Undiagnosed Club Support Group

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

I still plan to ask for a repeat GES with a longer test time of 4-6 hours since that's the gold standard. I have an appointment with my newest GI on July 20th (not going back to the one who gave me the 2 hour test as I can't stand her PA or the office she's at - it's too busy and they don't call back).

I haven't heard of a six hour test - since at 4 hours, less than 10% of the meal is supposed to be left in the stomach (for a person with normal gastric emptying) - but a 4 hour test is definitely standard. It is possible that you have mildly delayed gastric emptying and the 2 hour test missed it. But it's also possible your symptoms are caused by something else entirely.

We were told if it was severely delayed, then a 2 hour test would have caught it. In fact, our children's hospital will even send kids home at 2 hours if their emptying is very severely delayed, since it's not going to change and there is no point in keeping them for the four hours.

I would not get stuck on one diagnosis (for example Gastroparesis), no matter how much you think your symptoms match. The GI tract is complicated and many different things can cause GI symptoms.

Good luck with the adrenal CT!
 
I haven't heard of a six hour test - since at 4 hours, less than 10% of the meal is supposed to be left in the stomach (for a person with normal gastric emptying) - but a 4 hour test is definitely standard. It is possible that you have mildly delayed gastric emptying and the 2 hour test missed it. But it's also possible your symptoms are caused by something else entirely.

We were told if it was severely delayed, then a 2 hour test would have caught it. In fact, our children's hospital will even send kids home at 2 hours if their emptying is very severely delayed, since it's not going to change and there is no point in keeping them for the four hours.

I would not get stuck on one diagnosis (for example Gastroparesis), no matter how much you think your symptoms match. The GI tract is complicated and many different things can cause GI symptoms.

Good luck with the adrenal CT!
Yes, good luck
 
MissLeopard good luck with the CT and the cotisol tests, I hope these give you some answers!
It sounds like it's worth trying to get the 4 hour test done, as Maya said though anything longer isn't really needed. Mine was a 2.5 hour test in the end, it was a different meal though (mostly mashed potato) but it showed a "significant" delay and empying time was calculated at double the expected time, so I guess the time you're there will depend on the testing centres protocol and things like that.

Quick little update from me, I haven't spoken to my dietician yet, I decided to stop those sweets and see how I got on before talking to her. Then today being Monday she will be super busy on the ward today so I will leave it until tomorrow. Things have settled somewhat, I'm still having more bowel movements than I was and there is still a small amount of diarrhoea each day, but it's so much better than it was. I did have to take Zofran on Thursday and Friday for my nausea so obviously that affected things over the weekend so today will be a bit of a test for my bowels, but already this morning things have been quieter so far than usual for this time of day! I'm really hoping it was just the sweets and it's not feed intolerance or something. I'm still on 50ml an hour but planning to go up to 55ml an hour tomorrow.
 
MissLeopard good luck with the CT and the cotisol tests, I hope these give you some answers!
It sounds like it's worth trying to get the 4 hour test done, as Maya said though anything longer isn't really needed. Mine was a 2.5 hour test in the end, it was a different meal though (mostly mashed potato) but it showed a "significant" delay and empying time was calculated at double the expected time, so I guess the time you're there will depend on the testing centres protocol and things like that.

Thanks. I wish that I went to a facility that was specialized in GES tests because they only gave me eggs with nothing else. It was only 1 egg so it moved rather quickly and really, to me, wasn't a good indicator. If I had more in my stomach, it probably would have been much more slow. Anyway, I still plan to discuss it with the new GI next week on the 20th and, if she thinks it's necessary, I plan to have it redone. Right now, my main priority is figuring out my hormonal issues because those have plagued me for YEARS and I am worried that if it's Cushing's, it could cause damage because it makes blood pressure elevated and can cause metabolic syndrome. I don't have diabetes now and I certainly don't want it in the future.
 
Ahh I see, that doesn't sound like very much food to get an accurate result, you're right. Definitely bring it up with the new GI, it's worth a discussion at the very least. I'm glad eating earlier in the evenings is helping you though 😊 I know personally I can't eat after 6pm at all or I am up in the night feeling like I'm going to puke!

I hope the CT scan sheds some light on your adrenal glands and they can get to the bottom of the hormonal issues. It is entirely possible they could be causing the GI syptoms. I know if I'm off my contraceptive pill I have distinct parts of my cycle where various gastro symptoms get worse.
 
Ahh I see, that doesn't sound like very much food to get an accurate result, you're right. Definitely bring it up with the new GI, it's worth a discussion at the very least. I'm glad eating earlier in the evenings is helping you though 😊 I know personally I can't eat after 6pm at all or I am up in the night feeling like I'm going to puke!

I hope the CT scan sheds some light on your adrenal glands and they can get to the bottom of the hormonal issues. It is entirely possible they could be causing the GI syptoms. I know if I'm off my contraceptive pill I have distinct parts of my cycle where various gastro symptoms get worse.

I received a CD copy of the CT scan and noticed that there was some abnormality in the adrenal area - they look enlarged and I noticed there was a growth near my kidneys. I won't get the radiology report until tomorrow but I'm pretty sure my doctor will be calling me. I'm still awaiting the results of the cortisol tests that I had to redo as they were turned in Monday afternoon and it takes them 5-7 business days for turnaround. They are sent off to a larger lab in Florida and then they are posted on the lab website in their portal. I probably won't get them until the middle of next week - probably Tue-Thu somewhere. My doctor usually calls before I'm able to see them, though. :)
 
PRAISE GOD! The tests came back normal! No evidence of tumor or nodules on adrenal glands or elevated cortisol! I am so relieved! I don't know what it was that I saw on the CT (I'll bring the CD when go for my appointment) but I have never been so glad to be proven wrong! No surgery and my symptoms can be managed medically - most likely with Glucophage (aka Metformin)! I am over the moon right now! :)

I am scheduled tentatively for a follow-up on Sept 28th but the nurse will try to get me in sooner if they have a cancellation. I plan to have my OB/Gyn do a pelvic ultrasound on Aug 8th when I see him again just to make sure there is nothing funny going on like another ovarian cyst (that area was not visible on the CT) or a thickened endometrial lining again. :)
 
MissLeopard I'm so relieved for you that the tests have come back normal that must be a huge relief! I hope everything goes well with the OB/GYN and the new GI doctor too 😊
 
Is there a way to post a picture on here? I kind of want to show you guys the discoloration I've had on my stomach for six months and see what you think. It has to be a sign of something! I just don't know what....
 
My stomach was a mess this weekend. Stress played a major factor because my grandfather was presumed to be in the active dying process - this was what the hospice nurse told my family. However, my uncles were adamant something was wrong and they were correct - my grandfather had been given too much sedating medication (one narcotic and one benzo) within 2 hours of each other. He was gasping for air several times. Fortunately, over the course of the weekend, the medication metabolized out of his system and he became more responsive. I cannot bear being around my mom's family for long, though. There was so much arguing and heated tempers on Saturday which drained me emotionally. I came to work this morning but it's so hard to be here without thinking about what went on. I'm doing my best, though. Please keep my family - especially my grandfather - in your prayers.
 
Is there a way to post a picture on here? I kind of want to show you guys the discoloration I've had on my stomach for six months and see what you think. It has to be a sign of something! I just don't know what....

What I do is I upload my photo to a site that can host photos (I personally use photobucket). Then I get the direct link for my picture, and then on the forum if you see that little icon where it looks like a mountain with a sun or moon over it just above where you type on the forum - click that icon and paste your link for your photo into the little window that pops up. That's how I get photos onto the forum. Hopefully I'm describing this well enough.
 
I requested my medical records for the gastric emptying study and was curious about something. I've heard of slow gastric emptying, but I was wondering if I could possibly have gastric dumping? The percentages of the tracer leaving the stomach seems very high to me, but I'm no radiologist. This is what it said:

1. 29% of ingested radiotracer had exited the stomach at 60 min (normal is 10-70%)
2. 84% of ingested radiotracer had exited the stomach at 120 min (normal is >40%)


The second finding was the one that surprised me - is that much food supposed to leave the stomach that quickly? It was almost triple the amount as the hour prior. I read a small portion about dumping syndrome and it has some of the same symptoms of gastroparesis, including:

  • nausea
  • vomiting
  • abdominal pain and cramping
  • diarrhea
  • feeling uncomfortably full or bloated after a meal
  • sweating
  • weakness
  • dizziness

https://www.niddk.nih.gov/health-information/digestive-diseases/dumping-syndrome

Does anyone have dumping syndrome? How was it diagnosed?
 
Continuing from my post above, I just got a call from my endocrinologist's office. Unless a cancellation occurs, I won't be able to see her until the end of September because she gets booked up quickly. Anyway, I asked by portal if there was anything I could do in the meantime because my cycle is all out of whack and I'm worried that it could lead to a 2nd D&C because the lining is growing too dense again. She put me on Metformin (YAY, no hormones!!!) to control the ovarian cysts and make my cycles more regular. I've been on it before but only a month because I lost my health insurance shortly afterward. She asked me to titrate from 500mg 1 week, adding 1 more tablet each consecutive week until I get to the maximum dose of 1500mg.

I'm hoping this will help me lose weight, too, which I so desperately need (I just weighed myself this morning and was still at 188, which is where I've been for the past month). I'm only 5'3" so my BMI is over 30, which is not healthy. My OB/Gyn doctor noted that my BP was elevated in his office so he asked me to record my BP regularly and we would look at the numbers when I see him again on August 8th. This could, potentially, mean that I need to be on an anti-hypertensive (a low dose) unless the Metformin helps that, too.
 
Hiya all! I've been absent lately, and I'm sorry I'm not going to be able to catch up in this post, and it's going to be all me me me...

I've been off tree nuts, and I thought that things were going so much better...but then the D started randomly again, and I've still been having trouble swallowing. So at my last visit to the GI, it was decided that I'm having yet another upper scope, with dilation again (did I ever mention that I had another upper GI w/barium swallow? that showed some retained barium after a first swallow, but that would go down w/subsequent swallows, and some narrowing). They are still leaning towards eosinophilic esophogitis, even though the first PPI trial seemed to have shown initial improvement. I'm still on the PPI, but they are guessing they will find eosinophils this time again (they did cut the PPI dose down, though, from twice a day to just mornings). I'm a bit bummed out that eliminating tree nuts wasn't my "cure" but I'm still hoping that there is an answer to be found!
 
Thanks, Cat! I'm going to post the link and we'll see if it works. I promise these pictures aren't gross or anything, so you don't have to be afraid to click on the link! But they are of my stomach, so it's a little weird for me to just be sending it to strangers haha. But at this point, we're all basically friends, right?! Anyway, I've had this discoloration on my stomach for six months. It never goes away. It's like it's become permanent. I know the pictures aren't great quality, but keep in mind that it's much more obvious in person. My phone clearly doesn't take the best pictures. I'm just curious if anyone has had anything like it or know what it could be from.

<iframe width="480" height="360" src="http://s350.photobucket.com/user/gfaris1/embed/slideshow/"></iframe>

Cat, how have you been? Are you still on LDN?

MissLeopard, I'm so sorry! That sounds rough. :( I know that my symptoms get much worse when I'm stressed, so try to take care of yourself too. I'll be thinking of you.
 
Sorry, maybe I didn't get the directions for posting a photo right. Doesn't look like it worked as I can't click that link and can't see a picture. I always post my photos from my computer, not from my phone, so I can't say if it's the same process on a mobile device or not. Sorry! :(
 
I requested my medical records for the gastric emptying study and was curious about something. I've heard of slow gastric emptying, but I was wondering if I could possibly have gastric dumping? The percentages of the tracer leaving the stomach seems very high to me, but I'm no radiologist. This is what it said:

1. 29% of ingested radiotracer had exited the stomach at 60 min (normal is 10-70%)
2. 84% of ingested radiotracer had exited the stomach at 120 min (normal is >40%)

The second finding was the one that surprised me - is that much food supposed to leave the stomach that quickly? It was almost triple the amount as the hour prior.

MissLeopard83, that certainly does not sound like Gastroparesis!! That is pretty fast emptying! If I'm reading the results right, that means at 2 hours, you had only 16% left in your stomach.

For comparison, my daughter had roughly 40% left in her stomach at 4 hours - she has Gastroparesis.

I think asking about dumping syndrome is a good idea - that does seem very fast to me. I don't know how it's diagnosed (I would assume a gastric emptying scan would tell you, but maybe I'm wrong), but I'd ask your GI.
 
Akgirl I'm betting you use a lot of hot water bottles/heat packs on your stomach right? If you do it's from them being too hot. I had the exact same thing on my back before my endometriosis surgery because I always had a hot water bottle there, I literally scorched the skin! Now I use an electric heat pad and no marking and I spend a good 4+ hours a day on it.

MissLeopard yes with those emptying times it's definitely not gastroparesis, I'm not sure on the classification for dumping but it's diagnosed by gastric emptying study so definitely talk to the GI about it.
I wish I had my results as percentages and things, all they told me was that my emptying time was double what it should have been.
 
Sarah, that's interesting! I do use a heating pad on my stomach sometimes. How long did it take for yours to go away? Thanks for your response!!

MissLeopard, I didn't see your new posts when I last posted for some reason. Don't you hate when it takes forever to get in to see a doctor? It just means wasting more time and feeling like crap for longer. You'd think they'd try to open up their schedules a bit. I really hope you get some answers soon!
 
Hey akgirl,

I had something similar on my back. I believe it was called, no kidding, Toasted Skin Syndrome. It was from a heating pad but apparently people get it from laptops that are too warm as well. It went away after a couple months. I showed my doctor and he said keep using the heating pad. I took a break from it and now I just use it every couple days and not as long as before. I still use the same heat level as before and It didn't come back. :)
 
Hey akgirl,

I was scared at first that I had a strange disease that caused blotches on my skin. I was pretty freaked out, like OMG is my liver failing from meds or what? I sure was relieved to find out it's only cosmetic. Mine was near my kidneys so I was all worried about that too. Some of the stuff we worry about hey? Such is life. I hope that's all you have is just a few little "toasted marks."
 
Right?! With how crazy our bodies are, you automatically get worried when something new shows up! Hopefully I just have a toasty tummy. And hopefully it goes away soon, because it's not exactly the most attractive thing....
 
Hi MissLeopard,

That is so weird that the opposite condition could cause the same kinds of symptoms. I sure would have never guessed that one! I think you might just be smarter than some of these doctors. I have a funny feeling you may be onto something, it totally makes sense.
I'm hoping you get answers as soon as possible.

Best regards,

Chris
 
MissLeopard83, that certainly does not sound like Gastroparesis!! That is pretty fast emptying! If I'm reading the results right, that means at 2 hours, you had only 16% left in your stomach.

For comparison, my daughter had roughly 40% left in her stomach at 4 hours - she has Gastroparesis.

I think asking about dumping syndrome is a good idea - that does seem very fast to me. I don't know how it's diagnosed (I would assume a gastric emptying scan would tell you, but maybe I'm wrong), but I'd ask your GI.

Thank you! I see the GI on Thursday afternoon, so I will print out the report and let her see it. Maybe this will give me extra ammo to get a repeat GES that lasts longer. I can't believe I had that much go out of my stomach in such a short time!
 
Hi MissLeopard,

I'm praying for the best. As soon as you know the problem, then at least there are hopefully ways to help alleviate it. I really think you are onto something here.


Best wishes for Thursday and beyond,

Chris
 
Hi MissLeopard,

That is so weird that the opposite condition could cause the same kinds of symptoms. I sure would have never guessed that one! I think you might just be smarter than some of these doctors. I have a funny feeling you may be onto something, it totally makes sense.
I'm hoping you get answers as soon as possible.

Best regards,

Chris

Right?!? I couldn't believe when I saw the percentages. I kept thinking, "I don't think it's supposed to be that high of an emptying rate." I will definitely present it to my newest GI and get her opinion on it. From what I read, it could be a sign of idiopathic dumping syndrome.
 
Today, I have my appointment with my newest GI doctor at 3:30pm. I wasn't feeling well this morning at all - very bad nausea - due to the Metformin my endocrinologist put me on 2 days ago for PCOS. I've read that your body has to get used to it, but it was rough this morning, so I called out sick so I could rest. I seem to be OK if I lay down, but I think I may need to take a Zofran just to get to my appointment. This sucks. :(

ETA: I spoke to a pharmacist on chat and he said that it would take a few weeks for the nausea to go away, so I'm going to take it slow with the titrate instructions. The doctor's office said to titrate up each week if possible, but I'm going to wait until most/all the side effects dissipate before increasing the dose.
 
Last edited:
Because I have a lot to report, I'm going to start a new thread in the Undiagnosed Club for all my stuff so I don't take over this thread. :)
 
My new GI doctor is AWESOME! The best of the 3 I've seen! First off, her office is not crowded with people so you don't feel like a number like I did at the other appointment in May with the 2nd one. She looks right at me when I talk and she asked a number of questions as well as ask me a few times, "Is there anything else you think I should know?" I love when doctors ask that because, to me, it means that they really want to know what you want solved.

She is ordering blood work - before even mentioning I had a gluten problem, she thought I may have a gluten allergy (which I have thought for years) and wants to test for Immunoglobulin A (IgA) deficiency because she thinks I may be getting glutened from an unidentified source, which would not be unheard of. As careful as I try to be, I still get symptoms - though not nearly as bad. She also asked if I've ever gotten hives - which I have - and thinks I may have other food allergies so she wants to send me to an allergist for skin prick testing. I mentioned that corn doesn't sit well with me but it's difficult to avoid because it's used in many gluten-free items. She told me to avoid it for a month since my f/u appointment is in a month and we'll see if that makes me feel better.

Since I knew I had to get some new groceries with no corn, I stopped at Target and got two bags of food with no corn that I can make healthy meals out of for at least a few days. I've been on a weight loss diet since May and my weight loss has plateaued, I need to change up my eating and make sure I'm eating as healthy as possible. I just started Metformin 3 days ago for PCOS so that should help, too, once the nausea goes away.

I am so happy that I finally found a good GI - her last words were, "Call or send us a message thru the portal if you have any questions." That's something the other 2 did not say. The first one's nurse was easy to get in touch with, but she was totally abrupt and unhelpful. The second took days to weeks to get back to me when I had a question. Since I have a tendency to ask questions, it's good to know that they are there for me when I need it. This doctor also has a better schedule, too, so I don't have to wait months to get in to see her.

I'm being started on Xifaxan for my IBS-M. I asked about the GES and she said it can be normal for some people. I think the allergy testing is a good start, though. :)
 
Right on! I just love good doctors and nurses. The good ones need to get paid twice as much for all the work they do. I'm hoping good things for you MissLeopard! :)

Yes, they do. Her office staff was really kind and her nurse was very nice, too. I'm waiting for prior authorization to go thru for the Xifaxan (I have an HMO) but I'm hoping it will help. My stomach has been really unsettled the last few days due to the Metformin, but it wasn't nearly as bad this morning, so I'm hoping that means the side effects are disappearing because my body is getting used to it. :)
 
Oh! I don't think I've mentioned...my two youngest kiddos have had several episodes of vomiting/severe nausea throughout the past months, so dd is seeing GI, and my ds is just starting w/his GP (his is less severe/less often). They have both had studies for H.Pilori (both negative) and are both are currently on omeprazole, too, as a trial, and dd has an Rx for Zofran. Dd's follow up is next month. I'll try to remember to keep up on posting their updates, too.
 
I woke up this morning feeling much better than the last few days - no nausea! It seems that my body might be getting used to the lowest dose of Metformin - 500mg. I was told to go up on the dose to 1000mg after 1 week, which will be Monday, if I'm no longer experiencing side effects. It seems, if it continues, that I may be able to titrate up. I'm already noticing that it has appetite-suppressant qualities, which is a good thing because I have been trying to lose weight since May and have plateaued. :)
 
Missleopard83
Food allergy wise
Please see a board certified allergist first
Keep a food diary of what you eat daily and anything on the label that says May contains or made in the same facility as xyz
Noted when hives appear in terms of time from when you ate

This can guide the allergist on what testing would be needed for what foods
Food allergy tests are only correct 50% of the time
They have a high false postive
Most allergist will do blood and skin tests
It is not recommended to tests wide panels of food anymore
The reason you will get a lot of false positives and avoid food for no reason


Ds tests IgE postive to
Corn wheat barley oats peanuts soy tree nuts and rice

But his only true IgE foods allergies are to Tree nuts and fish

Quinoa works well for going gluten free and corn free
As well many brands just takes some digging


Glad you like your GI
 
I woke up this morning feeling much better than the last few days - no nausea! It seems that my body might be getting used to the lowest dose of Metformin - 500mg. I was told to go up on the dose to 1000mg after 1 week, which will be Monday, if I'm no longer experiencing side effects. It seems, if it continues, that I may be able to titrate up. I'm already noticing that it has appetite-suppressant qualities, which is a good thing because I have been trying to lose weight since May and have plateaued. :)
Glad you are feeling better.
 
MissLeopard I am SO glad things are looking up for you! I hope this new GI doctor is the way forward for you, it sounds like she is at least interested in treating you as a person not a patient ID number!

I have tentative good news regarding feed tolerance! I'm not counting on it yet but the last few days have been much more settled and I think it's because I've stopped taking my erythromycin. I've just done it as an experiment for a few days and I plan to call my GI doctor Monday to speak to her about it as obviously we have to weigh up to risks vs benefits if I were to come off it permanently. I haven't noticed any difference to my appetite being off it and I don't feel like there is a huge difference in my gastric emptying however I do seem to have a bit more nausea that when I was taking it so I'm guessing it's affecting my emptying more than I realise. I will try going back on it for a few days too to see whether the diarrhoea starts back up again too incase it's just coincidental timing and actually it's just my body finally getting used to jejunal feeds!
 
Ugh Sarah, I'm so sorry! Isn't it the worst when you start getting your hopes up just a tiny bit, and then everything comes crashing down again? It's so unfair! Sometimes life just doesn't make any sense! Hopefully your D will stop soon. It seems like you've been having it for a long time now. I can't even imagine how miserable that must be.
 
sarahfh - did you ever try switching formulas? I think you were on semi-elemental...have you talked about an elemental formula yet?

Erythromycin helped my daughter with gastric emptying. She did not take it before feeds though - just before meals. It worked for about a year for us and then we moved on to Domperidone. Some people have to take Erythromycin "breaks" because it stops working - so for example, three weeks on and one week off.

It caused extra reflux for my daughter, so she only took it once a day (with her biggest meal) and took a lower dose than her GI had initially suggested. That really helped. For the other meals, we used Bethanechol.

For us, Domperidone has been best. My daughter had an arrhythmia because of Refeeding Syndrome, so they were very hesitant to try it. I know you had issues with it, but I wonder if you could do a lower dose and be monitored carefully? My daughter has an echo and an EKG every 6 months and is followed by a cardiologist. She now takes the adult dose with no issues.

Erythromycin can cause similar heart issues (Long QT syndrome), so you should be monitored on that too.
 
Akgirl it's been almost a month now and I am so sick of it. The only way to keep it under control is imodium or Zofran. It's just making me not even want to put my feed on.

Maya my dietician is on holiday, I spoke to one of them last week and she mentioned trying elemental feed but it's the decision of my dietician who obviously isn't there so I have to wait another week for her to get back from holiday then we can discuss it. It's just so frustrating now and like I said it's making me not want to run my feeds.
I've been on the erythromycin since March, I had a short break when the first NJ was tried but I've been on it solidly. I do think it's having less effect so maybe the break will help. I tried domperidone previously and had irregular rhythms from it, because of the POTS my GP wasn't comfortable with me staying on it with the tachycardia from the POTS then the irregular rhythm on top. I am wondering about trying a smaller dose, it would mean getting the liquid as the tablets don't seem to come in anything smaller than 250mg but I can't imagine that's much of a problem.

I've actually got fed up today and taken my feed off early and I think I'm just going to leave it off for the next 24 hours to let things calm down a little. I've had a lot more pain with it too and I'm just miserable. I'm seeing my GP this afternoon so I will mention it incase there is something else going on.

I feel like I'm just never going to get "there" you know?
 
I haven't posted in this thread much lately but I need support. I think in the past we've talked a bit about grief causing flares. You guys might remember that last year, my grandpa died, and then we had to put my grandma into a memory care facility, and then I flared shortly after that. Well, this year I'm going through a new sort of grief - my dog is dying. I just found out a few days ago that my dog has terminal metastatic cancer (it started in the spleen and it's already spread to at least one other organ, and the vet thinks it's spread to her brain as well as she started having seizures on Saturday). It's been horrible. I never had a dog growing up, Lily is my first and only dog that I've ever had. And she's SUCH a good dog. She is smart and pretty and wonderful. And since I don't have kids, my pets are my family. My dog and my cat mean more to me than most people do. And now Lily is dying and I'm having a really hard time with that. I have barely eaten for the past week and I've had some stomach pain and nausea. I have zero appetite and have to basically force myself to eat. I have lost about 4 lbs in a week.

And there's nothing I can do. I know we're going to have to put her down soon, if (when) she shows any signs of pain or suffering. It's been horrible and it's going to continue to be horrible. I don't even know what the point is, I don't have a question for you guys. I just needed to get that all out. Cmack already knows a lot of this already but I don't think the rest of you do. I guess I just need support. My pets are like my #1 support, they're always there for me regardless, and now Lily is going to be gone soon and my heart is breaking for her. It's so hard. She's only 8, and up until she suddenly became very ill last week Tuesday, she was fine. (Apparently the tumor had been growing "silently" for a bit, but then on Tuesday it started bleeding and that's when she suddenly started acting very ill.) So it's been a very rough week for me. Sorry for venting, I just need ... I don't know what I need. I need my dog not to die but she is going to die. I need to somehow be okay and I can't right now.
 
Oh Cat I am so sorry you're having to go through this with Lily, sending so much love and a lot of gentle hugs to you both [emoji173]
Loosing a pet is one of the hardest things I've had to go through, they are always more than just an animal for me too. Spend as much time with her as you can, give her as many treats and love as she wants, take lots of photos, smell her fur and commit it to memory. You will know when it's time, she will let you know.
Try and take care of yourself too even if it's just something small like painting your nails or sitting down to do some crochet or sewing while your mind processes everything that's happening. If you're not feeling up to eating much maybe try some smoothies or shakes? It might also help with any early flare up signs. How has the pred taper been going? It might be best to pause the taper for now, if you know a flare up is likely you don't want to encourage it.
Thinking of you.
 
Maya my dietician is on holiday, I spoke to one of them last week and she mentioned trying elemental feed but it's the decision of my dietician who obviously isn't there so I have to wait another week for her to get back from holiday then we can discuss it. It's just so frustrating now and like I said it's making me not want to run my feeds.
I've been on the erythromycin since March, I had a short break when the first NJ was tried but I've been on it solidly. I do think it's having less effect so maybe the break will help. I tried domperidone previously and had irregular rhythms from it, because of the POTS my GP wasn't comfortable with me staying on it with the tachycardia from the POTS then the irregular rhythm on top. I am wondering about trying a smaller dose, it would mean getting the liquid as the tablets don't seem to come in anything smaller than 250mg but I can't imagine that's much of a problem.

sarahfh- Here they say that liquid Erythromycin is much more effective for Gastroparesis. The kind we had (called EES) had 250 mg/5 mL here, my kiddo took 3.5 mL. 250 mg is the normal dose but we figured out that she really needed a lower one or it just caused reflux.

I am sure you are very frustrated. I can't believe there is no one really managing your tube feeds. There should be someone covering if your dietician is away or your GI should really also be helping. Our GI really managed my daughter's tube feeds, though we did consult with a dietician a few times.

Elemental formulas tend to cause constipation not diarrhea, so I REALLY think you could benefit from one.

Cat, I'm so sorry to hear about your dog. We lost a dog too recently - she was very old (14) and sick, but it is still heart-breaking to lose a pet. Sending big hugs :ghug:
 
Thanks Sarah and Maya. It's so hard. I am trying to take care of myself - I just had a walk through the forest on my lunch break, and I think that helped a little bit. I still have zero appetite though. I have some noodles and tuna in front of me but I don't feel like having any of it. As for smoothies, I am supposed to have my pred with food or milk, so I have it with chocolate almond milk. But even that I can barely force myself to drink and I usually end up only having half a glass at most lately. So I don't think I could force down a smoothie either. I have done some crochet (while watching Lily nap) and I even did about an hour of sewing yesterday.

I'm sorry to hear that you guys have lost pets too. I've had lots of pets but mostly smaller things like hamsters, gerbils, a couple of hedgehogs, some fish, a cockatiel, etc. Lily is my first dog. And Lydia (in my avatar pic) is my first cat that's "mine." We had a cat when I was a kid but that was my dad's cat and she was sort of gross (she'd pee wherever she wanted, she was flatulent, etc). My cat Lydia is 14 now and I've been lecturing her lately that she has to live quite awhile longer! She's not sick but she's older and I think I would go crazy if I lost both my girls around the same time. At least when Lily goes, I'll still have Lydia for hopefully awhile longer.

I have definitely been petting Lily a lot, and giving her tons of treats (she's a smart dog and also very treat-motivated, and she has manipulated that to her advantage - she's now refusing to eat her kibble and even refusing to eat hamburger, but she'll scarf down treats happily - but since she's dying, I'm happy to give her as many treats as she wants). I'm taking a lot of photos too. And I can share a photo on here for you guys - this was Lily on her last birthday, in September of last year when she turned 8. She's a purebred pembroke Welsh corgi. She was very excited about her pupcake! (It was kind of huge so I cut it into quarters.)

SMallIMG_3905.jpg
 
Oh, and I forgot to mention - as for my pred taper, I did taper on Friday. Lily had emergency surgery on Tuesday to remove the tumor, and then we got conflicting information about when the results would be back. One vet told us it takes 3 days to get the pathology results (to know whether it was cancer or benign), and another vet said it takes 7 to 10 days to get those results. So I tapered on Friday morning, and then on Friday afternoon - 3 days, like the first vet said - we found out that it is indeed cancer. So I tapered before I knew for sure that my dog is dying. I stuck with the taper and I think it's going okay. I think my pain, nausea, no appetite, etc is just from extreme worry and stress about losing Lily.
 
Cat - have you seen an endocrinologist? I know you are sick of doctors and I don't blame you, but if you're having trouble tapering from really low doses of steroids, you could have adrenal insufficiency.

My daughter was just diagnosed with adrenal insufficiency after 5 years on and off steroids, plus 1 full year of Entocort.

It is a serious diagnosis - if you go into adrenal crisis, it can be very dangerous, even fatal.

Our endo says that GIs and rheumatologists use steroids very liberally and they can cause a lot of problems over time. We knew that, but we never really knew how bad adrenal insufficiency can be. Last week we had to rush my daughter to the ER for emergency IV steroids.

She will now be on hydrocortisone daily until her adrenal glands "wake up" - that is, if they ever do. She will be weaned very slowly and her ACTH and Cortisol will be measured and tracked by the endocrinologist.

Her ACTH and cortisol were so low that they were basically undetectable when we figured this out.

I know it's the last thing you want to think about right now, but I thought it's better that you know...Extreme nausea, vomiting, diarrhea, fatigue can be symptoms of adrenal insufficiency.

Your sweet dog looks so happy to have her cake. She deserves to be spoiled. By the last night, we were feeding our dog steak :lol:. She loved it!
 
Maya I think over here you can get 125mg/5ml for erythromycin so I might ask about that when I next see my GI doctor.
I think I'm going to have to call my GI doctors secretary as I still haven't even had a follow up appointment come through. Part of me feels like I can tough it out for another week or so and part of me feels like I just can't cope with another day like yesterday and today. For now I'm just going to use my meds to keep things manageable until I find out what is happening.
Over here dieticians manage the majority of tube feed related issues but the GI has to like sign off on things. But I think I will give her a ring tomorrow.

Cat I'm glad you're getting to spend this time with her and I'm glad she is enjoying all the extra treats! She is adorable and definitely looks to be VERY happy with her birthday pupcake [emoji4]

It will take a while for you to feel like eating and doing the general "taking care of yourself" activities, but do try and have little bits to eat and drink if you can, grief can cause massive weight loss and if you flare off the back of that you could end up struggling a bit. I know it's so much easier said than done though, I've been there. Keep us updated, I will keep you in my thoughts
 
Maya, I was tested for Addison's disease (the ACTH blood test where they check your blood repeatedly over a period of a couple of hours) back in 2010 shortly after I first got sick (my GI thought Addison's was possible and we at least wanted to rule it out), and I didn't have it at that time. I think my adrenal glands are still okay - I'm now down to 5.5 mg of pred, and I believe I've read that the body naturally makes something like the equivalent of 7 or 7.5 mg of pred, so I'm below that threshold and my adrenal glands should be doing something by this point. I had talked to the pharmacist at my compounding pharmacy a little while ago, and what I was told is that sometimes people just have a really hard time coming off of pred, and need to taper super slowly - going down by 0.5 mg once per month is what they recommended to me. My GI agreed to let me try that. And so far that's been going okay. I had just gone from 6 mg to 5.5 as of Friday. So I'll still be on pred for like another 11 months, but it's at such a low dose now that I think all will be okay. I'm sorry to hear your daughter has it, I'm sure it's pretty awful. I did some reading up on Addison's/adrenal insufficiency around the time that I was tested for it, and it really sounds like a terrible thing.

That's funny you mention feeding your dog steak, we were just at the grocery store yesterday and picked up some steak for Lily. A friend of mine who just had cancer herself has offered to bring some steak over for Lily too. So she's going to be eating very well for whatever time she has left.

As for me, I ate a small amount of noodles & broth and I feel really full now. I'm sure my stomach has shrunk from me barely eating anything for the past week. But I don't have any pain or nausea currently, so that's good at least. And as for the weight loss, I had gained a bit too much weight thanks to pred anyway, so I am still well within the healthy weight range (I would have to lose about 20 more lbs to become underweight for my height - I'm 5'8" and before Lily got sick I was at about 150 lbs, now I'm at about 146).
 
Cat, according to the endocrinologist we are seeing now, the physiologic dose is 15 mg of hydrocortisone which is roughly 3.75 mg of Prednisone.

You would not have Addison's Disease, you would have secondary adrenal insufficiency if it was from being on steroids. That means when tapering off Prednisone, your adrenal glands would not start up again and produce cortisol. It is actually the period right after you are done tapering when you need to be careful (and also when you get below the physiologic dose).

My daughter was checked 3 weeks after being done with tapering (off all steroids - both Pred and Entocort) and then 6 weeks after. At 6 weeks, her adrenal glands were not producing ANY cortisol and ACTH was undetectable.

So something to keep in mind...personally, I wish we'd had her followed by an endocrinologist much earlier.

My daughter had a bad time tapering too, but 0.5 mg per month is really very slow. At the slowest, we did 1 mg per month. It certainly won't hurt, but it's unusual to need that.
 
I wanted to add - since my daughter has adrenal insufficiency, when there is a stressful event in her life - an illness, a flare, a procedure and even something psychological, like a death, she will need "stress doses" of steroids because her adrenal glands will not be able to compensate.
 
I love, love, love my new GI! She is the best one I've seen yet and her office is super attentive which is awesome! I called them today to let them know that my insurance pinged the prescription for the Xifaxan and, within 1 hour, the nurse called me back and told me she had taken care of it. She also referred me to the allergist connected with the group and they called today. I have an appointment with the allergist on August 3rd at 8:30am and I'll be having the allergy testing at that appointment. I was told to stop taking anything with antihistamines or antihistamine properties so no Singulair or Pepcid for a few days. I can still use my rescue inhaler for asthma, though. I'm really interested to see the results. I've been off corn for a few days and, already, my face is clearing up quite a bit. I'm pretty sure I had hives on my face, too, so those are getting smaller. Weird...
 
Sarah, a whole month of it?! Ugh that sounds horrible! A month is a long time, but it feels like forever when you're miserable. I don't blame you for wanting to take a little break from your feeds. That's definitely understandable!

Cat, I'm so, so sorry about your dog. I definitely understand the physical consequences of grief. My symptoms first started about three weeks after my mom died. I feel like my illness was just kind of hiding before, and then after her death, it reared its ugly head and came out full force! Exactly five months after my mom died, I had to get my cat put to sleep. My mom and my cat were literally my two best friends and my favorite people (yes, animals count as people!) in the whole world. I had my cat since I was 8 years old. She was 15 1/2 when she died. I can't even describe our bond to you, but I'm sure you have something similar with your dog. There's nothing quite like that relationship. It's incredibly painful to lose a pet. I spend more time with my pets than I do with any humans. And they know more about me too! I remember sitting at the vet all alone with my dying cat in my arms. It was horrible. It was one of those times where I needed my mom, and I knew she would've been there for me if she was alive. I told everyone I'd never get another cat because it was too painful losing mine. But then my house felt SO empty without her, so about a month later, I adopted a kitten. I never thought I could love something again so much, but I did. And then, a month later, the kitten died. I was devastated. Anyway, sorry for my rambling, but I guess I just wanted to say that life is so unfair!! Your dog is only 8 years old, and you should have many more years together. By the way, your dog is so cute!! Unfortunately I don't have any words of encouragement or anything to say to make you feel better. It sucks. But I know you'll cherish your remaining time together. <3
 
Also, Cat, it's funny that you mentioned Addison's Disease, because my dad texted me the other day and suggested that maybe that's something that I have.
 
Akgirl, I totally get what you are talking about with your cat - my cat is 14 and I've been lecturing her lately that she has to stay healthy and stick around awhile longer, because I could not stand to lose her around the same time that I'm losing my dog. I don't have kids, so my hubby and pets are my family. And yes, I agree, pets do count as people - my pets are my favorite people. :) I'm so sorry that you lost not only your cat but the kitten as well. That's awful. I've thought about that too - I think I would like another dog, but not right away. I think once Lily goes, I will take at least a few months to absorb that blow, and then when I'm ready, I think I might foster a dog to ease myself back into dog ownership. I know a girl who works with a rescue organization, so I'm sure she could find me a dog to foster, when I'm ready for that. My neighbor also told me about a corgi rescue group somewhere in the state, she got her 2 corgis from there, so if I want another corgi then I might look into that too. But for now I'm focused on taking care of Lily and making sure she's comfortable and happy for whatever time she's got left. (The vet said the average survival rate after surgery is 3 months - she had her surgery 1 week ago, but the cancer has already spread to at least 1 other organ and also probably to her brain, hence the seizures she started having on Saturday, so I don't think she's going to make it to 3 months.)

As for Addison's disease, my GI had told me that it can mimic some IBD-like symptoms (diarrhea, nausea, etc) and it responds well to a low dose of pred. I had done a trial of 10 mg of pred not long after I had gotten sick, just to see how or if I responded to it, and I responded very well. So well that my GI thought we'd better at least check me for Addison's. And fortunately, it's not invasive to check for it, just a blood test, although it is longer than most blood tests. They do a blood draw to get a baseline, then they inject you with something which should make your cortisol levels rise, and then they periodically check your blood over the course of a couple of hours to see where your cortisol levels are at. If your cortisol rises, that's normal, but if it doesn't rise or if it barely rises, then it's Addison's. (I'm probably over-simplifying it but that's my understanding anyway.) It was a very easy test to do, just make sure to bring a book or tablet or something to occupy the time if you do have that test. I seem to recall that it took about 2 hours.
 
Cat, that's a great idea about fostering a dog. Ease yourself back into it. It's hard to open yourself up to loving again when your heart just got broken. But yes, for now just focus on spending time with your dog while you still can. The good news is that you can really appreciate this time together, since you know how special it is. I hope your cat lives for much, much longer!

I've seen three different GIs and not one has mentioned Addison's. No one has even suggested steroids for me. I've been telling my husband for a while now that they should just give me a low dose of steroids and see what happens. At this point, it's worth a shot. I'm actually surprised no one has even suggested it. Maybe the doctors I've seen haven't been the best.....or maybe after all this time they still don't believe me. Every doctor I see just seems to try to pawn me off on someone else. I told my husband I'm going to take matters into my own hands and find a drug dealer and get me some steroids. Obviously I'm kidding! I don't even know any drug dealers. ;) But after all the tests I've had (some ridiculous ones), you'd think the one for Addison's would've been suggested by now.
 
Cat, that is a wonderful idea! My niece fosters dogs and loves it. Of course, the first dog she fostered, she couldn't bear to part with and kept - that's called a "failed foster" ;).

I would spend all the time you have with your sweet dog and then later look into fostering. Fostering can be a lot of work (often you will get rescue dogs who have had a very hard time) but it's very rewarding.
 
Thanks guys. I actually looked more into the corgi rescue here in the midwest, and they actually do fosters as well as adoptions. It looks like their process is pretty strict, you have to fill out an application and there's a waiting list and stuff. But when I'm ready, I could at least get on the waiting list. And I think I'd be an okay applicant - it sounds like they prefer experienced corgi people with a place where the dog can run around. I have a yard but it's not fenced - but, there is a large fenced off-leash dog park about a block from my house (Lily has been there approximately one zillion times, it's her favorite place). And obviously I'm an experienced corgi person! So yeah, I'll continue making Lily happy and comfortable (I just zoomed home on my lunch break to feed her and let her go potty and pet her and check up on her - she seems to be doing okay although she had to poo like 4 times in 30 minutes). And then when Lily goes and I've grieved and I'm ready, I think I'll fill out an application to at least foster if not adopt through the corgi rescue group. I've heard of "foster fails" as well and I do like the idea of fostering first, it's like taking a potential dog on a test drive. ;)

Akgirl, my GI said that Addison's isn't a very common illness, it's fairly rare and some doctors (maybe most doctors?) haven't even heard of it. I just sort of lucked into the fact that my GI even thought of it. It is something you should probably bring up with your doctor - maybe print out some literature showing the symptoms of Addison's and how that correlates to your own symptoms. And for what it's worth, even though it was my GI's idea, I seem to recall that he wasn't able to order the blood test himself as that doesn't fall under the umbrella of GI illnesses (even though it can cause those symptoms). My primary care doc had to order the test. So check with your primary care doc.

As for steroids, I also had to ask for a trial of those. That was actually the straw that broke the camel's back. It was my first year of being ill, and I just got sicker and sicker and nobody could tell me what was wrong and the test results were coming back normal or inconclusive or negative. I was getting so scared and frustrated. I had a really horrendous night one night - I flared and that was the day that I decided to start counting how many bowel movements that I had. And I ended up being up all night going to the bathroom. I got a bit delirious around bathroom trip #30, and I lost count, but I went about 5 or 6 times after that, so I'm comfortable with saying that I had diarrhea about 35 times in a 24 hour period (that's still my record, I haven't beat it yet).

So I was exhausted and dehydrated and extremely fatigued and just plain feeling horrendous. I tried to get in to see my GI the day after that night but he was all booked up, so was my primary care doc. But the person on the phone said that another primary care doc in that same clinic had an opening, so I went to see that doctor. And he was absolutely horrible, worst doctor I've ever seen. He walked into the exam room, and without even saying hello or asking me what was going on, he announced, "You have IBS. And you look depressed. Would you like some Zoloft?" UM, seriously?! I "look" depressed? Maybe that's because I was pooping all night and didn't sleep and feel like I'm dying, I guess that would probably make anybody "look" depressed, but gah, how condescending and insulting.

That was it, when he said that, I was at my limit and something broke in my brain. I'm normally meek and shy but he turned me into someone else, someone much more assertive and confident. I put down my foot at that moment. I said very sternly, "No, I think I have IBD, and I would like to try prednisone." He hemmed and hawed and then he said he would like me to try a couple of IBS meds first, and then if they didn't work he'd be okay with me trying a short trial of a low dose of pred (5 days at 10 mg per day). I agreed to that. So I tried the IBS meds and they didn't do a thing for me. Then I tried pred, and it was like magic. I felt so great for those 5 days! I guess it's common to get "euphoria" as a side effect, especially the first time you're on pred, and I definitely got that side effect. I felt like a million bucks, I felt like bursting out into song and dance (I didn't, because I didn't think my co-workers would appreciate that, hah). And then, after the 5 days was up, my symptoms all came back with a vengeance and I felt worse than ever. I reported all of that back to my GI, and that's when he started taking me more seriously and treating me as though it is IBD - both my GI and GP agreed that pred works on inflammation, so obviously I have something inflammatory going on, and not IBS. So yeah, putting my foot down and demanding a pred trial ended up working really well for me. Obviously your experience may differ, but I think it is worth a try.
 
That day you went from a normal cat to a roaring lioness! Good for you, sometimes we need to stick up for ourselves and summon our inner super-hero. It takes courage, but it feels good to be assertive sometimes. :)
 
Cat, thank you for all the info! It's actually really, really helpful! A little euphoria from prednisone sounds amazing! I can totally picture myself dancing around! I can't even remember what it feels like to feel good, or even "normal," so I cannot tell you the excitement I'd have if I found something that made me feel like that. But I'm sure all of you understand that!

Today I've been doing a spit test to check my hormones and stuff. I'm sure everything will come back normal, because everything always does, but it's good to rule stuff out, right? But maybe not so good to waste more money.....
 
Akgirl, I hear you on the money thing. I think my finances are just always going to be a mess. I was doing okay financially for a short time. I finally got all of my medical debt paid off a couple months ago. Then about 10 days ago, I bought myself a car. I felt like I was being responsible - I used most of my savings to pay for the car (it's used, not brand new) so that I wouldn't have a car payment. I was planning on then working to replenish my savings account, but only 3 days after I bought my car, my dog got sick. We ended up spending over $3000 at the emergency vet, and that all went on the credit card because we no longer had enough in savings to cover it all. Ugh. Soo, now I'll be paying off medical debt... for my dog. It's like, same crap, different day. I'll still be paying off Lily's bills for awhile, and then maybe hopefully I can start putting money back into my savings and get some semblance of being back on my feet financially again. It sucks, though. It is good to rule stuff out, but the medical debt that comes along with it is not so good.

Yes, the euphoria was perhaps the best I've ever felt! If pred did that to me all the time (sadly, it was a short-lived thing and only happened during that initial trial), I'd probably never want to get off of the stuff. It really did suck coming off of the pred at the end of the 5 day trial, though, because then I felt worse than ever. So do take that into consideration if you ask for a pred trial.
 
Just when you start feeling good about your finances, something always has to happen. Vet bills are always ridiculous! I think they charge more because they know we love our pets and we'll pay pretty much anything for them.

That's good to know about the pred. It makes me a little nervous, but I always have anxiety when I start new medication. In this case, I'd have it while stopping it. But I still think it'd be worth trying. I just have to get up the nerve to ask for it! I still have an antidepressant sitting in my medicine cabinet, waiting for me to try. I've developed super bad anxiety (like physical symptoms of it), so my doctor prescribed me an antidepressant that's supposed to help with panic-type feelings. So of course I have anxiety about trying something for my anxiety. ;)
 
Ron, I know you are retired and on a fixed income. That has to be really challenging. I bet you have to be really frugal. I am super frugal and thrifty as well. Basically my entire wardrobe has come from thrift stores and yard sales/garage sales, or sometimes I sew my own clothes. The only clothes I buy brand new are underwear, bras, socks, and shoes - and I try to find clearance sales for those. I've only ever bought used cars, never brand new. My old car was 16 years old with over 200,000 miles on the odometer. My "new" car is a 2010 model year with 84,000 miles on the odometer, and I paid about $6000 for it which is a bargain. My house is a fixer-upper and we paid about 2/3rds of what it was appraised at - we have a 15 year mortgage and are still paying less on our monthly mortgage payments than we were when we were paying monthly rent on an apartment. So yeah, I'm a champion of thrift! Partly by choice and partly by necessity. It does feel good to find a really good bargain on something that I needed anyway, though. But yeah, I feel like all my thrifty efforts are sort of for naught when I get hit with a large expense, like doctor bills or vet bills. That is a big blow to my already tight finances.

And yeah, Akgirl, the emergency vet is even more expensive than the regular vet here, and of course Lily's two medical emergencies both happened when the regular vet wasn't open. She got sick & needed emergency surgery last week Tuesday evening and our regular vet had already closed for the day. And then last Saturday she started having seizures, and of course our regular vet isn't open on weekends, so back to the emergency vet we went. I swear they charge you a fee just for walking in the door. They were nice enough to give us price estimates up front, but it still was a major dent in our finances, and our dog is dying anyway so it just totally sucks all around. We've decided that if/when she has another medical emergency, we're likely going to put our dog down at that time. It's not fair to her to keep suffering through these things, she's dying anyway, and we can't afford much more either. My dog's well-being ranks above finances, but finances are nonetheless a consideration that we have to factor in. Ugh. Everything is just ugh right now.
 
Really quick update because I feel rubbish but changing to an elemental feed next week! I will get the delivery sometime in the week then I go in to see my dietician Thursday to do the starter regime and all that stuff as well as a general check up :)
I have also finally had a doctor listen and acknowledge my pain and have been prescribed some painkillers to try so that's a relief. I'm hoping the two things together will mean things pick up a bit soon!
 
The doctor's office called me today and I'm really irritated with my HMO. They keep denying things that the doctors prescribe! My Xifaxan is on hold because it was denied by my insurance for some crazy thing - apparently they will only let you try it if you were on an antidepressant and failed?!? It's not an antidepressant - it's an antibiotic - so I'm not sure why that would have any bearing on it! The good thing is that I have tried several antidepressants so I will be approved but it's a waiting game.

The good news is that my doctor's nurse is VERY good with communication - she called me today to follow-up and apologize that the Xifaxan has not been filled yet even though I haven't called her since Monday. :)
 
The doctor's office called me today and I'm really irritated with my HMO. They keep denying things that the doctors prescribe! My Xifaxan is on hold because it was denied by my insurance for some crazy thing - apparently they will only let you try it if you were on an antidepressant and failed?!? It's not an antidepressant - it's an antibiotic - so I'm not sure why that would have any bearing on it! The good thing is that I have tried several antidepressants so I will be approved but it's a waiting game.

The good news is that my doctor's nurse is VERY good with communication - she called me today to follow-up and apologize that the Xifaxan has not been filled yet even though I haven't called her since Monday. :)
Hope you can get it soon
 
Really quick update because I feel rubbish but changing to an elemental feed next week! I will get the delivery sometime in the week then I go in to see my dietician Thursday to do the starter regime and all that stuff as well as a general check up
I have also finally had a doctor listen and acknowledge my pain and have been prescribed some painkillers to try so that's a relief. I'm hoping the two things together will mean things pick up a bit soon!

I'm SO glad Sarah!! Hope you start feeling better soon.
 
Thanks Cmack. She's the best dog ever and I'm just trying to make her happy and comfortable. I found a new lump on her yesterday in the right armpit area, so my guess is that the cancer has now spread to at least some of her lymph nodes (there's no lump in the left armpit area, I checked her like 10 times to make sure I wasn't imagining things). I bought her some more steak and carrots yesterday - her favorites. So she's eating really well and seems very enthusiastic about food, so I am hoping that means she's still feeling reasonably well. I know that animals will often hide their pain, so I hope she's not in pain.

For awhile I was in the crying phase, and I had no appetite and some nausea and abdominal pain. Then I entered the anger phase and my guts felt better, but I felt like I wanted to punch everybody. It was like, my dog is dying and I'm so angry about that and I want to take my anger out on the world! But since I found the new lump on Lily yesterday, I went right back to the crying and my guts are unhappy all over again. I hate every single thing about this situation. It sucks so much.
 
Thanks Ron. Please give Alex a big hug for me. Is Alex doing well these days? How old is he? I know you've said he's a yellow lab, and I believe you've said he's a service dog for your wife, right? Give him some pats and treats on behalf of me and Lily.
 
The prescription for Xifaxan was approved by my insurance yesterday and I started on the new medication. I have to take it 3 times a day for 14 days. I've noticed that, like any antibiotic, it causes fatigue. Not a fun side effect, but at least it's not extreme.

Also, I saw my new psychiatrist yesterday and I like her. She's not the best I've ever had, but she's definitely better than the last one I saw. I've seen a handful of psychiatrists and my favorite passed away from a brain tumor in 2006. He was wonderful. Anyway, she asked me many questions and recommended that I start on a second antidepressant while lowering the dose of the first. She is hoping that this will reduce my irritability and mood swings and balance out my depression/anxiety. She gave me a few choices (I've tried several antidepressants in the past and have been on Wellbutrin since 2010) so I opted to try a low dose - 10mg - of Prozac. I was given specific instructions to take 1 capsule every other day (cannot cut in half since it's a capsule) and then increase to 1 capsule daily on the second week. I'll see her in about 2 weeks to report progress. :)
 
Cat, I'm super frugal as well! I'm all about couponing and getting good deals. Sometimes I make money buying stuff! I put a lot of time and effort into saving money, so I completely understand how frustrating it is to then have to pay ridiculous amounts of money for things, such as vet visits or doctor visits. I always cry when I have to pay a bill like that. I had an appointment with my primary care doctor today. She now gives the option of doing video appointments where you don't even have to leave your house. I opted to try that out this time, since it's gotten sooo difficult for me to go anywhere because of how bad my symptoms have become. I had been emailing with her prior to the appointment, and I had asked about prednisone. She said she wanted to get an update on me and my symptoms first, and then she would consider it. At the beginning of my appointment, she told me that my insurance would not pay for a video appointment, and she asked if I wanted to proceed. I said yes (because I'm SO desperate to feel better, and all I could think about was getting something that might help with my symptoms). My appointments with her usually cost me $15. This one cost me $260. It might not sound like much, but that's a lot of money for me. I cried when I saw the charge on my credit card. And guess what? I'm not getting the pred. Somehow I ended up with yet another antidepressant. I burst into tears as soon as our appointment ended. (I've obviously cried a lot today!) It's just so frustrating! I know there's something wrong with me, and I'm so tired of everyone saying it's all in my head. Sorry for the rant, but it's been a rough day. :(

MissLeopard, keep us posted! I tried that same medication (I think) for my small intestine bacterial overgrowth. It didn't end up working for me, but I've heard many people say that they felt much better while on it. I hope it works for you! And I'm so glad you've found a good doctor. Why are they so hard to find?! Cherish this one!
 
MissLeopard, keep us posted! I tried that same medication (I think) for my small intestine bacterial overgrowth. It didn't end up working for me, but I've heard many people say that they felt much better while on it. I hope it works for you! And I'm so glad you've found a good doctor. Why are they so hard to find?! Cherish this one!

My doctor said she thought it would help take care of my bloating issues. Even though the hydrogen breath test came back normal last year for SIBO, she thinks I still have underlying bacterial issues, especially since I had severe food poisoning in April. I haven't noticed any difference from the medication yet, but the nurse said it would take a week or so and I just started on Friday. :)
 
Akgirl, that sucks all around, I'm so sorry to hear it. Can I ask what antidepressant it is? Some of them can supposedly help with chronic pain and with some bowel issues (although I'm skeptical that it's helped my issues). I'm on amitriptyline 25 mg for my migraines, and my GI also says it should be helping "calm" my guts as well, but I honestly have never noticed it having that effect. It maybe makes me a bit constipated at times, but that's about it. My guts are not "calm." Sometimes they're as far from calm as a thing can be.

On the subject of money, this might be quite morbid, but I took my dog to the vet this morning to get her staples out from her surgery 2 weeks ago, and while I was there I asked about the cost of cremation. When Lily dies (which will be soon), I want to get her cremated and I'd like to put a little bit of the ashes into a pendant so that I can wear it on hikes and walks. That way she can still come on walks with me, in a way. So yeah, I got a price quote on cremation for my dying dog. Morbid but necessary. In case anybody is curious, it sounds like the cremation cost, with her ashes being returned to me, is $140 (that doesn't include the euthanasia cost, that's just for cremation). That sounds pretty reasonable because I think human cremation is more like $1000? And I've already ordered the pendant online, that was less than $20 and should be arriving today. I'm going to clip a lock of her fur to keep, too. I always like to have a plan, I feel nervous when I don't have a plan. So even though it's kind of horrible, I'm planning for my dog's death, because I can't not plan for it. It's going to happen, it's coming soon because her cancer is aggressive, and I hate it, but I have to confront it and plan for it and deal with it. So this is my way of dealing with it. Well, that and alternately crying a lot and getting really angry.
 
Back
Top