Those labs aren’t what’s generally seen in pouchitis, even when it’s active - and presumably his pouchitis is under reasonable control with the Entyvio. It’s much easier to deal with a problem you’ve already accommodated to (GI in this case), but there’s really not much reason to believe there’s a GI-related cause here, and I agree that the pouchoscopy is unlikely to be informative. I looked up the side effects listed for Entyvio and there’s no suggestion that it could be causing those lab results.

It will likely be necessary to deal with the leukemia/lymphoma concern, but in the meantime it sounds like he’s got a pretty urgent quality of life problem. Have you consulted with a good dietician to help him find a more reasonable set of food options to explore? Is he amenable to some flavor of mental health care that might help him find a way to cope with what’s happening to him?

I’m sorry that you and he are going through this - it’s just awful. He’s lucky that you’re there for him. I hope things get better than they are now.

Hi Scott and thanks for your kind words.

Do you not think the labs could be a slow GI bleed? I kinda think they may be.

He has seen a dietician. She had a few minor tweaks but no significant suggestions. It's problematic that solid hunks of meat (steak!) are slow to move but fruits/veggies slip though without a lot of time to pull nutrients. And the slow moving stuff irritate that spot. If he were a large guy, he'd have a lot of wiggle room. He is tall but TRADITIONALLY has been slim (195#). He has been near 250# for a while but that's shedding rather quickly on his "water diet".

He refuses to see a therapist or psychiatrist. He's on an antidepressant from his PCP but that's on his short-list to ditch, so the short answer on mental health is "no".

BTW, his 1999 surgery showed his large intestines were like ground hamburger. They did a near-emergency resection where he lost the entire large intestines. He has been left with a J-pouch.

We've tried any different options since 2016, including Cipro/Flagyl and other meds; and a 2nd opinion at the Mayo. Still ended up on Entyvio but if that's not cutting it, there are other biologics to try.

Getting him in the mindset to explore a new biologic is a giant hurdle right now. He just doesn't want to keep feeding the medical system when it hasn't improved his QoL enough to enjoy sucking in oxygen. He prays every night to NOT wake up in the morning.

As his wife 25+ years and caregiver, it's difficult to watch him suffer AND difficult to fail in finding a formula that enables him to find purpose for his life so I LOOK FORWARD TO MY WEEKLY THERAPY SESSIONS. I wish he'd open the door but so far, NOPE.

A slow GI bleed could explain the RBC and hemoglobin, and indeed he might have bleeding. Nevertheless, it wouldn’t explain the eosinophils, basophils, and atypical lymphocytes.

I’m glad you’re getting the support that *you* need. Is there anything that he really likes to do (that he might do more of with some encouragement)?

This is my 4th attempt to answer you. I keep getting pulled away & my draft disappears.

He listens to historical audio books & watches geological and flight documentaries/lessons on YouTube, etc. He also has 4 Earth Boxes he planted.

He has significant memory loss from his brain tumor/surgeries/radiation. I would love for him to go to the community classes held at UVA (1/2 mile away) but he doesn’t have the confidence. I wonder if he could “Audit”? It would get him out; interacting with humans.

He doesn’t do any of his old hobbies: outdoorsman thing, equestrian, riding his motorcycles, golf. He’s too tied to the bathroom & has suffered tremendous fatigue since radiation.

You seem to have a good feel for labs. I cannot made heads/tales out of his numbers. One time this is high; the next draw it’s fine but another is low. It’s so strange! I’m trying to assume the BEST; hope these bad labs were a fluke. I do not understand how eosinophils & basophils can be elevated but WBC is fine. Does that make ANY sense to you?

Here are his last #s:

Eosinophils, (HIGH) 1.76 (21.9%)

Basophils, (HIGH) .28 (3.5%)

Atypical Lymphocytes (HIGH) .71 (8.8%)

CRP (HIGH)

==========

RBC (MARGINALLY LOW) 4.57

Hemoglobin (MARGINALLY LOW) 13.8

==========

WBC (NORMAL) 8.04
Lymphcytes  (NORMAL) 1.34 (16.7%)

Monocytes (NORMAL) .14 (1.8%)

In this case the eosinophils (and basophils) are an abnormally high percentage of the WBC count, without the count itself being out of range. The lymphocyte percentage is actually a bit low (normal 20%-40% usually), but perhaps not for that lab. If this is a single lab result it could indeed be a fluke, and should be repeated (if he’ll consent to even that much “feeding the medical system”).

The loss of such a rich set of challenging physical pursuits has to be quite a blow, and could be depressing even without the medical underpinnings. I hope you can find some dietary compromises that interrupt this negative spiral. Even Lomotil, Imodium, and psyllium aren’t likely to help if he isn’t eating.

Hello,

I just wanted to lend some words of encouragement to you.

I was in the same mindset as your husband from a year ago until recently. From my first surgery, having a bag, failed first reconnection, fistula, sepsis, near death, non functioning pouch, etc, I certainly understand what he is going thru.

I lost all interest in everything and many times I also wished I would not wake up the next day.

Thank god he has you, because without my wife's support I would have never made it.

Scott has done a great job analyzing his labs, so I would only add that I do not think his hemoglobin is an issue. As a comparison I had hemoglobin below seven last may and received 3 transfusions. Last November it went below eight and I received 2 iron infusions.  I am currently in the 12’s and my docs are ok with that number.

I suspect he will not feel mentally OK,  until he can feel a little better physically. I know this sucks and I really felt bad for my wife as she was limited in what she could do for me.
Hang in there and don’t give up. Trust the doctors, if you don’t, find ones that you can.

eric

Hey Scott,

I'll push John to get his labs. He moved the Pouchoscopy because he got a cold. It is now rescheduled for July.

I contacted UVA who has a Community Scholars program and they are checking to see if he can audit a class. That would be fantastic. He could continue to learn and also be among humans!

His PCP appointment set for today was moved because the doc doesn't want to see him due to his cold. Kind of funny.

I'm not sure how much more I can push John without causing him to revolt. I was hoping someone in this online community had experienced similar labs; or knew of a GI test that could be run to rule in/out GI being the culprit on his labs; or even someone who had a suggestion on a path to feeling well. We've already seen a dietician. I even tried to get him to eat a scrambled egg this morning. He agreed, gave it to our son, and went to bed. (I don't think out of depression. He has a very hard time getting up in the mornings. He's panhypo from the brain tumor and it takes a long time for his meds to waken him in the morning. He had his PCP appt scheduled today and got up trying to make that appt. I think he's just worn out from his body + the cold).

I cannot blame John for not wanting to continue feeding the medical system. As a small business owner, access to medical insurance comes at a grand cost for crappy coverage. It would be one thing if it were expensive and offered him a path to feeling well. But, as a caregiver who has NOT been able to find that rainbow for him, I have very little to justify the cost/effort. Let's face it: nobody wants to be ill all the time, especially if it's costing them a lot of money and time to see doctors and they're not feeling any better.

It's been nearly 6 full years. I'm having a hard time justifying costs and keeping him engaged in the search for better health. I absolutely DO NOT see him spending the time or money to feel terrible all the way to his death bed. He's too practical for that.

Financial assistance is held for patients who have no means of meeting the bill. We won't qualify for any relief until our hard-earned retirement is gone. After many years of feeding the medical system, he has lost hope that the docs can improve his QoL. Since he wants me to be able to retire some day, stopping the feedings to the medical system (insurance) makes sense to him. It's a valid position that is hard to poke holes in.

Hi Eric and thank you for your note.

Hearing about your labs gives me some breathing room and I 100% agree that he will not feel better emotionally until he can get to a better place physically.

Unfortunately, I cannot seem to keep his head in that game. It's just too costly! We have sold the home we designed and built as newlyweds. We moved toward his care. He was a very engaged guy and continues to remain sick, regardless of our attempts to change the tide.

He just doesn't want to throw any more time/$$ into something that is giving no return on the investment.

It's heartbreaking and I cannot find a way around his position.

I fully trust his doctors and when we get one that I think is half-cocked, I dump them. I've been at the Patient Advocate game far too long. There truly ARE bad doctors out there and I have gotten pretty adept at sorting out the dead wood.

Please tell me what got you turned around!

Hi again,

my turnaround started when I was able to identify and eliminate the non GI medicine that was wrecking my jpouch function.

I reduced my diet to foods I know would not cause an issue and stopped eating after 6pm (this allows me to get sleep),

the above plus a daily regimen of Imodium has significantly improved my QOL.

May I ask what the non-GI Med was that was causing issues?

How did you narrow down the culprit?

All food is an issue for my husband. Spicy has been out for quite some time but everyday food with any substance hurts as it passes. Liquids don’t hurt but he cannot sustain life on liquid alone - or at least not long-term.

Immodium is a good idea. I wonder if he can slow down the passage of solid food with Immodium, maybe he can better-tolerate solids? Definitely worth exploring.

It was an extended release urinary drug called mybetriq.

i was in agony for months until I stopped all meds and added them back 1 at a time to find the culprit.

I do not do well with extended release meds.  Not even Slowfe which is extended release iron.

i take Imodium 3x daily, breakfast, dinner and bedtime. It slows my transit time from 4 to 7 hours. It allows the stool in the pouch to become less acidic and caustic and therefore less butt burn.  By stopping eating by 6pm, my final BM is at midnight to 1 am and I sleep the night now.

I also take levsin as needed, which is an anti spasmodic.

btw, I lost 35 lbs and only now am I starting to gain it back.

Hey Eric,

This is so interesting. John doesn't take any meds for his GI except the Entyvio infusions. The others are brain tumor related drugs.

I was hoping the Entyvio may be the culprit of his labs but so far I have not been able to convince myself of that, in spite of my digging.

How did you and Scott learn so much about blood draws and their indications? I'm trying my best but I'm starting at square-one. I have a lot of ground to cover and a patient with a complicated medical history.  : )

Also, how did you NOT throw in the towel? What kept you going? I'm having a difficult time convincing John that we will eventually find a path that makes him feel better. He has no confidence in that thought and -- given his history -- there is no evidence to support it. It's frustrating.

Thank you, but Scott is here way longer than me and is very experienced and knowledgeable. I only have 1 year experience as a j poucher.

I did not throw in the towel because the thought of going to a permanent osteomy was so repugnant to me, I could not go there. Now, there are some folks who have done just that, but they are much more mentally stronger than I will ever be.  My wife totally stood by my side thru my darkest hours and let me cry and cry.  She always believes no matter what there is a path forward.

after the first pouchoscopy and I was told  my pouch was mechanically sound, I made it my mission to get control over it.

I feel for John because I have some complications as well, and it can really throw me off some days.

I would tell John to f the medical system. That’s why we pay all this insurance.

if he can focus on incremental improvements, even just a little at a time, I would think that it would go a long way toward refocusing his mental outlook in the right direction.

I understand that there is this other thing to deal with, but if there is one thing my wife taught me; is not to Iive in the terrifying future. You told us that you have good doctors so I assume they can sort out the other stuff and properly advise and treat.

Some thoughts on the labs. There are other possibilities besides cancer for eosinophilia. Drug reaction, infection and adrenal insufficiency come to mind. You can develop a drug reaction to biologics at any time. Infection comes to mind with all the watery stool. Typically I would think adrenal insufficiency is a long shot but you mentioned he’s panhypopit so not sure how his HPA axis is functioning. Adrenal insufficiency can make one feel very crappy. If the eosinophilia and elevated CRP only occur after infusions than I would suspect the drug. I hope you find some answers and peace.

Hi Pouch2021 & thanks for your thoughts.

We will remain under the wing of John’s neurosurgeon forever & he stays tied to John’s care. We questioned both the idea of his panhypopit throwing off the numbers (that was actually my very first hope!) and an allergy to the Entyvio.

It was the infusion doc who pulled the labs with Eo & Baso, 2 labs not drawn on a regular basis for John, so I wondered if the infusions were the culprit. Unfortunately, it was his GI doc who called with the lab concern & he 100% dispelled GI OR ENTYVIO as the culprit right away. He’s a super sharp doc so for him to do that immediately — the neurosurgeon & I agreed he must see something that caused his strong position on ruling out GI & Entyvio.

The neurosurgeon works in connection with his NeuroEndocrinologist & said it was possible but unlikely he has developed an allergy to his panhypopit HRT. But he said maybe there was an additive in one of those meds. The endocrinologist said it would be extremely difficult to narrow that down & he didn’t think that was the cause. I questioned whether his panhypopit CONDITION would make the labs askew but endocrinology shot that down 3x!

: )

The neurosurgeon recommended we see a hematologist to get to the bottom of all this. I think that’s my plan. A hematologist will do a deep dive & is probably my best resource.

Im gonna chat with John today about setting an appointment. He is, unfortunately, reluctant to receiving care because he isn’t experiencing a very good ROI. I need to find a way to get his buy-in. But I concur with the neurosurgeon, a hematologist is our best avenue to dispelling our questions & getting answers based on factual labs.

We moved toward John’s care so we have a very good university medical system 1/2 mile from our home. They stay extremely busy so I hope we can get an appointment soon. I did vet the list of hematologists with his neurosurgeon & think I have narrowed the list to the right 1 or 2. Now it’s just a matter of getting on the schedule.

I’ll let you all know how things go!

Hey Scott or anyone familiar with Labs:

John continues to have a general diminished appetite (has lost ~ 25# in a month; not trying; just lack of appetite & liquid is easy on his gut!). He came to me the other day & he has “something” on his back. It’s opposite side (mirror) of a benign tumor he had removed 18 months ago but it could be an enflamed muscle….?

His neurosurgeon, NeuroEndocrinologist & cardiologist all said he should get a hematology consult. I explained we requested one from the GI doc but hadn’t heard from him yet so his cardiologist did the request immediately.

Now the GI doc has finally responded and said we should wait to draw labs because it could be an “isolated” lab finding.

I’ve been thinking about a fluke for weeks & my logic center has decided these are data points based on scientific findings; whatever the cause, there was/is “something” that caused the spike. I’d rather know what it was rather than allow it to linger so I’m tempted to just grab the consult placed by the cardiologist and see what the hematologist comes up with.

Is this what you’d do?

With panhypopit, cardiology, GI & parasites ruled out, can you tell me why he would have an isolated jacked up lab?

An isolated strange lab result always needs to be repeated before assuming that it’s correct. Labs are usually correct, but there are many ways labs can go awry - the specimen can be mishandled or stored improperly, the analyzer can be improperly calibrated, the specimen can be mixed up with another patient’s, the data can get garbled, etc. If the disturbing lab findings really only occurred once without other supporting findings then that trivial step (repeating the labs) is the next step, IMO. It’s okay (and perhaps wise) to make a hematology appointment in the meantime, but be prepared to cancel it if the labs don’t replicate.

Excellent advice, Scott. Thanks for explaining how a lab can be an isolated finding due to human handling procedures.

The GI doc had not gotten back to us & the Cardiologist referred us over. I'm gonna set an appt (which will undoubtedly be months out!) and ask John to do another draw next Thursday. That will be 7 days post-return to normal hydrocortisone.

I got John's buy-in by saying the hematologist was a new avenue & they may uncover just the right thing that will turn things around and allow him to feel better. It was a golden ticket.

I hope a repeat lab doesn't derail him. My plan is to just slip it onto our schedule without a big fuss. He may do it begrudgingly and forget about it (literally). That's my A-plan. Then, once we get the results, we can decide about cancel/keep hematology.

Where did you get your medical knowledge? I've been knee-deep for years and I'm still learning how to crawl. You learned a lot, somehow. Doctor? Med school? Nurse? Living with Crohn's for so long? I'm curious and very, very impressed!

Regards,

Kelly

Hi Group,

So John is prepping for his Pouchoscopy which is this afternoon.

He just popped in and explained that this is the LAST scope he's willing to do.

From his perspective, I understand that all the GI work we have done has not gotten him to a place where he can enjoy life.

But from the doctor's perspective, I wonder if it will make it difficult for his GI doc to continue his care (including Entyvio treatments) without some ability to understand the condition of his bowels.

Do any of you know if John can continue his biologics without periodic scopes or is his decision to do no more scopes going to change that?

Thanks,

Kelly

I would think that your GI would want to scope periodically (whether that’s yearly or 2x/year). My GI told me he does not want to treat with one hand tied behind his back (his position was based on who was going to do my first scope, GI or surgeon). Pouchitis needs to be seen on examination, so I suspect your GI wants to keep close to the situation.

I understand your husbands position, but the treatment plan will go forward based on the findings today.  Since I am the eternal optimist,  John will soon start to feel better, and doing another scope, say in a years time, might not be such an issue for him.

Stay Strong!

There’s no need to push back on this at this point. Doctors and J-pouchers vary enormously on the frequency of routine pouchoscopy, and many don’t do it unless there’s a real clinical question that needs answering. Many folks feel strongly about screening for rectal cuff cancer or dysplasia, but rectal cuff cancer is rare.

Hi Group,

Well, I thought I'd give you an update. John's Pouchoscopy went very well. The pouch looks terrific! That's great and not-so-great.

Glad the Entyvio is working. He's willing to continue infusions.

It doesn't answer why he's having so many GI issues. The doc recommended he switch to FOBMAP and take ginger. We've tried ginger and it didn't help. TBH, FOBMAP isn't much of a change except for eliminating garlic, onion, tomatoes but John isn't interested. He said he gets so little enjoyment from life -- and gets real enjoyment from my salads (which include all 3) -- that he's not willing to make the change. In our family, fresh salads are kinda a "thing" -- chitchat and chopping and homemade dressing -- I think it is more LOVE than taste for our family. His appetite has diminished so much that I'm not going to fight him on it.

The GI doc was less than pleased to hear it was his last scope. He calmly said he was going to contact John's PCP. I think he thinks John is depressed -- and I do, too -- but this decision is driven from a different place. He's not trying to die. He's trying to limit his medical intervention to things that are necessary and give him a ROI. Scoping a good-to-go pouch doesn't make his cut.

His PCP contacted me and asked what was going on. I explained John's position and the was kind. I think he understands.

They had to give John a stress dose of hydrocortisone during the Pouchoscopy so, again, his rerun for the labs has been move out to Monday (20th).

John's file was reviewed by Hematology and they approved him for an appointment on July 7th. I'm hoping the rerun of his labs next week show a marked improvement and the Hematology consult will be unnecessary.

Interestingly, the Hematology scheduler said he was placed with this specific doc because she specializes in leukemia. She also said he will have a full set of labs completed and asked if he had ever had a bone biopsy "BEFORE". I wonder if that means they intend to do one? It was a tad unnerving. We also got a MyChart notification for the appointment and a separate one for labs. With the largest file in the history of UVA, I can attest that we've never had a scheduled blood draw. It makes me wonder if the "lab" is the biopsy. I would normally consider that a scheduled procedure outside of the initial consult but who knows - each department at UVA Medical Center dances to the beat of their own drum!

I really want him sedated if they decide on a bone biopsy. He has just been through so much and he's too fragile. Enduring any more pain just seems ridiculous to me. Does anyone know if I can request sedation?

I was hoping the J-pouch would be a mess -- it would have been an easy answer. We weren't that lucky. Ruling in/out cancer is not for the faint of heart.

Has anyone here had a similar journey?

Any words to share?

Stay well,

Kelly

Hi Kelly,

First I wanted to say how sorry I am for your situation. I think chronic illness is as hard if not harder on the caregiver. I'm wondering what contribution brain radiation (I'm assuming WBRT for cancer?) versus GI illness has on your husband's poor quality of life? If it is mainly driven by GI issues, has he considered going back to an ostomy? A J pouch is not the only option here though it often feels like it is.  He sounds understandably depressed so making such a decision may be tough. The lab abnormality is just that, an abnormal value without context or confirmation.  It is not diagnostic and after all of this he may find that cancer is not in play but that he still feels poorly. Addressing the Gi issues will become paramount. To answer your question, a bone marrow biopsy is uncomfortable but nothing compared to the surgeries and procedures we've all gone through. And yes, you could ask for a benzo for relaxation beforehand.

I hope you finds some answers and a path forward.

Hi Pouch!

I’m hoping Hematology can figure something out & get him feeling better! That’s MY hope. If the winds shift and deliver bad news — ugh — I’m not sure he’s willing to weather that storm!

There is nothing more that he can really do about the GI unless he goes to a bag. I don’t think it’s that terrible of an option but I’m not the one wearing it. When he wore one for several months while the pouch healed, he had a leak in bed. I took it with a grain of salt but everyone I ask if he has thought any more about a bag, he mentions that episode. It was in 1999 so it obviously scarred him. I would have already gotten the bag but he just cannot.

He had SRS for a benign but invasive brain tumor (papillary Craniopharyngioma). Even with radiation, there is often Rè growth but I don’t think he will be that unlucky. I think they killed the tumor and tendrils. Unfortunately, his had invaded his hypothalamus so the tumor-surgery-radiation caused some permanent damage.

After J-pouch surgery in 1999, he was okay with GI for many years.
In 2016, he had brain surgery, radiation, and a GI twist. In addition, he went into a Cluster Headache cycle when he awakened from surgery that took 6 years to get under control.

Between GI, Clusters, Memory Loss, Fatigue, and heart stents (placed a couple of months ago), he’s kinda done fighting. I’m hoping hematology has an easy treatment that might make him feel a whole lot better - he deserves it!!! I don’t have the heart to watch him endure anything more. Plus, he may just say “NO WAY” so I’ll definitely ask them to give him something to relax him.

Hey Group,

So, all along, the GI doc has been adamant that John's issues are not related to GI/pouch/Entyvio.

We saw the Hematologist on July 8th (liked her very much!) and she's running her battery of tests. One that she insisted on, that has never been run, is a 3-day stool for parasites & ova.

John is convinced it will lead t a dead-end.

Have any of you had this lab run?

How long does it take to get results?

Anyone have their lab come back positive?

I, too, find it hard to believe that there are parasites in his GI. I double-checked with his GI doc and he said they just tested AGAIN (as they do every time they do a scope & take a biopsy) -- and John has never had a positive parasite culture.

Is it possible that he has had parasites they have missed all along? That is absolutely unnerving to me, considering the # of times he's been cut open and had hands in his bowels.

But, it's unnerving that the 3-day sample has never been requested, too!

On the last lab, some of his numbers corrected and others did not:

High eosinophils, chloride, glucose, AST.

Low bun.

Strongyloides = negative.

Interestingly, they have released everything except the blood smear. I called and the nurse said the doc is reviewing it personally, and will discuss the findings at our next appt on 27th. I kind of got worried but then she said....."and we're hoping to have the stool results by then". That kind of made the blood smear results seem normal in my mind but the nurse may just not know what the smear says so maybe it's wishful thinking.

Any insight, group?

I don’t think anything will show from a parasite/ova test.

Way back when(30+ years) my issue was only IBS, my first GI doc performed this test just to rule it out as the issue.  When I switched to another GI a few years later, new doc performed test again just to rule it out.

I have never had that test again. It’s a shot in the dark kind of test.

Yep. Kinda what I thought.
Got a MyChart message from the hematologist & she thinks his labs have corrected enough to push to a 6-month recall. 3-day stool isn’t back yet but said if it shows ++ for parasites, go to GI.

I asked her why his hemoglobin & RBC would constantly bump along the bottom (this time low, next just above). And if we correct this issue, might he feel better? If so, how do we fix it.

I know they don’t want to hide any real issues but —DANG — he’s giving up on medicine. And TBH, it wouldn’t be the 1st time a doctor treated a symptom rather than the root cause.

Have any of you had chronically low RBC & hemoglobin? What did you do about it?

Hi Kelly,

All abnormal labs are not created equal. I wouldn’t worry about the Cl, BUN or AST unless the AST is persistently and significantly elevated. Sounds like the eos have improved to the point that is reassuring. I agree the O&P is less likely to be illuminating but it’s part of the work up. Most of us had O&Ps  done in the course of IBD as GIs have to consider infection as a cause of IBD symptoms. The hematologist checked because of the eosinophilia. Helminthic (worms) infections are a classic cause. Many in this forum have anemia (low hemoglobin) from either chronic blood loss or chronic inflammation; both can cause anemia and it is usually easy to differentiate with a few follow up labs. Whether anemia is symptomatic or not depends on the severity and chronicity. We compensate for chronic, mild anemia pretty well. Acute or significant anemia can make you feel like crap. It sounds like cancer is now less of a concern so hopefully the GI issues can start to get sorted out.