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Really, your experiences on everything O has gone through is bookworthy. She has endured so much (not to mention how much you have endured too!). We, collectively, have followed your story and are hoping for her speedy recovery with no more surprises! She has more than her fair share. Thank you for sharing with us. Hugs to both of you.
 
Not going home today. Not that anything terrible happened but her Surgeon came in and would rather keep her in another day. He also said quite possibly until Monday and if Monday then he is just going to do the sponge vac change on Monday instead of discharging her and making her come back right away on Tuesday. Then maybe discharge her from the procedure depending on what he finds when he goes in.

Nice boring day in O land today.
 
Another boring day….

They couldn't set up home health, holiday weekend. So they are going to take her back to OR tomorrow and see how things are and possibly change out the vac.

She moved to only Tylenol for pain yesterday. It seems inhumane that just when she starts to manage the pain they take her back and upset the apple cart.

Stopping heparin IV today in preparation for OR so she will likely have to do the Heparin IV after procedure to get to therapeutic levels before they discharge her. So I am thinking Tuesday.
 
Pain is real...if tylenol is not enough, let them know. They don't want people to be on opiate pain meds for too long but they also don't want anyone to suffer.

How is she doing with nutrition?
 
I am sorry. I think I mislead you. SHE took herself down to just tylenol. She felt it worked good enough. BUT she is going in for another procedure tomorrow and I assume the pain will come right back after all their fiddling around. So I am guessing back on the pain meds. WE will see. Maybe the more she heals, the less they have to do in there, the better she feels after.
 
Oh I agree with @xmdmom (as you know) - I sincerely hope they will give her something more tomorrow and she will actually take it.
 
Is she just feeling she doesn’t need extra pain relief or is there something she is worried about like being sick or getting addicted? If the former they might be able to switch to an alternative she can tolerate better if the latter then maybe try just taking at night as sleep is so important for healing. The only one I would say be very careful around is fentanyl, otherwise prioritise being comfortable enough to rest.
Is she managing any food or drink at all?
Hope tomorrow goes well xx
 
Another nice boring update.

O kept getting bumped from the surgery schedule Monday for emergencies. They finally made the no go decision at 6 so she could eat a quick dinner and get a bag of heparin in before holding everything again for surgery Tuesday.

She had the procedure late afternoon. It went well and afterward she was walking all over the floor and looking pretty chipper. It is amazing the difference from after the big surgery to now. I imagine this is how most people heal after the TAP and I feel guilty for letting her suffer so badly for so long.

Next change will be Friday. They are going to try to get it first thing so she doesn't have to be NPO so much because her weight just keeps falling. The RD said she is now down 20 pounds.

She also had a day of severe dizziness. Like the entire room was spinning. They can't figure it out. Severe dehydration? They gave her fluids and she got better but the other theory is anemia. Either way she got better yesterday so we are glad.

Plan is to discharge to hotel today. The only thing that will hold us up is them getting home healthcare. But I figure they should dig out from the weekend backlog today to gather out some time this evening.
 
You have nothing to feel guilty about. You are a super mom. You've been by her side throughout. She is an adult as well and you have advocated for her throughout. I think you're super and I'm pretty sure everyone else here thinks the same. Of course, as parents, we want to protect our children and you never want them to be suffering. BUT you were always there and you cannot predict what will happen. She's on the way to healing, and that's what is important. Hugs
 
Thanks @Jo-mom my husband does remind me that we only lasted a day out of the hospital the first time and they readmitted her and that is when she was in tremendous pain. In the hospita, under their care. Then they let her out on a Friday, so it was really only Saturday and Sunday with me because we were back in the office Monday. But still. Maybe I should have brought her to the E.R. over the weekend.
 
Sounds to me like the medical team discharged her prematurely. You are not at fault AT ALL.

What is her nutrition plan to help her gain weight back do she can recover fully? Malnutrition inhibits wound healing.

She will have more NPO times etc. Seems like she will need some supplements.

Re:dizziness, has that completely resolved? Did she have it when she was lying down?
Any new meds? Anemia and dehydration cause lightheadedness rather than spinning.


What is her Hgb btw?
 
The dizziness was even when laying down. She had to close her eyes and sleep to avoid it. No new meds. At first we thought it was the valium she took at night to help her sleep but she had taken that before and the team said that clears the system faster than when the dizziness set in. IT was awful!

Oh yeah, the nutrition plan is 1-3 Kate Farms 500 calorie shakes a day. Plus at least 2 Gatorade Zero's for rehydration.

Not sure what her HGB is. It hasn't posted recently. The last one was 9.5 but they said she was severely dehydrated.
 
it would be good to know what her normally hydrated hemoglobin is. Does she need a transfusion?

Did she have a medical consult when she was dizzy? If it happens again ( hopefully not), pls ask for that .

Vertigo is one type of dizziness. The differential is different depending on the type of dizziness. Vertigo is ususally an inner ear or brain issue. Meds (2017 list) that cause vertigo here.1685538817568.png
 
That's exactly how she felt! But not taking any of those meds. Hmmm.

Since her loop ileostomy her hgb has generally been in the 11's and sometimes she goes into the 12's.
 
So the culture they took last Friday grew yet another infection so she is being discharged on antibiotics but they are guessing at this point and will switch to another one if need be. It's not like we are going anywhere 😂
 
We are in the hotel!

O had a good night. A not so great morning but is resting comfortably.

I read the surgical report and it seems they gave her a TAP block. That would explain why she looked so great Tuesday and why this morning she was in pain. Still not to a level that she feels she needs to take anything.

Surgeon said things looked good but there was very little healing. Not a freak out moment but he asked her to eat and drink, protein, protein, protein because protein builds tissue and that tissue will heal the area. The nutrition plan will definitely help with that.

Nice boring day.
 
This is a prank right? Report time for the OR tomorrow is 5:30 a.m.! We decided with surgeon that she would take a shower only on vac change days so that way if anything came loose it is getting changed out soon anyway. But 5:30?! That is just rude!
 
Next change will be Friday. They are going to try to get it first thing so she doesn't have to be NPO so much because her weight just keeps falling. The RD said she is now down 20 pounds.
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Wow, that is quite a drop in weight. I'm SO glad she did this surgery now and not when she was 115 lbs. That would have been a disaster.

I really wish she hadn't gotten rid of her G tube prior to the surgery. How is she doing with drinking 1-3 shakes daily? I know Ensure and Boost also have high protein shakes (just depending on what she prefers, taste-wise. My kiddo hated Kate Farms).

You had mentioned earlier her HGB was 9.5 - that is definitely low compared to her normal 11-12 HGB, especially if she was severely dehydrated. Could that have caused the dizziness? What has her surgeon said about her hemoglobin? I would also think she's getting close to transfusion level...

Did they ever do iron studies? Her Ferritin could be low too. M's had a slightly low hemoglobin and very low Ferritin several times and has always needed iron infusions when that happens.
 
I had her next vac change and surgeon is ecstatic with her progress. He said there was an extension up around her uterus that he was very worried about but it is totally healed now. The rest us about 20-30% healed and he estimates only 2 more vac changes!

She had a rough morning blacking out in lobby and almost vomitting. I think we just have to get her drinking way more shakes.
 
Definitely more protein shakes
For ds we did two in the am for breakfast
Then two split up after meals later in the day or just before bed
Even if he was nauseous
We treated them like medicine
 
We need a way of giving a hug and a like at the same time! Glad things are improving inside and oh no! to the black outs.

Is she dehydrated?
Does she have a large ileostomy output?Heart rate? Bp? BUN/Cr?

Or is it anemia?
 
Hardly any ostomy output. Like maybe 200 cc total for the day. Lack of nutritional intake? Small blockage or narrowing?

Could be dehydrated but she literally drank 40 ounces of the rehydration solution yesterday and liquid nutrition. Maybe she just needs a little more.

No labs today so we have no idea.

She happens to have a follow up with her GI on Monday. It was previously scheduled as a virtual but since we are in town we switched it to an in person. How convenient. She will be mentioning all of this to him maybe he could get her in with the RD and they can come up with a plan. She does also have a weird pain in her abdomen on the left under where her ribs end so she will be mentioning this to him as well.
 
So it depends on the type of formula
Elemental has next to no waste
Semi elemental is in between
And polymeric is normal amount
But given she isn’t drinking much of shakes
6-8 a day is needed of the 250 version depending on size /age
So 4 for her a day
 
She is not on pain meds and remember she does not have a colon so she actually does get a fair amount of waste with the shakes even when most of them are absorbed in the small bowel. She is eating and drinking but I can almost guarantee her issues are 1 - dehydration 2- lack of proper nutrition and 3 - just plain old weak from being in bed since 5/12!

Just heard from the PA. Apparently 2 more vac changes meant 2 more here at the hospital. He wants to do one more in the OR and then try Thursday to see of she could tolerate the change in the office. If so, she can fly home and have home health care agency come out and do the changes. If not, then she goes to OR on Friday for the change and we try in office again the following week.

So now I get to try to set up a home health care agency when I have next to no idea what I am asking for. I reminded the PA that he mentioned maybe transferring her care to a local surgeon who had trained here. That would be soooo much easier for us. I hope he picks that one up and runs with it. Otherwise, I called our nurse case manager at the insurance company to ask her to help but honestly she has been useless up until this point.
 
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Do you know and if so, can you possibly explain where exactly the wound vacuum is being placed and what that entails? Is there any judgement or expertise needed to do this?

Having a local surgeon taking care of her seems essential.
 
Well the way he explained it, he said only 3 centers in the country do this type of vac and that the sponge(s) must be placed in the cavity vie endoscopy. Then the tube run out through the bottom and there are a bunch of contraptions attached to her bottom and leg. From the leg the tube attaches to your traditional wound vac. So the fact that he wants a home health nurse to now take over baffles me. Maybe he is thinking that she will be healed to a point where she will only need external sponges/dressings etc?

As luck would have it, a different surgeon is doing the procedure on Tuesday as he will be away at a conference. So the next time we will see him is Thursday in the office. I am hoping that the PA will help us push this thing a long in the meanwhile.

So I have already called 7 HHA's and only 2 have said they would even take a look at what it is we need and even that is no guarantee that they will take her case. I will call the rest on Monday.
 
Oh geez, I hope they set her up with a surgeon. If not, is it even possible to leave Cleveland? Can a nurse even place the sponge without an endoscope? It would have to be external sponges!

We have not really had any luck with home health - they didn't even know how to handle her J tube post-op and that's so incredibly minor compared to this! We've had good luck with infusions but that's it.

I was also thinking about an obstruction or partial obstruction based on her pain and her lack of output.

I'm so glad she is healing and that the area around her uterus healed!!! That's great!!!

But I am also worried that only 20-30% of the rest has healed and that she's blacking out. Would she consider doing EEN? How many shakes is she actually having daily? Do you know how many calories she should be having, with the shakes and food?
 
LOL! They were actually very encouraged with the 20-30% healing in just one week.

So I stand corrected. The pain she is feeling is more in the center. Above her belly button. I felt it and there is definitely a hard area under there. Maybe trapped gas? Small hernia? It doesn't hurt when laying down. The possibilities are endless and it could be absolutely nothing. But since we are here and have already experienced various rare complications etc, she will be mentioning it to the GI.
 
Haha! Yep! Totally boring!

Met with GI. He thinks the pain she is having is gas so going to try a PPI.

He also would like to have her stay off meds and see how she does. He said only 30% of Crohn’s patients with isolated colonic disease at time of TAP-EI have the disease return in the small bowel. He said ileoscopy in 6-12 months. Unless of course she experiences symptoms in which case call.

She had her change with the fill in surgeon yesterday. He was nice enough. Her surgeon is going to be out for the next two weeks due to IBD complications which made me so sad to hear. I hate IBD.

So this guy is taking over and he is very concerned about pain with an in office procedure so wants to do one more in OR and try next week in office. If she does ok with in office next week we can go home next weekend. She is disappointed but hanging in.

New surgeon also doesn’t like the idea of HHA. he would prefer we go to a wound care center. So now I have to try to find one of those.

Now that we are switching surgeons I wish we could have gone home and found a surgeon there. This is getting ridiculous. We have been here over a month. Although, how O would maneuver airports and sitting on planes for 8 hours is beyond me.
 
What? Why would PPI help gas? Drug info says omeprazole commonly causes gas. Also says that about another PPI I looked up. Which drug did her new doctor prescribe? Maybe a newer one doesn't do that.

When I think gas, I think simethicone (Gas-X). I think it's benign so maybe worth a try if she's not on it and doc says ok?
Any new foods, drinks, chewing gum or medications that might be causing gas?

A wound center does sound better than HHA.

Hugs to both of you. A month+ is a long time to be hanging out there!
 
A PPI would help gastritis - is that what you meant? M has had gastritis many times and sometimes she has gotten it from being on NSAIDs without being on a PPI (has O been taking any NSAIDs for pain?) and other times simply from bile/reflux due to the gastroparesis. A PPI has helped her immensely with that kind of pain. Gastritis can be surprisingly painful - when M was first diagnosed with juvenile arthritis and put on NSAIDs, she had such bad stomach pain after eating that she lost 15 lbs. Her pain was above her belly button.

If he said gas, then I would expect him to prescribe something simethicone like @xmdmom said. It’s available over the counter. So is Maalox which contains Simethicone and would also help with reflux/gastritis pain.
 
Could they give her pain medication for the in-office procedure to make it more tolerable? Also, if she won’t be having a nerve block with the change, I would guess she will need something for pain when she leaves or she’s going to be in a lot of pain.
 
OK. you guys are right. Maybe he said gastritis. Sorry to worry you all. I am going crazy. No offense to this city. It is a very nice place but I want to go home.
 
O.K. committee. The upper abdominal pain came back. It seems to kick up after eating but the really weird part is, laying down makes it feel better. Standing and walking makes it worse. The longer she is up the worse the pain gets. Weird right? We haven't started the PPI because yesterday was O.R. so she couldn't and today she felt good so thought maybe the pain was gone. We will try it tomorrow and see how it goes.
 
crohnsinct said:
O.K. committee. The upper abdominal pain came back. It seems to kick up after eating but the really weird part is, laying down makes it feel better. Standing and walking makes it worse. The longer she is up the worse the pain gets. Weird right? We haven't started the PPI because yesterday was O.R. so she couldn't and today she felt good so thought maybe the pain was gone. We will try it tomorrow and see how it goes.
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The pain after eating and when standing up and walking around makes sense, but relief lying down is definitely surprising! I truly hope the episode is over of if it isn't the PPIs work some magic. They are pretty amazing drugs. I'm still in awe of what they did for my son. Added bonus of helping prevent or treat ulcers if she has that tendency.

Is she eating solid food or just shakes?
 
Solid food and shakes.

We did a. little experiment this morning and walked before eating and yep…pain came on but relived with laying down. Ulcer and hernia are on my differential along with gastritis and plain. old motility (given how long it takes taste to get into her bag.
 
crohnsinct said:
Solid food and shakes.

We did a. little experiment this morning and walked before eating and yep…pain came on but relived with laying down. Ulcer and hernia are on my differential along with gastritis and plain. old motility (given how long it takes taste to get into her bag.
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OK throwing this outdated and probably useless story out there in case there is a tiny chance it is helpful. My uncle had something like 3/4 of his colon removed in his 60s (over 25 years ago) due to supposedly non IBD issues-illeus/ pseudo-obstruction/motility (although who knows if it was just undiagnosed IBD). Afterwards he couldn't gain weight or handle solid food-pain and other issues. When he was transferred to Hopkins they put him on all pureed foods and that seemed to help him feel better and gain weight. For a while all his favorite foods were mixed with healthy fats and made into smoothies and he very gradually got back onto all solid foods. When he needed future procedures or would catch a GI bug, he sometimes needed to go on a smoothie diet again and gradually worked his way back to solids.
 
That would be the smart thing to do eh? Unfortunately, CORS will only do colonoscopies, sigmoidoscopes and ileoscopies. They leave the endoscopies for the GI's. Would an ulcer show in an MRI or CT scan. CORS are really good at ordering those;).

Even her GI didn't mention an endoscopy. Not even for assessing small bowel disease 6 months from now. He just said ileoscopy. I was pretty surprised at that but then someone told me that in their experience adult GI's don't do endoscopies very often.
 
@xmdmom you may have an idea here. I just remembered she was on iv Toradol for pain for the maximum number of days they would allow. She is also on Eliquis and ulcers are a potential side effect of that as well.

I am going to have her mention the pain to the fill in surgeon. Maybe he will pay attention.
 
The surgeon should ask ( and should have asked) a bunch of question about when it began, frequency, location, radiation (= movement of the pain),intensity, quality of pain and what exactly makes it worse or better to better diagnose it.
 
I agree @xmdmom but she only saw the fellow that day and it was right before the OR and he was way more concerned about her inability to pee for the pregnancy test. So I am not sure if the surgeon even knows. She mentioned it to the GI and barely got a raise of the brow. He literally asked nothing and just threw the PPI at her. I am sure it is nothing and just her insides adjusting etc but given the two very rare things that have happened since surgery and the fact we are nearing going home, I would like someone to at least talk with her about it a little more.

I think the fill in surgeon will listen. He has his boss's patient, is eager to please and seems to have a little more free time. She will tell him today.
 
I also wonder about an endoscopy, because when I had one they said mild gastritis which GI said was either due to NSAIDs, cocaine or Crohn’s. Well it wasn’t going to be the first two. But for O if there is any possibility it’s gastritis due to Crohn’s then no meds might not be wise? Although what she is experiencing sounds very different I didn’t have pain at all.
Licorice is supposed to be very soothing if it is gastritis/ some kind of ulcer but you need the proper stuff (which can push your blood pressure up) not the de-something version (where they take out the blood pressure raising element)
Gosh I really hope she gets well enough to go home soon, and I mean properly dischargeable not bleeding/vomiting/fainting/it’s okay I’m fine dischargeable. You guys must be utterly fed up by now.
 
Fill in surgeon did the vac change today. He said there was some improvement. Not a significant amount but some. He said the cavity is cleaner and the tissue looks healthier so he is hoping from this one to the next we will see a big improvement.

She told him about the pain and he was very much interested in helping her figure it out. He ordered an ultrasound to look at the Gallbladder. He said people with Crohn's frequently get gallstones. He said we mine as well start crossing things off the list while we are here. I will be surprised if that is what it is.

He was also concerned about her dehydration because she couldn't pee for the pregnancy test. She said, "but I have been NPO" and he said that didn't matter. She can NEVER pee for these tests and she told him about the severe dizziness in the hospital etc. So he wants to really dive into that as well.

So he thinks we should still try the in office change on Tuesday and told O that there is no pressure and if she can't do it, they will just wheel her down to the O.R..

Looking forward to our boring weekend.
 
Meanwhile, could she try tums when she gets the pain and see if that helps?

In terms of dehydration, is she having ongoing symptoms (dry mouth, lightheaded when she stands, darker and less urine)?
Are these symptoms new since this recent surgery or something that she's been dealing with since she's had an ileostomy?
Does she take any salt or electrolyte supplements?

Yes please have a very boring weekend (medically speaking).
 
She definitely could try tums. Good idea. I will pick some up. I am just baffled as to what this could be as she has the pain only when getting up and moving so sounds muscular but it isn't. She has it before or after eating. Time will tell. I honestly would ignore it except we are here so mine as well investigate it.

Dehydration - hard to say. She has always been dehydrated. Mostly due to her raging Crohns. But at one point when she was in remission she was still fainting. Her ped GI sent her to a cardiologist who did a few tests and said nothing is wrong with her heart. He said that she had some issue with salt and being low in salt and not able to hold on to fluid. His advice was high salt low caffeine diet. Suit her fine as she is a salt addict. But then flares came and she was always dehydrated due to that. Then ileostomy and dehydration issues with that. She drinks the rehydration solutions all day every day. Some days she is fine but she often gets up and gets that woozy feeling. Her urine is almost always dark.

The symptoms aren't new but they are extreme since the surgery but they are getting better the more she is out of the hospital and eating and drinking.

The only new thing is her ability to holder urine literally all day. They were amazed in the hospital. She couldn't pee but when they did bladder scans she had 700-900 in there. They told her 500's is high and reason to straightcath and that she HAD to pee or they would Cath her. She went hours after that without going. Even now at the air bnb, she will go when she wakes up and then once before bed.
 
I'm thinking a nephrologist or endocrinologist might be able to help investigate the dehydration problem. Nephrologists are experts in salt and fluid balance. I know the Crohn's and now lack of colon contribute to it, but maybe they would have some tricks to improve the situation.

Be sure she's getting enough of all the other non-sodium electrolytes like magnesium, too. Personally, I noticed that my hydration improved when I started taking magnesium supplements.
 
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She definitely could try tums. Good idea. I will pick some up. I am just baffled as to what this could be as she has the pain only when getting up and moving so sounds muscular but it isn't. She has it before or after eating. Time will tell. I honestly would ignore it except we are here so mine as well investigate it.
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My daughter has had gastritis MANY times and Tums is a good test to see what's causing the pain. We actually find that Maalox helps more (and many pharmacies have it and so does Amazon!). And if O truly does have gastritis, what M has been put on has been Carafate (the liquid form, not the pills - those don't do much) and that helps a LOT, sometimes even after just a couple doses.

But M's gastritis pain is typically if her stomach has been empty for a long time (since you mentioned O's pain is sometimes before eating) or after food. It doesn't change with her changing positions.

I think I am the one who said that adult GIs don't do upper endoscopies routinely. They don't - to check for Crohn's. M's adult GI said that upper GI tract Crohn's is rare in adults. But when M's GI suspects gastritis, she does typically scope. It's just that she doesn't automatically do upper endoscopies when she's doing a routine colonoscopy unless there is some specific indication, if that makes sense.

So if O's pain hasn't gone away with the PPI and is severe, I would certainly tell her GI. Especially since she has had Crohn's in her stomach in the past. Because it would be smart to do an endoscopy considering you're in Cleveland anyway.

And IV Toradol could certainly cause gastritis (we have found that some doctors just refuse to give to IBD patients for that reason).
 
Did she attempt the vac change in the office?

Thinking of both of you and hoping things are moving in the right direction.
 
Hi guys!

O had her in office vac change yesterday. It was positively awful but she did it! I was holding her hand and they let me see the cavity. It is a lot larger than I thought it would be and deeper also. It also really smelled but they assured me that the smell was a good smell. The smell of fresh flesh and blood. The worst part of the procedure was pulling the sponge out as they said tissue and nerves actually grow into the sponge and they are just ripping the sponge away. Just ew. O said it hurt a lot more than she thought it would but it was also a lot shorter than she thought it would be.

The surgeon said he would like to try to move to weekly changes so no change Friday and next change will be Tuesday. Bummer because we were hoping to go home this weekend. The surgeon also said after the change next Tuesday, hang around and leave that weekend. Totally bummed about the extra time here but there is an end in sight.

Still have't gotten the ultrasound for that weird pain and yes she still has it. Also a little woozy feeling and nausea etc. Maybe just super deconditioned. We are going to use the next week to try to get her strength up. She is certainly eating and drinking plenty.

Surgeon said he figures another 6 weeks with the internal vac and then when the wound is superficial she can switch to daily packing of the wound.
 
Sorry it is so hard and painful and that she has 6 more weeks of this. Especially tough to be stuck there and not really know how much longer.

I hope she is able to find some joyful distractions while she continues to recover.
May each day be better than the previous one!
 
O had her one week vac change yesterday and it went o.k.. Hurt a lot but she did it! The only issue is the drainage from the wound was really smelly. Like putrid and disgustingly smelly. It started last Thursday. We emailed the surgeon Friday and never heard back so went about our lives waiting for the change. He was surprised at how bad it was. It literally filed the exam room and he smelled it as soon as he came in. Of course the concern there is infection but the wound had so much granulation tissue that he couldn't see past it. He tried the old Q tip trick but that was too painful for her and he didn't want to traumatize her further.

The good news is the wound shrunk by like 70% and he felt we could maybe stop the wound vac. Instead we are packing the cavity with silver nitrate pads and covering it all with gauze. She is to bathe or shower the area once a day and I am to change out the packing/dressing. The hope is that the silver nitrate will burn off the granulation tissue to the point where he could see more to assess if there is an infection or not. She does not have a fever so that is positive. Plus I would think if there were an infection she wouldn't have healed so much but maybe that is faulty logic.

She had the ultrasound of all the usual suspects and everything looked normal. So no clue what this upper abdo pain is but the fill in surgeon felt that we could wait a bit more and that maybe it is just post surgical small bowel still adjusting.

She also is taking a long time to get her endurance up. She is eating and drinking like crazy so no clue why it is taking so long. We haven't seen a lot of improvement on that front but are keeping to our 3 short walks a day. This a.m. she walked A LOT because we had to move out of our Air bnb and into a hotel and then had to walk to breakfast.

If there is no infection on Friday we can go home this weekend! We still need to take the vac and accoutrements home with us because he said things could turn and we should be prepared.

She feels o.k.. She says it is nice to be vac less but the packing and dressings are looser than the vac foam/tube. So when she walks things move and hit the raw tissue/nerves and send shooting pain. Plus the silver nitrate pads burn for a while after they are placed in there. But she wouldn't trade it for the vac back!
 
Thanks for the update. Sorry the vac changes are so painful.

What did the dr think the smell was from if not an infection? (I agree no fever and healing are good signs.)
I would definitely want to know the reason for the new smell before going home. How is the doctor determining if she has an infection or not? Did they check a CBC w diff, ESR or CRP or culture the drainage? It seems to me that they may need a better look to identify the source of the smell and that would require anesthesia. Hope not!

Have you found a wound center and/or a new surgeon to follow her near your home?

In terms of her endurance, might it be anemia? Is there a recent hemoglobin that was done when she was well hydrated? If not, might they check?

I'm continuing to send positive healing thoughts her way!
 
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Man @xmdmom you are validating what I thought was my crazy! I thought all the same things…well except the anemia part…good point.

No culture planned. I don't think he could do that in office. Definitely no EUA planned. We are doing the next exam in the office before hours even! It is his scope day and he offered to come in early so we could get on the road this weekend, otherwise he was going to schedule us for next Tuesday!

I asked him about wound care back home and he said we didn't need it. Said that I am going to do her changes and if anything we call him and he will decide how we go forward. Said if anything needs attention he will reach out to a surgeon by us and explain what was needed.

I will tell you that her surgeon going out at this exact time has been a little, no a lot unnerving.
 
P.S. I am still especially suspect of this upper abdo pain. Her GI here said it was o.k. to discontinue the PPI since it wasn't helping at all and said, "just go home and if in a month it is still there then we will pursue imaging". I have read that portal vein thrombosis could cause abdo pain. Not sure if it would cause positional pain though.
 
I think the wait and see if it's an infection and plan to go home with no wound care or doctor set up sounds like wishful thinking. I'd rather be all set up and not need it then have to figure it out if she has an issue.

Did the doctor not have an alternative reason for the smell? Nothing normal smells putrid as far as I know. Putrid sounds like infection or necrosis but I don't know much about wounds and the surgeon does. I would have asked: Have you seen wounds with a smell and drainage like this that were not infected? What was the cause? I know non-doctors usually don't feel comfortable questioning doctors this way.

Is the pain stable or increasing? Remind me how painful is it on a scale of 1 to 10? Did you ask the surgeon if the pain could be related to the portal venous thrombosis? If not, why not call with that question. I'm hoping this surgeon knows she had a portal venous thrombosis but covering drs don't always remember these details.

Remind me about the portal venous thrombosis. You wrote "She was evaluated by vascular team and they want her on daily blood thinners for 3-6 months and a repeat ct scan before coming off them. " Then they took her off the blood thinners. Did she ever get/Can she ever get a second consult from the vascular team and when is the repeat CT?

Perhaps you could ask for the blood work and the drainage culture? Sure there will be bacteria there but if one pathogen grows out, wouldn't that be useful?
 
No, I didn't ask him those questions about the wound smell. I think I was too focused on holding her hand or rather breathing through my own pain from her squeezing my hand 😂 . Then I got distracted with learning how to pack the wound etc. Honestly though that smell would knock you out BUT now….no smell really. IDK if it is because we are changing the dressing and rinsing the cavity out daily or what. But today, she took her shower and used the shower head to clean the cavity out. By the time she got on the bed for me to change her dressing there was a thick, milky white to yellowish fluid coming out. It was there when I pulled the dressing out also. But the stuff we are packing the cavity with is made to help prevent infection so if this is infection fluid then maybe this padding is addressing it?

Upper abdo pain is stable. She says it is a 4 but O's 4 is like other people's 6-8. I did happen to ask if it was related to the PVT and he said not likely. I don't think he has researched PVT as much as me😂. She is still on Eloquis. They were taking her off for the OR and putting her back on. She saw vascular doc and he actually said 3 months on Eloquis and no need for a repeat CT scan. I am not comfortable with that given she had these and had zero symptoms. So how are we going to know if they are gone or not?

Drainage culture…do you hear me screaming? The last culture she had was with her original surgeon and it came back with all kinds of bacteria BUT they didn't try to grow anything to identify which one it is. They did for all the others, just not that one. Then fill in guy never cultured. Not even in the OR.

I told O to send him a quick text to ask if this exudate we are seeing is normal. She says, it is probably from the packing material. The silver nitrate is probably causing it. I tried to explain if she wants to leave Friday or Saturday best to run it by him now so if he wants to culture it or even just look, he could do it tomorrow (his surgery day) but you know 23 year olds. They know it all. I am sure it is probably fine, especially since she feels fine and smell is greatly reduced but you know 50 something year old know better…we have been around long enough to know if you don't say anything it will be something and if you do it will be nothing.
 
Thanks for all of the clarifications. Glad she saw the vascular MD. Very glad there is no smell now and that the exudate looks better!

Re: I think I was too focused on holding her hand or rather breathing through my own pain from her squeezing my hand 😂,
You were being a really good mom! Hopefully no broken fingers…

Any possibility that there had been a piece of gauze or other small foreign body stuck in her wound leading to the bad smell?
 
That’s possible I guess. Or it was due to the fact that we went a full week. Friday would have been the regularly scheduled vac change day. Despite the fact that the vac sucks much of the drainage away a good portion of it gets soaked up in the external dressings so maybe that was it also. Although, the surgeon and nurses weren’t acting like this is a regular occurrence.
 
As luck would have it, the surgeon was finished with his surgeries early today and he called us to come in.

The white fluid is very usual and not something to worry about. He said it is tissue sloughing off and a very good thing but acknowledged that it looks like pus and said it alarms almost every patient. He doesn't warn you about that because he would rather you come in than assume it is fine and have it turn out to be pus.

She has a sinus that has developed going toward her vagina. He treated it with a silver nitrate stick and treated the rest of the cavity with it as well. He taught me how to do it along with the dressing changes. Not clear on how often we have to do those sticks and walked out forgetting to get some sticks and forgetting to ask how often. Send a my chart message.

WE ARE FREE TO GO HOME!

Send pics weekly and at some point we will have a virtual visit.
 
Sounds like this recovery has been significantly harder than expected. Do most people who have this surgery also have a recovery like this? If not, what do you think went wrong?
 
That's WONDERFUL that you're finally going home!!!

I think the wait and see if it's an infection and plan to go home with no wound care or doctor set up sounds like wishful thinking. I'd rather be all set up and not need it then have to figure it out if she has an issue.
Click to expand...
But (and I'm so sorry there's a but) I have to agree with @xmdmom here. There have been new issues that have popped up MANY times in the last month and a half that the surgeon(s) have had to deal with. So I'm still quite concerned that she is going home without a referral to a wound care center or a surgeon. It can't hurt to get her evaluated at the Stanford Wound Care Center. At worst they'll look at it and tell you you're doing everything right, which would be very reassuring. And then if anything new pops up - like a smell, or discharge - you have someone to call and ask if it's normal.

Especially if she's developing a sinus near her vagina - someone needs to monitor that. Pictures aren't going to really show if it's healing. And I would absolutely HATE for her to get another infection. She's already been through more than anyone could have imagined in the last month - more than most people go through in a life time in terms of surgical complications!

How is her pain now?
 
Marvelous to hear that you are finally able to go home after so many weeks! I hope that recovery from now on will be more smoothly. I know from experience that healing from this surgery can be tedious but O is really unlucky. Wishing you safe travels, with hopefully little/manageable pain for O.
 
Pangolin said:
Sounds like this recovery has been significantly harder than expected. Do most people who have this surgery also have a recovery like this? If not, what do you think went wrong?
Click to expand...

The recovery from total proctocolectomy is not usually like this. It is long and painful but takes a much different course.

She has just had a few very rare complications.

They usually have you sign off on the known risks such as nicking the urinary tract, sexual dysfunction, infertility etc.

Apparently colorectal surgeries have the highest risk of blood clots as do most abdominal surgeries but her clots are not the usual ones that occur. Plus they were treating her with prophylactic Lovenox after the surgery as protocol. IBD in itself is a risk factor so who knows, she might have had them going in.

The infection? Well these things happen. I think the risk of infection is like 30% in colorectal surgery. She had blood clots and abscess in the infected cavity. I think that is pretty usual with infections.

The wound not healing? The risk of that is only 5%. She was screened for that potential and there was no way of anticipating this happening. Not diabetic, not a smoker etc.

The big question is whether or not Rinvoq added to the infection, clots (it is a risk in the prescribing literature) or wound not healing. But Rinvoq clears the system very quickly and they have looked for evidence that it contributed and so far nothing.

Just dumb luck.
 
Wanted to add that they screened her for risk of blood clots and she came up at a .7% risk. So definitely just a super weird and random thing.
 
I hope they have reported these complications to the FDA. In rheumatology, where they have been using JAK inhibitors for 10+ years, the surgery guidelines say to stop JAK inhibitors like Rinvoq and Xeljanz 7 days before major surgery (and generally major surgery in rheumatology is joint replacements). And the Rinvoq dose is 15 mg in rheumatology, vs. 30 mg for refractory Crohn's patients.

So I'm kind of surprised they did not stop Rinvoq earlier, even if it is a daily medication that leaves the body quickly.
 
@Maya142 they reported her case to a registry and asked our permission to write a case study on her. I don’t think anyone is ready to say Rinvoq caused the poor wound healing but I also don’t think there are enough people who have been on Rinvoq who have had surgery.

She stopped taking it 2 days prior. I think if you have the luxury of stopping it 7 days prior then that is a lot better but with her, stopping a full week prior to surgery could have meant her disease would get so much worse and with the sigmoid stricture and the totally shot rectum, we would be risking a ruptured colon and that would have been way worse.

Her surgeon went into the technical aspects of Rinvoq and why in theory it shouldn’t have contributed to the wound healing troubles but he also said,”but who really knows”.

At this center, they operate on people who are taking massive amounts of steroids and all kinds of biologics all the time Mostly because they are emergency surgeries. Even then he said the incidence of this wound dehiscence is very very low.
 
crohnsinct said:
Thanks @crohntje How are you getting on?
Click to expand...
Compared to O my recovery is rather boring… So far everything seems to be healing slowly and nicely. Wound is not closed yet, so I have to keep rinsing it for another few weeks. Pain is manageable, it is more itchy now. Also very tired but I’m getting an iron infusion next week so hopefully that will help. Redness/inflammation around ostomy has healed with the help of tacrolimus ointment. I at least hope O is not having problems with her ostomy on top of everything else…
 
Wow, I had no idea her Crohn's could get that bad in 7 days! Yikes. I understand why they only stopped it 2 days before.

M had two minor surgeries on Rinvoq plus another biologic and did fine...but they were very minor surgeries. But maybe O just got very, very unlucky and it had nothing to do with Rinvoq at all.

I'm glad they're writing a case report about her. M says she'll be famous (well, anonymously famous) and she should frame it when it's published!
 
Hope you are enjoying being back in your own beds and that things have settled down for O and healing well. What a rollercoaster. Hope you are both getting some rest and recovery x
 

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