Heard from Doc today

Yowzers. That is high and has quadrupled in a short time. Poor O.

In her shoes I think I would be seriously revisiting the idea of surgery. I am a stelara fan but I am wondering if the malnutrition/ damaged bit of bowel is going to be too much for any drug and perhaps that all needs dealing with to then give stelara a chance of working?
My other thoughts are... drop out for a year versus have a glorious successful year is one choice. But what if it’s postpone a year versus limp along in and out of hospital feeling crap with the risk of have to pull out later in the year anyway? Which I know was part of her thinking at Xmas.
Secondly - two weeks recovery from an ostomy - I would not want that pressure or expectation and just the thought makes me feel stressed all the way over here in England!
Finally and I know we are in long shot territory but I might be thinking if tofa not working, which means surgery probably inevitable? I would go sooner rather than later to limit further bowel damage to minimise a no reversal possible decision later. Unless new doc says already definitely impossible.
I agree stem cell really high risk when surgery and stelara still not tried.
I’m glad you’ve got a new doc. I would be asking very much along the lines of what would you do if you were me, my age and history with these symptoms and test results and go in with an open mind but prepared for a imminent surgery recommendation.
What a frigging horrible disease this is to put your little girl through so much. Thinking of you all xx
 
Sorry to hear about the high Calpro and very glad to hear about her apt with the new GI.

That there's no way to make up 15 hours of clinic time really frustrates me. There should be a way! They really do not seem to be very accommodating. Is there any possibility of doing this internship at another time in the future at this amazing place? The amazing place wanted/wants her (because she is amazing!!); she might be able to defer her internship given her medical issue. I think she should ask.
 
As for accommodations, we checked with the school. They will "allow" her to withdraw from the program for a year and then rejoin next spring. That IS the accommodation. Because usually if you withdraw you can't come back. A lot of the restrictions are because she is seeing clients in clinic now and there are strict requirements with regard to licensing about how many hours they have to practice with supervision etc. She has her set 4 clients a week and an eval slot but if she misses three weeks she will be short about 15 clinic hours and will have no way to make that up. So while the program is very sympathetic to her predicament, they have only granted her permission to withdraw (losing her tuition for the semester) and rejoin next January.

She will be devastated as she also just found an internship close to home that was supposed to start next January. This internship is the last thing they do before they graduate. She didn't like the placements that the school had and went out and found this amazing place by us, contacted them, interviewed and they agreed to take her on as an intern. They even said if it works out, they would keep her on for her fellowship year! But if she has to drop out, she also loses that internship.

This all stinks because she was ready for the surgery and he pulled the rug out from under her. Now, I am not even sure her heads in that space anymore and she would have to do a lot of work to get back to that place. Especially given he stakes are a lot higher now.

She has been talking to other ostomates and they tell her she is really dreaming if she thinks she will have the surgery and return to school and clinic in two weeks. They are telling her it took them almost a full 6 weeks to get to feeling capable of handling full days at work etc. But if I had to bet anyone would do it, my bets would be on O. I would probably go back to school with her and help her for couple of weeks, until she is eating regularly anyway.
Click to expand...
Is finding someone to supervise her the issue? We had that issue when M needed to spread out upper level labs over 3 days (they're 6 hours long 2 days a week which was too much for her) and she had to be supervised in the teaching labs at all times...unfortunately, she had to withdraw from that lab and do it the next year so that the department was able to arrange with a professor/lab instructor to supervise her...but her school was NOT the most accommodating till the end of her degree. In the end we wrote a letter to the President of her university and that got us an appointment with the Provost and after that, they were VERY accommodating. Worth a try, though I think it probably works better for undergrad vs. grad school.

I do agree with @xmdmom - I would tell the internship about her medical issues and I bet they will offer her a spot for next year. She is very bright and motivated and honestly, I bet they would be impressed by her passion and determination in the face of so many challenges.

Poor O. I'm furious with her GI for making her try Tofacitinib...I'm SO glad you're getting ready to transfer her care. She should have had the surgery over winter break.

I do hate the idea of her going back to school after two weeks - if anyone can do it, it's O, but I don't think she should have to. She should give her body time to recover. She's already underweight and she's likely to lose more weight with surgery - I hate the idea of pushing herself to get back to school ASAP. I watched M do it after her joint replacements and she did not give herself nearly enough time to recover.
Taking two weeks off when other ostomates say it should be 5 or 6 weeks 😬 ...I'd be a lot more comfortable if she could at least give herself 4 weeks.

Ugh...this makes me want to kill her GI. He pushes surgery for over a year and then when she finally agrees she needs it, he suddenly refuses?! Your poor kiddo.
 
Hey y'all. O saw the guru GI this week. Quick recap:

- he doesn't think she has been in remission for years other than maybe her first year or so after dx
- she is at the end of pharmaceutical options - surgery is the next step
- she doesn't qualify for any of their clinical trials
- Tofa is a fast acting drug and if it isn't working by now it likely won't
- He wouldn't consider Stelara - too slow and she doesn't have that kind of time and only works in 30% of rectal cases and that is all rectal cases not the severe refractory ones so really not likely to work for her
- he ran labs, asked her to meet with surgeon and dietician
- this center is so big that they literally have an IBD Colo-Rectal Center so the surgeons only do IBD surgeries. Pretty cool.
- GI said he wanted scopes after she got out of school in May but her calpro returned at >3000 and they called and said scopes asap.
- she met with surgeon. He was very nice. Has IBD himself and a colectomy. Did the same thing she is doing. Delayed, delayed, delayed and it ended up being emergency surgery and he lost a year of school but said it is now a blip on the timeline of his life. He stressed to her to put health first.
- lots of thinking out loud on surgeons part but really needs to look at MRI and hear from GI what he sees at scope but he is thinking IF her ascending and transverse are good she might be able to get by with a resection and temporary ileostomy but that might mean more surgeries if disease spreads but at least she could get a few more years out of her colon but also increases risk of colon cancer. We aren't getting our hopes up.
- she needs an iron infusion and higher doses of vitamin D
- she really liked the dietician

She isn't sure if she actually wants to transfer care just yet. I am letting her sit with it for a bit. But she did schedule the scopes for 4/18 with new guy.
 
crohnsinct said:
Hey y'all. O saw the guru GI this week. Quick recap:

- he doesn't think she has been in remission for years other than maybe her first year or so after dx
- she is at the end of pharmaceutical options - surgery is the next step
- she doesn't qualify for any of their clinical trials
- Tofa is a fast acting drug and if it isn't working by now it likely won't
- He wouldn't consider Stelara - too slow and she doesn't have that kind of time and only works in 30% of rectal cases and that is all rectal cases not the severe refractory ones so really not likely to work for her
- he ran labs, asked her to meet with surgeon and dietician
- this center is so big that they literally have an IBD Colo-Rectal Center so the surgeons only do IBD surgeries. Pretty cool.
- GI said he wanted scopes after she got out of school in May but her calpro returned at >3000 and they called and said scopes asap.
- she met with surgeon. He was very nice. Has IBD himself and a colectomy. Did the same thing she is doing. Delayed, delayed, delayed and it ended up being emergency surgery and he lost a year of school but said it is now a blip on the timeline of his life. He stressed to her to put health first.
- lots of thinking out loud on surgeons part but really needs to look at MRI and hear from GI what he sees at scope but he is thinking IF her ascending and transverse are good she might be able to get by with a resection and temporary ileostomy but that might mean more surgeries if disease spreads but at least she could get a few more years out of her colon but also increases risk of colon cancer. We aren't getting our hopes up.
- she needs an iron infusion and higher doses of vitamin D
- she really liked the dietician

She isn't sure if she actually wants to transfer care just yet. I am letting her sit with it for a bit. But she did schedule the scopes for 4/18 with new guy.
Click to expand...

Thank you for sharing your journey. May God smooth out the rough edges for your family going forward. Lots of prayers. 🙏

Where is this new GI office? Still in Cali?
 
No. We traveled out of state. I know one of the big adult gurus is in SoCal but she goes to school back east so it is easier for her to get to this guy than come back west.
 
No news. Things are status quo. No new labs. Scopes still scheduled for 4/18. I guess things will move after that. She is supposed to have an appointment in the next couple of weeks but they had to cancel and haven’t rescheduled.
 
Hey y'all! Update time.

O had a follow up with the GI last Monday. He feels she is very sick and given her cal pro result that he is likely to find significant inflammation at scopes on Monday. He wanted to check in with her and let her know that his suggestion is to move to surgery next. He really doesn't feel Stelara is an option and Rinvoq is a cousin of Tofa and if Tofa isn't working then…..He mentioned a J-pouch and that their hospital is doing J-pouches on highly selective Crohn's patients.

O told him she knew we were heading in this direction and that she is o.k. with it BUT she only had April as in right after scopes or December. He felt waiting for December was taking too many risks and he said April would be better and he would talk with surgeon.

She had an appointment with the surgeon last Monday. Surgeon does not feel she is a candidate for a j-pouch as she has had ileal disease. He "could" do a pouch but disease will just return to the pouch and she will have symptoms and need to be put back on meds and quite possibly have a failed pouch and need a third surgery (first would be colectomy, second pouch formation) to reverse the pouch. O and I agreed that we have heard more regrets about getting a pouch than an ostomy. Surgeon said, "just because we "could" do a pouch doesn't mean we "should"". He also said, "a good ostomy is better than a bad pouch"

So in surgeon's opinion her only options are a total proctocolectomy with permanent end ileostomy or a partial procto colectomy with permanent colostomy. A colostomy output is a little easier to handle BUT they fail 50% of the time when the Crohn's attacks the rest of the colon and you end up having the rest of the colon removed and end up with an ileostomy anyway.

The third option was to wait for colonoscopy and biopsies to assess the health of the ileum. If it looks visually good and the biopsies show no disease then we could maybe try a total colectomy, wait the 3-6 months and then try a j pouch in December. The only problem with this is biopsies won't be back for a bit and surgery would have to be put off to May or June and she would need to take a year off.

She has gotten approval from her professors to miss the last three weeks of the semester and take her finals in the hospital so no interruption to school.

He left the choice up to O. She opted for the total procto colectomy with end ileostomy. She just wants to be done .

Colonoscopy is Monday. After colonoscopy the surgeon and GI will come in and present the findings and their opinion. MRI, to further assess the TI is Tuesday. Surgery is currently scheduled for Wednesday.

They are of course still hoping that the scope might show healing and we can cancel all this surgery talk but say it is a slim chance. She looks great to me and her symptoms seem to be pretty good so I am not so sure how slim this actually is.

I will let you all know what transpires on Monday.
 
Last edited:
I'm sorry it's come to this decision. :( I'm sure O is disappointed that her options are so limited but it sounds as if she has comes to terms with it and wants to move on. Who can blame her for this? She has so much to do and so much to experience, her illness is doing nothing but holding her back.

I am glad she's coming to a resolution and I hope she comes out of this full throttle and ready to go! (But, still, upset for her and you that these are her only options.) ❤
 
So sad for you both but hugely relieved at the same time, it has just felt unsustainable and risky for so long.
If op goes ahead then yoga pants (wide stretch elasticated waist - think supportive enough to hold things in place but no hard waistline- low slung jeans are not an ostomy friend) and long loose tops help at least in the early days. There is special underwear to make you feel more confident. There are numerous brands of ostomy bags and supplies so a bit of trial and error. Hopefully you will get an ostomy nurse to go through it all with her.
I really hope she gets her life back after all she has been through.
Best of luck with the scopes and lots of love to you both xx
 
Also soft food in the early days - insoluble fibre is to be avoided as you don’t want to block the bag. Custard, rice pudding, white bread good, tomato seeds, cabbage stalks, berry pips bad. Think the opposite of scd!
 
Thanks @Delta_hippo . The hospital she is at is one of the leading colo rectal surgery hospitals in the world. They literally have an IBD colo rectal surgery department and her surgeon is the chief. All they do day in and out is colonic surgeries on IBD patients. They have an entire stoma team and O has an appointment with the team for her first lessons on Tuesday. Later that afternoon she will meet with the ostomy nurse to mark the placement of the stoma. She will be inpatient 4-6 days and they assured us that there will be plenty of opportunity for education.

The whole thing happened too fast for us to order all the free kits and such but you better believe we will get to that.

I will likely be tapping you for advice on all the questions we are sure to have! We have trolled an ostomy forum and man oh man are there a lot of things we are sure to come across. Just when I became an IBD expert I get thrown into something new grr!
 
Thanks @xmdmom I can’t believe we almost let her get this surgery at the childrens hospital that does maybe 4 a year. We LOVE that surgeon but really if a reconnect is in her future the quality of the first operation is key and we really like the adult guy. He is just weird and quirky which if you are going to be digging in peoples bowels all day you sort of have to be😂
 
crohnsinct said:
Thanks @xmdmom I can’t believe we almost let her get this surgery at the childrens hospital that does maybe 4 a year. We LOVE that surgeon but really if a reconnect is in her future the quality of the first operation is key and we really like the adult guy. He is just weird and quirky which if you are going to be digging in peoples bowels all day you sort of have to be😂
Click to expand...

I hear you on the "quirky" personality! It seems like in the medical field, the more specialized the area of expertise, the more "interesting" the personalities become!

So much credit goes to you for finding the absolute best place for such an important step.
 
You and O have this CIC! You have a wonderful team who will take great care of O. And imagine, once all the nasty IBD symptoms are gone, who knows what she’ll be able to accomplish!!
M suggests “world peace” and that while she knows it’s a tall order, she says she’s fairly certain O can do it - while finishing grad school, no problem!

We’ll be rooting for you, every step of the way….Sending big hugs!!
 
Lol that M! At this point I would settle for just peace in our hotel room! She is quite cranky.

Surprised M didn’t suggest I adopt a whole animal shelter for her!
 
I've read this whole thread throuought my time lurking on this board and i think both you and your daughter are amazing, I wish her all the very best with her op, sounds like you are in the best hands!
 
WE HAVE A NEW PLAN! This is why you travel to these high volume gurus.

GI said sigmoid and rectum are very very severe severe. Rest of colon and TI look good.

Upadacitinib just got approved a few days ago. It is the strongest IBD drug yet. They are seeing a 70% success rate. Having her try yet another drug in the state she is in is too risky. He would like her to:

- have a diverting ileostomy now.
- start Upa

The diverting ileostomy will help the colon heal and will let her try another drug without all of the risks associated with a massive flare should it not work.

We will reassess in December with scopes. If:

- the TI remains good and the colon and rectum heal, reconnect the TI to colon and maintain normal continuity. The only risk is Crohn's likes to attack anastomosis sites and once the fecal stream is back will the drug continue to work?

- the TI remains good and the rectum heals but sigmoid remains diseased, perform a colectomy and make a j pouch. Of course there will always be a risk of disease attacking pouch or returning to the rectum

- regardless of what the TI does if the rectum and sigmoid don't heal, total proctocolectomy with permanent end ileostomy.

Pros:

- lets her try the absolute last drug without the risk of flare and emergency surgery so if in the end it all has to be permanent there is no “what if we tried”
- gives her time to come to terms with ostomy so if it later has to be permanent it isn’t such a shock

Cons:

- possibly another 2 surgeries…the take down or pouch formation and then if those don’t work the colectomy/proctocolectomy
- disease spreads or cancer forms but we will catch it quick enough and then just do the colo/proctectomy anyway.
- Upadacitinib is immune suppressing, unknown longterm risks
- insurance might not approve it

While she would rather not have to have an ostomy at all, she thinks this is a pretty good plan.

She got her stoma tattoo today.

She has to remain on clears only until Wednesday which stinks but oh well.

MRI tomorrow to assess TI health so we have an idea of what might be possible in December.

Manometry test tomorrow to assess sphincter function. This is just another piece of the puzzle that we will need to know to decide what is possible in December.

They are cautiously optimistic and given everything O has tried they won't be surprised if it doesn't work but we have to try.

There ya go! All caught up. I think this is the best possible plan and feel really good about it. O also but she wants to eat!
 
Woohoo 🥳
Sounds like a great plan and gives her options
And time to adjust to the idea if it’s permanent
Hugs
Big hugs to O
Being clear stinks
But makes sense since she has MRE Tuesday and then surgery for ostomy Wednesday
 
What a rollercoster!

Was Upadacitinib approved for Crohn's?

I see nothing on Abbvie's website or in the news. The only recent approval I saw was the approval for UC last month. Could it be that her doctor is in the know and heard it's going to be approved or was approved but not yet announced? Or have I lost my googling abilities-- I'm a bit sleep deprived so that's definitely possible.

I am thinking of her and hoping things go very smoothly for her. She deserves some smooth sailing!
 
I am thinking they are keeping the UC dx or like you said he knows something. You are definitely NOT losing your skills.

BUT I uncovered a host of other questions…namely Rinvoq is enteric coated and you are not supposed to take enteric coated meds with an ileostomy because they are made to release in the colon so basically all that money will be spent to treat her ostomy bag with Rinvoq.

Can crush it. Maybe they have a different formulation? But my forum angel uncovered that ostomy patients were excluded from the trial. Likely for this reason.

Soooo not sure what this means for us.
 
Was Upadacitinib approved for Crohn's?

I see nothing on Abbvie's website or in the news. The only recent approval I saw was the approval for UC last month. Could it be that her doctor is in the know and heard it's going to be approved or was approved but not yet announced? Or have I lost my googling abilities-- I'm a bit sleep deprived so that's definitely possible.
Click to expand...
It was approved for UC...it is in trials for Crohn's. I don't know if it's been filed for approval yet though. My kiddo was on it for her arthritis (15 mg) once with an anti-TNF (caused a lot of infections) and once at a higher dose by itself (30 mg - which is what the maintenance dose is for UC, the induction dose is a whopping 45 mg). It worked for her Crohn's (we think, she wasn't scoped) but it unfortunately failed for her arthritis.

Upadacitinib is enteric coated and CANNOT be crushed. We asked the pharmacist and then actually contacted drug manufacturer (since M's Gastroparesis means she does not absorb oral meds well - everything goes through her J tube, so we need liquid meds or meds that can be crushed) and they said the same.

Xeljanz does have a liquid formulation and I think a non-enteric coated pill form, but I don't believe Rinvoq does. But perhaps the UC pills are not enteric coated?

It is also light sensitive, so it can't be put in a pillbox - you have to keep it in the bottle they provide.

Glad they have a plan but I'd check with them on Rinvoq.

How is O feeling about the new plan?
 
The only thing O says is she wants to eat 😂 She will be 3 days on clears only. She has done this before but she had TPN so that helped a lot with the nutrition aspect. This water and gatorade is not satisfying her. She can't do broth. Lemon Italian ice was meh. Hates Jello.
 
Popsicles?

I definitely would ask about the med in an ileostomy tomorrow cause if it can’t be given then what is the plan?

Would she only be to Upa?

"the TI remains good and the colon and rectum heal, reconnect the TI to colon and maintain normal continuity. The only risk is Crohn's likes to attack anastomosis sites and once the fecal stream is back will the drug continue to work?"<--- what does the doctor say? How likely is this?

I want to know about the study where there was 70 percent success. Was that severe Crohn's and endoscopic remission?

That it is approved for UC and they'd treat her with it, reminds me of the old doc with Tofa. My understand it that Crohn's and UC are different diseases that respond differently to drugs. Calling her illness UC won't make it respond like UC...
 
I haven't found popsicles but will keep trying. Maybe the cafeteria has something.

I had her send the message to the GI cuz he will handle the med side of things. I will be so miffed if then we are back at postpone surgery to try Upa, especially after he said earlier today that this wasn't a good option.

Crohn's attacked the anastomosis…pretty likely but no way of really knowing. But if we get good control over her disease then less likely.

I can not find 70% anywhere. Granted my google skills and access to studies is no where near your level but the rest I can find is 40%. I think the 70% figure is antidotal among GI's at conferences etc.

So true on your last point, however, Tofa failed miserably in Crohn's and they discontinued trying to market it for Crohns and Upa is doing well (by IBD drug standards) in the Crohn's trials. But I did read the criteria and while they had people exposed to multiple biologics none of them could have abandoned the drug for non response. It had to be insurance issues etc. This isn't to say that they didn't have non responders in the trial…I think they did but if you aren't studying true multiple non responders then…..

My mood just took a sharp turn.
 
I don't know about the 70% rate but I know M's GI had patients in the Upa trial and was very pleased with how it was going. These were patients who had failed other drugs and she said had been really sick. So perhaps there's hope? I do think the enteric coated thing is going to be an issue unless there is a different version of the drug for UC? M was getting it for arthritis, so she was taking 2 pills of the normal arthritis dose (2 x 15 mg) and those were enteric coated.

O has a tube still, right? How about pumping in some broth? It might help feel less hungry. M is the opposite - she only drinks broth before scopes. And she will sometimes have a popsicle. So I do the opposite and put plenty of gatorade in her stomach through her G tube!

Poor kiddo...I hope she has a good TV show to watch to distract her.
 
They are the experts and this is the plan they came up with so one would hope that they have thought it all out.

In any case, this is the time to ask all of your questions.

(((Hugs)))
 
I am concerned that we are going to be asked to postpone surgery and give Rinvoq a try and face the risk of it not working and surgery in July or August. That would stink.

I am hoping there is another formulation or that the say a good amount gets absorbed sooner.

Great suggestion on the tube. I will try that.

No TV. Just sitting here doing school work and watching Tis Toks.
 
Well she asked the question so we will see what they say. It could simply be a matter of, "oh yeah that's what they say but it really doesn't matter"…how many times have you heard that before?
 
Hmmmm...well all we were told it really definitely cannot be crushed and if with an ileostomy she cannot absorb it, I would hate for her to have to waste months trying it.

I REALLY hope they don't delay the surgery - she would definitely have to take a year off then, right? And she really does not want to?

Also, MRE contrast can go through the tube - to save her from drinking it!
 
OH! You know what I forgot to tell you guys….I know you all think O is tough but…She was awake for scopes! EGD and COLO! She said the EGD was rough and she gagged a good amount. I think they gave her some local but she said he hit a point where she said "ohh" and the pinches for the biopsies were REAL pinches. She misses pediatric scopes.

Yes @Maya142 I think if she tried Rinvoq without the ileostomy we would give it 3 months max and hen surgery and that means a year off and she is loathe to do that.

She packed her bolus tubing etc because she fully plans to do the contrast through her tube. She digit that way last time and only had a problem at the very end. After she has to do two doses of milk of magnesia to get the contrast to clear her system in time for surgery the next morning. He is going to try to do her first or second.
 
What?! Awake?! Seriously?!! That's insane! M has had adult scopes and was very asleep - that's standard at the hospital she's at. Heck, I have had adult scopes and was very asleep. O IS tough - there's no way I'd EVER do awake scopes - I'm way too much of a chicken! They always use Propofol for M's and that's what they used for me too.
 
I had a scope and was asleep but dh had a scope same adult hospital as me but different office etc … was awake but medicated (so he didn’t care )
So it does depend on the place
 
Yes, I've heard of using Versed and Fentanyl so you're awake but out of it, but never completely awake scopes. Yikes 😬.
 
At the MRI now. Just finished the manometry. She said it was just weird but not terrible. All her results posted and none are within normal limits…shocker. So maybe pelvic floor therapy heading her way to prepare for if/when she reconnects.

Her original GI from CT has stayed updated on her case through a nurse I stayed friends with. He feels this is not a bad plan and that she needs to get on with her life. Said there is very limited data on Rinvoq for Crohn’s and that he really thinks the ostomy will be permanent but baby steps.
 
Glad the manometry wasn't too bad. She really is a trooper. Many years of inflammation and diarrhea probably led to low muscle tone and/or pelvic floor dysfunction. She'll have to work with a physical therapist who specializes in pelvic floor PT.
My daughter actually has a friend who has severe pelvic floor dysfunction due to years of constipation from Crohn's (hers is primarily in her small bowel and rectum) and she ended up with a uterine and rectal prolapse, so it's definitely better to treat it before it gets bad.
 
Popping in from the hinterlands. I hope things go well for O and that there's no delay in surgery.

I thought enteric drugs were coated to not dissolve in the acid environment of the stomach, but then dissolved and were absorbed in the small intestine. Is Rinvoq specifically designed not to release until the large intestine? I tried to look it up but didn't find any specifics about where it is released/absorbed (other than just that it has the enteric coating).
 
GirlwiththeCurl said:
Popping in from the hinterlands. I hope things go well for O and that there's no delay in surgery.

I thought enteric drugs were coated to not dissolve in the acid environment of the stomach, but then dissolved and were absorbed in the small intestine. Is Rinvoq specifically designed not to release until the large intestine? I tried to look it up but didn't find any specifics about where it is released/absorbed (other than just that it has the enteric coating).
Click to expand...
We were told it dissolves lower than the stomach (which is too acidic, as you said) - my understanding is the small bowel but honestly that’s just an assumption because many drugs are absorbed there.

I think a pharmacist who has experience with ostomy patients might be the one to ask. Or someone from AbbVie.

Sending big hugs to O!!”
 
I have had luck calling the inpatient pharmacy and asking to speak to a pharmacist snd asking my questions. Just say you are a family member of a patient there.
 
She did great!

I always laugh when surgeons say that. Like ummm of course she did you knocked her out! What they mean is “I did great”😂

The surgeon checked in with us before and said they reviewed her MRI. TI looks good. Sigmoid and rectum maybe a little bit better BUT the sigmoid is getting dilated so we know we are doing the right thing.

After surgery he said TI even looked good when he went in. This will be key to reconnect. We just have to sit and wait to see how the sigmoid and rectum do on Upadacitinib. I didn’t ask how long we are going to wait to evaluate that. I am just concentrating on the here and now.

He also did say that she has a beautiful ileostomy…haha if he does say so himself. But that will also be key to her feelings if this all actually ends being permanent which there is a big chance it will.

She can’t eat until tomorrow.
 
The hospital is booked solid. The only bed they had for her was in a short stay unit and apparently everyone else here is also not short stay patients. She is in one of 10 bays. The little princess is definitely not used to these accommodations! She misses her resort pediatric hospital.

That said she is laughing, smiling, sitting up doing homework. Has already looked at her bag and stoma (they use see through bags in the hospital), when I got upstairs to her bay she showed it to me and has already walked down the hall to the bathroom.

So all in all a pretty good day. Just supes loud in here and distracting and no shower etc. but it will give her the motivation she needs to get outta here.
 
Way to go O!!!! That’s incredible!!!
The short stay unit does not sound fun - we’ve done it for two nights but I can’t imagine doing 4-6.
 
O.K. y'all. Bragging Mom Alert

O hasn't had a stoma nurse visit yet but her bag was filling with air and getting pretty big. So little miss thing picked up the bag, opened the bottom valve and squeezed out the air. I said, "maybe you shouldn't be playing with your bag until they teach you" She said, "I watched the nurse do it earlier, I am just letting out a little air. Relax mom".

So I would say that for today she is pretty well adjusted.
 
Lesson time - they did a loop ileostomy not an end ileostomy. I will let you look them up but the loop is where they take a piece of ileum up and make a loop, cut it and fold it back to create the stoma. The end they just cut the TI from the colon and pull the end out.

The difference is that the loop is intended for temporary surgery. For O specifically the loop was used so IF they reconnect the anastomosis is in the ileum rather than the colon. Remember Crohn's likes to attack anastomosis sites and her Crohn's is worse in her colon.

Have I told you how much I appreciate the new team.
 
Day 1 post op - no sleep too loud but she tells me her bag was full and no nurse around do she just walked down the hall and emptied it herself.

They have to measure all output. Dehydration is one of the big issues with an ileostomy so they are taking labs and measuring everything.

First nutrition lesson. On soft GI diet for 4-6 weeks.

Surgeon came in and said she and her stoma look great. He may approve releasing her early because she will get more rest in the hotel than in short stay but we could talk more about that tomorrow.

Oh yeah and she went to the bathroom and came back saying and I quote,”I pooped! Like out my colon! Thought I wasn’t supposed to do that anymore!” She is being funny. She understands that obviously there was some stuff in there that needs to go but she thought it was funny.

Surgeon said it’s going to take months to get the upadacitinib will take months to get approved.

Waiting for them to get her xeljanz added to her med schedule so she can start taking it again.

Sorry to bore you all with the details but figure this could be useful for someone else down the road.
 
LOL Asacol and Pentasa are famous for that BUT from what I have heard from UC peeps is you can get all the medicine and just the shell of the pill comes out. They call that a ghost pill….but you sorta have to fish it out and feel it to make sure which it is….They skipped that chapter in What To Expect When You're Expecting.
 
She is doing so well! Amazing girl. Yes you do continue to poo occasionally, the colon makes a kind of mucus can’t remember if it’s a self cleaning lining thing or something like that so a (small) clear poop every few days.
She is doing so well. I’m so glad. Hugs to you both xx
 
Wait, why would the Rinvoq take months to get approved if her dx is UC? They approved Xeljanz fast enough and that’s for UC.

You do see what we think is the shell of Rinvoq in your poop. Either that or it was the whole Rinvoq…we couldn’t tell. We did not try fishing it out…I skipped that chapter too in What to Expect When You’re Expecting.

Just FYI, we were able to get Rinvoq approved for M when it had only been approved for RA - based on the fact that she had failed everything else. O has failed everything else too (well, except Stelara but they don’t want her on that) and so I would hope it’ll go through. We did have to appeal for it but it didn’t take that long as far as I can remember. Especially since there were trials that showed it worked in psoriatic arthritis and AS.

When would they consider discharging her?
 
@Delta_hippo They told us they only give her about 2 or 3 bags and related supplies and that this should get her to her first delivery. So we went on the Hollister site and immediately got overwhelmed with all the choices of products.

We decided to wait to meet with the WOC nurse because maybe se will have some advice of where to even start and sizing etc but yikes there is a lot to get used to and to consider. I sense quite a few shipments coming her way.

How long did it take you to find your favorites and what worked best for you?

You would think they would make some sort of contraption with a screw top that attaches to you and then you could just unscrew disposable bags whenever you wanted and screw on a new one.
 
@Maya142 Hmmm IDK, they are just saying from their experience. Also, I think it might be a little different for UC considering, surgery is a cure and then the insurance company stops bleeding money, well except for ostomy supplies but still nowhere near the cost of these meds. M didn't have a surgery option.

He is already saying she maybe able to get out tomorrow. He said she will rest better in the hotel and as long as we are close and can run back he is amicable to letting her go…assuming her labs trend well, the stoma looks good and output looks good. Oh and stoma training is complete.

All her numbers took a quite a hit with the surgery. H&H, CRP, albumin etc. I am hoping they come up a bit before they let her go.
 
That does make sense - no way you can replace every joint involved, you have to be on a medication.

So will they then have to get it approved for her Crohn’s? I still think with appealing it will be doable but yes, then it could take a while.

I hope the stoma training goes well!
 
I think they are keeping the UC dx because the ileum looked good and it will be easier to get the Rinvoq (upa) approved that way.
 
I am not sure what you meant by “All her numbers took a quite a hit with the surgery. H&H, CRP, albumin etc. I am hoping they come up a bit before they let her go.”

Exc for bleeding, transfusion or hemolysis (destruction of red blood cells), any rapid changes in H/H numbers are related to hydration status. Higher numbers are usually dehydration.

Same with albumin. “Albumin levels can rise when a person is dehydrated. This is a relative increase that occurs as the volume of plasma decreases.”

CRP rises a lot after surgery (in everyone) and can take a while to go down. The IBD team should be very familiar with the usual postoperative levels and time course of normalization of elevated CRP.

Ask the doctors if you have concerns or just want to know!
 
Yep. That’s what I was thinking. Her last tests were day after scopes and she had to be pretty dehydrated so they were artificially high. That rather than blood loss with surgery.

So now H&H are really down but she is getting round the clock fluids so finally hydrated. So maybe this is actually where she would normally sit. Who knows. But yeah. The team is watching them and the fact that we are staying close by means a simple stop into the lab so likely no reason to keep her longer.
 
So yo u want bags that you cut the hole yourself rather than precut because as swelling goes down and area heals the stoma can change size. The idea is get hole as close to aroma size as possible to protect the skin around it because the liquid poop being higher up is quite acidic.
Here in the UK I just got issued with bags which worked fine.
The stuff that wasn’t automatic and I advise getting hold of are:
1. Banana skin stickers- these are a clear plaster shaped like a banana that you stick over the edge of the bag to your skin advert an extra layer of protection to minimise risk of leaks
2. Scented drops - you put these in a bag and neutralises any smell or odour so feel less self conscious
3. Special pants or waist band - you can get stoma underwear which has a built in pocket to support the bag - either these or a stretchy waistband type thing - again makes you feel more supported and confident
Get loads of wipes you will get through a lot in the early days
Keep an eye on skin around stitches for post surgery infection. Any new onset back pain is a warning sign too
A bag lasts 2 or 3 days depending how often you change them
You can get a spray to loosen the bag before changing. A friend with UC just soaks in a hot bath for a bit.
I hope it is all going well. No question too silly or gross 😊
 
LOL! Our forum is also a fashion forum now.

@Delta_hippo she is thinking of wearing spanks for when she feels like she needs a little ore support to hold the bag.

SHE IS BEING DISCHARGED!

The surgeon said she did amazingly well. He said top 10%! He is on call all weekend and we are staying in a hotel on the hospital campus so if anything he said just have them page him although as good as she is doing he doesn't anticipate we will need him. More like we will need a stoma nurse for pushing issues:)

We will stay here for about two weeks, have her follow up with his NP and the stoma team and leave from there.

This is so amazing. We are used to being the patient that doesn't get to go home on time ever and now we are leaving a day early. If that doesn't say this needed to be done, IDK what does.
 
So incredibly impressed with O and SO glad she's being discharged!! I hope she is able to get some rest at the hotel!!

I think stoma specific underwear or pants or knickers or whatever you call them are a great idea. Spanks might be hot...I'm just thinking that as it gets to be summer, she may be very uncomfortable in them, if she's going back to school.

When does she go back to school?
 
Yep! That’s why it is so important to do these surgeries when it’s not an emergency and you can do it laparoscopically.

Lol Maya…IF she is going back to school. She of course is! Classes start 5/18. We hanging out here till post surgical follow up with surgery and stoma nurse. Then will drive to where T goes to school and watch her play ball. After that it’s up in the air whether or not she will come to ca for a week or go to school. She doesn’t want to go to school because then she will have a week and half all alone.
 
LOL - oh I know she's going back to school eventually 😂 ...this is O we're talking about! I just didn't know when (you also mentioned an internship in CA, so I thought that might be before she goes back to school). I figured if she was going back in the summer she would be very hot in spanx. Would high waisted underwear work because my daughter tells me that is a thing and she should look at Aerie if that would help.
 
Yes where she goes to school it is like a swamp in the summer. I hadn’t thought of that. I wish she would wear a nice flowy sun dress.
 
Well M even says that she may be able to find a bikini that covers her stoma - she showed me a whole bunch of high waisted bikini bottoms (we don’t have a good sense of the size of her bag though). M has managed to find a bikini that covers both her g and j tubes!
See, it’s all about the fashion now…no IBD!
 
Lol! Yes! And O needs two dresses to wear to weddings so tell M to get on it!

OK so the thing with the bag isn’t so much how high it sits but how low it goes. O and I were really quite surprised at how long the bag is. She actually said it will likely hang out of the bottom of her shorts a little😳 yeah she has some really short shorts!

Then for now anyway the bag is pretty big and bulky but I think that’s a function of her stoma still being pretty big (they shrink down over time) and the institutional bag. I think we can shop around to find a more comfortable bag. I think they make smaller ones also but then you just have to empty them a lot more frequently and she is already emptying hers like 8 times a day.

Will send a fashion update as soon as she feels up to going out. For the weekend she is going to lay low and study for finals which are this week. Probably a good idea to heal a little more before dragging around malls and such. I will stay in the kitchen whipping up GI Soft Diet culinary delights🤮
 
Last edited:
So the thing with Spanx is they just squish everything so okay for a night out but too much wear and the stoma might get sore. You can get special swimwear and underwear (thanks Scipio!) have a look at siilostomy.com or similar but if she decides to go that route get ready for tears when you get the credit card bill 🤣
 
In terms of emptying all the time if the output is too watery and that is why filling up a lot talk to the stoma nurse they might recommend porridge or similar to slow it down. And watch out for dehydration especially in hot weather (remember the colons job is to extract water and some nutrients). If she is on vitamins (d?) look for a spray or liquid version any regular meds check with pharmacy if they can be crushed. Depending where they operated she might need to supplement b12 (I want to say terminal ileum but not sure) there is a specific bit of bowel that absorbs it so need spray or injections instead.
 

Similar threads

A
What would you do?
Replies
22
Views
2K
Delta_hippo
D
S
Two year old with symptoms
Replies
22
Views
3K
J100
J
K
This has destroyed my life.
Replies
8
Views
1K
ronroush7
ronroush7
C
Jaw swelling,
Replies
9
Views
1K
asadmom
A
K
So confused after apparent relapse
Replies
6
Views
1K
Opieshuffle13
O

Latest posts

Back
Top