Heard from Doc today

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So the 4.0 is confirmed. yay but boo....This means I sorta have a smart kid. She came to me today and said she would rather not add EEN at this time because too many changes in therapy and if things get better we won't know which thing (Humira or EEN) are fixing things. dang! I hate when they pay attention all those years.

I am actually fine with this except, I am really anxious to see some improvement and really don't care where it comes from.
 
Hey y'all. Quick update. Almost two weeks after first loading dose of Humira, and 9 days after her last Entyvio infusion, O was going up to 16 times a day and bleeding. One time a hat full of nothing but blood. She felt really icky, had a headache, on and off nausea and abdominal pain.

Had second loading dose of Humira.

GI had us pull labs, blood, c diff, general stool studies. He was concerned about anemia or dehydration. Increased Entocort back to 9 mg daily.

C diff negative.

Blood labs are all within range. H&H are best they have ever been. Albumin spot on. No signs of dehydration. Just CRP is up to 18mg/l. Up from 11 four weeks ago. Not earth shattering but also not trending in the right direction.

Frequency and bleeding are back down, seems abdominal pain, headaches and nausea are also going. I am assuming Entocort is helping there.

No clue what this all means. She has an appointment with him next Friday. Stay tuned.
 
Had our appointment on Friday.

GI is wondering if we should keep Humira on board because we are putting a lot of drug into her body with very little return. Thinks we should give it another bit as she only just had her third dose on Friday. Said that generally speaking Abbvie (the makers of Humor) say that if you are not responding within 6 weeks you will likely not be responder. But yes, he has in his experience seen that some people will still respond after the 6 week mark.

Given the fact that she had stopped bleeding, stopped seeing mucus, has no night waking and has gained weight, he feels she is in clinical remission.

Yes, she is still going 7-8 times a day, still all liquid or mush and still on Entocort which I think is the main driver of the other improvements so I am not as sure as he is about this clinical remission but I am playing along nicely.

He is concerned that her CRP and ALT is elevated and says that shows him there is inflammation in her blood. Wants to continue to watch that and fecal cal as her cal pro has been around 500's.

He feels that there is still an "irritable" component to her colon. He wants her to try Imodium for a while when she knows she won't have easy access to a bathroom and see if that helps. He said we have to retrain her bowel. Said it is used to letting everything go the minutes it feels anything so maybe we can use Imodium to slow things down and retrain the bowel. She has used it two days so far. One day no luck but she took it right before she left the house. The next day she took it an hour before and it seems like it worked.

Today has been a relatively calm day (she is mostly in bed on her computer enjoying a lazy day) except we saw some blood. Waiting that out to see if it is a trend or not.

Have a great weekend everyone!
 
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Update time.

Last Wednesday O had her infusion which also means labs. CRP is back down to 8 so normal. H&H are down a little but still within normal and higher than she usually runs. WBC was low. I was thinking maybe Humira caused that because she did constantly have low WBC with Methotrexate.

Cal pro returned over the weekend. 1,125. He emailed her saying he wanted to discuss labs.

He said that he has been watching her WBC. It was normal but on the very low side last infusion and now dropped quite a bit under the cut off. Watching neutrophils and those are lower now also. Now with a big jump in fecal cal protectin (460's to over 1000) he is wondering if she might have CMV. You might recall that she tested positive for mono last summer, even with little to no symptoms. When she was admitted later that summer they all poo poo'd that result saying there is a high false positive with that test and she didn't have mono but GI believes the test. CMV is apparently related to mono so he is back to wondering if she has CMV (you might remember earlier this summer he was wondering the same). He said his suspicion is very high for CMV especially given the jump in fecal cal with no increase in her bleeding.

He requested a CMV blood test but said those have a 50% false negative rate and that biopsy during scope is the definitive answer. But if it comes back positive then we know for sure and will treat the CMV with is a 21 day course.

If it comes back negative, then our choice is treat for CMV (he said little risk) anyway or just scope to test for CMV and see what else is going on.

My concern is that she is going to school in the end of July and a three week course of CMV treatment if it doesn't work will just delay things if we need to go to scopes and then do EEN or move to surgery. He said we should know in a week to week and half if the treatment is working and then can make decisions.

I am inclined to go straight to scopes if the test comes up negative. I am tired of all the "maybe this" maybe that". But she is 20 and it is her decision and she would have to do the clean out etc.

We talk wit GI again on Wednesday....stay tuned.
 
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Makes sense but also scopes are a miserable way to spend time.

If she has CMV makes me wonder if adding the humira has stopped her body being able to keep it under control. In which case I don’t know if stelara would be a safer add on to the entyvio?
What a frigging nightmare for her. I’m so impressed with how she copes.
The other idea but it’s a massive stretch is to get in touch with the folks in Canada doing the qu biologics ssi stuff - a totally different approach. It’s all very new but from what I’ve read they have a sense already that certain genetic profiles are more or less likely to respond. In an ideal world, could they look at her blood to get an idea if she would respond and if so allow compassionate use? They’re supposed to be doing more trials but doubtless all on hold due to the virus.
 
Just got message from GI. Her labs are reassuring. WBC is backup to 4.7 from 2.7 and neutrophils are back up to 3 from 1.1. He said let's wait and see what CMV test says but then says he sent in the script for the anti viral but wait to pick it up.....she hasn't agreed to take it yet!
 
Honestly, I agree, I would definitely want her scoped considering her FCP jumped up so suddenly. It could be CMV. But it could also be the beginning of another flare -- I know, that's exactly what you don't want to hear! But it's a possibility. She has incredibly stubborn disease. Have they ever considered sending her to an immunologist for genetic testing? My daughter's GI mentioned this for her, but not because she has incredibly stubborn Crohn's, of course. But she does have incredibly stubborn arthritis that is incredibly treatment resistant. Her GI told us about a patient she had who was like O and M - he had very refractory disease, had tried multiple biologics and failed them and nothing they did could control the inflammation. He was headed for an ostomy I believe...or he may have had one done recently - I can't remember. Regardless, when he saw the immunologist, the doctor found that he had a mutation of a certain gene, NOD2 and recommended a biologic that is used to block IL-1, like Kineret, which is typically used for rare autoinflammatory diseases. It worked like magic for him. His is a rare case, but M's GI wanted her to see an immunologist for a consult because of such refractory disease,
Given the fact that she had stopped bleeding, stopped seeing mucus, has no night waking and has gained weight, he feels she is in clinical remission.

Yes, she is still going 7-8 times a day, still all liquid or mush and still on Entocort which I think is the main driver of the other improvements so I am not as sure as he is about this clinical remission but I am playing along nicely.
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I really am just so confused by your GI! He jumps from really severe disease and really, REALLY severe, refractory inflammation one minute to clinical remission and "this is functional" every other! I know O doesn't want an ostomy and i do think it's great that he is leaving no stone unturned before going to an ostomy. But this seems a little extreme. Clinical remission when she had a hat full of blood? That doesn't sound like clinical remission! I do understand other markers improved - CRP and hemoglobin etc. But I would argue O is very far away from clinical remission. Not meant as a criticism - I guess I'm just confused.

To me it seems very apparent that she has really severe and stubborn inflammation! I would have said that she seemed to have improved somewhat due to the Entocort and Humira, which would explain her CRP being normal and improvement of several other lab results (H&H etc), if the FCP hadn't come back so high and would have been cautiously optimistic it was just a blip. Actually, I'm still hoping it's just a blip or an infection and NOT a sign of worsening inflammation.

But I do think scopes make sense - to test for CMV and just to see where her disease is present and how bad, given the huge fluctuations in her FCP. It makes sense to see if she has it first before throwing another med at her.

O is an incredible trooper and you're an incredible advocate for her. I'm hoping that she will start feeling a whole lot better SOON.
 
CMV test posted Friday a.m. Negative.

We haven't heard from GI yet. O wrote him an email telling him she took her Humira yesterday and that she would like to do a colonoscopy for a definitive answer on the CMV question before taking the drug.

She is same old. Weight stable, very little visible blood, no night waking. Going 7-8 times a day, urgency and all liquid or mush.

Ohhhh the suspense of it all.

Interestingly, her psoriasis is the worst it has ever been. The derm here said she thought it wasn't caused by anti tif therapy but now with O restarting anti tif therapy and it getting worse I am back to being suspect of anti tnf. It is so, so bad. I guess it could be a rebound reaction from stopping steroids. Can't help but wonder if Stelara is our next stop and if that drug will finally fix her psoriasis.
 
Well I guess I angered the Crohn's gods by being too cocky over the severe decrease in blood because it is back. Darn it. Weight also down 2.5 pounds....but I think that could be from a couple of days of light eating. Going to really make sure she eats some big meals and has good snacks today and see what I can do.
 
GI agreeed. Said at this point a colonoscopy is important for numerous reasons. It is scheduled for next Tuesday. They won’t let me in the building. She just needs to get a Corona virus test beforehand and it is a new two day prep. Ick!
2 days before normal diet, drink 48 ounces with 6 capfuls if miralax by 12. Take 2 Ducolax.
Day before clears repeat above.
Fun times!
 
Yeah. But if a rough day. She literally said,”well I hope after Tuesday they are able to figure this out and “this” stops happening”.
I asked her what options she thought the doc might have for her. She said,”IDK, switch meds again...but that means back in hospital or steroids”

Yes, I did bring up surgery but she is 20 and invincible.
 
Poor kiddo - well, I'm glad you can at least be with her for the prep. That's the hard part. My daughter is older (23) and has now had to do several hospitalizations and procedures herself, including scopes. She has no issues with scopes by herself (and I'm 100% sure O will be fine) but does still prefer that I'm there if she's hospitalized, since she's so complex.
 
Yeah, O will actually be alone for prep because T has a softball tourney. But she has prepped by herself before. This will be the first scopes totally alone but really what do I do? I sit there and help with boredom before while waiting to go in. I help get her to the bathroom fast before and after. The only thing I amorally needed for is the discussion with the scoping doc right after as she has trouble with anesthesia and can never really fully concentrate on the GI because cardio is in there with her. I am hoping scoping doc will call me but worst case we will just here from GI what they found.
 
Scoping doc’s office called today. He said to let me in. Said all other kids get a parent to come and they don’t have a protocol for calling and he knows ya from last scope and from when O was inpatient so he has a soft spot for us.

So yay! We like this guy and he isn’t shy about sharing his opinion.So I should have a nice update for y’all on Tuesday;)
 
Hey guys! The good news is we got some answers. The bad news is we also got more questions.

Colonoscopy went well. The TI and a lot of the colon look a lot better. The last 35 cm's still look really bad. Rectum and sigmoid colon. Scoping doc sent our GI pics and they talked. Our GI called while O was in recovery. We have to have some hard conversations about how much more medical therapy we want to throw at this....benefit vs risk. He said it is possibly time we admit this is refractory disease and consider surgery. He referred to it as regional surgery now rather than total proctocolectomy.

He said we still have to wait for the biopsies and CMV results to come back. He will research medical options and speak with surgeon.

By the time we got home he had spoken with surgeon and is setting up an expedited consult for us.

So the issue is her rectum is severely diseased. A resection will only work with a healthy functioning rectum. So as far as I can tell it seems we are looking at removing the sigmoid and not reconnecting right away but doing a colostomy. We will then wait for a while to see if the diversion helps the rectum heal. If so, then we attempt a reconnect (they work in very few cases). If that doesn't work revert back to colostomy. If rectum doesn't heal, remove it and consider the colostomy permanent.

Removing the sigmoid and connecting the descending colon to a diseased rectum isn't a viable option. For starters the rectum is diseased but even if there were some small part that wasn't and we could remove the diseased rectal portion and connect to healthy rectum, colonic Crohn's loves to attack anastomosis sites.

Who knows. Maybe surgeon will surprise me.

GI can research meds but the way I see it Humira, Entyvio, SCD and Entocort got quite a few areas healed up. It would be a risk to switch meds. We risk losing control over those sites while healing the 35 cm problem area or worse losing those sites in addition to the current problem area and also not necessarily being able to go back to two meds that are working.

We could try to limp along like this until the newer JAK inhibitors or IL 23 drugs come out but it has been 4.5 years of this. I think she deserves to feel better. Plus no guarantees any of the will work. Plus we want to control the narrative. She is in a good place if surgery is needed. If we limp along some more we risk another set back like last summer where surgery was a huge risk due to her health status.

He has tried to get her into trials but either we can't take a risk of her getting placebo or no one will touch her.

He put her back on rectal foam to get some relief. Not a long term solution as it just treats the top layer and Crohn's goes all the way through.

My question for both GI and surgeon is should we try to taper Entocort to see if that has an effect on the currently clear areas before we make any surgery decisions.

So next step is information gathering. Meet with surgeon then meet with GI and come up with a plan.

She is down 4 pounds. 6 after prep but I don't count those two. It was 4 before prepping started. Hoping to get those pounds back on her. GI said they won't even consider surgery under 120 pounds for her so just has to put on two pounds.

That's it for now. Will update you as the info rolls in.
 
Wow, that's a lot to take in but it is definitely good that you have answers. O does deserve a break. Ditto on the question - how is she handling all of this?
 
O is an odd bird. When we talked about the surgery she basically said,”Oh o.k. can I go back on foam also and let’s have ice cream for dinner I will go back on SCD tomorrow”.

When we got home she was very matter of factly referring to surgery saying things to her sisters like,”when I have surgery” etc.

But when I explained the possibility of a colostomy she said, “ I am NOT getting a bag! My body my choice”.

Similar thing happened years ago with hip surgery. Surgeon explained surgery and said she basically had to give up running. I thought for sure she would cry her eyes out. She was cheerful all the way home and referred to surgery and said,”oh yeah, I am NOT quitting running”. She had the surgery and did end up quitting running.
Maybe she just needs time. Needs it to be her idea. Needs to hear it from a doc. She is much less likely to be stubborn with them although they all say she is a very determined young lady.

Also these docs see these situations all the time and speak very matter of factly about life with an ostomy. When you are in these meetings it normalizes things and you think “oh yeah, sure, I will just poop in a bag. No sweat”.

So we will see. Surgeon could surprise us also and say ostomy isn’t necessary. GI could surprise us with a drug option.

I enjoyed my non SCD days Sunday, Monday and Tuesday. Back on today.
 
I'm sorry to hear the news. Questions I would be thinking about are 1) if it's worth trying something like stelara and/ or a bit of een to try and help maybe instead of the humira 2) what are the stats around later successful reconnection 3) is successful reconnection more likely if they go higher up? I've had a stoma temporarily, I know for some they are great and improve quality of life but there are a lot of drawbacks too. Not least being she's young and stomas are really not sexy. I suppose I am trying to say nicely that a temporary stoma is unpleasant but doable, a permanent stoma for a young person is a big ask and if there was a way to avoid it I'd want to find it.
Against that of course is that planned surgery is much better than emergency, so if exploring other meds options then they really need to watch her crp etc.
Maybe worth asking the docs if anything on the horizon meds wise, anything in trial that they could get on compassionate use or that they're hearing good things about and due shortly.
I hope the info gathering goes well
 
Thanks Delta! Always helpful to hear from the voice of experience!

We have tried EEN with O and it worked beautifully on everything except her rectum. This was way back when she was 12 so maybe it would be different now but according to her old GI and this one, EEN has a terrible success rate with the rectum. Not zero success just not great.

One thing her GI had cautioned us on With regard to trying different meds to get the rectum to heal is that what we find that finally works for the rectum may cause the other areas that we finally got back under control to flare. The surgeon explained the same thing to us. Said that you rarely find a med that works equally as well for the small bowel AND the colon when dealing with severe disease. O has actually never had a clear scope of the TI so I am beyond thrilled that we finally got that healthy. Back in the summer the surgeon was saying we needed a good TI for the end ileostomy but then we ended up not going to surgery And now it looks like colostomy rather than ileostomy.

I am guessing that their answers would be the same about waiting for the IL23 drugs or the JAK inhibitors. Do we take a chance and lose meds that are halfway working? She has already had polyps so another year or so if inflammation increases those risks also
The other caveat the GI mentioned last year when discussing surgery is that while we try everything under the sun she could flare massively and then the surgery is emergent and riskier. Better to control things.

From everything I have heard and read the success of healing the rectum with the diversion AND having a successful reconnect is very low. Actually most adult docs I have followed just take the rectum when it is as diseased as hers. BUT she is at a pediatric hospital and I think they try to save the rectum at all costs. So we would be looking at 2 surgeries minimum. The sigmoidectomy and stoma then down the road reconnect or proctectomy.

Great question about if they cut further up. I will ask. Keep em coming!
I also thought about what if there is even a small healthy but if rectum. Could we remove the diseased part and just do the reconnect now? Then if it doesn’t work resort you stoma?

You are so right about the psychological aspect of this decision! She has never even been in a date. She just keeps worrying about the fact that boys will think she is gross.I get it but honestly if a boy thinks that then you don’t want him! I am guessing the whole taking care of it etc is messing with her also. But she has no kind of life right now. The best thing that happened to her was shelter in place so now she doesn’t feel like she is missing anything.

I guess at some point I should hop over to the adult surgery sub forum as there is a wealth of info on surgeries over there. I am just not ready to face it yet and oddly whenever I post in adult forum no one answers. Maybe my questions are just too bizarre😂

Thanks for hanging out here with us parents. It really helps us to have the voice of experience. I hate that you have to have had the experience but at least you are doing something positive with it. Most of us parents don’t have this disease and can only imagine how to help so when we hear from experience it helps us tremendously.

Surgical “info only” appointment is 7/1. That is the surgeons next day in clinic. So that was pretty expedited. I am glad as she is supposed to go back to school beginning of August.
 
Sending big, big hugs. I agree she may just need time to fully process thinks. Seeing a psychologist in the GI dept. might help her come to terms with it and to process it. She does deserve to really thrive and not just to keep surviving and for that, surgery may be the best option. Still hard to hear and come to terms with though.

She is a real trooper and incredibly brave. But even the toughest kids need help when faced with huge life changing decisions. I can understand all her concerns especially given her age. Poor kiddo.

But very glad to hear her TI and the rest of her colon look healthy. That's great news!! Sending big hugs to both of you.
 
I meant to add, if there is anything she wants to ask (or you on her behalf) about stomas then happy to answer.

Can’t claim total altruism for watching the parent threads - I was a breastfeeding mama when Crohn’s attacked, three weeks in hospital open surgery and two stone lighter put paid to that. Then watched my beautiful baby go slowly from average weight thriving and healthy to pale, not growing, not learning to talk, constant diarrhoea, skin so sore with nappy rash it bled. 2 years of doc saying it’s toddler diarrhoea what’s your problem and me saying Crohn’s nearly killed me so what do you think!. Thank God looks like it turned out to be gluten intolerance and he’s doing much better on gluten free diet. So that’s the back story but I like to keep an eye on developments for kids as I don’t trust this wretched disease, also like to be helpful if I can think of anything as it’s hard enough dealing with this as an adult.

Anyway. Feel free to throw any stoma questions my way.
 
Kim, all I can do is send hugs and good wishes. I really am so sorry that O and you are facing such tough decisions. She's been so great with all of this, for so long, I wish an easier recovery had come for her. :(

Thinking of you and praying for the best, I wish I had more to offer...
 
Oh man--this new info is a lot to take in. I hope the surgical consult goes well--I'll be thinking of you all over the next weeks.
 
Hey gang! Thanks for the PM's. I tried to respond to everyone but if I missed you I apologize.

Just wanted to send you all a quick update.

The foam seems to really help. O had some really bad days last week. One in particular that wore her down to the point where she was actually looking forward to the surgery consult. But then it appeared the foam kicked in and she had three good days. So good that she thought if this is what life could be like post surgery sign me up. But today she is back to her old tricks. Not as bad as last summer though so that is good.

Had infusion today which also means labs so I will let you know how those return.

O is wondering if we get the foam to keep giving her those good days can she just stay on foam long term. Not really sure if her GI will consider this. maybe if the newer drugs are just a few months away but indefinitely? Probably not.

Surgery consult is next Wednesday.
 
Path report back and the good news is that all the areas that looked visually good all had no significant abnormality. The areas that looked bad were bad. But this just means that if she has to go to surgery it won't be worse than what we already know.

Labs are good. CRP is down to 4! Most other labs are all somewhere in the normal range whether a little high or low or whatever. They didn't run CBC by accident and we haven't gotten fecal cal back yet.
 
Calpro back. 977.

Foam isn't working as great as it was anymore. No bleeding so that's good but some days still has frequency and many days urgency. Not pure liquid anymore but still far from normal.

Talk to you all on Wednesday/Thursday.
 
Sending big hugs - since her rectum and sigmoid colon were a big mess, a high FCP doesn’t surprise me, unfortunately. Poor kiddo.
We will all be thinking of you and O - I know it will be a difficult appointment :(. But she is one tough kid and she deserves to have her life back.
 
Sending hugs - hope today went well. Take your time to process everything - sending big hugs. We have been thinking about you and O and hoping and praying that this appointment was helpful.
 
Hey y'all! Can I just say that you totally rock! We felt the love today! I am feeling very emotional (I know! The tin man actually has a heart!) but really want to let you know that you are my tribe! My IRL friends are great and all but they can't possibly understand the way you all do and I would never want them to have to. Heck, I hate that you all have to but I am so glad you are all here for me!

So yeah. Had the appointment and there were no surprises. Surgeon said:

- he referred to her as the famous O because he and GI have been talking about her a lot...O rather likes being famous.
- she has pretty much maxed out drug therapies
- he said if this was a small bowel issue it would be much easier (don't you just love the way these surgeons throw that crap around? pretty sure if you were the parent of a child facing small bowel surgery you wouldn't say it was easy) but I digress...I get it. A straight forward resection vs "this".
- it is good we got ileum and a lot of colon under control but we are using a lot of drugs and surgery might allow us to pull back a bit i.e.less disease to control so will do a better job.

- he would remove all of the sigmoid and most of the rectum. She would have a colostomy. Hopefully the rectum will heal. We would take a look "down the road" (6 months to a year) and watch and if rectum heals then try to reconnect.

- his concern is that she has had pan colitis in the past and he is not so sure just removing the sigmoid is good enough. He said when he goes in he may see that the rest of colon needs to be removed in which case he will remove it and give her an ileostomy. He actually wonders if this isn't the better way to go anyway. He said there is no significant benefit to leaving any colon in. Said whether he reconnects the ileum to the rectum or the transverse colon to the rectum, life after reconnect is pretty much the same. Will start with diarrhea 12 times a day but eventually will land at 4 times a day. O said, "that's not enough to make me want to do it" and he added it would be without urgency. The rectum could hold it. It would just be liquid when she went. He actually also thinks the ileum reconnect is better because the colon has always had more active disease than the ileum so ileum is "healthier" and less risk to reconnect.

- of course there are no guarantees that the rectum will heal or that the reconnect will go well. So potentially we are looking at 3 surgeries. Colectomy or partial colectomy, the take down and then the proctectomy and new stoma.

- he said for some reason young girls tend to be the ones who have their rectums heal after this surgery. No idea why, just his experience.

- he said he could do the surgery very quickly after she decides. Expect 5 days in hospital. He said she could go back to school right away.

O was obviously not happy but pretty much expected this. We talked about second opinions and the fact that this guy is not a dedicated colorectal surgeon and maybe going to a major adult center with surgeons that do hundreds of these has some merit. However, adult hospitals mean I can't stay with her (thanks Covid) and with all the ostomy training she wants me there. Adult hospitals are not as "friendly" and warm and fuzzy. She knows this hospital, her GI is there and would have access to surgeon and team etc. And they can do it fast. So no second opinion. It is here or nowhere.

O has also been lucky enough to connect with an amazing young lady who had UC and had same surgery. They texted a lot today. O seems pretty chipper and ready to deal. They will be talking tomorrow.

Of course we still have to speak with GI and get his input. But given the surgeon said they have spoken a lot and she is maxed out on meds, I am not sure he will have anything much different to say.

O had rough day today. Went 12 times, one accident and started bleeding again. Even with the foam.

I have a few questions for the GI:

- should we taper Entocort now to see if we lose the rest of the colon because if so, then just take it all. Or stay on it to keep the ileum happy and taper later when we have a better shot at a successful taper

- remove entire colon or just sigmoid?

- now or wait for break in December?

I think this covers it. If I think of anything I will add it. If you think of anything fire away. Any questions I should add?
 
Wow, this has been a long road for O, and you.... I don't have much to offer except my support. O is very lucky to have such an amazing mother who advocates for her. You are an amazing person. Big hugs. Thanks for keeping us posted.
 
Hugs to both of you. I'm glad that O has connected with someone who has gone through this--that's so helpful. Wishing you both strength as you all think through all of this.
 
I can only offer you hugs and good wishes as well! I'm so sorry that after all this time and effort, it's come to surgery. :( But, O's lucky to have you supporting her all the way! And, glad she has connected with someone as well.

Sending lots of hope and prayers that surgery will run smoothly and she'll come out of it with the best possible outcome. Give her our love!!
 
I have read quite a few stories of kids that have ended up having surgery and the overwhelming sentiment was that they were so grateful to have control of their lives again. I hope that it goes very well for O and I can't even imagine the heights she will reach without disease weighing her down!
 
Sounds like they are pretty confident about the surgery being a good option. I suppose if it was me I'd want to know what the prospects for successful resection are for the different options. If low I might try and roll the dice again with swapping humira for stelara and just hoping against hope. If one option makes resection more likely that would sway me a fair bit. Stomas definitely give you your life back if you are normally constantly in the bathroom and you can pretty much do whatever you did before (work, travel, have babies) but it is nice to know it's not for ever. Wishing you both all the best with it xxx
 
Lots of hugs and prayers your way
A tough decision for her to make
Wishing you all the best
And hope the Gi /surgeon can give her all the good options

🤗
 
Lots of hugs - O is a trooper. I’m not surprised - we knew her situation going into this appt. but it’s a lot to take in and she is truly resilient and I’m so proud to hear that she is talking to others to help her deal with the surgery. She has really grown-up!
I agree - an adult hospital would be a much less friendly place for her to learn about her ostomy, and having family support can make a huge difference.

My question would be her going back to school 1) right after major surgery (we were once told for every day in the hospital to expect that many weeks till you recover - 5 days inpatient means roughly 5 weeks of recovery) and 2) with so much COVID around while she is recovering - you don’t want her getting sick while she’s recovering.

Did the surgeon say how many incisions she will have and how big they’ll be?

O is incredibly determined and she is lucky to have a mom like you who knows so much about IBD! I hope this surgery gives her her life back. Sending hugs and healing thoughts.
 
Yes, he said they would do it laparoscopically. Three holes. One oft hem will be where the stoma is so no scar really. One of them would be pretty big...like her hip surgery scar and the third would be pretty small.

I almost fell off my chair when he said going back to school was no problem...he looked at me and said, "oh yes". The only thing he said she would have to wait on would be swimming....ya think? I think I will head back to school with her for at least the first week of school. If she gets the surgery when I want her to then that would be the third week of recovery.

Today she is sayings doesn't want the surgery. I had a feeling there would be some back and forth with her moods.

We have a call with GI tomorrow. I think he is anxious to discuss everything and get us moving along and maybe on the surgical schedule.
 
Just check in and saw all of this. That O has been famous for years, tell that Doc we all said so!

The surgery you are talking about that includes the colon is the one that my husband's niece had. She has never looked back. And hasnt had another hospital stay related to the GI since then(she has damage to joints from steroids which were the only med that would quell the beast at all which has caused hospital stays for hip replacement etc)

She has had a bit of rectum left but has so far chosen not to have the reconnection. I dont have her insight as to why but I do know that this surgery has given her freedom she did not have before. In fact, she just had a wedding a year ago.

It's such a tough decision to make, my prayers and hugs to you all!
 
Hers was planned similar to O's if I remember correctly. She would have stints in the hospital then go awhile where it all looked bad but she was functioning and saw no reason to tip the apple cart. But finally the GI told her that there were no choices left. I think it still took some time before she opted for the surgery and she almost waited too long. In actuality she probably did wait too long but she had phenomenal tenacious care and I think that made the difference!
 
O had a call with the GI. She hasn't come around to saying yes to the surgery yet. I am sure this is natural. It has only been a few days. GI says she is medically stable so we have some time. I guess surgery before she went back to school was a little ambitious. So she is slowing us all waaaaay down.

GI says her WBC is too low and it is pretty consistently low. He said we have to start thinking about decreasing the number of meds she is on or the dosages.

The new plan is to try the Cipro/Flagyl combination again for two weeks to see if that helps her. It didn't help her last year but that is when she got really sick so maybe since she is in better shape this year it will make a difference. He said it is a safe med to add to everything else she is on.

He also said the foam could need more time to work.

He would like to give Humira another two cycles and if things don't improve we will start decreasing meds by dropping the Humira. Next step will be decreasing dose of Entyvio down to 300 mg but still keep it at the 4 week interval.

In the meanwhile, she will keep thinking about the surgery and speak to one of his patients who had the same concerns that she does and see if that doesn't help her wrap her head around the idea.
 
Her reaction to the surgery is pretty normal. She needs time to process it all. Although surgery was discussed last year, it's different when you are there. Hang in there mamma, I know it's a difficult time. Hugs.
 
O had her telehealth yesterday.

GI tried to explain the need for surgery again. Said they removed two colons this month and after looking at them they really should have removed them sooner. She wasn’t biting. It’s her senior year. She is a t.a. And a research assistant. She has already changed cohorts once when she missed that summer semester. She really doesn’t want to miss school. It’s a shame to because if he had scoped her sooner we could have given her time to think about it, have the surgery and still get to school. Hindsight.

He is still concerned about her WBC’s and said he needs to reduce something so next Entyvio infusion is going to be 300mgs.

Things got a little better but starting Wednesday frequency went up, urgency was through the roof and by Thursday we were seeing blood again.

Her next Humira shot is due Monday so we are all thinking maybe the Humira is doing something and maybe her improvement wasn’t the antibiotics. We will pull levels shot after nextHe is switching her antibiotics to Xifaxan and doxycycline.

She asked if she could add rice to her diet. He said ok and we met with dietician to discuss. She suggested we look at CDED as it is a more liberal diet (in phase 3) and SCD doesn’t seem to be of much benefit. It was very interesting to O BUT she is not sure she wants to go back to a severely restricted diet for 6-12 weeks, especially if she will be getting surgery in December. BUT the case was made that CDED “could” heal her to the point she won’t need surgery. She is half mulling it over. I guarantee she doesn’t do it.


that’s it for now! Really hoping the drop in Entyvio doesn’t make things worse

Oh and Telehealth visits monthly, labs monthly and staying on Entocort 9mg daily and proctofoam.
 
I know O disease is much worse that Sarah. But Sarah was very luck to avoid emergency
Surgery.

If O is going to have a chance a successful reconnection down the track she wants planned surgery.

Planned surgery less school missed. Shorter recovery time.

Can she plan surgery for the end of semester?

Sarah didn't really agreed to surgery she just went along with as she was out of options.

She had a real fear of ending up with a bag.
 
Hugs
It’s difficult with Adults
Since they have their own opinions and tune out parents /docs most of the time
Hope she agrees to cded and it works this time
 
So tough for her to decide and equally tough for you to wait for her decision. There's so much going on in her life and she's fought this for so long, I'm sure she's thinking she's sacrificed enough! :( I'm really hoping she can hang in there till December and still avoid an emergency! Lots of hugs!
 
Just thinking about the WBC count, I was wondering if it was worth asking if any of the drugs more likely to be the main culprit. I suspect humira but don't know. It's just that if it is the H, is it worth swapping that out for Stelara which is the big one she hasn't tried yet? If she's thinking December surgery that might be a long enough window to see if helping but then there's also an argument to save it for maintaining remission post surgery. The other thing was, when I was on steroids the budenoside stopped working pretty quickly, the third course I think, and we are talking crp of 90 despite max dose. So it might not really doing much any more but still contributing to overall drug load?
Such a miserable situation. I think I might be tempted to focus on long term best chance of keeping as much of everything intestine wise as possible and thinking what does that mean now in terms of looking at an ostomy and maximising chances of reversal. It's tricky. Also wondered if her hopes for school might be impacted any way by coronavirus in which case is sooner rather than later worth considering for surgery. Hard decision, especially at her age. Wishing you both well.
 
Thanks Delta....yeah we discussed which drug is the likely culprit and the GI really feels it is the Entyvio. I thought Humira as all the WBC nonsense started after we added it but he doesn't feel it is the Humira because it is a large molecule drug. Plus Humira seems to have made the most impact so he would rather keep that.

I think Budesonide does "something" just not enough. When she tapered down to MWF dosing she flared back up. At this point she has been on it since October and I know in the prescribing literature they say not to take it past 12 weeks but plenty of GI's use it longer term. I would like to get her off it. While she is on it, it is hard to assess if any of the other drugs are really doing anything.

Her TI and small bowel looked good so either the Humor or Entyvio are working there. It is the distal colon that is the problem area and the GI really feels strongly that it is not likely to rescue those areas and if we drop one of the other biologics to try it, we potentially lose the control of the small bowel and a drug that is working. But that was the original plan with surgery. To remove the problem area and then we just have to treat the small bowel and Stelara becomes an option. But now that the small bowel looks good we can just do surgery and keep drugs as is.

The surgeon explained the reversal success has nothing to do with how much colon we are able to salvage. It is really the health of the rectum that will determine success. That and whether or not the disease comes back to that last third of the colon. If we keep the ascending and traverse and reconnect, the transverse doesn't stay the transverse....it becomes the sigmoid and susceptible to the disease that is there now. Could happen right away, two years from now or maybe never but many end up with a third surgery some time down the road to make the ostomy permanent. BUT keeping a decent amount of colon does help with diarrhea after the reconnect as the colon will absorb more water as opposed to if we take down the ileum. So it would be a more comfortable lifestyle after the reconnect....maybe.

I was REALLY hoping her school would go online and open up the opportunity to do the surgery sooner but no such luck. They are having in person classes. Football is happening and the president of the university announced there will be tailgating....so mad at how cavalier they are being.

She seems pretty good these days as far as frequency goes but we are on a trip so I annoy paying as close attention. I think the Humira shot on Sunday (we gave it a day earlier to get her back on schedule) may have helped there. She still looks very, very thin.

Infusion on Tuesday so will get more labs and cal pro so more data!
 
Aren't COVID cases skyrocketing in the south? I don't know specifically her school, but at my daughter's and my niece's schools, they are having 2 classes come in the fall (freshmen and sophomores) while juniors and seniors do online school. They'll use only single rooms and bathrooms will have to be cleaned more often. All big lecture classes are online or have been divided into many small lecture classes.

In the spring, it switches - juniors and seniors are on-campus. But both semesters, any student who wants to do wholly online/remote classes, will be allowed to - especially those who are immunosuppressed or have other health issues. My daughter's specialists all thought going to school is too risky (she asked since she is on two biologics and MTX), so my kiddo is stuck doing it online, though it is her senior year and she REALLY wanted to go.

I'm honestly kind of shocked they're allowing things like tailgating!!

My worry is, of course, that she will flare on a lower dose of Entyvio and she has to understand that dong an emergency surgery vs. a planned surgery means less chance of reconnection. Has the GI or surgeon spelled that out for her? That if she flares, she could get stuck at an adult hospital, Mom probably won't be allowed in and she may need emergency surgery? That she is more likely to get stuck with a bag that way?

Another thought - what did she decided about EEN? If she can do 80% formula, 20% food, maybe it'll help without it being too hard for her? A g-tube surgery is pretty minor - that is something you could do before school. Even if she doesn't do EEN, supplemental nutrition will help her gain weight or at least prevent further weight loss. And all that will help if she has surgery in December - you don't want her going into the OR malnourished and skin and bones...
 
Aren’t covid cases skyrocketing everywhere except ny metro area?
I don’t want to disparage a whole section of the country but where my daughter goes to school they are not so concerned about covid. Now football is another story. THAT is religion!

Yes, GI made those points, I made those points and her health coach made those points. But I think O is giving M a run for her money on stubbornness.

I am just trying to butt out these days because if I speak we fight.
 
Poor kiddo (and poor mom!). I know that feeling - it's like talking to a brick wall. I wish they were taking COVID more seriously around school - a packed football stadium with kids yelling and cheering sounds pretty scary 😬. i hope they're at least mandating masks.

Sending big hugs. It's tough to watch and wait and hope that she will make it till Dec. Fingers and toes crossed for her and for you.

When does she leave for school?
 
Thanks Maya....it is definitely trying my patience. She leaves next Tuesday. Then she comes home for Thanksgiving and stays home after that...They will do the last week of lectures online and then take finals virtually. Even if classes went virtual she has announced that she wants to go back and do them virtually from her apartment down there. It might be best. I think she needs a little alone time.
 
Even if classes went virtual she has announced that she wants to go back and do them virtually from her apartment down there. It might be best. I think she needs a little alone time.
Click to expand...
I can understand that - she probably wants to be able to see her roommates/friends even if classes are online. Of course, I'd feel better if she was at home with you, but, well, young adults want to be adults.

So is she planning on the surgery in December or is she saying no to surgery at all? Sorry if that's been asked and answered - somehow I missed it.

Sometimes space and some time to think can work wonders...maybe she needs to get there on her own. That's how my famously stubborn daughter finally gave in. My daughter would suggest to bribe her with a puppy ;) - she says that pets make making hard decisions easier🤦‍♀️.
 
LOL! That M always suggesting a pet. She cracks me up.

Right now she is saying no to surgery but that IF she considers it at all she would do it in December.

So here is a funny or sort of sad story depending on how you look at it. O's friend met us at T's tournament and stayed with us for a few days. We were out to dinner and her friend was trying to guess where O's grandparents live. O said, "I'll give you a hint. Where do I go all the time?" and her friend said, "the bathroom?". We all died laughing but if that doesn't sum up the state of affairs, I don't know what does.

She actually doesn't mind this friend getting an up close and personal look at her daily life because said friend suffers from her own GI issues so not so unusual. I was kind of hoping it would stress to her how not normal her life has become. Oh well.
 
Oh geez...that made me laugh out loud. O is truly something!! I'm glad she has a friend she can talk to and be open with. That's great!!

I guess we will have to see how she does on a lower dose of Entyvio...Unfortunately, I think that might be the thing that'll show her she needs the surgery :(.
 
Well a week after her infusion at 300mg and her frequency and urgency went way up. It has been rough the last few days.

For those playing the home version of our game her calpro just posted and her level 8 days after the sample was taken is 1,582. So looks like antibiotics didn’t do much in the way of healing. Not sure we can even say Humira is doing anything.

Not sure where we go from here. She got a Humira levels test on Monday so maybe wait for those results to see if we could adjust Humira.

She is thinking next step is EEN and now that her sister is planning to do NG tube she says she will try it also. But she leaves Saturday so not sure when that can happen. Ofcourse I would fly her home to get trained but you know her all important college life probably doesn’t have room in the schedule for such mundane matters.
 
I am sorry for disappearing for so long. The CA fires and other health issues have kept us preoccupied.

To catch you all up, O had another infusion at the end of August and all those labs returned great! Even her cal pro came down to 179! It did take 12 days to result and GI isn't 100% sure that they stored the sample properly AND she has done this before BUT she reports symptoms have really improved and all labs are very good so he is cautiously optimistic.

He did add a third antibiotic to her treatment based on studies and research that is surfacing. He said we have the E. coli covered and the aerobic bacteria but not the anaerobic bacteria. So he added Cipro for that. But constant Cipro had it's risks so she is now two weeks on and two weeks off with all three antibiotics.

I have been reading a lot about antibiotic therapy for people with Crohn's and it seems to really help a lot of people who fail all the other treatments. It is especially successful in VEO Crohn's kids.

It is still very early to consider this a complete win for O but early returns are encouraging.

She is still low in weight. About 4 pounds under the lowest weight the GI wants to see her at so with his and the RD's approval we are adding rice to her diet.

She turns 21 today and during her last RD Telehealth appointment the conversation was "SCD legal alcoholic beverages"....her birthday just so happens to coincide with her two weeks off antibiotics so even that won't interfere with her little celebration.

She had infusion today so more labs are coming and hopefully they will show that we are another step closer to remission!

I know some of you have sent PM's and I am hoping to get to those in the next few days. Thanks so much for the messages!
 
That is fabulous news! Also thank you for being so detailed about what works and doesn't. I hadn't heard about the antibiotics and VEO disease..very helpful to know.
I hope she has a very happy birthday and I am happy it sounds so...normal!
 
Hey this is great news! So chuffed for you. How nice for her to have a bit of hope for her big birthday.

Don’t know if it is worth asking doc about probiotics on the 2 weeks off antibiotics bit to try and crowd them out a bit? (If it works like that).

I was apprehensive when I saw you had posted after all the maybe surgery, got to reduce drugs stuff so this is just so good to read xxx
 
It is still very early to consider this a complete win for O but early returns are encouraging.

She is still low in weight. About 4 pounds under the lowest weight the GI wants to see her at so with his and the RD's approval we are adding rice to her diet.

She turns 21 today and during her last RD Telehealth appointment the conversation was "SCD legal alcoholic beverages"....her birthday just so happens to coincide with her two weeks off antibiotics so even that won't interfere with her little celebration.
Click to expand...
Happy Birthday O!!! I hope very much this year is easy and boring (in the best way). I hope her IBD will calm down and she can be a normal young adult and enjoy college.

In terms of weight, you have mentioned that O was considering EEN, after T agreed to the NG tube? I guess she decided against it? Do you think the doctor and RD could talk to her about the importance of gaining weight now so she can heal? She could even do overnight feeds like M did and then her suite-mates didn't even all know - just the ones she wanted to tell. in M's case they were very supportive.

And they could talk to her about the risks of alcohol, considering she will be 21 and the possible consequences - SCD legal or not.

Fingers and toes crossed that she starts feeling better soon!! Before the big birthday!
 
Wow, just wow cic ❤️

I have just read a few months back. So much for you both to consider and process and very difficult for you as parent not only emotionally but walking that very fine line between saying nothing and saying too much. 😞

I note the part about the comparisons of surgeries the surgeon made. You are certainly right that surgery, no matter the location, for a parent is confronting but TBH the options for O are truly in a different class and must be in many ways distressing for you both. I do hope with all my heart that O is able to find a suitable long lasting drug alternative but if not that she is able to go into surgery in a planned and controlled method to give her the best possible outcome.

Thinking of you both and sending healing thoughts. ❤️

Onwards and upwards O!
 
Happy Belated Birthday!!

And so great that you're seeing positive results!! Yay!! It's been a long time in coming! I hope all continues to just get better and better!!😁
 
Dusty! Me? Miss a trick? Girl I invented the tricks!

So quick little update.

All of O's blood labs returned pretty normal. They even did nutritional studies and basically things are good.

Her cal pro just returned at 408. So doubled in 4 weeks. This value was taken just 3 days off antibiotics although as of today she has been almost two weeks off antibiotics and she says she still feels pretty good. Frequency is down, no bleeding, no night waking. The only thing is she can't gain weight.

She was hoping to drop the antibiotics completely but I am guessing with this result the GI won't want to take any chances.

In the summer when she denied surgery, the GI told her then she would need a scope in December and yearly after that. I am hoping he remembers that and holds her to it because I would really like to know if this cal pro value is fine or if there is something more sinister going on in there.

Meet with GI Friday so hoping to have more info for y'all.
 
So glad she is doing a bit better - that’s wonderful!! I’m so glad frequency and bleeding are better!

I know O was very against the NG tube but since her sister is doing it, perhaps O will find it less scary. In fact, I bet T could show her how she inserts it on FaceTime!

I would email her GI to remind him about the scopes before the appt. Though maybe don’t copy O on that or she may kill you!
 
LOL! Yeah...I have pretty much been banned from contacting the GI directly. I am only allowed to be on the Telehealth call on mute! I fear she is going to cut me off from even that much! So I could just whisper in her ear and suggest she bring it up. She is really maturing though. Her cal pro results were not back as of this a.m. and she took it upon herself to write to him and ask them to track them down so they had that number for the appointment on Friday. Will wonders ever cease?
 
Happy Birthday O! Trying to get caught up on all our kids I've been MIA for a while. Jack turned 21 in July - Where did the time go??? We had a few people over for a socially distant backyard bar. I told him he absolutely could not go out to the bars. They had a great time sitting around the firepit and probably didn't get as drunk as they would have since you know mom and dad were inside.
At least you get to be on Telehealth even if you're muted. Jack would not let me go to his last appointment, Dad was there for a few minutes but didn't stay to ask questions or even listen and he was only there because he had an appointment directly before Jack.
Hope she gets Calpro numbers and they are fab!
 
Hey y'all. Thanks for all the PM's checking up on us. Still dealing with other health issues which keeps me off the computer but good day today so thought I would hop on.

O's calpro in September went back up to 408. Not a total freak out point but enough for the GI to be cautious at the next appointment and talk a bit about MRE. He doesn't want to do colonoscopy given Covid and is really more concerned that we might be missing some small boel inflammation further up given she still reports that she is doing pretty o.k..

October infusion and all her blood labs were best ever and her calpro was back down to 110.

We are all trying to get a handle on any patterns, like is she on or off antibiotics when she goes high, or is she off Humira cycle etc....but there are just so many parts to her treatment that we can't really come up with anything definitive.

So we are just going with the flow and taking the good and not questioning it.

Interestingly, the SCD forum I am a member of has lots of kids who didn't respond to regular treatments and who starting antibiotic therapy and are all getting a lot better. There are also quite a few almost colectomies there that have been avoided with antibiotics. None of the kids are on the same exact therapy though so I am guessing it just really depends on the exact needs of the individual microbiome.

Her next infusion is 11/18 so here's hoping we get two good cal pro's in a row. If we do I think we might be flirting with the R word and start decreasing some meds.

Going to check on all your kiddo's now. Hope you are all well!
 
Hey y'all. Another long update.

November labs were stellar! Cal pro was down to 56! O NEVER has cal pro that low. She reported low frequency and feeling great. WE were cautiously optimistic and flirting with the R word.

She came home for Thanksgiving and didn't look as good as she reported feeling. Frequency inching up. Thin. I just sat and watched.

Things kept trending down. She stopped eating. I grilled her.

She is on the antibiotic cocktail two weeks and then off two weeks. She takes her abx and budesonide at the same time. So this last cycle when she went off abx, she "forgot" to take the budesonide. Then "forgot" to go back on the abx after the two week off cycle. Which all resulted in her frequency really going up, urgency and fill the toilet bleeding. She confessed to GI and got back on.

A week after getting back on budesonide and antbiotic cocktail she had infusion and her calpro was 2237. She looks awful. Weight is pretty low but she gained two pounds in a week so hopeful there.

Virtual appointment with GI. Basically it looks like this is all her fault. She was doing so well (or was she, she has a history of under reporting).

Lots of emphasis on eating because weight loss starts the inflammatory cascade. She told him she has no appetite and feels bleh during the abx weeks. Of the three she is on, doxycycline is the probable contributor there. Also the most redundant drug. So he said o.k. to drop it and see what happens. She also asked to drop SCD. He said if SCD is causing the weight loss then he will approve that because while it might be helping if it is causing weight loss it is doing more harm than good.

So we are giving it until 12/28. Will pull another cal pro and check weight. If cal pro is still elevated then we will have to escalate therapy. The choice is go back up to 600 mg of Entyvio or move Humira to weekly. He would choose Humira weekly because it is a faster acting drug and we will know by mid January if it is working. Entyvio changes take 12-16 weeks to take effect and she doesn't have that kind of time. Which brings us to the elephant in the room...we reduced her Entyvio to 300mg about 12-16 weeks ago. Is this flare up because of her dropping budesonide for 3 weeks or a result of the Entyvio decrease or some combo of both?

Even if it is her med noncompliance it still stinks. You would think being on two biologics, one at off label dosing and SCD would hold a person. Plus having been on Budesonide for over a year you would think it would take longer than 3 weeks to flare up like this. So are the antibiotics really the silver bullet?

She goes back to school 1/4. It is her last semester of school. I will be putting her on a plane in a flare for the 9th and final semester. It's hard enough saying goodbye to your kid but this just stinks. But she did it!
 
I was planning on posting to check how things were with your daughter and found your post this morning. I would have rather preferred better news though. I do hope things turn around during the holidays while she is home with you. It's amazing that she was doing so well and it really would be difficult to figure it all out with all the different medications. I hope you are doing well. Been thinking of you since you have been quieter on the post front. Let's hope her being home with mmama bear makes a difference. :)
 
Not trying to sound unsympathetic at all, but hopefully this was a learning experience for her. A good friend of mine has a son who is a Type 1 diabetic. He went off to school and got lax on his insulin regimen. Needless to say he was in the hospital for a lengthy stay and ended up having to repeat all of his classes that semester. It was definitely a teaching moment for him and he's never strayed since.

I will always be an advocate of Humira, especially considering all of the misery I went through before being put on it. It takes a few weeks to start seeing effects, but as has been mentioned, not as long as Entyvio or some of the other biologics.

For the weight issue, can she tolerate Ensure as supplemental nutrition? That helped me through some of my roughest patches before I was ever aware I had Crohn's.

Hope she starts feeling better soon.
 
@Mountaineer01 Thanks. Yeah a teaching moment and yes she should be more med compliant but honestly after all this kid has gone through and the plethora of drugs she has to remember and the way they make her feel, I kinda don't blame her.

She has been on Humira since March and Entyvio two+ years at 600 mg and budesonide for 15 months. Then the abx cocktail for the second time since summer. IDK if weekly Humira will make that much of a difference but considering colectomy is her next step, it is worth a try anyway.

The formulas are against SCD, and her GI wants her strict on the diet BUT has talked about maybe adding a couple a day. But all they do is make her less hungry for food so we don't really gain anything with them. We just trade the little bit of solid food she is taking in for liquid.

I think dropping the doxycycline has helped, She ate more today then she has since she got home. Like a ton! Like she is back to her regular eat everything in sight appetite. So hopefully this will fix the weight loss and reversing the weight loss will stop the inflammation cascade and then we can sail along.
 

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