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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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