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So from what I remember, in hospital you got an enormous see through bag so they could keep an eye on output and didn’t have to change it too often, once set up with ordinary supplies it was smaller and not see through, grey as I remember. So this might be a short term problem. Have a look online at people modelling ostomy bags and see if they look smaller than hers. The underwear I mentioned has a pouch inside so the bag sits in that, definitely not trailing down a leg. I think she is still on hospital bags. They don’t discharge you until food has gone in at the top end and poop into the bag at the other end so it lets them just glance and see to check if things are working!
 
Ahhh. That explains it. I am going to have her call around to the various companies and get some free samples. Hopefully they can get them to the airbnb in time for us to try shopping. No sense shopping with this big, loud bag.
 
Lots of hugs to O! As amazing as she is, this is still quite a lot to process, learn, etc. Thank God she has you to help her get through the first little while.

I'm sure you know this but just in case... I've seen quite a few posts on TikTok re stomas. There was even a girl on there who makes covers for her bag and matches the fabric to outfits! Maybe it'll help O with the 'fashion' side.

Thinking of you guys!
 
O is such an incredible kid. I'm so very proud of her. I'm sorry to hear she's having bleeding and diarrhea but I guess you're right that things won't heal overnight (though I really wish they would!!!). Could rectal steroids help? Just temporarily?
 
That's actually not a bad idea @Maya142 but she mentioned it to the GI at her appointment yesterday and he was mildly interested. Said just to watch it and if it doesn't get better to call.

Did her first bag change on her own today. Man the WOC nurses make it look so easy! Just hoping she got a good seal and she doesn't spring a leak. In the Air BNB all day taking finals so if she does not the end of the world.

She is super comfortable with the stoma now. Actually looks at it through the bag often, analyzing amount of output, consistency, activity of stoma (peristalsis) etc. It is like a new pet! So tell M thanks but no thanks she doesn't need a kitty, puppy, gerbil or otherwise.

Her GI called her in because they have a program at this hospital where they get upadacitinib for free for up to a year and they have it right there! However, they needed an in person appointment to tick all the boxes. The fellow said that if it works, when the year runs out her insurance will have to cover it because she had been on it for a year, some little known loophole. Boy am I glad we came to these guys.

So she should be getting her upadacitinib by the end of the week.

Shingles and pneumonia vaccine given in the office. Hep A & B to be gotten at home (no antibodies on testing they did in hospital). They are trying to get her the iron infusion for while we are here.

Surgeon set up a home health care nurse to check in with her while she is in town. Home health nurse set her up with ostomy supply rep. Rep called a different company than the one she is using and got her some free supplies sent to the Air BNB.

So, post op check with NP and stoma nurse on 5/3, then we can leave. Lipid labs in 8 weeks. F/U with GI in three months. December scope and next surgery. Surgery will be determined by scopes….either Total procto colectomy and change ostomy to end ileostomy or reconnect.

That's it! No more monthly GI appointments, monthly labs and weekly emails with updates….haha and endless questions from mom. Just go out and live your life and we will see you in December! How freeing! Yeah there is the whole endless stoma management questions but that's what forums are for;)

Try not to miss me while we are gone;). JK you know I will be here.
 
crohnsinct said:
That's actually not a bad idea @Maya142 but she mentioned it to the GI at her appointment yesterday and he was mildly interested. Said just to watch it and if it doesn't get better to call.

Did her first bag change on her own today. Man the WOC nurses make it look so easy! Just hoping she got a good seal and she doesn't spring a leak. In the Air BNB all day taking finals so if she does not the end of the world.

She is super comfortable with the stoma now. Actually looks at it through the bag often, analyzing amount of output, consistency, activity of stoma (peristalsis) etc. It is like a new pet! So tell M thanks but no thanks she doesn't need a kitty, puppy, gerbil or otherwise.

Her GI called her in because they have a program at this hospital where they get upadacitinib for free for up to a year and they have it right there! However, they needed an in person appointment to tick all the boxes. The fellow said that if it works, when the year runs out her insurance will have to cover it because she had been on it for a year, some little known loophole. Boy am I glad we came to these guys.

So she should be getting her upadacitinib by the end of the week.

Shingles and pneumonia vaccine given in the office. Hep A & B to be gotten at home (no antibodies on testing they did in hospital). They are trying to get her the iron infusion for while we are here.

Surgeon set up a home health care nurse to check in with her while she is in town. Home health nurse set her up with ostomy supply rep. Rep called a different company than the one she is using and got her some free supplies sent to the Air BNB.

So, post op check with NP and stoma nurse on 5/3, then we can leave. Lipid labs in 8 weeks. F/U with GI in three months. December scope and next surgery. Surgery will be determined by scopes….either Total procto colectomy and change ostomy to end ileostomy or reconnect.

That's it! No more monthly GI appointments, monthly labs and weekly emails with updates….haha and endless questions from mom. Just go out and live your life and we will see you in December! How freeing! Yeah there is the whole endless stoma management questions but that's what forums are for;)

Try not to miss me while we are gone;). JK you know I will be here.
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You girls are amazing honestly. Your determination and positivity is unbelievable!
 
So she will be getting Upa by the end of the week but does she need to wait a certain amount of time after surgery or vaccines to start taking it?
 
Yes, she should be getting the upadacitinib by the time we leave (5/3). The hospital has a specialty pharmacy and a good supply of it. She is taking the xeljanz while we wait even though it didn't get her to remission, it did keep her from disaster zone so they want her to keep taking it. They didn't say anything about waiting and she is taking her xeljanz so…..

Hydrating is still a little bit of an issue because she can't drink straight water and can't process artificial sweeteners. I think we might have hit on a recipe that will work. If so, I will post it here for others who might be following the ostomy diary.

So here is some ostomy humor courtesy of O.

While in the hospital she went to the bathroom to empty her bag and came back and said, "just think…all those years of potty training wasted"

Today she is still having some activity per rectum. She came out and exclaimed, "Mom, I am still going to the bathroom…the old fashioned way!"

And last but not least, some young guys moved into the Air BNB under us. I met them in the laundry room and told her about them. She wanted to know if any of them were "cute" so I am guessing girl got her groove back.
 
She’s really too much 😂! It kind of sounds like she feels FREE - as she should!!! I know she still has surgeries and scopes ahead but hopefully she will have more normal days that don’t revolve around the bathroom.
She is super comfortable with the stoma now. Actually looks at it through the bag often, analyzing amount of output, consistency, activity of stoma (peristalsis) etc. It is like a new pet! So tell M thanks but no thanks she doesn't need a kitty, puppy, gerbil or otherwise.
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Oh believe me, the next time M asks for a kitten or puppyI’ll be telling her that O says an ostomy is a GREAT pet - after all, it follows you everywhere, communicates with you regularly and potty training is not an issue at all. What more could you possibly need?

M has been asking if O has named the stoma?

Really hope she gets Rinvoq soon!!
 
Maya142 said:
Oh believe me, the next time M asks for a kitten or puppyI’ll be telling her that O says an ostomy is a GREAT pet - after all, it follows you everywhere, communicates with you regularly and potty training is not an issue at all. What more could you possibly need?
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O.K. that made me literally LOL! Potty training not an issue.

Well she hasn't 100% settled on a name but it is definitely a she. She says, "she is pooping, she is being loud, she is quiet".

She originally wanted to call her SAB which is an acronym for…well I will let you figure it out. But it made it seem like O was angry at it. Then she said how about Sabrina and when I am mad at her I can call her Sab. But really it is just her and she for now.

I am starting to get concerned because ostomy supplies haven't come and we haven't heard about Rinvoq and we leave Tuesday. I actually think the supplies got sent to CA because O talked to the guy on the phone and she said he said the supplies will be shipped in a couple of days. I asked her what address and she said, "oh, he didn't say". I then asked, "well did you give him the Air BNB address?" and she said, "oh, no". For a 4.0 student she can really have some brain farts sometimes. She said it is post surgical fog.
 
Stoma/fashion update!

O had her surgical follow up with NP and WOC nurse. She passed with flying colors. Physically looking good, ability with pouching system A+ and mental attitude and adjustment really great! She is cleared to travel away from hospital city.

She did have some skin separation around the stoma that the WOC nurse taught us how to treat. Sprinkle a little stoma paste, cover with a dressing then put on appliance. in a few changes skin will fill in. After that they advise she start using barrier rings to protect the skin around the stoma and increase the life of the appliance.

More importantly, high wasted mom jeans work with her ostomy! And she tried on high waisted bikini bottoms and with some adjusting the pouch fits nicely. She also bought two dresses because dresses are easy. She never wore dresses before so that was interesting.

She is really anxious to get rid of her g tube so she can at least wear crop tops but GI won’t approve that until well after December surgery so stuck with it for a while.

This morning she said if In December she can’t do a straight reconnect she thinks she will choose total proctocolectomy with end ileostomy. She feels like this isn’t so bad and the j pouch will be worse. We’ll see.

Still waiting for Rinvoq and ostomy supplies. WOC nurse gave her a couple of extra pouches and appliances.
 
I love the good news!!! O deserves to enjoy her life now. She is one incredible kid!
 
Still traveling and bored so thought I would send a quick little update.

O had her first leak. It was after our first time changing the appliance with the new procedure of putting stoma powder on the damaged skin and applying the protective barrier etc. Operator error. I think we cut the flange too big for the size other stoma (she's shrinking). She handled it very well. Woke up to the leak but laughed, cleaned up and we just tried to do better. The stinky part is we are running low on supplies so an appliance/bag change 1 day after the last was definitely not on the schedule!

She also ran a fever of 102. On call surgeon was not concerned with infection 3 weeks out. It broke over night so I am thinking it is one of her infamous inflammatory fevers. She fainted the next day so assuming dehydration from ostomy, fever and Crohns is at play. I tanked her up and she got better.

She is STILL visiting the restroom the old fashioned way 6-8 times a day and often urgent. Doesn't seem fair that she had the surgery and is still dealing with the other end. One time was a pretty sizable amount of stool and blood. Her old GI says this is not abnormal.

Insurance denied Rinvoq but her new docs got her into a program where she can get it for 24 months for free. I guess this is the perk of being at a center with 4000 IBD patients most of whom have failed multiple drugs and needed surgery…the companies are anxious for them to get experience with their drugs. Plus they run a lot of the clinical trials and are speakers at many conferences so good to get in their good graces. We only need 6 months for now to get us to scopes and the next big decision.

She goes back to school Monday.

Overall we are good, good, good. She gets to start adding back in fiber foods next week! So excited!
 
I’m glad she is doing okay and Sab not playing up too much.
Re the leak, don’t know if you managed to get hold of the banana peel stickers, but I had a horrible overnight leak once and that’s why I started using them for extra reassurance (I do a lot of client facing work or at least did pre covid)
If staying away overnight and anxious then just put a thick towel on the bed, better to feel confident than stay awake anxious.
Sorry to hear she is still needing the lo so much. Hope that settles soon.
Re the skin problem some evenings I would sit without the bag fully attached just to let the skin gets some fresh air for healing/ respite. It does depend who you live with and freaks out an unexpected amazon delivery 🤣
For dehydration maybe a little heavily diluted coconut water?
The other thing I wanted to say is not to feel pressure to definitely make decisions in December, my GI said you can wait a year, 2 years and still successfully reconnect, so if things are not clear cut/ new hopeful drug imminent/ a bit more time would make the right decision clearer then it might be possible to defer final answer.
Re the fainting is her blood pressure low generally? I struggled with that and the advice was always drink more but a psychiatrist friend told me you should also eat salt to push it up (licorice helps too) so I started carrying salty crisps as a snack.
I so wish she didn’t have all this to deal with, she is doing amazingly xx
 
What did her doctor say about fainting? Is her ileostomy output quite high? Is she losing much fluid per rectum? Did her doc/team recommend an oral rehydration solution or some fluid with electrolytes?

Did her current doc or old doc say how long to expect BMs the old-fashioned way? I hope not long because of the inconvenience but more importantly, I thought the purpose of the ileostomy was to give her colon/rectum a rest.

Curious, was the fever just one day?

Hoping her return to school goes well. No more fainting please!
 
Thanks guys! @Delta_hippo we did get some banana peel stickers in a welcome sample kit from Coloplast but she is currently using a square flange from ConvaTec so they don't really work with that. However, the WOC nurse gave us some sort of tape that I think will work. The leak started from the stoma though and tunneled through the flange so I really think not much we could have doe about that except cut the hole a little more snug as I think it was too big and gave the effluent some place to sit and work its way through the adhesive. Does that make sense? I cut it more snug the next time and it stayed for 3 days. Today I was shocked to see that her stoma shrunk even more so sized it down yet again! The skin around the stoma is still pretty slow to heal. She still has something that looks like a moat around the stoma.

Good point on not feeling rushed to make a decision in December. I mean if the scope shows Mayo score 3 then clearly the Rinvoq isn't working and we need to either move to more permanent surgery or try a new drug if one comes available. I doubt they will let her hang around waiting for another drug though. Not if damage is still present.

As for the fainting, yes she has low blood pressure normally. Has been a fainter before. It always coincides with her Crohn's acting up more than usual so likely dehydration. Years ago she was sent to a cardiologist (when her original GI didn't want to admit that she was inflamed) and he said just eat more salt. So between that and the ileostomy causing dehydration issues she has really upped the salt intake and tried to drink more of the ORS solution. I think the fever added to the struggle this time.

@xmdmom we haven't told her new GI about the fainting or the fever. The fever broke the same night so I really think it was one of her weird inflammatory fevers. Yes, the team gave us a list of ORS formulas to try to mix ourselves but also told us Drip Drop or Liquid IV would work but since she can't process artificial sweeteners we have to mix our own. The winner so far has been 4 cups of water, 3/4 tsp of salt, 2 tablespoons of sugar and a grape Kool Aid packet.

Her ileostomy is a low to medium output and not terribly liquid. Per rectum she is loosing mush…maybe a 1.5 cups per day so not terrible but certainly not what we expected! Especially the frequency and urgency. The rest of the time it is just blood and mucus. No one has said anything about how long it would continue but she has an appointment with the surgeon 6/5 virtually and I will make her ask if it keeps up. Maybe she is a little lucky though because now at least she will be able to tell if Rinvoq works since she is still having symptoms. I totally agree with you though because if it keeps up what was the point of the surgery?! Seems like a lot of aggravation for little return.
 
I really think she should tell the surgeon or her GI about the fever and the BMs. Poor kiddo - this is just unfair!! She went through with this huge surgery - she deserves some relief!
 
And the fainting. I know it's sometimes a hard call to know when to tell the doctor something's going on. I think it's best to keep the doctor/team informed. It helps them get a truer picture of what's going on. It sounds like you and she are used to the fainting but fainting is not nothing!
It's great the fever was only 1 time and you may be right about the cause but why not share it with the doctor?
Wishing her smooth sailing at school!
 
I will see if I can convince her to message him just at least so he can get used to her goings on. I suggested it the day she had a very large amount of stool the old fashioned way and she rolled her eyes. I think she doesn't update them because she is afraid of being called in, sent to E.R. etc. She has developed this don't ask don't tell philosophy with regard to her health.
 
crohnsinct said:
I will see if I can convince her to message him just at least so he can get used to her goings on. I suggested it the day she had a very large amount of stool the old fashioned way and she rolled her eyes. I think she doesn't update them because she is afraid of being called in, sent to E.R. etc. She has developed this don't ask don't tell philosophy with regard to her health.
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I understand her mentality wanting to avoid the ordeal even if it's needed. I hope you can convince her. It's good that you are coaching her to be her own advocate. Please keep us posted.
 
So O went public with her ostomy. Posted before and after pics on social media (she isn't private) and even put a pic showing her bag and it was a clear (clean) one so you see Sab and all! I guess she is handling it well then huh? We will see what happens when she returns to real life.
 
crohnsinct said:
So O went public with her ostomy. Posted before and after pics on social media (she isn't private) and even put a pic showing her bag and it was a clear (clean) one so you see Sab and all! I guess she is handling it well then huh? We will see what happens when she returns to real life.
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She's awesome just like her mother! Think of all the other young people in her position she is helping by doing this! I applaud her! Standing ovation for O!
 
My little ostomate has left the nest! She is on her way back to school!

When going through airport security they pulled her aside because of her bag. They had to pat her down and test her hands. It was fine, it just took her by surprise and she wasn’t prepared for it.

She had to urgently hop off the security line twice to use the restroom and is starting to get peeved with this nonsense. Hopefully the Rinvoq helps with this but I am going to once again suggest she mention it to docs. Her manometry test results were definitely not normal so I am thinking that has a lot to do with it and wondering if there is some sort of PT etc that she could do or maybe just rectal topicals.

I can’t believe it’s been 6 years and over 12 semesters and we have never dropped her off at the airport in remission. But she does it! Just proof Crohn’s and UC don’t always get to win!
 
They've never pulled O out because of her tube? M gets pulled out all the time, though it's usually for her J tube she says. Don't know why because they're both buttons. Also, if she needs to carry specific liquids on the plane (liquid meds, liquid ORS solution) she can do so with a note from the doctor. M takes all liquid meds onboard and sometimes milk if she needs to eat before having a med. They usually have her taste it. Oddly enough, they will allow milk but not water - I suppose because you can buy water after security.

I would definitely tell her GI that she has diarrhea and urgency.

SO incredibly proud of her for the way she has handled this surgery!! I hope she is able to really enjoy school now!!
 
Hey y'all! I am always so full of bad news, I thought I would post the good.

O has had great luck with her ostomy. No leaks🤞She has gained more weight and is now 122.3! But more importantly, has found 3 swimsuits. The top of her appliance shows in two of them and her g tube shows in all of them but she is fine with that. She has a dress for a wedding on order. The dress has a gather on the right with a little bow/sash type thing so we are figuring that will hide the pouch. The suits are with high wasted bikinis or the new one pice suits that have the circular cut out so the solid portion is on her stoma side.

She started her Rinvoq a little over a week ago and she thinks it is helping with the bleeding, urgency and mucus but that could also be the bowel rest. Insurance approved Rinvoq on peer to peer so she will transition out of the Abbvie program to plain old specialty pharmacy.

She told her old GI she is fully transferring her care to the new hospital.
 
crohnsinct said:
Hey y'all! I am always so full of bad news, I thought I would post the good.

O has had great luck with her ostomy. No leaks🤞She has gained more weight and is now 122.3! But more importantly, has found 3 swimsuits. The top of her appliance shows in two of them and her g tube shows in all of them but she is fine with that. She has a dress for a wedding on order. The dress has a gather on the right with a little bow/sash type thing so we are figuring that will hide the pouch. The suits are with high wasted bikinis or the new one pice suits that have the circular cut out so the solid portion is on her stoma side.

She started her Rinvoq a little over a week ago and she thinks it is helping with the bleeding, urgency and mucus but that could also be the bowel rest. Insurance approved Rinvoq on peer to peer so she will transition out of the Abbvie program to plain old specialty pharmacy.

She told her old GI she is fully transferring her care to the new hospital.
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Thanks for sharing the good news! It made me smile. O is awesome! I love how secure she is with herself. (Product of good parenting of course!) Glad she is gaining weight and doing well!
 
But more importantly, has found 3 swimsuits. The top of her appliance shows in two of them and her g tube shows in all of them but she is fine with that. She has a dress for a wedding on order. The dress has a gather on the right with a little bow/sash type thing so we are figuring that will hide the pouch. The suits are with high wasted bikinis or the new one pice suits that have the circular cut out so the solid portion is on her stoma side.
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Love the fashion updates! Ironically, M purchased a one-piece swim suit with a cut-out for the opposite reason - so she can reach her J tube without taking her swimsuit off! M says whoever designed these clearly had stomas in mind 😂.
So glad to hear O is doing well. REALLY glad to hear she is switching to the new GI. I don't remember if I mentioned this (we weren't told this till M had been on Rinvoq for months!) but Rinvoq is light sensitive so you can't put it in a pill box.
 
Oh wow @Maya142 ! No one told us that! And I can 1000% guarantee that O did NOT read the prescribing information pamphlet that likely came with it. Details! I am super surprised that the Rinvoq ambassador didn't tell us that. She LOVES her job and can talk Rinvoq all day.
 
If it makes you feel better, we spent well over 6 months putting Rinvoq in a pillbox (a colored one, though it was still translucent) and kept the pillbox in a drawer. We didn't know till M actually listened to one of the long boring calls from the Rinvoq ambassador. She says she won't ever make that mistake again of not being thorough but she think they should hand out a big notecard saying "LIGHT SENSITIVE, do not remove from bottle" with the Rinvoq bottle.
She was especially annoyed because she was on the phone for 30 minutes before the rep mentioned that!
 
Hey guys!

Nothing much to report except O is gaining weight nicely and doing rather well. She is still on the 45mg loading dose of Rinvoq. At 8 weeks (mid July'ish) she will get labs and go down to maintenance dose of 30mg.

Her bleeding has pretty much stopped and she is only having to go twice from her bottom, mostly mucus.

She has recently had issues with leaks. We THINK it is because her stoma shrunk a little more so she starting cutting the flange opening smaller because that is when it started. The leaks led to a breakdown of the skin around the stoma. So she went back up in size of the flange opening and is back to using her stoma powder and barrier ring to help fill in the crevice left by the broken down skin.

Another theory is that her output has been somewhat thick so it isn't falling into the bag as freely, so when she sleeps it gathers around the ring/flange and the output could be eroding the seal.

So she went back up in opening size and is trying to thin output and so far she has 2 days with the same bag and no leaks 🤞

She is just so anxious to be able to settle on a stoma size so she can order precut wafers which will make bag changes so much faster!

Sorry if TMI - just putting this here in case any other ostomates follow O's journey.
 
Glad she is gaining weight and sounds like things are settling. Wondering if it’s worth trying to sleep on her side so gravity helps output down into bag not on top? Also the underwear I was banging on about ages ago kind of holds up the bag so puts less pressure on the bag sticking to skin and the weight of the bag pulling on it if that makes sense. Powder and barriers help. I presume they have given her the spray to dissolve the glue when changing bag to avoid extra stress to the skin? My only other slightly gross tip is to let the skin breathe when changing bag by just not attaching the new bag straight away and just watching tv or something with a disposal bag to collect output. You need to live alone or with someone very understanding. And not answer the door 🤣
 
Hey y'all. Thanks for thinking of us @Jo-mom.

Things are pretty good. O continues to gain weight and is up to 125 now! She feels great and went for a 4.5 mile walk the other day. A task she never could have attempted pre ostomy.

She is still struggling with leaks and might have found an ostomy paste that helps. Once we have more data, I will post about it here. It is hard for her to figure things out without an ostomy nurse nearby but she is trying lots of different techniques, products etc.

Her most recent labs were all over the place. Anemic but normal CRP for the first time in a long time. Her vitamin D was very low and her WBC's returned as a critical value which prompted the lab to call the doc's office as soon as it resulted. O's GI was on vacation and covering doc said no need to do anything. When the report posted it listed the value as critical/life threatening and documented the covering doc's orders, which was interesting to say the least. I figure it is the Rinvoq doing too good a job at suppressing her immune system. The lab did a smear and lots of alarms going off. O's GI returned today and he requested she supplement again with 5,000 IU's of vitamin D and retest CBC now that she is on the maintenance dose of Rinvoq. So that test should be done in the next few days.

In the good column is that her cholesterol is nice and normal and that is one of the things they need to watch closely with Rinvoq as it does tend to raise lipids.

She is thinking about asking to postpone scopes until May, after her internship. Which must mean she doesn't mind the ostomy too much. She said she would rather keep her ostomy than have to recover from major surgery during her internship. I reminded her the surgery might to as major as she thinks (maybe just a reversal) to which she reminded me that all the disease might return once continuity is restored. We will see how her GI feels about this request. I can't imagine he issuing to want to pump another 6 months worth of this med into her if he doesn't even know if it is working.

She doesn't have anymore bleeding and very little output the old fashioned way. She did forget her med one night and the next day or two experienced quite a little flare so she thinks the med is doing something at least.

Meeting with GI in September to decide next steps so stay tuned.
 
Thanks for the update. The weight gain, 4 mile walk, “feeling great”,normal CRP, no more bleeding all sound really good.

Sorry she is dealing with leaks. That can’t be any fun. Could a video visit w an ostomy nurse be arranged? Would it be helpful? Obviously not optimal. Are there visiting nurses who deal w ostomies in her area or a nurse at the local gi office?

I hope her wbc return to normal on the maintenance dose. I read in the prescribing info that interruption of this medication is recommended for absolute neutrophil count less than 1000 or absolute lymphocyte count less than 500. ( See section 5.8 herehttps://www.rxabbvie.com/pdf/rinvoq_pi.pdf#page11) I’m curious to know what her values were —labs vary in terms of what they call their critical values.

Wishing her stability, good health and no leaks!!
 
WBC is 2.4
Abs Neutrophil 1,200
Abs lymphocytes 900

Lots of weird stuff on the morphology but just sitting tight and figuring that the lower dose will straighten it all out. She actually took an unintended three day break right after that test due to an insurance snafu and not being able to get the med on time so her numbers should bounce back nicely.

Oddly enough for such a bustling little town the closest ostomy nurse is 2 hours away and well you know college kids…life is too important to actually tend to such mundane issues as their health.
 
That's a low WBC! When you say maintenance dose, do you mean 30 mg? I'm guessing she has been on 45 mg of Rinvoq?

M was on 30 mg of Rinvoq + 15 mg of MTX. Her WBC was thoroughly normal - it was 5.2 once and that was the lowest it was. Hers tends to be around the upper limit of normal (8-10) and her CRP is also always high - although it did become normal on 30 mg of Rinvoq, but only once.

Her Abs Neutrophil count did drop from 9,200 (right before starting 30 mg Rinvoq) to 3,200 while on 30 mg of Rinvoq, but it did stay in the normal range. Abs Lymphocytes dropped to 2,200 from 4,300.

I hope her numbers will stabilize on the lower dose of Rinvoq, as M's did. So glad to hear she is feeling better!!
 
@Maya142 yes, maintenance dose is 30mg for UC and that is what she is on and yes, she was on 45 for 8 weeks.

UPDATE:

O got her repeat labs done and WBC solidly in the normal range so all is well.

Her H&H are improved also ut not buying that yet as I think she was very dehydrated and they are artificially raised but since those weren't the critical values, I will leave that alone for now.

She is having massive leak issues, called me crying (which we all know O doesn't do), threatening to shove her ileum back in her body herself. She is over the ostomy and in a very bad mood. It was 3 a.m. and she is away visiting a friend so I think she was tired and just super disappointed.

She is coming home on Sunday and staying for a week. She asked me to write to her old GI asking if he could gether in to a WOC nurse which gave me serious PTSD. The thought of letting that man anywhere near back in gives me hives but she does need to be seen. She has been trying to fix this thing herself for too long.
 
That sounds miserable. Are home health visits or telemedicine consults possible? I guess I'm just wondering if the new doc could order her something like that so you don't have to go back to the old one.
 
Yes and can’t the adult side of the hospital have an ostomy nurse …
I would call them before reaching out to old Gi
There have to be plenty of ostomy folks in your area.
 
Poor O! I definitely think she should see a wound care nurse. Even if she does see one at home, it makes sense to set something up with the one near school. I know it's a 2 hour drive, but she's at school much more than she's at home, right? That way she can try things out and if they don't work, she can always go back to the nurse to try something else, relatively easily. A 2 hour drive beats a long flight home!

Seeing someone from adult wound care at Stanford also makes sense to me. Does she have a PCP at Stanford? If she does, I bet they could refer her.

Also really pleased to hear her WBC went up when she decreased her Rinvoq! There was a recent study that found that Xeljanz does increase the risk of infections more than anti-TNFs, and so the FDA has mandated that all the JAK inhibitors have to have a warning stating that they may cause serious infections and you have to have tried an anti-TNF before you can try a JAK inhibitor.

Hope the 30 mg dose works well for her - fingers crossed!
 
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I’m so sorry to hear about the leaks and hope she can access an ostomy nurse to figure it out. How long is she leaving it between bag changes? I would look at every other day maybe if struggling. I did have a leak in the early days - well a couple- the banana peel stickers sorted it for me but I know she’s tried already so not sure what else to suggest. There was an ostomy product I was looking into if I hadn’t got reversed - kind of used a belt round the waist instead of sticking on - mainly because my skin hated the bag - don’t know if worth asking the nurse about. She does need expert advice. The problem with leaks (for me) was once it’s happened you never know when it might happen again so you go through your day and maybe in a client facing role never knowing when you might glance down and there is liquid poo everywhere. So I really feel for her. My big leak was at night and I couldn’t sleep for ages as I was paranoid it would happen again/ solved that by putting a thick towel on the mattress to sleep on so if it did could just throw in the wash.
I think try and get her in with an ostomy nurse rather than hold out for reversal - when I got reversed the consultant said I should get a few years before any more problems and the Crohn’s was back and rampaging within six months. If she can find a way to cope with the stoma then more chance of new research/ drugs etc. Is part of the problem that it’s too liquid? Just wondering about eating oats or similar to thicken it (sorry if TMI).
Wow. I feel like screaming on her behalf. At least the weight gain is a positive and hopeful sign xx
 
Let's see if I can address each thing or if my age is getting the better of me and I forget a bunch;)

- Ostomy nurse by school is a two hour drive BUT crosses time zone also so she has to leave 3 hours prior to the appointment AND she is so busy between class and her clinical fieldwork it really is difficult for her to get to appointments.
- her surgeon has a whole staff of WOC nurses and they said they will do a virtual visit but it is very hard because they have to really see the stoma and skin around it to really figure out where the problem is.

-she typically changes her bag every 3rd day because our insurance only covers 10 bags a month so that's 2 a week with 2 for emergency changes. P.S. we have paid out of pocket for many bags because of these leak problems and the bags cost about $10each!

- changing more frequently won't fix the problem necessarily because the leaks are happening shortly after the bag change. One was 6-7 hours after and the other only 3 hours later. There is definitely something going on with her skin or possibly her stoma shrunk ands needs to cut the flange opening smaller.

- leaks are always in the same spot so my guess is she has damaged skin there that is keeping the bag from properly adhering to her skin.

- she has tried stoma paste and rings that are supposed to fill in any divers etc in the skin. The paste seemed to work well until it didn't.

I would say maybe she isn't cleaning the glue off well enough and that is keeping the new bags from sticking well but it is always he same spot. It has to be something about that spot.

She did end up reaching out to the pediatric GI and he said their ostomy nurse left the hospital and he didn't know where to send her. This is EXACTLY why I wanted her to have the surgery at an experienced adult hospital. I am so so glad left. He and his nurse did some research and calling around and the surgery NP thinks she can help her, so she has an appointment with her on Wednesday. Meanwhile, No leaks since Friday a.m. so fingers crossed. But like @Delta_hippo said, even when you are not getting leaks, you are waiting for the next time and it is super stressful. She has even started to turn down opportunities to go because "what if". So we really have to get this thing fixed.

@Delta_hippo Your reference to the reversal was very interesting. Her pediatric GI told her to be prepared and that even if she is healed on Rinvoq and with the temporary diversion that when they reconnect the Rinvoq might not be able to hold her. Is this what happened to you? That the temporary diversion fixed things but then after reconnect and the return of the fecal stream things went south? I wonder if waiting until there are other drugs approved might be a better time to attempt the reconnect. Or maybe it will take a while for the reconnect to cause trouble and by that time another drug will be approved?

@Maya142 yes! The infection risk is real! They really hammered that home with her when they put her on Tofa and the prescribing literature and FDA approval all states only use Tofa after failure of the other biologics. Rinvoq's warnings are even scarier. Interestingly, after the missed three days and the drop in dose her psoriasis started coming back, so it seems maybe she needs the 45 mg dose for her psoriasis and that makes me wonder about her Crohns.
 
So when removing a bag they should have given her a spray that melts all the glue but having a bath also helps to get the area totally clean and glue free. Wondering if an ostomy belt would help (see attached) I am thinking like you is there something about that little bit of skin
https://badgut.org/information-centre/ostomies/ostomy-belts/Personally I would drive a six hour round trip to try and sort leaks but appreciate it is another day out of her schedule. She really wants to see someone who is very experienced with stomas.
My ileostomy was an emergency fix after I suddenly got very ill and one of the consultants correctly guessed a perforation - surgeon had hoped to do a resection but when I woke up with a bag he said I had been so unwell he feared the resection wouldn’t hold and would come apart inside which he said is a very bad situation. Firstly they had discovered sepsis when they opened me up and second protein level in my blood was too low for healing. So it was a temp fix to allow me to get well enough for the resection to be completed. But, the surgeon who did the reversal in November said no sign of any Crohn’s and by the first stool/ blood monitoring the next Easter things were not looking good and a subsequent colonoscopy (May I think so six months later) they saw patches of Crohn’s in 4 different places at which point they switched from hoping a heavy course of prednisone would settle things down to azathioprine and hence began the merry go round of immunosuppressants. So the depressing point being, healthy pink gut can quickly go wrong once sewn back together. Although I was on no drugs at the time as I was in denial about having Crohn’s having been perfectly healthy until the year before- since discovered there is such a thing as silent Crohn’s and I did have warning signs but coincided with pregnancy so all dismissed as hormonal weirdness.
Reversal is a big call. There is something about knowing you can that helps cope with the stoma I think although mine was better behaved than poor O’s.
 
Yeah, she uses the spray and wipes. Then she washes that whole area around the stoma with a wet paper towel and soap. Rinses it with a few wet paper towels, then dabs dry the area. Lets the whole area dry open for another 5 or so minutes and then applies the bag. She is coming home tonight so the next bag change, I will get a good look at Sabrina and will be in a better position to comment but the last pic she sent me still had that broken down skin at the exact place she is getting leaks. And when I say leaks they aren't little bits of stool leaking out. They are more like blow outs. Oh yeah, you had asked…her output is pretty thick. So I am also guessing that maybe it isn't dropping down into the bag nicely but rather sitting at the top thereby giving it an opportunity to eat away at the seal?

I was going to ask if you had been on meds. I guess that is a plus for O as she is on meds so hopefully any reversal would stand a better chance but we are talking O here so not getting our hopes up. If Tofa couldn't hold her. Rinvoq has an uphill battle but maybe because it is more selective.

Gee! I am so sorry you had to go through all that and so soon after having a baby. It must have been really rough.
 
We were told (by M's GI and 3 rheumatologists/researchers) that Rinvoq is actually safer (because it's more selective) and works better than Tofacitinib. So I'm hoping it will work for O.
Do you know if they use 45 mg of Rinvoq indefinitely for UC? We were told it was only the loading dose and if it dropped her WBC so low, it's probably not a good long-term option for her, is it? I know Skyrizi has been approved for Crohn's at a much higher dose than for psoriasis - perhaps that's an option after the reversal? I know IL-23 inhibitors work like magic for psoriasis but I don't know much about how well the work for Crohn's, though they're certainly less immunosuppressive than Rinvoq and so safer.
A 6 hour round trip is LONG in grad school but perhaps she'd only have to do it once or twice to find the right products? Then it's worth it - better than not going out because she is afraid her stoma will leak.
 
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Her new GI said the "theory" is that RInvoq is safer because it is more selective but that it is too new to actually say it is and that time will tell.

45 mg is the UC loading dose. After 8 weeks you drop down to 30mg maintenance. It worked wonders for her psoriasis but then it all came back. I am not sure if it came back after the three day break and then the 30mg maintenance dosing or before. My guess is after the break and then maintenance.

She has forgotten a dose twice and she says that the next day or two she has increased discharge from her bottom and bleeding so my guess is that means it is working. Although I would hope one night wouldn't make symptoms return but maybe she just needs more time on the drug for it to heal her more. She was in such bad shape that I am sure it is going to need more than 2 months to heal her to the point that a missed dose won't do much.

We talked about the IL23's and er GI said he doesn't hold out much hope for it to heal her colon but we were specifically talking about Stelara and I believe that is an IL 23 and IL 12 so maybe a more selective IL inhibitor will be better? I also read a paper that said that for some reason using Stelara after anti tif failure actually made Stelara work better than if you tried it first. Something about the anti tif's priming your system for Stelara. It was interesting and I wonder if RInvoq doesn't work if her GI would consider Stelara then. I know before Rinvoq was approved and we just had Stelara, he said no to Stelara and wanted her to have the colectomy. But now with this new info who knows. I feel like we have come so far and tried so many things that at this point we mine as well try them all.

This is all getting way ahead though. First step is get her to scopes in December and see what they show and take it from there.
 
If I’m remembering correctly, for skin disease and arthritis, the IL-23 inhibitors seem to work better than Stelara. But they do take a long time to work - M tried one and after 6 weeks it was doing nothing and she was in so much pain and had such swollen joints that she switched to a different drug - she did not think she could manage like that for 6 months till it kicked in.
But for Crohn’s, I know Skyrizi has quite an impressive loading dose - three 600 mg infusions and then 360 mg injections for maintenance every 8 weeks. In contrast, the arthritis dosing is two 150 mg shots 4 weeks apart for the loading dose and then 150 mg every 12 weeks. So perhaps it would work faster for Crohn’s.
 
Mystery solved!

O saw an ostomy nurse at her old pediatric hospital today and one look and the nurse knew exactly what the problem is. It seems her stoma has shrunk quite a bit and actually so much so that it is almost flush with her skin. In these cases you need a convex flange and a belt. The belt tightens the flange against the skin and there is a little rim type thing that pushes down on the skin around the stoma and this helps the stoma protrude so the stool can actually drop down into the bag and not sit up top eating away at the seal.

Her skin around the stoma was broken down quite a bit but the nurse said not as bad as she would expect given how flat her stoma is. Also, she said she is shocked that O is getting the wear time she is given the shape of her stoma. We are hoping the convex flange will get the stool dropping down into the bag and this will allow her skin to heal.

So she gave her a couple of convex flanges and belt to try. O doesn't like the belt but she dislikes leaks a lot more!

The real bummer is she just got her new order of the old flat flanges so she has to wait a month to get a supply of the convex flanges. She is going to call all the companies and request samples to help her get through the next month.

O looks great. Like a totally different person. However, she did go to the bathroom a lot today and passed stool "the old fashioned way" and she said there was quite a bit of blood. She says she doesn't think she missed a dose. I am wondering if the bits of stool slipping past the stoma are aggravated the colon and making it bleed which doesn't bode well for reconnection but we still have 4 months and anything can happen.
 
  • stoma retraction – where the stoma sinks below the level of the skin after the initial swelling goes down, which can lead to leakages because the colostomy bag does not form a good seal; different types of pouches and appliances can help, although further surgery may sometimes be needed
 
Glad she was able to see an ostomy nurse who could see what the problem was and knew what to do. Is there any way she could exchange her recent shipment of old flanges for the correct ones?
 
No. Unfortunately once the equipment leaves their warehouse they won’t take anything back. So annoying because with all the leaks, when we were away at my niece’s wedding she ran out of bags and flanges and I had to find a medical supply company that carried them and was open to the public. They only carried one kind and of course not a kind she used and they were ridiculously expensive. I am going to have to try to find someone who Carrie’s this kind and buy her a box of 10 to have as back up. Idk why the insurance company only pays for 10 a month. Like don’t they know people have leaks?! That is only a safety net of two a month and O went through that in a day!
 
CIC, this is great news!! I really hope it solves the leaking problem. So glad the nurse was able to help so quickly.
Is there something like the Oley foundation, which has a feeding tube equipment exchange, for stoma equipment? People with new feeding tube supplies they no longer need (formula, bags, extensions etc) send them to people who do need extras.

In terms of taking a daily medication, how about an old fashioned pillbox? She's only on one med, right, so you could get a small one that even fits in bag or backpack. There are also apps where you can check off when you've taken a dose. Missing a dose of Rinvoq also caused symptoms for M. I hope her colon with heal with time - like you said, she has 4 months!

In terms of buying extras, I've had luck with Health Products For You - it's a website. We have to buy M's J tubes because for reasons I don't understand, insurance will only pay for her G tubes. It'll probably be expensive but hopefully you can find something.
 
Maya142 said:
Is there something like the Oley foundation, which has a feeding tube equipment exchange, for stoma equipment? People with new feeding tube supplies they no longer need (formula, bags, extensions etc) send them to people who do need extras.
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I haven't found anything but will ask around on the ostomy boards. Maybe that is a new project for me…to start a supply closet etc.

Interesting you should mention Oley because I have a garage full of Peptamen and listed it on Oley and called our pediatric hospital and no takers. It makes me sad every time I walk into my garage ands it sitting there. It is going to expire soon and it kills me because I just know that someone out there needs it.

As for remembering meds we tried the pill box but you actually have to remember to look at it for it to work 😂

She has gotten sooooo much better about her meds. She rarely misses a dose anymore except for like I said when we hot insurance snafus like we are about to hit now.

We tried alarms and those don't work for her because she just snoozes them or says, "oh, yeah, I have to take my meds" turns then off and then forgets.

Her newest method is to put it in reminders on her phone. This works because the notification pops up on her phone and won't go away until she completes it and she HATES notifications on her Home Screen. This way if she isn't home the alarm doesn't keep going off and she see's it while checking her phone…ya know for important things like tic Tok, instagram etc…before bed.
 
We had the same experience with the phone alarm being ignored. The notifications idea is a really good one I’m going to suggest to my son. Thanks!
 
OK. I don't expect anyone to be able to help with this but thought I would document it as part of O's journey in case those who follow ever have this happen.

I researched the whole poopng the way nature intended thing and every single site I looked at said there was no way that you could actually pass stool after an ileostomy even a temporary loop ileostomy. They all say you could get a build up of mucus and that sometimes it is brown and can look like stool but it is mucus. So, I assume that is what is going on.

However, today again, we were out and about and the poor thing was urgently needing a bathroom. We were at a parkland not a restroom in site. It was one of those panic and run moments that were such a part of our old lives. She also had a few of these on Wednesday. I had a friend come pick her p and drive her to the nearest grocery store.

Discussing it at home I explain to her what I read and she said, "No Way! This is actual poop….like remember my flat ribbons of poop? that's what this is!"

No clue what to make of this. I suggested she write to the surgeon but she says it has only been two days and that we should wait to see if it happens a third time. I had earlier suggested that she write to the surgeon and just let him know about the flat stoma thing. Not that I am concerned about it but just in case down the road it causes problems, I don't anthem to be surprised. But now with this development, I just don't know what to think.
 
Thanks @my little penguin ! I read that and it helps and reinforces what I thought was happening. A lot of it references "mucus" poops and we are fine with that and the surgeon told us to expect that but she swears this is an actual BM and some posts in that thread say it can happen. Ironically, when she woke up today her bag was so full of gas it looked like it might pop. So I am wondering if the pressure from the gas might have forced the stool through the other hole. Sounds like we have a fun experiment ahead of us!
 
She can vent her G tube to get rid of the gas - that might help somewhat. There are lots of videos on how to do it. M has a drainage bag and occasionally it will truly fill up with gas when she attaches it to her G tube and presses on her stomach. You can also use a large syringe: https://www.feedingtubeawareness.org/gas-bloat/
 
I found this on Medscape while trying to understand that thread MLP posted:
A loop stoma is created by maturing a segment of bowel over a rod or tube without completely dividing the bowel. Loop stomas provide excellent decompression and have the advantage of simple closure without the need for a separate laparotomy in most cases. However, loop stomas are not completely diverting, because proximal contents can spill over into the distal limb. Therefore, they should be used with caution in patients in whom stool in the distal bowel may be problematic.
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It sounds like this does happen but I do think she needs to tell her surgeon.
 
We thought about venting the ostomy bag if she wakes in the middle of the night but never thought about doing it through her g tube before the gas even gets to the bowel. I am going to tell her to try that before going to bed at night and then maybe venting the ostomy bag if she wakes in the middle of the night.

You two are champion gogglers! How the heck did you find these references. I swear I looked everywhere and found nothing about stool slipping through with a loop ileostomy although like I said it was always my theory that this happened because it is logical if you think about the way the surgery is done and the anatomy.

So she has also had a few days with more blood so I am wondering if the increase in blood is because stool even a small amount is going through her colon?

I am also wondering if the shrinking and flat stoma has anything to do with why she is seeing the increase in stool per rectum.

Things that make you say hmm.
 
LOL here is the full article but really that paragraph is the most relevant: https://emedicine.medscape.com/article/939455-treatment#d10

The flat ribbon poops also concern me because that means that her rectum is still inflamed. And of course, the blood supports that. I wonder if she should tell her GI as well as her surgeon?

The other thing I found while googling is that there are products you can use without a belt even if your stoma is flush with the skin. I know O wasn't thrilled about the belt, so I wonder if it's possible to get samples of those: https://www.hollister.com/-/media/f...using-convexity-care-tips_na_923066-1217.ashx

I would definitely vent the G-tube before bed. Could she vent her ostomy bag before bed too? I didn't even know you could vent from there! Perhaps if she does both places, there will be less gas in her gut.
 
Delta_hippo said:
So when removing a bag they should have given her a spray that melts all the glue but having a bath also helps to get the area totally clean and glue free. Wondering if an ostomy belt would help (see attached) I am thinking like you is there something about that little bit of skin
https://badgut.org/information-centre/ostomies/ostomy-belts/Personally I would drive a six hour round trip to try and sort leaks but appreciate it is another day out of her schedule. She really wants to see someone who is very experienced with stomas.
My ileostomy was an emergency fix after I suddenly got very ill and one of the consultants correctly guessed a perforation - surgeon had hoped to do a resection but when I woke up with a bag he said I had been so unwell he feared the resection wouldn’t hold and would come apart inside which he said is a very bad situation. Firstly they had discovered sepsis when they opened me up and second protein level in my blood was too low for healing. So it was a temp fix to allow me to get well enough for the resection to be completed. But, the surgeon who did the reversal in November said no sign of any Crohn’s and by the first stool/ blood monitoring the next Easter things were not looking good and a subsequent colonoscopy (May I think so six months later) they saw patches of Crohn’s in 4 different places at which point they switched from hoping a heavy course of prednisone would settle things down to azathioprine and hence began the merry go round of immunosuppressants. So the depressing point being, healthy pink gut can quickly go wrong once sewn back together. Although I was on no drugs at the time as I was in denial about having Crohn’s having been perfectly healthy until the year before- since discovered there is such a thing as silent Crohn’s and I did have warning signs but coincided with pregnancy so all dismissed as hormonal weirdness.
Reversal is a big call. There is something about knowing you can that helps cope with the stoma I think although mine was better behaved than poor O’s.
Click to expand...

What is silent Crohn's?
 
Crohn's that doesn't cause any symptoms so you don't know you have it. There are usually symptoms but many Crohn's symptoms can be explained away and so you don't seek a GI until it is a full blown flare. If you are already diagnosed and the GI is checking your labs, fecal cal etc, silent Crohn's usually isn't an issue.
 
Hi guys! Sorry we have been away for so long. Dealing with a lot of non Crohn's issues but also enjoying some time with Crohn's not dominating every day of our life. Breaks are good!

O continues to do really well. She has now gained 14 pounds from her pre surgery weight and 22 from her all time low.

She had another bout of leaks which were really discouraging but we got those sorted out. Seems it was a matter of cutting the flange a little too big. Sabrina is like the "mood" stoma. She gets big and shrinks constantly. Poor O hasn't been able to take advantage of the handy pre cut flanges yet.

She was supposed to have her scopes in December to assess if the diversion and or Rinvoq have healed her colon enough to attempt a reversal. However, she starts her internship in January and she is concerned that once reconnected the Crohn's will return and the cycle of admits will interfere with her completing her program on time. She asked her GI to postpone the scopes until May and he agreed. One would think that this means she doesn't mind the bag so much but she is very much looking forward to the prospect of a reversal. However, she is not yet sold on the prospect of a j-pouch so if scope results aren't great then we will have quite lengthy discussions with surgeon and GI.

OH! AND! She hasn't used her g tube since surgery so she asked the GI if she can have it taken out. He was a tad concerned about it but in the end approved it saying that if her nutritional status took a dive due to disease activity they wouldn't wait as long this time before going in and taking out the colon. He made sure she understood she is on a short leash and she was fine with it. The only other hitch is pre surgery they want her to up her protein as it provides better outcomes so she will have to drink 3-4 shakes a day for 2 weeks prior to surgery now that she won't have her g tube…again, she was fine with it.

Rinvoq is really screwing with her WBC's and she is still getting very low and critically low values but only had one really bad viral thing. Cholesterol is elevated again. We are watching both and will probably decide in December if we are going to move on any of these issues.

Also still a bit anemic which is weird because no visible blood per rectum in a while. We are also watching that and likely moving on that in December.
 
Does she know that the G tube scar will kind of look like a belly button? M wasn't pleased about that. It has to heal from the inside out, so typically they just remove it and if it hasn't been in too long, it closes by itself. But if it doesn't close and is leaking a lot, they sometimes have to surgically close it. M was told she could have a scar revision surgery by a plastic surgeon later, if she wanted the scar(s) (since she has two tubes) to not be so prominent.
Rinvoq is really screwing with her WBC's and she is still getting very low and critically low values but only had one really bad viral thing. Cholesterol is elevated again. We are watching both and will probably decide in December if we are going to move on any of these issues.
Click to expand...
Remind me, is she on 45 mg now or 30 mg? M didn't have any WBC issues or cholesterol issues on 30 mg. But I remember O having WBC issues on MTX too, that M never had.

So glad she is feeling better and hope scopes look good next May!!
 
Ummm no, I am pretty sure she has no clue what the scar will look like. I wonder if that would make her change her mind?

She is on 30mg. You are right. She is very sensitive to drugs and even had low WBC's on Methotrexate and then again on just Remicade. But at least with Remicade they occasionally came up into range. Not so sure with Rinvoq.
 
Maybe have her google g tube scars…She can have a scar revision but that’s another surgery and probably not one insurance covers (it’s not something we’ve investigated since M needs her tubes, so I’m not sure).

Remicade is less immunosuppressive than Rinvoq (at least, that’s what we were told), so that does make sense.
 
So glad to hear your news and the weight gain and chance for a break from Crohn’s stress. If I were O I would be in no rush to reconnect straight away because so much of the Crohn’s research seemed to go on hold with the emergence of the more attention seeking covid, if she reconnects now and struggles there isn’t much on the table to try but give it time and more chance of more options.
When I had my ileostomy the surgeon initially said 3 months and then 3 months later said “we tell patients 3 months when they wake up from unplanned surgery and find themselves with a stoma to stop them freaking out but we much prefer to wait the full 6 months so they are better recovered”. I asked if there was any risk of the disconnected bit of bowel losing tone or becoming weak through disuse or whatever and he said very relaxed about leaving things a couple of years before reconnecting but potentially an issue longer term. Don’t know how patient specific that advice is and O a lot younger and fitter than me.
The protein thing is important though as low protein levels = more chance of bowel resection coming apart rather than healing together which is a get very poorly very quickly emergency. So again more unsolicited advice from across the pond, it might be worth her monitoring and upping protein intake generally as well as shakes nearer the time (I assume she’s not still doing the vegan diet?)
But so happy to hear this. I’ve been hoping she’s been able to just get on with life a bit. Hope the leaks weren’t too awful and have settled now xx
 
Hi guys! Just popping on to say g tube is out and healed up. Definitely looks like a second belly button thanks for the warning @Maya142 it doesn’t seem to bother her in the least.

She finished the didactic part of her program and is coming home for 6 months to do her internship.

I flew out to her to pack up apartment and we are driving home across the country!!! This is something we never could have thought about doing prior to her ostomy. We are actually laughing at the thought of it. We are taking our time and sightseeing andexploring cities along the way…also something we could never have done pre ostomy.

Still dealing with leaks and such but small price to pay for having freedom from Crohn’s and hospitals!
 
That’s wonderful!!! Is she warming up to the idea of an ostomy because of the freedom she has or is she still really keen for the reversal surgery?
Glad the tube healed up without any issues! I’m a bit worried about M’s healing (whenever we take them out) because her G tube has been in for 7 years and the J for 6. She will have 3 belly buttons when she gets them out lol.
 
Yeah @Maya142 endnote to scare you but they told us the longer they are in the more likely they won't close on their own and you will have to go in ad have it surgically closed. They prepared O for that possibility but hers healed up super fast.

I told O about revision surgery and she has a faster and cheaper option….Tattoo to camouflage it. UGH!
 
Update and lesson for those interested in ostomies:

O is still doing good. Dealing with leaks but oh well. The blow outs are less so getting better there.

Tuesday, she woke with lower left abdominal pain and having to go "the old fashioned way". This continued throughout the day and she went 20+ times. She also started bleeding. My chart message to GI and surgeon.

Met with NP yesterday who was thinking diversion colitis. This is a condition where because stool is not carrying the regular bacteria etc through the colon rectum, theses diverted areas are not being fed. This leads to inflammation and diversion colitis. Apparently 70-100% of people with diversions get it but only a small percentage experience symptoms. The treatment is to reconnect but if you can't then they try short chain fatty acid enemas or mesalamine enemas etc. But people usually do not pass the volume of stool that O was passing.

She improved with no intervention. Only going about 3 times a day which is still weird for a diverted person but a huge improvement.

Met with surgeon this a.m. and while initially he wanted imaging he is suggesting we wait and see. He said this could be a form of reflux. The stoma has two holes. One connects to ileum and the other to the colon. He said sometimes stool works its way into the second hole. Perhaps she had a bug which would explain the frequency, urgency and volume and it just worked its way into that second hole. If it keeps happening, we can stitch up the second hole, or do enemas or have a radiologist clean out the area with contrast inserted through the stoma. But for now we will wait and see what happens.

Sounds like a good plan to me and definitely a good plan to her because she wasn't willing to try a reconnect at this time.

I am only left wondering if the fact that she started bleeding as soon as stool was introduced into the colon/rectum is a poor indicator for reconnection success. But that would be getting way ahead of ourselves. Just gonna sit and wait until May.
 
Hey y'all. Sorry I haven't been around. We have been off enjoying our IBD worry free life. SEE? It can happen.

Update:

O's has gained about 10 pounds and her psoriasis has cleared up on Rinvoq. She can go out in public and people don't stare!

She feels great.

She is still dealing with leak issues and insurance only covers 10 bags a month which is totally ridiculous so we have had quite a few bag emergencies and that is almost as stressful as the bathroom emergencies….No exaggeration there was one day over Thanksgiving break when every medical supply place was closed and her bag delivery was delayed where she was laying in bed catching her poop in a paper towel…TMI sorry but it was funny. Luckily we found a kind soul on FB Marketplace who lived an hour away willing to sell us some bags. That was a fun FB post.

Oh and then there was the leak on a flight and having to change her bag in the airplane bathroom…..that was especially hilarious.

She just did blood labs and calpro from her bag so no news there.

She is still occasionally passing stool from her rectum and sadly there is almost always blood.

Colonoscopy and ileoscopy are 4/24 and the fun part about an ostomy is no prep required! Just clears the whole day prior and they do a couple of enemas when you get there.

If the colon and TI are healed then she will try a reconnect and hope Rinvoq can hold her.

If TI is healed but colon isn't then she has to decide if she wants to do a total procto colectomy with barbie bum and permanent ileostomy or attempt a j-pouch. The J-pouch decision is a whole other kettle of fish.

If both are not healed then total procto colectomy with barbie bum and permanent ileostomy.

If colon is healed but not TI then we will keep the diversion and add Stelara to heal the small bowel and decide on reconnect down the road.

Surgery is scheduled for 5/12. She meets with her surgeon 5/1 to decide which surgery they are doing.

She met with a covering doc today who happens to be the center's j-pouch medical specialist so she asked a lot of questions. He was pretty encouraging about a pouch with Crohn's. The most important thing being that j-pouches are very difficult surgeries and you have to be at a high volume center. He said that 10% of the centers do 80% of the surgeries and that the other 90% of the centers only do 5 a year. The average number of j pouch surgeries needed before a surgeon is proficient is 23. She is at a leading center so this is good. And if she has pouch complications this guy is really an expert.

He was also surprised she is on Rinvoq and doing o.k. He said she is the first Crohn's patient he has seen last more than a month on it. He does admit that the diversion probably has a lot more to do with how well she is doing but he is still encouraged and will be following her case.

She feels a little scared to reconnect and is not sure what she hopes they find a scopes. She especially is not looking forward to having to find bathrooms again LOL.
 
I’m glad she is doing so well. Ten bags a month is mean though. I used to change mine every other day. If she has another emergency a dog poop bag is better than a paper towel 😊
Just wondering if things are going well if she can decide to wait a little longer if scopes aren’t clear cut?
Wishing her all the best
 
LOL! Why didn't we think of that?! We have dogs also!

I think if her colon hasn't healed after a year on Rinvoq, they won't let her wait longer. At this point, she would have been inflamed for 6 years straight and I think the fact that she hasn't had a cancerous lesion is a miracle.

If she can't make up her mind j-pouch vs barbie bum, they most definitely would let her wait to decide that. They would change her loop ileostomy to a terminal, do the proctcolectomy and leave enough of the rectum to attach to later. They actually mentioned this as an option if she was too afraid of the j-pouch causing fertility issues. They said she could wait until after she has children and then get the j-pouch. However, she can't get pregnant on Rinvoq so IDK if that is even a viable option, unless another new safer for pregnancy drug comes out.
 
Would it be possible for her to go back on Entyvio with an anti-TNF for pregnancy? Perhaps it would work with the ileostomy? I know Cimzia is the best one for pregnant patients because it doesn't cross into the placenta.

I know there are rheumatologists who specialize in pregnancy in patients with rheumatic (inflammatory and autoimmune) diseases. I wonder if there are GIs who do the same??
 
There is and she is right by us!

I think if they take the colon then we don't have to worry about such a heavy hitter as Rinvoq and we just have to try to control her small bowel disease so maybe she can move to Stelara. We haven't had to consider that one yet so not sure about pregnancy with it.

I just can't wait for this all to be over. The year long break from hospital visits and IBD drama has been nice but we have been in a holding pattern and the next step has been hanging over our heads. I honestly do't know how she does it.
 
It’s a tough one because also just so nice for her to have had a little respite from the chaos and be able to do some things without the relentless urgency. The only thing I know about pregnancy is methotrexate is a definite no. It’s very hard to be having to figure this stuff out so young. Sending love as always
 
Never posted here before, but I’ve been following your story for a while now. I just wanted to say that I admire how O (and you) are coping with everything. I find it inspiring to read how you all keep going. I’m in a somewhat similar situation and reading how you and O are dealing with everything, helps me keep going. So I wanted to thank you for sharing your journey.

The opinions of your medical specialist are also interesting. With crohns (including crohns limited to the colon) a pouch is a no go here. Unfortunately, the experience with Rinvoq in crohns patients sounds less promising. If I understand correctly they believe that Stelara is not very effective for colonic crohns. Do you know what they think of Skyrizi?

Anyway good luck with the scopes and the difficult decisions O has to make (and dealing with the limited number of bags. I use a one piece system and change daily so with leaks that sounds almost inhuman).
 
@crohntje How incredibly sweet of you! Nice to meet another ostomate. How long have you had yours? Is it a loop or end? The decision to reconnect is involved, I feel for you.

Yes, they do say that Skyrizi has a little more oomph than Stelara but they still are not very optimistic for it for O's disease. Partially because her disease is colonic but way more so because of how severe and refractory her disease is. She has been on way more successful drugs and double biologics at off label dosing and still her disease doesn't respond. I will say though that if she has to have a total proctocolectomy, the plan is to move her to skyrizi to control her small bowel disease.

Yes, the high volume centers here in the US (the ones that do thousands of j-pouches)redoing j-pouch surgeries even with Crohn's patients but the patient has to be highly motivated, their small bowel disease has to be well controlled, anal sphincter function has to be good and, and, and. So, it's complicated but the docs all feel if they can give someone the shot at continuity they should at least try. Worse case, they revert back to an ostomy if it doesn't work but I will tell you they attempt quite a few pouch re do's before reverting back.

I can't imagine changing the bag every day. O's skin would revolt. Not to mention I think she would as she likes to wake up at the last possible minute and wouldn't likely have chance to change the bag 😂
 
O's blood labs posted and they are the best they have been in the past 6 years. LDL cholesterol a bit elevated but not too bad so not likely moving to a statin. Plus what would be the use when scopes are in a couple of weeks and that could be the end of Rinvoq anyway.

Still waiting for calpro,but fully expect that to be somewhat normal since her small bowel isn't the drama queen that her colon is.

Tick tock.
 
How nice to read that O’s blood labs look good! Hope that the scopes also show improvement.

I have my loop (ileo)ostomy since late july. Long story short (this is your topic…) I have severe Crohns disease of my colon and rectum. Initially cyclosporine managed to save my colon and remicade and azathioprine did the trick to get me into remission. Started flaring again three years ago and tried about everything since. Prednison, higher doses of remicade, stelara, entyvio: all not effective. So I needed emergency surgery. Unfortunately recent scopes showed that despite the diversion and hyrimoz/thioripine inflammation became even worse. Advice now is proctocolectomy. My GI (and the rest of the team) don’t believe that skyrizi or rinvoq will be able to save my colon and reconnect so they think it is risky to wait until these medicines become available here. Right now I‘m on the waitinglist for surgery. I may (try to) wait for the new medication and hope it ‘does something’ if I really want to. However reading about these drugs and looking at my colon (and my current symptoms), I fear it won’t be a great success.

I can imagine that patients with Crohn’s need to be highly motivated in order to get a J-pouch. It sounds like a potentially rough path and a very difficult decision to make. I know that in very rare cases they do make an exception here. However they generally don’t because of the risk of pouch failure and the mentioned need of several surgery’s.

Yes, I change my bag daily. If needed I even change twice (that is also the advice of the ostomy nurse and no problem with insurance). So far my skin looks fine but perhaps I might try a two piece system in the future. It does sound nice to change less frequent.
 
Oh my gosh! You sound SO similar to O! And you had your surgery around the same time! I really wish you could try Rinvoq. It has worked wonders for O’s colon. The last doc she saw said his suspicion is the diversion is really what is helping but judging from your story maybe it is actually the Rinvoq!

O has been wanting to try a one piece because of the lower profile. Do they not sell bags with the bottom opening so you could empty them, your way? This way you could keep it on for 2-3 days and then change the whole thing? Although it is nice to have a fresh clean bag isn’t it? O loves bag change day😉.

What symptoms are you experiencing with the diversion. Since supposedly nothing is going through the colon how do you know? Pain? Rectal discharge/bleeding? Sorry to ask and you can PM me if you don’t want to share on here but we haven’t met anyone like O so I am curious. She actually was woken last night to use the bathroom the old fashioned way and urgently. Luckily, No blood this time.
 
You may ask, no problem. Shortly after the diversion I was symptom free. Since february my main symptoms are pain and urgency with (quite a lot of) rectal bleeding. I just spoke with the surgeon again and she said in case symptoms worsen I need to contact the hospital. So unfortunately I don’t think I can wait untill the fall for Rinvoq hoping that might work. What that doctor of O said about Crohn’s patients not lasting longer then a month does not sound very encouriging either… Obviously, I’m very curious what O’s scopes will show. I really hope her colon looks ‘better’.

I use a drainable bag. To prevent irritation from minor leaks, right now it is better to change regulary. Perhaps a silly question but with a two piece system here we are allowed to use 2 bags a day. If I understand correctly the bags are clicked to the adhesive (I’m not English, so correct me when this is called differently). So the benefit for me would be keeping the adhesive on longer while being able to use different bags.

I follow your story partly because of the similarities. I’m a bit older though. Diagnosed at 15. Had a major flare in my first year of college. Did really well for 15 years on remicade and azathioprine until three years ago…
 
I am sorry my old lady brain can’t remember what the thing was about not lasting a month.

your English is perfect. Yes, with a two piece system you put the appliance (ring with adhesive backing) on the skin and then click the bag onto that. It us like a Tupperware seal. This does giveyou the opportunity to change out just the bags if you have a good supply of them. I just gets 10 per month so that isn’t an option. Plus her leaks are always from the seal so when she changes she always has to change the whole system. Some people take the bag off, rinse it out and put it back on but O “doesn’t have time” for that so it is usually just empty and roll it back up and get on with her busy life.
 
I believe you wrote that a covering doc was suprised that O was doing well on Rinvoq because she was the first Crohn’s patient he saw that has lasted longer than a month on it. I didn‘t find that remark very hopeful... But perhaps I‘ve misunderstood.

Really nice O can manage such a busy life. I take my time in the morning and fortunately I’m able to because I work from home. And also very nice that you all seem to know the dates of scopes and surgerys far in advance. That makes planning more easy.
 

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