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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.
 
We are very lucky at her center. They pencilled her I. For surgery not even knowing exactly which surgery she is having. When she had her initial scopes there they were on Monday, they decided on which surgery to do and surgeon fit her in On Wednesday and even got her in for MRI tursday and some other testing. They are super flexible and accommodating. Too bad they are so far from us.
 
O's calpro posted and it was normal! Granted it was only looking at her small bowel but she has never, ever had a normal result. Not even for the three years of clinical remission back at the beginning.

The great news about this is that Rinvoq is holding her small bowel disease. So, she is one step closer to a reconnect. If her colon looks good at scopes then it will be a go! Ohhhh the suspense fit all. But like everything with this disease the suspense won't stop because then we will be watching like crazy waiting to see if Rinvoq could hold her colonic disease once the fecal stream starts again.
 
Not so informative update.

O's GI had to cancel her scope and ileoscopy at the last minute. Luckily he and the surgeon said they would accept a scope done by an outside IBD provider and her pediatric GI and endoscopist agreed to have her go to her old children's hospital.

Scopes were today.

Her TI is pristine, which we expected.

I only got to see the fellow after the scopes so the meeting wasn't super informative but here are the highlights.

Early on they encountered narrowing. It was bad enough that they couldn't get an adult scope through and they had to resort to a pediatric endoscope that they use for little kids.

There were areas of inflammation and oozing through the sigmoid colon. She said it looked angry.

There was some passing comment about her rectum looking polyp'y but not really sure what that means.

I told her I was assuming this meant no reconnection and that she was likely looking at total proctocolectomy with end ileostomy and she said she couldn't comment on this because she is not familiar with her case. She also said we had to wait for biopsies.

She did mention diversion colitis. I may've explained this before but that is when the colon is diverted and not exposed to the fecal stream it will sometimes become inflamed. The treatment for that is reconnect. So I am not sure if they can determine if O's inflammation is DC or IBD. Also not sure if reconnecting to see if inflammation gets better is an option. Also not sure if the narrowing is permanent. It did sound lie it was scar tissue and pretty hard and unforgiving.

We meet with the surgeon on Monday but O is fully expecting to hear that we are at the end of the road and there are no more Hail Mary passes. She is very disappointed.

I would have waited to update but I feel that all the what if's etc might help someone else in the future. Will update on Monday.
 
Hugs
The good news is you/she will have answers soon.
Unofficially she knows the answer
But answers are a good things so she can move on.
Maybe while your in at the big adult place push then to get her better bags that seal ;)
Sending lots of healing thoughts to you and her
 
Don’t know what to say apart from that I feel for O (and you) and that I wish you the best of luck Monday. Not having definite answers and having to (decide to) do something what you (probably) don’t (really) want to do, is tough.
 
Sending big hugs. I hope you get some proper answers on Monday!
I have a question though - would they be able to make a J pouch for her or would she have to have an ileostomy?
And can they tell if it’s diversion colitis vs. IBD based on biopsies?
 
I am reading up like crazy and it seems it is very hard to determine IBD vs DC. But I got the endoscopy report and there are several points of narrowing and loss of Haustra which basically means her colon is a lead pipe. So I think whether it was DC or IBD the point is moot. The colon and rectum need to go. I will continue to hold out a glimmer of hope though for an experimental reconnect to see if it was DC and we can turn this thing around. But seems in what I have read, 100% of people with diversions get DC. It is just a matter of whether not they are symptomatic. But remember a lot of people get diversions for reasons other than IBD. Diverticulitis, cancer etc. They say in cases of IBD they feel the colitis is usually more the IBD than DC.

IF she is able to get a j-pouch (which I think is really slim given the severity of the disease in her rectum), they make the pouch and divert you with a loop ileostomy until the pouch heals. Then you go back about 6 months later to hook everything up. Then you live without the ileostomy. But let me tell you, the j-pouch could be a whole other set of worries and potential problems and unpleasantness.
 
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Warning - very long update -feel free to scroll on by.

We just had a virtual visit with the surgeon.

He presented quite a few options but wants her to come in next week and get more imaging, he wants to do his own colonoscopy and have a GI do an upper endoscopy, have her do an anal manometry exam and one or two other types of exams.

He said the decision is very important and we should have every fact available.

We talked about how in one way things looked better, no ulcers, but in another way things looked worse, narrowing. He said there was already dilation on the imaging we did last year. He is concerned her colon might be a lead pipe.

We talked about whether or not what they saw might be diversion colitis and if restoring the fecal stream might help but he felt we are beyond that at this point.

The options he presented were:

1- remove the rectum and sigmoid and do a colostomy. Colostomies are easier to manage but risk is leaving part of the colon in and disease activity.
2 - remove the rectum and sigmoid and do colon to anus surgery but that presents trouble with emptying. He said the colon is like a conveyor belt and you might eat some breakfast and have to go to the bathroom, eat some and back to bathroom and this could happen 7-8 times. It will happen later in the day also. Some people get around it by doing an enema to empty everything out. O HATED this option. She said she has done the 20x a day thing and she isn't going back. And the enemas just sound tedious and she is starting her clinical fellowship. He agreed. He said they typically only do this for older rectal cancer patients.
3 - remove everything and do an end ileostomy . Could possibly get away with no drugs for her ileum since her disease there has been quiet for a few years now.
4 - j pouch...he is concerned that she has had ileal disease in the past but it has been so quiet for quite awhile maybe drugs will keep it that way. Also wondering about fissures, which she remembers once having but not really ever having a problem with them. Fissures would mean no j pouch.
5 - who knows maybe all the evaluating goes great and we could try a straight reconnect.

O told him she might like to try the j-pouch but she has medical ptsd and she is concerned about having ongoing issues and it might be nice to get the end ileostomy and just be done with Crohn's. But she has tried so many other whacky and experimental things, why not try a j-pouch.

She is disappointed but handling it well. She says she knows what an ostomy entails so she isn't scared, just disappointed.

That's it for now! First stop graduation!
 
Well here is something super weird. In her current hospital record they have her path report from the children's hospital that just did her scopes. ALL of the biopsies show chronic inactive quiescent disease. So that sounds pretty darned good. Maybe, just maybe she can reconnect?
 
I’m wondering why the biopsy report is so different from the verbal report from the fellow (“There were areas of inflammation and oozing through the sigmoid colon.”)

Did they not biopsy the angry looking parts?

Or can things look bad grossly but be ok under the microscope?
 
I know right? Plus I saw the pictures and it didn't look angry at all. It looked more bored and tired than anything else. Definitely loss of Haustra and zero vascular markings but not angry. Maybe scarred and a lead pipe. Like it was saying, "I'm done". So I am not even sure that bodes well for keeping it in but definitely confusing. I am so glad the surgeon is ordering all this testing at his hospital and not going by her pediatric hospital's report. Not that they did anything wrong but things get lost in translation. What a waste of our time.
 
Nice to read that they are very thorough with testing and that there might be options. However that also comes with the difficult task of choosing… Wishing you all the best. Also wanted to thank you for all the information, helps me accept my surgery this thursday a bit more.
 
According to my GI and surgeon a proctocolectomy is the only option (inflammation with narrowing/polyps and I have fissures, so a pouch or a reconnection are not really an option…). Not looking forward to it but I hope everything will go well tomorrow and afterwards…

Like I said: good luck next week with all the testing and choosing what seems to be the ‘best’ option for O.
 
Well if this is any consolation, O was told that an end ileostomy is a bit easier and better than the temporary loop ileostomy. Apparently the end ileostomy sits lower and for some anatomic reason results in less leaks.

I am sorry you find yourself here. We know all to well the long years of fighting only to find yourself here.

Our GI and surgeon never say, "unfortunately you need TPAC with EI". Because to say unfortunately makes it seem like this surgery is the worst thing that can happen when in reality it is disappointing but try to remember you will be done with the janky colon and rebellious rectum and able to live your life free of this disease again!

We will be praying for you tomorrow and when you feel up to it, please hop on and let us know how you are getting on. 🤞 🙏🤗
 
Update

O had something like 11 procedures this week here at the hospital where her adult GI and surgeon are.

She had an exam under anesthesia, upper endoscopy, ileoscopy and colonoscopy yesterday along with an MRI and a GGE.

Her surgeon said that she does have narrowing and still had rectal disease. He said her rectum has long vertical ulcerations that look like cat scratches. He and the GI who heads the pouch center were both at the scopes and discussed her case at length and they both feel that a pouch in her case is just too risky. If they connected to the rectum, the pouch would constantly have Pouchitis and disease would flare in the rectum and she would have to use enemas and suppositories etc. They also feel that the rectum would just not last. They could connect the pouch to the anus but they felt the risk of anal vaginal fistulas was just too high and those are a bear to deal with.

O was already leaning toward a total proctocolectomy with end ileostomy heading here and the surgeon was very glad to hear this. He felt that is a very wise and mature decision.

The surgery is scheduled for tomorrow. She will be inpatient 3-4 days and then we only have to stay another 2-3 days and then get to go home.

He confirmed for her that she is getting the "barbie butt" and that an end ileostomy is often a lot easier to manage than the temporary loop.

While we are all disappointed we couldn't make this work we are all at peace with the decision and looking forward to a life where Crohn's is not a constant struggle.

They are likely going to let her take a break from all meds for 6 months and then return for an ileoscopy to check the small bowel and make a med decision at that time. We have to wait for the Ileal biopsies to come back but we are fully expecting no disease activity based on the biopsies taken at her pediatric hospital a couple of weeks ago.

Onward and upward!
 
Praying for a smooth surgery, and recovery. Really feeling emotional about this having known O's story for so many years now. I hope she gets absolute relief in the years to come. I'm thinking of you too, and while it is not your first thought - am hoping you get a good break from the stress in the near future. You are both tremendously strong.
 
Sending BIG hugs. O has been incredibly mature and incredibly brave. I hope this will give her a LONG break ( a forever break ideally!!) from Crohn's.

Remind her that she will heal faster if she takes the pain meds - no need to suffer unnecessarily. I hope the end ileostomy will be much easier to manage and she won't face leaks. Will it be exactly where her current ileostomy is or in the different place?

She has been so strong for so long. I hope everything goes smoothly. Update when you can.
 
Sending many healing thoughts and prayers your way
It’s tough to hear
But so glad she finally has a path forward that will let her live life to the fullest without pesky crohns interfering
Hugs 🤗
 
Tough and brave decision.Wishing you all the luck with surgery and recovery. Really hope everything will go well and that the pain will be manageable. Thinking of you and O.
 
Will be thinking of you all tomorrow. Hope the surgery goes really well and that recovery is quick and complication-free.
 
Sending healing thoughts for a quick recovery and freedom from constant Crohn's symptoms. O is a real trooper and so mature about this and you are one fabulous mother! Hugs to both of you.
 
LONG day. The surgery was a success. He was able to do it all laparoscopically which is why it took about 6 hours. The surgeon said her entire sigmoid colon and rectum looked positively awful and that means we made the right decision. LOL…I didn't know there was a doubt. They told her pediatric GI (he is friends with this crew and has been consulting on the case). He wrote me an email and said from all the reports he got from his hospital's endoscopist and from the new GI and surgeon, that it seems the entire colon was not salvageable. Not fun to hear but it will help me sleep better.

She has a catheter, a drain and is NPO for now on IV fluids. She looks rough with blood everywhere but she is in good spirits. The plan is to hopefully advance her to clears tomorrow after rounds.

Thanks for all your well wishes and prayers and for traveling down this very long road with us. You have all made this journey a little easier and helped me keep my sanity in a very insane situation! I appreciate you more than you will ever know!
 
SO glad to hear the surgery went well and I’m also very impressed they did such a major surgery laparoscopically!

O is a champ - I hope the rest of her recovery goes smoothly!!
 
This decision must have been a difficult one, so I hope the disease goes to sleep and she can live a life full of positive things and not constantly conditioned by an active disease.
 
Hi! O's recovery has been a bit rocky. She was discharged Tuesday. Unfortunately she was still not able to eat, was very weak and started bleeding. So we ended up back in the surgeon's office. He drained her proctectomy site but was concerned about her lack of appetite. He admitted her to be on the conservative side and get her fluids, labs etc. He ordered a CT scan and that uncovered blood clots in her portal veins, so good thing we went back in. The CT also showed a build up of fluid at the proctectomy so he had to go ahead and drain that. The surgeon said the blood clots were likely the cause of her lack of appetite. She has managed about 500 calories so far today…still have dinner left. We are hoping she will be discharged tomorrow. She will be discharged on oral blood thinners for 3-6 months. He asked us to hang around a couple of days so maybe flying home Monday but I will tell you this surgery is pretty icky. IDK how she will sit on a plane and in airports for 8 hours.

We also heard from her GI and it sounds like now the plan is no meds for her small bowel for the next 6-12 months and we will do an ileoscopy and decide on drugs then. I am voting for 6 months, 12 makes me nervous but you know O….all things medical are just an inconvenience and if they said 12 she is going to take full advantage of that!
 
What about Rinvoq? You said she's been off it for a couple days and I'm assuming the half-life is pretty short since it is given daily, but it's extended release. Could that have added to her blood clot risk?

Also, we were told simply inflammation can increase your chance of blood clots. M's D-Dimer was elevated recently and we were sent to the ER to rule out a pulmonary embolism based on her symptoms. That's been ruled out and they are saying her D-Dimer has been high simply due to inflammation since she has no sign of clots elsewhere.

So sorry poor O's recovery has been so tough.

I do NOT like the idea of her being off meds for even 6 months!! Yikes. The last thing she needs is to develop bad TI disease!!
 
I asked about Rinvoq but no one said anything. And yes, IBD patients are at an increased risk but it is still pretty rare.
DUDE! The GI said she can even wait 12 months! I am very concerned about this but guessing that any symptoms and they will react.
 
…and yeah they told us that DVT's are much more common but these weird portal vein ones not so much. Who knew?
 
I would expect DVTs to be more common - especially in patients who struggle with walking after surgery. The portal vein ones are weird, but if there's anything I know about O, it's that she's not a typical patient (just like M)!

The GI said she can even wait 12 months! I am very concerned about this but guessing that any symptoms and they will react.
Click to expand...

How likely is O to report symptoms and not explain them away? I don't mean that in a bad way - I think she would report them if she could identify them but symptoms from small bowel Crohn's can be so vague - just belly pain, nausea, cramping etc. I mean, she's used to colonic Crohn's - very dramatic colonic Crohn's - lots of BMs and lots of blood. That may not happen with ileal disease.

I mean, look at her younger sister- her TI looked way worse than the doctor expected based on the FCP and her symptoms.

Can you do fecal calprotecin regularly? And I guess you will have to change your threshold for taking action - in the past, maybe 800 would have been good for her (vs. 3000) but now 800 might be really high. 300 might be really high. I just hope her doctor will be cognizant of that since he doesn't know O very well yet.
 
LOL! No! You are right to be concerned about her because she explained away her colonic Crohn's also. She would tell me something and then say, "but let's wait and see if it keeps happening". So I totally see her doing that with small bowel disease especially since she isn't as familiar with those symptoms. Her TI has been a mess before but it was when she was in an awful colonic flare so that upstaged her TI disease.

She does under report and especially because of situations like this. When the surgeon said readmit she started to cry. She has just been through this too many times. We had to explain to her that this readmit is NOT like the others. Those were due to disease. Now we cut the disease out. These are just precautions after surgery. She won't be in the hospital for months on end.
 
crohnsinct said:
…and yeah they told us that DVT's are much more common but these weird portal vein ones not so much. Who knew?
Click to expand...

I've learned to never underestimate the ability of Crohn's disease to throw a curve ball. The pericardium is said to be an exceedingly rare site for an extra-intestinal manifestation of Crohn's - only about a dozen or so cases reported in the medical literature. But that rarity didn't prevent me from coming down with a bad case of it.
 
I’m really sorry to hear that her recovery has been rocky and hope it's smooth sailing from here on in!

Surgery, specifically colectomy (at least in UC), and IBD (particularly active disease) are all risk factors for clots. Did the surgeon discuss prophylactic anticoagulation? I'm not sure but it looks like they may assess each patients risk preoperatively and then decide about anticoagulation.
Did they not include Rinvoq in their assessment?

I saw this opinion piece that talks about portomesenteric thrombosis in IBD patients and suggests that the incidence may be much higher than the 3-10% that is cited. (I don't know the differences between portomesenteric and portal thrombosis). Did vascular medicine evaluate her? (I personally would want this). Will she have a follow up at some point to see that the clots are gone?

Sending a lot of hugs and well wishes!
 
@xmdmom yes. Any surgery she has had they have her on iv heparin and last year she was discharged on Lovanox shots for about 30 days. For some reason this time it was just lovanox shots inpatient and at discharge nothing. She dropped Rinvoq two days before surgery and supposedly it clears the system that fast so they weren't concerned. She also is not on birth control pills so that was a positive for her.

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. They also want a virtual follow up when we get home.
 
Yeah. I am so whatever at this point. The important thing is they caught it. We felt utterly ridiculous getting readmitting because she couldn’t eat and her bum hurt. Thank goodness this place doesn’t care about bounce backs and they were super cations. Could you imagine if we flew home?
 
@xmdmom that is an interesting piece and very true. If they aren’t testing every patient how do they know the actual numbers. Interestingly, that physician used to at the hospital O is in.
 
So here is what seems like a silly question. Do blood thinners make your H&H take a dive? I know what they say but what are people’s real life experience?

She was supposed to be discharged today but We are in a holding pattern for elevated CRP and tanking H&H.
 
I think that a big drop in H and H due to bleeding would likely be associated with increased heart rate and orthostatic hypotension and feeling weak. What does attending surgeon say?

in any case, she must stay till she and her hemoglobin are stable.
 
M’s only been on subcutaneous Heparin after 3 surgeries - two major and one was the open abdominal surgery for her J tube. Her hemoglobin did not drop on blood thinners. It was a little low but still in her normal range - even after the double joint replacements.
 
O.K. well it isn't THAT low but it had been climbing and now dropped far for her overnight. Her crit is 27.9 which is even lower than after surgery hgb is 9.2 and it had gotten to 10.7. The docs here are saying the blood thinners don't affect H&H…I was just wondering because I know hydration does but she has been on fluids since Wednesday night so that's not it. They are also waiting to see what her most recent CRP is because it had gone up after surgery and they kept her an extra day but then it only came down to 149. They ran another one this morning and want to see it lower in order for her to leave.

The surgeon checked her all out and no reason to suspect anything. She was a little weak on the last walk we just took but I attribute that to her not eating much. IDK about her heart rate. I wasn't in the room the last time they did vitals.

She got one good pain med and is resting a lot more comfortably now.
 
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I know for my kiddo when he had minor surgery
Numbers were good right after surgery but then went down later
Docs thought his body just used up reserves and wasn’t able to keep up
Hope she bounces back
 
10.7 isn't too bad. Her hematocrit is pretty low though.

About the clots and Rinvoq, you said she stopped it two days before the surgery. In the rheumatology world (which has used JAK inhibitors much longer than the GI world - since 2012), you stop Rinvoq 7 days before a major surgery. So I do wonder if she had some in her system and that and all the other risk factors for clots lead to the clots in her portal veins.
 
Her hgb is 9.2. down from the high of 10.7. And now that you mention it she got an iron infusion last night, but I imagine it would take a while for that to have an effect on her labs eh?
 
Yep! She is in the clear! It came down 20 points. The surgeon said they only get concerned post op day 3 if it hasn’t started coming down. Hers didn’t so they kept her an extra day. Then we left and came back and it hadn’t moved down again at all so he wanted to be extra cautious especially with the H&H and blood clots etc. but it is down again. Still elevated but going in right direction. We could all stand down. She is being discharged. We will hang around here for a couple more days then fly home. We got the good pain meds for the travel day.
 
Sorry to hear that recovery has not been very smooth. Hope she is out of the hospital and that the pain is doable, specially during your long journey home (8 hours? yikes, I found the drive home already tough and that took about 75 minutes…).
 
@crohntje Thanks for the well wishes. We are in the hotel and she is still pretty rough. She can't really eat and even drinking the rehydration solution is a struggle. She blacked out this a.m.. I managed to get her downstairs to eat breakfast but she vomitted right after. I think it was due to the pain med she took this morning for the first time since she left the hospital on Friday.

Her bottom incision is getting very itchy. I imagine that is a good thing and means healing but did they warn you about this? Did they tell you what to do to help it? Also, she is still bleeding from that area.

This is really a lot more than I expected it was going to be. Kudos to you for being able to endure this. I guess it is temporary and better than unrelenting IBD but ugh as a parent it is very hard to watch.
 
That does sound really rough. I really hope she will feel better soon and is able to drink and eat (that they let her go like that; doubt they would of discharged me while throwing up and blacking out). Does she have pills against nausea? Those have helped me. Hope her ostomy is not giving her trouble.

Yes, it itches and stings and I find it painful still. Very annoying. They did not mention it I think. I also recognize the loss of blood. According to my surgeon not uncommon but also something to keep an eye on. I see my surgeon again on thursday. I just hope my wounds are healing well and I will definitely ask if there is something to do about itching.

I can imagine it is very hard to watch for you as a parent after all my parents probably feel the same way…
 
Ugh. Just seeing your post now. Is she feeling any better today? How is her hydration status?

Sending hugs and hopes that she will be feeling better soon.
 
Aww thanks @xmdmom. She is less woozy and able to eat little bits and she kept her pain med down but I still can't get more than about 500 calories into her. She is drinking about 16 ounces of the rehydration concoctions.

New development yesterday though is increased drainage from her bottom. Like soak a pad, like pee'ing in the toilet and dripping blood. Our flight is at 1 today! She called the surgeon's office just to make sure this is normal and we are clear to leave.
 
Like you, I'm concerned... It makes it really hard when you have to decide on a flight. If there's any way you can stay a few days longer, I would really do that.

Dehydration, soaking drainage, dripping blood.... I think you guys have gotten used to so much that this doesn't sound that bad to you. If it's normal, I'd hate to see abnormal.
 
Lol when you put it that way it does sound like we have a warped sense of normal.

We went in to the office. They probed in her bottom. Pretty deep. They got a lot more fluid out. The concern now is that the fluid they got today wasn’t draining on its own. So she is going on for another CT scan to check for fluid accumulation. Depending on how much they find they will either pack the wound to keep it open so it drains or put in a drain. Either way we are not flying home tonight.

They also ordered CBC and CRP to check for inflammation and any indications that the fluid might be infected. Also checking electrolytes and they said she looks pretty pale and rough so be prepared for possible readmit. Lol and we thought she was getting on a plane!
 
If there is one thing these guys are good at it is fitting you in and getting things done! Labs are done and CT at 4! Appointment back in office tomorrow.
 
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It all does not sound very normal to me. So, glad to read that they can see and evaluate her that quickly and that you are hopefully not travelling home too soon.
 
CBC already posted and H&H are climbing nicely so we can stand down on that one.

WBC solidly in normal range.

Platelets climbed pretty significantly. Part of me wants to say not surprising given the blood clots but she had mega doses of Heparin and is now on Eloquis so things that make you say hmm.
 
O.K. well I am silly because I forgot dehydration causes an artificial rise in H&H.

CRP is raised and CT Scan shows and accumulation of fluid. They called in augmentin and have added her to the surgery schedule tomorrow for an exam under anesthesia and probably to have a drain placed back in. I think this can all be done on an outpatient basis.

I need to leave this hotel because they have no availability so I will be shuttling our stuff and her all morning as she will likely be scheduled for late in the day.
 
Well she vomitted seconds after taking the antibiotic so will have to dose that again.

She is also dripping bloody fluid. So much that she is now wearing an adult diaper. LOL…we thought those days were over.

We think maybe that trapped fluid finally broke it's way free? Who knows? We will see what the surgeon finds tomorrow.

Meanwhile, I have to get some fluids or food in this kid. She has lost 14 pounds. A little more than 10% of her body weight.
 
Gosh, it's very good she didn't get on a plane today. One thing I've noticed a few times with people I know is that hospitals often discharge patients after surgeries when they're not really stable yet. I hope the situation improves soon!
 
That's significant weight loss - wow! I know she's vomiting, but I still wonder if they put her on an anti-emetic that was not just PRN, such as a scopolamine patch, she'd be able to tolerate more food. Or even an NG tube, if they have a 6Fr one. M swears it's just the first day or two that is hard and after that it becomes easy. And you know M - she fought SO hard against the tube, but ended up loving it.

I'm really worried she won't be able to eat at all with the antibiotic on board. And of course that will make her more nauseous and she'll be trapped in the vicious cycle.
 
LOL @xmdmom! O actually said that about the colon. That she was expecting to be down 4 pounds because she read that's how much it weighs. Then they weighed her bedside and she only lost 2 pounds. She told the nurse that was totally unfair and the nurse said, "yeah it doesn't always work that way".

She is resting somewhat comfortably. Ate 3 chicken nuggets and 3 French fries. Still waiting for her to take the antibiotic.
 
Waiting to go into surgery center but small update. O also has a presacral hematoma. So surgeon will also be dealing with that. Probably because of the blood thinners but I don’t see that she can stop those because of the blood clots. What a quandary for the surgeon.

Someone reminded me via DM that THIS is why you do these surgeries when you are healthy! Could you imagine if we attempted this when O was as sick as she was? While we feel defeated to have tried the temporary loop ileostomy and diversion only to land here anyway, it gave her a good year to get healthy so she could weather this nonsense well.
 
Hey y'all, O did great. Which cracks me up when surgeons say that. I want to say, "that's nice but more importantly how did you do?"

All the fluid, hematoma and infection have been taken care of. That's the good news.

The bad news is she had rare complication (he said 1% of cases) where the wound didn't heal. Not any layer of tissue, skin or otherwise. The only thing holding her together was the stitches. So this, and the infection and the hematoma, explains all the drainage, nausea and pain.

He had to cut away tissue and try to restitch it all. He had to pack the wound and she has a ginormous drain in her bottom. She will be like this for about a week. After that, he will use a vacuum type machine to help suck the wound closed. That has to be attached by him and swapped out twice a week by him. He is the on call next week so he can do it while she is inpatient. Maybe after two weeks she can be discharged. At that point, he will decide if we should stay local for another two weeks or if he feels it is o.k. for us to go home. He knows a surgeon at a hospital near us who trained with his department so he feels he might be able to handle her case. O feels like she only wants her surgeon to touch her but it might be nice to get home and might be nice to make a connection with a local surgeon for those "just in case" scenarios.

The surgeon and I spoke about how lucky we are that we waited for a full year after her diversion so she was strong enough for these complications.

She is feeling a bit defeated. Like her body hates her and that it is unfair because the surgery was supposed to be an end. We told her it is….it is just a delayed end. This is temporary. When we are done with this we are done!

She is likely going to have to miss her best friend's bridal shower and the bachelorette party that O was in charge of. She is mad and planning to try to charm the surgeon into letting her go. I guess we will see if her charm translates to adult care. 😂

She is on IV antibiotics, her blood thinners, gabapentin, tylenol, some bladder or kidney med, IV fluids, and stronger pain meds when she needs them.

I am hoping to be there when the surgeon speaks with O so maybe I can understand better what is going on. Will keep you posted.
 
Wow. That's a lot to deal with. I can understand feeling defeated. Would she be interested in talking with a therapist? If so, does the hospital have someone who they could consult?

I hope her surgeon will ensure adequate nutrition. Can you get enteral feeds?

If she can't attend the bridal shower in person, she can definitely participate virtually. Very disappointing for sure especially since it is her best friend and she was/is in charge.

1% rare side effect -- wondering if it could have been a med effect (Rinvoq)?
I didn't see anything when I searched but chatgpt says "there have been reports of delayed wound healing associated with the use of JAK inhibitors, including Rinvoq (upadacitinib). JAK inhibitors work by suppressing the immune system, which can have an impact on the body's ability to heal wounds." It could be wrong! I asked for citations and it couldn't give me any so that's fishy. I would ask (or ask surgeon to ask ) the hospital pharmacist about this and also how long Rinvoq causes immunosuppression after stopping. If not Rinvoq, what does the surgeon think caused lack of healing.

How are you doing with all of this?

Hugs to her and you! Sending healing thoughts her way!
 
Good Morning!

O is in a much better place this morning despite the lack of sleep 😂

She already looks SO much better than the last two times. Color back in her face, laughing and joking with the PCNA's and nurses. She was actually attacking her breakfast tray. Ate half a yogurt, 3-4 bites of omelette,3-4 spoons of cream of wheat and 2 spoons of canned peaches. I know it doesn't sound like a lot but given the past two weeks this is huge! Oh and she says she ate an entire half of a ham and cheese sandwich last night. It was little but still SO much better. She is super duper looking forward to her PB&J lunch😂

The surgeon actually did mention having the IBD psychologist pay her a visit. He knows that she declines every time she has an appointment but he is going to force her to do it. Telling her it is a check the box thing. He is apparently a very popular guy around here so we will see what transpires. If nothing else she could use the company.

She can't pee. Her nurse asked she could do a straight catheter but the docs said no. Going to the bathroom is such a pain. Getting the iv pump and that ginormous drain thing going. Then she has to cut the underwear off because she can't slip it over the drain tubing. LOL and then putting a new pair on she has to thread the drain thing through first, then her leg. It is such an ordeal who blames her for not wanting to go.

They ordered an MRI so she will be NPO again tonight. Not sure what they are looking for but since we have no where to go have at it.

She has stopped the big gun pain meds and is just doing Tylenol. However, before she goes to MRI she is gong to ask for something because she has no idea how she is going to lay on her back with this drain and packing. I told her they are pro's at this and see it all the time so they will figure it out.

Yeah @xmdmom I am vey suspect of Rinvoq. It is just so new I don't think they know everything about it just yet and wouldn't be surprised if in the next few years we are hearing the warning of stopping weeks before surgery. I remember when O got psoriasis and her doc said that it could be a paradoxical response to Remicade. He said, it wasn't a known thing at the time but that he was seeing it more and more and he was one of the clinical directors of a bunch of their trials. Now, it is a very known side effect. So much so that it is mentioned all the time. So yeah, I wouldn't be surprised if Rinvoq had something to do with this. And maybe it effects some worse than others. Who knows.
 
Do they know why she can’t pee?

M had a straight cath 3 times when she had abdominal surgery because her bladder did not “wake up” right away. They were planning to put in a foley if she needed it a 4th time but thankfully she started peeing.

Could it be from the anesthesia yesterday?

In the rheumatology world, you’re supposed to stop Rinvoq (or any other JAK inhibitor) a week prior to surgery. And the dose for arthritis is 15 mg, so half of what O was on. M had so many infections on Rinvoq that it wouldn’t surprise me if it’s the culprit.

SO happy to hear she is feeling a little better and eating!!!
 
O.K. well the PA just came in. She is scheduled for surgery again on Friday. I think it is mostly a look see. If things are o.k. he might implant that vacuum thingie. It has to be surgically implanted and stays inside her body for a few days and then changed out every few days.

She tried to go to the bathroom and I got a look at what was going on and it is pretty awful. Even I got queazy looking at it. She asked me to help her and the poor thing could not even sit on the toilet. The pain is real y'all. And her wound is packed but the skin I so open and bleeding and just ew!

So she is getting a foley. They feel it is better this way because she is going back to OR on Friday. She is pretty mad but she understands. Her mood has dipped because of the pain but they are upping the meds she is getting.
 
Oh gosh, that is a lot to deal with and it sounds so very, very painful. No wonder she feels a bit defeated. I have no trouble imagining that it is impossible to sit on a toilet like that. I really hope that from now on everything will slowly get better.
 
Sending very soft hugs her way and for you too
So glad they are top of thing
Stinks she has to deal with this as well
Fingers crossed the Friday surgery helps things to heal in the right direction
 
She is doing great! She slept like a baby which obviously means that her pain is a bit more manageable.

She slept for quite a while but I had to wake her lest her days and nights flip flop. When I woke her she went for a lap and a half walk of the ward and she did SO much better than she did the past two times. Whatever the surgeon did it was borderline magic.

Surgeon came in andI asked him if he thought Rinvoq had any part in all this and he said, "That is the million dollar question". So O's case is being documented and looked at just in case she is the beginning of a bunch more. I am guessing not a lot of people who have been on Rinvoq have had to resort to surgery yet.

He said the cultures have grown one bacteria but even that wasn't a lot and they are still wondering what went on in there. He is really wrecking his brain trying to explain this.

So just sitting tight until after MRI and Friday. O begged him to get this drain out and he promised her if there is a way to get the vac in on Friday he will do it ands will be so much more comfortable.

Now that she is feeling a bit better, I hate to see them go back in and upset everything again but I guess it is a necessary evil.
 
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Big hugs - I hope he can get the drain out!!! I’m so glad she had a better day.
 
Oh goodness how awful it’s all been what a nightmare and thank goodness she has got into a stronger place health wise before going on this little unwelcome rollercoaster. I really hope Friday goes well and she can settle into some serious rest and healing.
I remember something about protein levels being important for post op wound repair- don’t know if she can tolerate chicken soup or something like that? Or even protein shakes?
Peppermint tea and ginger biscuits are supposed to be good for nausea.
Could the blood clots be covid linked at all I remember she got it a few times? What difference that would make I don’t know. I’m just thinking blood thinners might be making the bleeding worse but what can you do.
I don’t know if it’s the same over the pond but I had a few post-op issues with the nurses wanting to give pain meds by mouth and the docs being far more willing to prescribe iv, which made a big difference because oral meds got thrown up straight away (along with the anti nausea pills) but iv didn’t, which has implications for sleeping which helps healing. So push hard for iv painkillers if not already on them as it really helped.
I’m so sorry she’s having such a rough ride. Back to the top of the prayer list and let’s hope things settle very soon. Lots of love to you both.
 
Quick update.

O had the MRI. Things looked good but a little infection or abscess. The surgeon went in today and cleaned it all out, sent sample for cultures and decided to go through with the procedure. He kind of had to. She was losing a lot of blood. They took her off her blood thinners due to bleeding but also in anticipation of the surgery. BTW the name of the therapy is Endo-Sponge Endoluminal Vacuum Therapy.

He found some fluid but that was because the packing was saturated because it had been in there a few days.

She did great through the procedure and came up to the floor in pretty good shape.

Not going to lie. It is a rough procedure, she is in a lot of pain and uncomfortable with the sponge and tube. She can not shower and walking with the tube and vacuum etc is difficult.

The surgery team plans to discharge her to the hotel tomorrow. Assuming blood labs look good.

She is booked out to have the procedure every Tuesday and Friday for the next 3 weeks. At some. point he may let her go home and connect with a surgeon at home who he knows and trusts.

We are really hoping she turns a corner sometime soon. I will say that the canister on the vacuum doesn't have as much blood in it as the drain did so maybe she has turned a corner.

She is down but that is to be expected. She has been through a rough two weeks (I can't believe it has been two weeks already!) so far and not a very fun time ahead. Just trying to keep our eyes on the prize.
 

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