight is 114.75...so little gain from hospital of 112
- she has granulation tissue that they burned off and she will treat at home
- they are switching her formula to peptamen because she is still going 20+ times a day. If this doesn't work they will give her vivonex
- Calpro is 885. Down from >3000....in two weeks. GI is very encouraged about that
- they are letting her eat 250 calories a day. CDED foods
- She will remain on 90/10 EEN until end of September. If not in remission then, she will move to steroids with the plan to do colectomy in December
- She looks much improved. Color in her face, no dark eye circles, more enthusiastic about things.
- DC Sulfasalazine and Cipro so now just on Humira weekly and Entyvio 300mg Q4

So all in all, cautiously optimistic with plan B being discussed.
 

Maya142

Moderator
Staff member
Glad she at least looks better! I hope Peptamen or Vivonex will help her diarrhea - elemental formula (Neocate then Vivonex) made a big difference for M. How is she doing now?
 

crohnsinct

Well-known member
Not so good. She seemed like she got better for two days (frequency only 10 times) but went right back up and increase in bleeding.
Friday was update GI and RD day. RD said to slow down the feeds and wait for GI to weigh in. He is on vacation. Back on Thursday …the day after she leaves. I am hoping we switch the formula.
 

Maya142

Moderator
Staff member
Can the RD not switch the formula without him? Considering she’s doing so poorly? It’s not like it can hurt her…Why wait?
 

Tesscorm

Moderator
Staff member
She really is amazing, pushing ahead with all the setbacks. So sorry that a smooth path seems to be so difficult for her to find. Can she delay leaving? I know there's only so much you can do but any way you can convince her to stay back until she's a bit more stable? :(
 

crohnsinct

Well-known member
IDK why the RD won't switch the formula without him. Maybe because she is wondering if he is going to pull the plug on EEN and just stick her on steroids and wait until December to do surgery? Either way this is getting ridiculous because she is getting a huge shipment of peptamen sent to her apartment by school. If GI and RD decide to switch the formula she will have cases and cases of peptamen hanging out at school. I will have to help her find someone locally who might need it but those chances are slim.

She would never push back her return to school. She was awarded a grad assistantship and it starts on 8/5 so her going back 8/4 was as much of a compromise as we are going to get 😂 .
 

Maya142

Moderator
Staff member
You can always donate formula to your local children's hospital...that's one of the ways they get samples! We donated a LOT of Neocate in the past - just took it to CHOP. I know O is far away from a children's hospital but does the adult one near her school have a GI dept? Because she could donate it there if she switches to Vivonex.

Just an FYI on Vivonex - it comes both in the powdered form and a liquid form. We find the powder is easiest for M to travel with, but obviously that means mixing the formula (we just use a blender bottle). The liquid is in cartons just like Peptamen and that's quickest to use, but flying with it can be a pain. TSA gave us a hard time even though M had a letter, a NJ tube and a feeding pump and backpack. Now that she only supplements with formula, it's not really an issue.

I also wish she would slow down and take some time off...I really think she should give herself a chance to get better.
 
IDK why the RD won't switch the formula without him. Maybe because she is wondering if he is going to pull the plug on EEN and just stick her on steroids and wait until December to do surgery? Either way this is getting ridiculous because she is getting a huge shipment of peptamen sent to her apartment by school. If GI and RD decide to switch the formula she will have cases and cases of peptamen hanging out at school. I will have to help her find someone locally who might need it but those chances are slim.

She would never push back her return to school. She was awarded a grad assistantship and it starts on 8/5 so her going back 8/4 was as much of a compromise as we are going to get 😂 .
Does she have like an Amazon wish page or anything? Would like to send he a giftcard or something for some school shopping!
 

crohnsinct

Well-known member
@Maya142 No adult GI department at the hospital near her. It is actually more like a big medical office than a hospital. The nearest larger hospital is about 2 hours away. That's why when she was septic that one summer they were going to transport her but they were able to handle it.

There is not even an actual GI in her area. There is a surgeon who removes terribly diseased colons and then puts you on a biologic and tries to manage you and a family practice physician who will try to manage your IBD for you. It is really bizarre to me that there is not one GI in the whole area. I am assuming most people just travel the two hours north or east for the next big city.

So when I get there, I can try to drive the peptamen to CHOA or just go on Oley and see how to donate it there. I could also reach out to the SCD families and see if anyone there needs formula as a lot of those kids cycle on and off.

She is back at school. Things straightened out a bit and frequency went back down to 10, bleeding is minimal and weight seems stable at 116. So just keep on keeping on. Her next infusion is 8/16 so we will have lab results sometime after that and more of an indication if EEN is actually working.
 
116 sounds like she is creeping in the right direction? I am torn between feeling so proud she is so determined to persevere despite everything and also really wishing she would put all that aside and just focus on health.
 

Maya142

Moderator
Staff member
I think @Delta_hippo said it best! She is incredibly tough but I do wish she would put her health first. But I am very impressed she is sticking with EEN and the tube at school. That can’t be easy, especially since she is hooked up most of the day.

That does surprise me that there is no GI in that area…Auburn is such a big school! I guess that is why they have such a good health center for students - my younger daughter’s school would not even do a routine CBC on her when she needed weekly blood work on Imuran.

If O does switch, either of those approaches would work, though if you don’t know a GI at CHOA , I think probably mailing it through the Oley Foundation might be easier. You may also be able to get Vivonex through them.

Glad to hear she is gaining weight slowly but surely! When are you going to see her? Glad she has labs and an FCP coming up soon!
 
You could check GI Care For Kids with the peptamen they're affiliated with Scottish Rite CHOA Sandy Springs. Out of touch with the peds world since C moved to adult GI.

Hope O's health is improving greatly. Tell her I said War Eagle!
 

crohnsinct

Well-known member
Sorry it's been awhile. It's been a bit crazy.

O was eventually able to tolerate the Peptomen and has continued on her 90/10 EEN/Food plan. She is up to 119! But she still has a frequency of 7-8, occasion really bad days, occasion bleeding and always urgency.

During her August virtual appointment GI changed the plan to if she is not in remission by end of October then maybe we drop Humira and try Stelara. He also got 12 suppositories under compassionate use and said if they worked we would use that to get insurance to approve them. Also during this visit they discussed her urgency and he mentioned that the rectum and sigmoid colon could have become fibrotic and lost their function after the years of inflammation. He mentioned a possible MRI of the area to assess the damage.

O continued to do o.k.'isn for a while but has had some bad days and actually was in the E.R. one day because she was running high fever and vomitted. Reminiscent of "that" summer. The E.R. put her in the COVID waiting room as she was technically symptomatic. She tested negative but they kept her in there because now she had been exposed to them for 5 hours so could likely have caught it. Her GI wanted her admitted for fluids and IV steroids but there was no room at the inn so she signed out AMA with her GI's approval. She went home, super hydrated and straightened out.

Her most recent calpro is 3120.

She just had another virtual visit with the GI.

- he is thrilled with weight gain and see's that as a great sign.
- says her inflammation hasn't gotten worse so that's good (even though her calpro was 880 in July)
- asked her to give EEN another 4 weeks to see if it will get her to maintenance. Said, EEN has stopped the backslide so let's see if another 4 weeks gets her to reverse.
- mentioned the possibility of fibrotic tissue. She will get an MRI of that area when she comes home for Thanksgiving.
- He said the g-tube was worth it even if we declare EEN a fail as IF she needs to have surgery the tube will help us ensure she is nutritionally optimized for a better surgical outcome
- he mentioned insurance will likely no longer approve double Humira and double Entyvio and that at the end of her Humira approval (1/1) we will have to pick one. But we will deal with that when the time comes
- he feels that E.R. visit was a cytokine storm due to IBD inflammation. Similar to what happened "that" summer but it is good it hasn't happened again.

My take? I don't see how one biologic is going to be able to maintain her if two with EEN or previously antibiotics or sulfasalazine or Uceris or SCD or..or..or has not been able to.

If they want us to pick one biologic they will not likely approve Stelara with Entyvio and I hate to ditch Entyvio and Humira when they are keeping her somewhat out of the hospital for an unknown Stelara that might not work at all.

It seems like he is trying to give EEN every shot possible to work because really what are our options. If the next step is surgery we really was to know we exhausted the EEN option.

She is away at school, Covid is rampant there so steroids are not really an option and if surgery is the next step steroids become even more of an issue.

Seems to me the writing is on the wall and he is just trying to get her to December and to a point where she will admit surgery is next step.

But the good news is she says she feels fine and is happy! Her birthday is coming up and GI approved a birthday dinner with no restraints on calories so she is happy.

Another infusion this week so more lab data to come. Who knows, this calpro could be back down to 800's.
 

Maya142

Moderator
Staff member
I'm glad O has gained weight!! Just FYI, we have been able to get two biologics - one at 3x the normal dose and one at 2x the normal dose (Cimzia) for two years. It did take appeals but we got the high doses based on M having tried everything else and severe disease activity. We also got two different biologics (well, Cimzia was the same but a new one for her AS) both at 2x the normal dose for another 2.5 years. I should note that M was also on two immunomodulators used for arthritis, one of which is pretty expensive.

It's definitely possible, you just have to fight for it.

That said, I wonder if it a way her doctor is preparing her for surgery because there is no way she'll be able to manage on just one biologic and Humira and Entyvio are only just keeping her out of the hospital.

he mentioned that the rectum and sigmoid colon could have become fibrotic and lost their function after the years of inflammation. He mentioned a possible MRI of the area to assess the damage.
If this is true, does that mean her ostomy would be permanent?

Sending hugs!
 

crohnsinct

Well-known member
@Maya142 I think insurance is just really clamping down all over these days. She has been on double dose (and at times quadruple dose) Entyvio since spring of 2019, and Humira for a year and half now. I think insurance is saying, "fine we will approve it but only if it is working which it is clearly to because you keep asking for all this other stuff also"

I also wonder if he is laying the groundwork. But this guy changes on a dime so I am not investing too much energy into thinking about it. Taking it a day at a time.

I am not clear on the fibrosis. But I would think that would mean proctocolectomy but I know there is a lot of research going on right now with intestinal fibrosis and drugs to treat it so who knows.
 

Maya142

Moderator
Staff member
Insurance definitely is clamping down. We've had to fight harder and harder in the past few years. It's been doable, but has taken months, which O doesn't really have.

I do hope she'll consider the surgery though I know it's a huge (and scary) step.
 
Stelara + entyvio + een + maybe an antibiotic for a short time might be a combination to try, if they would approve it. The switch from Humira to anything else could be rough, but you probably want to keep EEN going during that time in order to avoid making things worse.
 
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crohnsinct

Well-known member
@Pangolin Yeah we would keep the EEN going IF it was doing anything but since her calpro is still sky high I honestly don't think it is. It is just putting weight on her which in and of itself is a good thing. IF Stelara really takes that long to kick in, she will likely end up in the hospital again if she is only on Entyvio and EEN. The antibiotics had stopped working last fall so not sure that is an option.

The other complicating factor is that Humira is controlling her small bowel disease to some extent, so the GI is leery of dropping it and going to Stelara because what if Stelara doesn't control her colonic disease or her small bowel. Then she needs surgery and has a diseased small bowel. It seems he and the surgeon would much rather go to surgery with a drug we know is some what controlling her small bowel.
 

crohnsinct

Well-known member
Hi! Sorry been away for a bit. Here is the update even though the future is a little muddy.

O's most recent calpro came back at 1200...down from 3200 but still hovering in the 1000 range.

Symptoms are improved but not great.

She is up to 121 so has gained 10 pounds.

She has agreed to the colectomy and requested to have the surgery in December. She is tired and there aren't really any other options anyway. She wants to control the narrative and not have it be emergent.

She is dropping EEN (been on it 13 weeks and if it hasn't worked by now....) and moving to eating what she wants and doing three overnight feeds per week. This is in an effort to hopefully get her to gain an additional 10-15 pounds and get her to optimal nutritional status for surgery and better surgical outcome.

She is still scheduled for the MRE Thanksgiving week. The GI mentioned that beyond the fibrotic sigmoid colon and rectum the bigger concern is her TI. He said the TI has to be healthy in order for a reconnect to be successful and she has disease burden in her TI. So we will wait to see what the MRE says. A reconnect in her case seems to be slim possibility.

Since we are withdrawing EEN and her inflammation is still high we are trying an experimental treatment. He has been using interventional radiology to insert a tube through an artery in the groin that goes directly to the diseased area and injecting steroids right to the inflammation. Some will be absorbed but not as much as if she took oral steroids. Not sure if this helps with the washout period prior to surgery but I am guessing so.

He would like her to start Stelara. I "think" the move is because her TI is still inflamed and Stelara works better in the small bowel than Humira. True that the colon is being left undertreated but it is coming out anyway. Hopefully the IR injections keep the colon quiet.

It sounded like he wanted her to put off the surgery while we get the TI under control and get some IR injections under our belt and improve her nutritional status BUT if she doesn't do it in December the next time she has time to do it is next December. She only has a week here and a week there off from school. It sounded like the GI felt this December is too soon but next December is too late. Good 'ole O making scheduling impossible.

She has another appointment in three weeks. We are just taking it one itty bitty step at a time. Who knows what will happen. Maybe MRE will surprise us. Maybe Stelara will be a miracle....of course we have to get it approved first;)
 
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I really hope the stelara exceeds expectations and also that it helps with her psoriasis. Annoyingly it triggered psoriasis for me but my GI said it was originally developed for psoriasis so it would be nice to at least injure two birds with one stone.
The weight gain is really great news but I suppose the lingering high FCP despite literally everything she has tried does point to surgery and I am very relieved to hear planned rather than keel over and emergency. I hope it goes well. I’ve had an ileostomy before happy to answer any questions she might have (I’m in the UK so brand names might be different).
Good luck xx
 

Maya142

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I am so sorry O has to go through with this, but also so proud of her for making such an incredibly difficult decision - a decision no 21 year old has to make. I'm glad she will stick with some formula but will get to eat and I hope that makes it easier for her to gain weight. She has had a restricted diet for so long now...I hope she enjoys her food!!

I still wish she'd take a semester off - then you could get her TI under control with steroids AND do the surgery. They won't want to do surgery right after she's had steroids, even if they're injected right? I remember when my daughter was having major surgery that they wanted no steroids for 3 months prior to the surgery. She had to stop her Cimzia and her Crohn's was flaring and the surgeon agreed to 5 days of Entocort - nothing more than that!

If her TI has to be healthy for a reconnect, wouldn't it make sense to get her TI under control with Stelara and steroids and then wait a few months and have the surgery? I'm guessing this is what her GI wants, but if it will give her a chance at not having an ostomy, isn't it worth deferring a semester of school?

Regardless, she is so brave and my daughter says she deserves a reward (and I agree) - I think Disney tickets are in order!
 
This girl has been through so much. You all deserve a medal. I wish her the best. Not sure I could even make such a decision. After following you all I have nothing to even think of complaining about with my disease. The doctors say I am one of the lucky ones only having to have 3 resections and 1 stricturplasty In 31 years. The best to you all.
 
Thank you crohnsinct. There wasn’t much info around when I was first diagnosed. C&CF was about it at the time. It is so nice to have forum like this.
 

crohnsinct

Well-known member
O got a call today to schedule the Interventional Radiology thing. They said they will do the consult right after her MRE and then the procedure on Wednesday before Thanksgiving and she will stay the night. STAY THE NIGHT?! What the heck did we agree to?

In true O fashion she balked at the stay the night part especially because it is Thanksgiving so they said since she is technically an adult they will just keep her there for 6 hours and then she can go home. 6 HOURS?! I have cooking to do! LOL! KEEP HER! I will send her dad for her in the morning!

So looks like I have to do all my pre Thanksgiving cooking by Monday!
 

crohnsinct

Well-known member
OK this does not sound fun and certainly not a long term solution. The procedure is done under anesthesia. The tube is inserted in the groin. It is listed as a visceral angiography. She has to keep her leg straight for 12 hours afterward. No hot showers blah blah blah....I just don't see how this is sustainable on a long term basis and why he said it is an option to surgery. I am glad we are only doing it to get her to surgery.
 

Maya142

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I was going to say that she will probably need to lie on her back with her leg straight for a while - that’s what they do after angiography. They do use anesthesia for those procedures or at the very least, sedation. My daughter has not had this procedure but she has a friend with pretty serious vasculitis and he has had similar procedures many times. I can ask her to ask him if he’s in pain after the procedure and what it’s like, if you’d like.

I’ve never heard of this procedure used for Crohn’s - so what they’ll do is go in through an artery and inject steroids into her terminal ileum? Just out of curiosity, why wouldn’t they do that through a scope? Or is this for her colon?

this is a good excuse to get your other kiddos involved with Thanksgiving cooking!! Or even your husband!!
 
I googled (google scholar) and only found old papers ( 25 years ago and older) reporting intra-arterial steroid injection in ulcerative colitis but I saw none about Crohn’s. I wonder how much experience this doctor / the interventional radiologist has with this procedure. Does not sound fun. Sending hugs to the both of you.
 
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Tesscorm

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I hope this helps O! Not the same thing but I did have an interventional radiologist inject steroids and a nerve block through CT guidance into my spine approx. 3 years ago (when I was having problems with a synovial cyst). I don't believe he went through an artery but I don't really recall the details, ie as to how he got to the site of the cyst but it did help incredibly. Recovery was quick - I did not stay in hospital overnight but did need to stay still for a while (hours??) before I left hospital.

I hope it brings O relief!! 🙏 Sending lots of wishes it does her well!!
 

crohnsinct

Well-known member
Consent form for surgery was signed today. It will be a total colectomy with end ileostomy. Surgery is scheduled for 12/30.

Due to a miscommunication, I was not in the appointment nor did we know surgery was going to come up. We thought it was just a tube change.

O handled it all on her own, is confident in her decision and completely understands everything. Although she is sad it had to come to this.

Chances are it will be a permanent ostomy and she is prepared for that and actually says once she experiences life not revolving around the bathroom she is not so sure she will want to reverse it.

Gives a whole new meaning to the term New Year New Body!

She joked and said maybe this year she will actually stay up to ring in the new year because she never sleeps in the hospital.

I am not quite sure what this means for the MRE or the interventional radiology procedure. I imagine it doesn't change either. WE have to know the condition other ileum before surgery so the MRE will give us that and we have to actually get her to the surgery and the the interventional radiology steroid injection will hopefully do that.

Sorry.
 

crohnsinct

Well-known member
LOL Maya - I would get the kids or hubby involved in cooking if I wanted to eat Cheerios for Thanksgiving Dinner! THat's a good question about why not during scope. IDK. It is her colon we are targeting. And yes, please ask your daughter's friend about the procedure, what to expect etc.

@Tesscorm Thanks...O had a steroid injection once but it was into her hip and much less of an ordeal. Sounds like she just has to lay there for 6 hours. She will be admitted to the short stay unit and then go home.
 

Maya142

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That’s consistent with what M’s friend said. She’s in the hospital for (minor, arthritis-related) surgery so hasn’t talked to him about a lot but he pretty much said that he was sore after the procedure but it wasn’t too bad and he had lie on his back for 6 hours for observation. His experience is with MRAs though, not exactly what O is having done.
I am now even more confused - if she’s having ileostomy then why hit the colon with steroids? Especially a month before surgery.
I am beyond impressed with O’s maturity and with the grace she is handling this with. It is not an easy thing to come to terms with for an adult, and for such a young adult it must be immeasurably harder. She is an incredibly resilient and determined kid and I’m so proud of her!! Once this surgery is done, the sky’s the limit for her!!
 
Ah, feel sad and relieved at the same time. Sending hugs and prayers xx
Might be worth starting to think about clothes. With an ileostomy high waisted slim or relaxed fit jeans and yoga pants are your friend, anything that has a tight low waistband or super skinny fit is not. Basically you don’t want anything digging in or cutting across where the stoma will be.
You can also get special underwear, which is optional, the nurses should be able to give you a link to US companies.
Post op food is very soft you are looking to avoid any insoluble fibre or things that might get stuck/ cause blockages so think custard, mousse, smooth soup, scrambled egg, avocado, white bread, yoghurt, jelly, mashed potatoes. Avoid seeds, stalks, nuts, skins, pips. When introducing meat and vegetables cook it all to mush initially.
When they sort her out with stoma supplies make sure you get the “banana peel” stickers, they are like an extra banana shaped translucent sticker/ plaster you can put either side of the stoma bag for extra protection- I found out about these from a friend and had to ask especially, but they really give you a bit more confidence in the early days when out and about. As does scent drops to put in the bag.
Peppermint tea and ginger biscuits (dunked well) are nice to have post op when feeling a bit nauseous.
I don’t know if she drives but in UK you can’t for about six weeks after op.
I think/ hope she is going to find life a lot easier being freed up from the bathroom. If she does have option of reversal there is no time pressure to decide- my surgeon said up to 2 years to think about it was normal and fine.
Good luck to her and to all of you.
 

crohnsinct

Well-known member
Well @Maya142 the thing is the GI doesn't exactly know yet so we will have to see if the IR therapy stays scheduled. Yep, O just had her check in with the surgeon and she told him she wants the surgery and they went with it. IDK if the GI could put the kabash on the whole thing or not. Maybe if he really felt like she wasn't strong enough but otherwise I am thinking he has to honor her wishes and stop playing around with all these investigational therapies. Maybe the GI asked the surgeon to meet wither. Who knows. But I also don't expect them to cancel the IR injection because her calpro has been in the 1000-4000 range since May...and that was with EEN. We have to get her to surgery 12/30 without a massive flare so I am assuming the shot in November is still on...assuming a washout period is not needed. I will keep y'all posted.

@Delta_hippo thanks for all the hints. I keep trying to look at ostomy info but it all gets a little overwhelming to me and makes me think, "why are we doing this?" It is hard to imagine life is better but everyone says it is so she is going with it. Her main motivating factor is that she is just really tired of being admitted and not knowing when she is going to tank and the disruption to her life.
 

Tesscorm

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I feel as Delta, sad and hopeful at the same time for her. My heart breaks for her and I'm very sorry it's come to this! But, I so, so, so hope that she is relieved of all worries once she adjusts to the stoma and can then move ahead with her life, with nothing holding her back. She so deserves it! ❤
 
I've come across and read so many stories of folks who have found a whole new meaning to life after a stoma. They are not strapped to the bathroom and for the first time feel "free" to enjoy life again.

There's a gentleman on one of the groups I follow who comes to mind. His name is Keith Thomas. He's on several platforms and does a lot of outreach and post about folks with a stoma. I'm including a picture in case she is interested in checking him out. Very inspiring...

I wish O a successful surgery and hope that this will only be the beginning of a new happy life for her. 🙏
 

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crohnsinct

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Well her most recent calpro posted and it was taken just a week after stopping EEN. It is 4480. Not totally sure what we do about that. Oral steroids will interfere with surgery and risk surgical outcome. She gets the steroid injection 11/24 so she just has to make it 4 weeks. I guess going back on EEN is an option to slow things down.

We have an appointment with GI on Friday.
 

Maya142

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Oh wow, poor O!! The surgery really is necessary. Poor kiddo. I’m so sad she has to deal with this but I hope it will give her her life back.
 

Maya142

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I hope the steroid helps and the procedure is easy enough to tolerate.M says the main thing her friend said was that it was long and boring (the wait after, I mean) so to bring something to entertain herself. A movie to watch or a book or something.
I know EEN again may be very hard on her but hopefully it will be the last time if she has to do it. My daughter says she’s a superhero - she did 16 weeks of EEN last year and found it incredibly hard.
We’re going to keep O in our thoughts.
 
Wow that is some calprotectin score. Ouch. When they were talking about starting stelara is that happening any time soon? As you say don’t want to be on steroids going into surgery. Kind of confirms her decision to go for surgery though I guess.
Sorry for getting caught up in ostomy info while you all still trying to get your heads around things. Half the challenge is mental rather than physical in that you have a bit of you that you normally keep inside on the outside, makes you feel a bit vulnerable/ fragile at first? Takes a bit of getting used to. Then it’s just about the practicalities of getting into a routine that works, i.e. which supplies suit best, how often to change bag etc. But I will add mine was in the context of sudden bowel perforation, I hadn’t had months and years of life revolving around bathroom, and everything I read at the time said for people in the latter group, it is a massive relief suddenly not having to constantly worry about that.
 

crohnsinct

Well-known member
Thanks @Delta_hippo I am definitely going to have to lean on you for advice on the practicalities!

My biggest concern right now is that she is having the surgery at a pediatric hospital with a general surgeon who happens to do all the GI surgeries but he is not a dedicated colorectal surgeon. He does about 7 of these a year and has a great success rate at reconnects but 7 isn’t 70. And I have heard about ostomy nurses and how invaluable they are and about all the marking of the site beforehand and how that makes your life with the bag so much better. So I just wonder if her having the surgery at a pediatric hospital is the best thing.

It doesn’t much matter because I have suggested she explore having the surgery at a really great adult hospital by us and she refused. She wants me to be able to stay with her and the adult hospitals here won’t let that happen yet due to Covid. She likes the nurses at the children’s hospital. Familiar surroundings. Feels they are gentler with patients and she has a relationship with this surgeon and knows all the GI’s.

But I do still wonder about all the “ostomy” knowledge. I will ask as we get closer. Perhaps the adult side of the hospital has their ostomy nurse help out?
 
These are the questions I have for GI, ped surgeon and your daughter:
What needs to be done to get her in the best condition for surgery?
Should she be on EEN? I know it didn't solve her problem but if it helped some, might it be worth doing it before surgery?
How will GI/surgeon judge if she's in good enough shape for surgery?
What are the risks if she has a lot of inflammation at the time of surgery?
Does using the IR steroids so close to surgery increase the risks of surgical complications?

I'd ask her GI and also her pedi GI surgeon, why might an adult IBD surgeon and an adult hospital be best for her?
I have found that when you ask why might questions, you get some interesting information.
I would also ask her: why might having a consult with an adult GI surgeon be useful? She might say she can think of no reasons but maybe she could think of some.

RE:She wants me to be able to stay with her and the adult hospitals here won’t let that happen yet due to Covid.
I wonder if there might be exceptions to those COVID overnight visitation rules at the adult hospital. I know exceptions are made at the local hospital if a doctor asks with a reason (anxiety? PTSD?)

Sending lots of hugs to you and her!
 

Maya142

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I just wanted to echo what xmdmom said - My daughter has PTSD and I was allowed to stay with her last year for 12 day hospitalization.

I would not assume that all adult hospitals are not allowing visitors. M was hospitalized 3 times last year - twice at adult hospitals and once at a pediatric hospital. In March 2020 she was at a adult hospital and since that’s when COVID was starting, she had to stay without me and I wasn’t allowed to visit at all - no visitors at all. However, by November, when she was hospitalized again, they were allowing visitors and allowed me to stay the night with her. In summer of 2020, she was hospitalized at a pediatric hospital and was allowed one parent to stay the night and one adult (a family member) was allowed to visit. She was not allowed to leave her room at all and the rules were very strict. They wouldn’t even let us keep ice packs in the freezer.

She’s just out of another hospitalization at that same pediatric hospital and now visitors are allowed during the day (so she had friend visit twice) and you can have up to two family members stay at night (though logistically speaking no idea how we’d even fit two extra adults in a hospital room!!). The rules are much more relaxed, she could walk around outside her room and visit the roof garden.

So I really would not just assume that adult hospitals are not allowing an overnight visitor. The rules really have been relaxed a LOT. For all of 2020 and about half of 2021, she had to do outpatient procedures that required sedation or anesthesia by herself, despite the PTSD. But they took extra care of her and always let me stay outside, in the waiting room, so I wasn’t too far away (they weren’t even allowing family members in the waiting room at the time). She now does not need me there but those rules have also been relaxed now (and all her procedures are at adult hospitals) and I can go back with her before procedures, if she wants that.

She has been hospitalized 15 times in 7 years so she is very sick of hospitalizations. But as she has gotten older, she has actually started preferring adult hospitals because she says they treat her like an adult and she feels like they listen to her more. Her voice counts more and she does really prefer being treated like an adult. But she is a few years older than O.

But at the same time, she definitely does feel that pediatric hospitals are friendlier and gentler. And her most major surgeries were done at a children’s hospital and she is glad of that, though in her case it was a surgeon who treated both adults and kids and had admitting privileges at both the adult and pediatric side of the hospital. We were very glad to have a surgeon with so much experience since her replacements were joints that are less commonly replaced (not hip or knee). At the time, she did not know him well - she was his patient just for 6 months before the surgery. But he was really the best option because he had so much experience and her joints were a mess.

I think there is no harm in exploring the option of surgery at an adult hospital with a surgeon who is a dedicated colorectal surgeon. But I do also recognize it is a lot easier to do a major surgery at a hospital you know and with a surgeon you know.

But I also wonder if there is a colorectal surgeon at the adult counterpart of the hospital she goes to who may be able to operate on her at the pediatric hospital. Or could at least consult. Or at the very least, could she be set up to see ostomy nurses at the adult hospital after discharge? It’s hard because there is not a lot of time before surgery and I know she either wants surgery this December or next December so not doing surgery this December is probably not a good or safe option. But at the same time, I’d definitely be more comfortable if she was seeing a colorectal surgeon, especially given the amount of inflammation there is. And I think a second opinion is always a good idea with a major surgery, though again, since she is home so infrequently I do recognize that’s easier said than done.

I think @xmdmom listed some great questions. I also wonder when the switch to Stelara is going to happen. Since it takes a while to kick in, I’m worried about inflammation going up if she’s switched to Stelara right before surgery.
Also, if she’s not willing to do EEN before the surgery, would she be willing to do supplemental feeds every night instead of 3 times a week? I know she’s gained weight but she still does not have much of a cushion.
 

crohnsinct

Well-known member
Wow @Maya142 poor M has really been put through the ringer.

It is amazing how different the regions of the country are. I can say that when we dropped T off at school we walked into a convenience store and we were the only people wearing masks. It was like they didn’t even know there was a pandemic. Where O goes to school it was a little better. We are in NYC now and there isn’t even an indoor mask mandate although many businesses are asking you to wear a mask.

On the west coast each hospital is slightly different but I Checked and both will not allow anyone to accompany a patient older than 21. They may have visitors after the surgery once admitted, but only for a very narrow period of time and no overnight visitors. I agree PTSD or other reasons are justifiable but I just don’t think O would fall into any of those categories.

I also found out that there are three dedicated wound care/ostomy/incontinence nurses at the children’s hospital. All three have been specially trained in ostomy care at Emory. So that makes me feel a bit better.

I don’t even know if the GI is going to approve the surgery in December so I am trying not to get too far ahead of myself. There isn’t time to find an adult surgeon for a December surgery but if for some reason it gets pushed off I am definitely pushing the idea of seeing some adult centers. I agree with M. I would like to be treated like an adult and I don’t necessarily think that adult care = cold. But like you said if she has it done now and it is easier for her to have it with a surgeon she has an established relationship with and at a hospital she is comfortable in and with so be it.

I will know more Friday. Wish I could FaceTime you all in!
 

Maya142

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She has definitely had a tough time. This was her 11th surgery. She does have major PTSD and is working with a trauma therapist now, and a large part of the trauma has been medical.

Things are definitely in different regions - safer in the Northeast I think. Our town has 100% seniors over 80 fully vaccinated, 98% of 65+ fully vaccinated and 80% of 12 and over fully vaccinated. When you look at teens/young adults, of 12-17 year olds 95% are fully vaccinated and of all 18-29 year olds only 65% are fully vaccinated (I guess if you're under 18, your parents are making good choices for you, and with older younger adults, the numbers fall significantly, though both my daughters don't have any friends at all that are unvaccinated).

I also found out that there are three dedicated wound care/ostomy/incontinence nurses at the children’s hospital. All three have been specially trained in ostomy care at Emory. So that makes me feel a bit better.
I think this will make a huge difference. And honestly, if you are doing the surgery this December, then it does make sense to do it with the surgeon she knows and the GIs she knows, since surgery is such a huge step.

But yes, exactly as you said, all adult hospitals aren't awful. All adult providers aren't unfriendly or unkind - I think you just have to look a little harder to find good ones sometimes. My daughter has a great team now, but it took us a while to put it together. It should be easier for O since her care is largely just managed by her GI and now surgeon. So if, for some reason, the surgery is put off, I would definitely try to convince O to seek another opinion, especially since she will have to transition soon.
 

crohnsinct

Well-known member
Had the appointment with GI. He feels strongly that her low BMI was keeping the drugs from being able to work well and that now that she is on an upward trend she will reach a weight where the drugs will work. Umm ok but then why didn’t we try this sooner?

He says she is medically stable and looks good (over telehealth).

He see’s good results with intra arterial prednisolone as it is very targeted. Some patients feel good right away.

He asked her if she gains weight and gets good results with the shot will she still want surgery. She said “yes”.

He asked again if we postpone the December surgery when would be the next time she could have surgery. Answer is still next December.

I reminded him that insurance told us in January we had to cut back to 1 biologic. He admitted our roads are closing.

He said the November MRI will give us a lot more info ie: is the colon fibrotic or just inflamed and state of ileum. And what we find might help us make our decision.


O is frustrated. She has made her decision. But now he has her second guessing herself. She is concerned that she will flare massively and end up in the hospital before next December. She also says that if a doctor is fighting so hard to avoid colectomy is must be really awful

Nit doing anything right now about the continued high calpro.

I guess we will just wait and see what MRI says and take it from there.
 
Her GI "feels strongly that her low BMI was keeping the drugs from being able to work well "
Did he mention the mechanism for this? (I'm curious.)
What weight/BMI does he think she needs to be for the drugs to work?

I believe she's on Humira and Entyvio --- forgive me if I'm wrong!
When did she start Humira and increase to weekly injections? Do you think she has or had a good response to it?
When did she start Entyvio? Do you think she has ever had a good response to it?
What has her BMI (or weight) been during the time she's been on these drugs?

She looks good to him. How does she look to you? How does she feel?

What do you/does she think is responsible for her most recent weight gain? May it continue!
 

crohnsinct

Well-known member
No, he didn’t mention the mechanism. He has said in the past that when body weight goes too low all the body’s energy goes to everyday functions and there is little left over for healing but IDK if that is what he meant this time.

He did say he wanted her at 130/135 but yesterday the RD said they talked about 125 being a good weight. She is 119.5.

I honestly don’t buy the weight argument. I mean when she is really low at 111 sure but she has been 120 before and been fine.

She started Entyvio spring of 2019. Never had a strong or good response to it. Humira was started spring if 2020. Increased to weekly June 3021. She had somewhat of a response but not great. Then they added back an antibiotic cocktail fall if ‘21 and that’s when she really took off but quickly went bad again.

It seems every little tweak he makes she gets a little better but then turns back down or tanks.

Honestly her weight has been 117-121 for years now. Often dipping due. Into the low teens when she gets really sick.

She us finding it hard that they keep pressuring her to maintain the weight. As if it is her fault she keeps tanking. At one point he blamed her stress. Not just emotional but physical. He kept telling her she had to rest more to allow her body to heal. That also made her feel like her tanking was her fault.

She does look the best she has in a long time. Stronger and more endurance also. I owe all of that to the nutrition. It all has to do with formula feeds. As long as she gets enough formula in she gains and looks great. She is only doing supplemental formula three nights a week (9 cartons each of those nights so 2250 calories on top of whatever food she ate that day) and gas list about a pound or 2 but stabilized.

She says she feels good. BM’s down to 6-8, little urgency and no blood. So really the best she has been in years but just not getting better and has had calpro over 1000 since December 2020 and tanked over summer and inpatient. So who knows now that she is consistently over 3000 how long she will stay this good.

She is being very logical with the surgery decision. If she could wait and see she would but with no time off from her program until next December she doesn’t want to take a chance. If she tanks and ends up inpatient again it means dropping out of her program for a whole year because they only offer the classes once a year. She has already had to drop her head assistantship because of her health. She doesn’t want to have to lose more.
 
Glad she looks good and feels good!

I will preface the rest by saying that I don't know a lot about these medicines while her GI is an expert and has a lot of experience and knowledge.

It's true that really malnourished people don't heal well but I agree with you that it's not clear that that's what's going on with her given her past weights and BMI now that is .84, based on 121 lb/5'8 (underweight BMI < .85 )

So the drugs not working could be due to low BMI/malnutrition (his theory), or the drugs could just not be working for her. The latter would not be unusual. If she started Entyvio in 2019, and she hasn't had a good response, why does he think it will start working now? Again he may have experience and/or knowledge that makes him hopeful?

However, I think we can get lulled into thinking that drugs should work but when you look at the Entyvio website, only 39% of patients with Crohn's disease achieved remission at one year compared to 22% of patients on placebo at 1 year. In addition, I've read that people with Crohn's for longer duration, more severe disease, and/or prior TNF antagonist use/failure generally have a lower response with Entyvio. So if it's not working or not working well, it wouldn't be surprising. [https://onlinelibrary.wiley.com/doi/abs/10.1111/apt.14550 + others]

Given the very high calpro levels, can the MRI and steroid injection happen sooner?

Last question; If she continues to have this level of inflammation, will that affect the surgery?

Wishing her improving health!
 

crohnsinct

Well-known member
@xmdmom your input and insight is invaluable!

I truly think that these drugs just aren’t working. Even if it was true that malnourished patients don’t respond well, we have doubled and quadrupled dosing if Entyvio. PLUS added weekly Humira PLUSadded antibiotic cocktails and budesonide and sulfasalazine and uceris and EEN and SCD…..and we are still at this point. Even malnourished with everything we threw at this thing I would think something would work.

We can’t get the MRI or steroid injection sooner because she can’t come home from school until Thanksgiving.

Good question on doing surgery with untreated inflammation for so long. I mean I imagine it “could” be done because they do it all the time with hospitalized patients but whether or not it is ideal is a whole other story.

I am trying to just be patient and see what the MRI reveals and what her response is to the injection. Then we could discuss how realistic the steroid injection therapy is.

We also have the impending insurance denial on double biologic so even if the steroid injections work now, will they once she is on a single biologic?

Ugh.
 

crohnsinct

Well-known member
Hey y'all Been a minute.

O continues to report status quo. Weight pretty steady at about 120/121.

She came home. Looks pretty good. Frequency seems to have ticked up a bit and a little bleeding. Her appetite is trash and she can barely get 4 bottles of formula in without being woken up due to nausea. She can't eat without feeling full super quick and she is losing weight slowly.

Calpro is now 4700.

She had her MRI yesterday and Interventional Radiology consult. The Radiologist told us that it seems the EEN healed her TI and most of her rectum looks good. Her sigmoid colon is very, very inflamed. He explained the procedure and what they have been trying to do at length. We like him. Straight shooter.

So the basic premise is that oral steroids go everywhere and of course we don't want that but also because they go everywhere even less is actually getting the colon. The fact that she has been in this flare for 6 years now and hospitalized multiple times means it is pretty bad. The goal with this steroid injection is to get the drug delivered right to where it is need and to bring down inflammation quickly so hopefully then the drugs have a fighting chance. Similar to what we did when she was first dx'd and Remicade could get her to remission without steroids. We induced a good remission and mucosal healing with EEN and then Remicade worked like a charm. He described her disease as a run away car that we. just can't catch. We need an obstacle to stop it.

They will go in through the artery in her groin, insert a sheath, go to her abdomen and then take one of the hundreds of branches off that down to her sigmoid. They are going to inject 100 mg's between two locations and maybe save a bit for the rectum. But this involves traveling to the first spot, backtracking and going to the second and then to the rectum. Think of it as exits off a highway. He created a map last night based on her MRI. Super cool.

She is actually in the procedure now. It is 3 hours long and after that they usually keep the kids but since she is 22 they said 6 hours laying flat in short stay and if all goes well she can go home.

She is only the 5th or 6th patient they have tried this with. He said so far everyone has gotten immediate relief but it won't last for ever. He is thinking 2-4 weeks. Then we see if the drugs can maintain her. It is definitely a study of sorts and they have her keeping a detailed symptom log and asked for permission to use her images, video of procedure, info etc, for research and teaching purposes which is pretty standard at a teaching hospital anyway.

This guy is hoping that down the road, they can use this technique with newer drugs that will be developed for this application. He also said that for some patients this might be an episodic application, so you just use it when you are flaring as opposed to EEN or Steroids. He is also big into stem cell therapy and mentioned something about that.

He is really hoping it helps her avoid the colectomy but says that we all have to just be cautiously optimistic.

The good thing is she is a great steroid responder. The bad thing is as soon as we withdraw the steroids she goes right back.

The other wild card is that she is currently on double Entyvio and double Humira and we have to withdraw one of the drugs starting 1/1. So if it works with both double biologics there is no guarantee that a single biologic will continue to hold her.

So at best avoid colectomy, at mediocre postpone colectomy to spring (which we all know in her mind is not an option) and worst; colectomy 12/30 which she has already signed up for.

I will keep y'all posted.
 

crohnsinct

Well-known member
OK well she is out. IR doc came to talk with me.

He said her colon is very abnormal. He has never seen one this bad. There is severe vasculitis in her rectum and sigmoid colon and while he hates to use the word dead, there is a section that is not likely to be rescued. Apparently this is a new discovery...vasculitis as it relates to IBD. They didn't know this occurred in the bowel until they started using interventional radiology to actually go in and look.

At this point we are not looking at the steroid injection helping the drugs work. He feels she is beyond that point. But he did say now that they saw what is going on they have some other ideas of what might work for her. Stem cell therapy being one of them but they would all fall under that category of compassionate use and require hospital approval and significant fundraising etc.

He feels she is definitely going to have a colectomy but these things could postpone it another 10 years and maybe medicine will catch up at that point. However, he said while this is all fascinating to us, has serious implications for moving IBD care forward, and we all feel she should take every shot she could take, we are not a 22 year old girl trying to have a life and finish her degree.

At this point we are not speaking with her about any of this. We are just seeing if she gets relief from the injection and taking it one small step at a time. But yesterday I was 1000% thinking colectomy end of month and now I am thinking maybe let's try and if not then next December?
 

Maya142

Moderator
Staff member
Hope the procedure goes well. That's amazing that the EEN has healed her TI and most of her rectum - does that mean that if she has the colectomy, she may be able to reconnect, since her rectum looks a whole lot better?

About the two biologics - M was on two biologics for 4 years and we may go back to 2 biologics soon. Could you appeal? She was also on a double dose of both biologics but because she had literally tried everything else, it was approved. It did take some appealing, but we were successful.

In terms of the formula causing nausea, have you tried slowing down the rate? I know O doesn't have Gastroparesis, but when you lose so much weight and your body goes into starvation mode, that actually slows motility because your body is trying to hold on to every bit of food. So just being malnourished can cause nausea. One option is to slow feeds and to do them over a longer period of time. The other option is to try a GJ tube and a third option is to a motility med like Erythromycin before feeds.
 

Maya142

Moderator
Staff member
I wrote that before I saw your second post...poor, poor O. It breaks my heart that it has gotten so bad.

I'm somewhat confused though. If a section of her colon is essentially dead, doesn't it have to come out ASAP?

But yesterday I was 1000% thinking colectomy end of month and now I am thinking maybe let's try and if not then next December?
When you say postponing the surgery, do you mean so you can try the stem cell transplant? What were the other ideas? I guess I'm just concerned that if her colon looks so bad that waiting a year to do surgery and trying very experimental treatments may do more harm than good.

Sending big hugs. Poor kiddo.
 

crohnsinct

Well-known member
Thanks @Maya142 The issue with insurance is that they have approved these double biologics and the disease has continued to advance so we don't really have a leg to stand on with an appeal. Maybe if this injection gets her to a point where the drugs could do something they would consider?

She has slowed the rate down to in the 70's. When she was inpatient they kept playing with the rate but her nurse figured out it is a volume issue. She said less cans more frequently and that worked. So I think the goal is to try that but we are waiting to see what happens with symptoms after this injection. They said the last 5 patients all saw immediate benefits. Like literally while they were in the hospital, same day, they suddenly got hungry and were not running to the bathroom.

Yes, the improved TI and rectum increase the chances of a successful reconnect. They would just remove the diseased portion of the rectum. But this guy also said just like the colectomy is likely at some point he also feels it will be permanent.
 

crohnsinct

Well-known member
I think the idea is trying to regenerate that "dead" portion because they can still see a few vessels running to that area. If they can't, but get everything else healed I think then the surgery becomes a colonic resection.

Yes, I meant postponing so they could try the stem cell and "other" (sorry can't remember what they were) therapies. BUT getting approval and funding for that sort of thing would take at least 6 months.

I agree! The reward is great if we postpone and all these other things work but the risk is also high. I just don't know what the right answer is. I guess O will let us know. But right now it is just a waiting game.

Her BP is really low so she might not get out today.
 

Maya142

Moderator
Staff member
What about getting dermatology to prescribe Stelara and GI to prescribe Humira? Or vice versa, with derm doing Humira and GI doing Entyvio? That's how we do it - my daughter has not come close to remission but her doctors have fought for two biologics because having multiple surgeries (she's had 11 so far) and hospitalizations are more expensive than biologics!

I'm sorry things are so confusing. I hope your GI is able to guide you and figure out a good plan for O. And I hope her BP comes up so she can go home soon!
 

crohnsinct

Well-known member
We’ll derm prescribing Humira won’t work because Humira isn’t helping her psoriasis what so ever.

Maybe Stelara but the derm dose is so much lower than theIBD dose so not sure.

That is a good point in hospitalizations BUT in O’s case the colectomy will actually stop that more than drugs will. no colon;no worries.
 

my little penguin

Moderator
Staff member
We have one doc prescribe two biologics
Both injectable’s and both through prescription benefits
But they are use to treat two separate conditions (actually there -Stelara does the crohns and arthritis)
Even then it took a big long fight for many months .
Two biologics for one condition would be extremely difficult to stay approved
 

crohnsinct

Well-known member
It's been a year and a half on Humira and 2.5 on Entyvioand we are still at this point. It would be hard to convince them to poor more money into this option. I guess there is always Stelara but not likely that will rescue her colon at this point. Same with Cimzia. Her old GI doesn't even use it anymore.
 
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