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Hi akgirl,

I agree with what Cat said. We get what you mean, these diseases can be very terrible emotionally. It is easy to feel like nobody "gets it" or nobody cares, but people do care, it's just that if they haven't been through this stuff it's so hard for them to grasp our situation. I hope you are having a better day.
:rosette1:
 
Thanks for the advice! Don't have prescriptions but I took peppermint oil which is antispasmodic (much milder, I'm sure) and a medicine for gas. Using the heating pad too. It isn't helping yet but maybe it will after a while. We have a cold running through the house so I feel crummy, but I think that is the virus. Thank you again for the advice!
 
Peppermint is very mild on the digestive system, as long as you don't have GERD. I do have severe GERD, and I was told that I should avoid peppermint. Apparently it has a "relaxing" effect on the entirety of the digestive tract, which sounds good, but it also relaxes the valve in between the stomach & esophagus, which allows more refluxate to come up. But as long as you don't have GERD, peppermint is fine and might help.

Ginger is also good for the digestive system, but I think I've read that it can have a mild constipating effect, which might not be the best for you right now. Sometimes when my guts are just mildly riled up, I'll have some ginger tea to try to get them to calm down.
 
Dahlia, I hope you're feeling a little better by now. Unfortunately, I don't have any advice that hasn't already been said. I was going to recommend a heating pad and a warm bath with some epsom salt. You'd think with all the technology these days, none of us would be sick. But it seems to be the opposite.

Thanks, cmack! Honestly, just being able to vent on here helps me a lot. I know I sound crazy sometimes, but at least I know that you guys get it.

Cat, just reading your post actually made me feel better. You totally get exactly how I feel. It sucks that we're all going through this, but it's nice that we have each other. :) Even if we hardly know anything about each other besides our pooping habits!! Being sick has definitely showed me the people who do actually care about me. There are people who I thought would care more, but they're too wrapped up in their own lives. And I get it. I mean, we all have lives, but sometimes it's nice to have someone check in on you. Most people only check in on me if they want something. "Hey, how are you feeling?" One minute later: "I'm going out of town, can you watch my dog?" But I do have a couple people who have been really great! One of my best friends is someone I've known since kindergarten. She's never been sick like this herself, but somehow she gets it. She says things that I think, and I don't even know how! She also gives me good suggestions. Not annoying ones, which I'm sure we've all gotten. If one more person tells me that I just need to exercise more or that thinking positively will fix everything, they're getting punched in the face. Plus, she truly does believe I'm sick, and she's never doubted me.

So thanks everyone for being here to listen to me complain. Maybe someday we can all get better and have an Undiagnosed Club Support Group meet up. We can dream, right?!
 
"Calling Bill Gates." We need funding! Honestly somebody should write him.*I bet he would help in some big way. Maybe I better do it, worth a try right? *(I want Trysha to proofread for me though).
 
Yes!!! I was totally thinking the other day that if I won the lottery, I'd hire a team of doctors to work exclusively on me. Surely they'd figure it out then, right? I'll even give a big bonus to the person who comes up with the winning approach!
 
Akgirl, I've thought the same thing - if I somehow become rich, first thing I'd do is head to the Mayo Clinic and have every doctor there have a turn at taking a look at me and running tests on me. :p Did you watch the new Lady Gaga documentary on Netflix? She's got some chronic illness and chronic pain issues, and there's one part where she talks about how she's so thankful that she has basically unlimited money and resources to try to keep on top of her health issues, but that if she weren't who she is then she would be terrified and have no idea what to do about her health issues, and that she feels terribly for all the people out there who are struggling with that. I was like, yep, that's me! And, even with all her money and fame, she's still clearly in a lot of pain and struggling with her health. It was kind of heartbreaking, to see that even if I did magically become rich, that's still not necessarily the final puzzle piece to becoming healthy and well, you know?

But hey, if I do win the lottery or something, we definitely will make a forum meet-up happen! There will have to be a LOT of bathrooms in the place where we meet, though. ;) I propose we all meet in Kohler, Wisconsin, where they make the Kohler toilets! Ha ha. In all seriousness, I'm glad to hear that you have such a good supportive friend. Having "real life" support is so important. The forum is great, but having somebody in real life is important too. The more support you have, the better.
 
Just wanted to update quickly to say the abdominal pain is slowly improving. It felt kind of like the way things started out at the beginning of the year. Keeping an eye out to see if I get the another round of digestive craziness. Hopefully not :). I think I may be up for trying some normal food tomorrow. Fingers crossed.
 
Dahlia said:
Just wanted to update quickly to say the abdominal pain is slowly improving. It felt kind of like the way things started out at the beginning of the year. Keeping an eye out to see if I get the another round of digestive craziness. Hopefully not :). I think I may be up for trying some normal food tomorrow. Fingers crossed.
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Wish you the best.
 
Abdominal CT scan has been scheduled for next week. GI doc's office called me to make an appointment too. I'm glad all of this is happening right now, too...my labs came back and my WBCs were mildly elevated. The lump on my abdomen appeared to get a little smaller last night (or maybe I just didn't notice as much) but now appears to be a little bit bigger and slightly warm to the touch. It's still soft, not hard to the touch. I had an awful episode of cramping and pain in my stomach the day before yesterday about 3 hours after eating. It was a burning, tearing feeling that radiated to my mid-back. I had chills last night. I'm not sure if I had a fever because I was at work and I couldn't check it.

My fatigue (which is chronic, and nothing new) has eased up, although it seems like my back pain has kicked into full gear. My rheumy mentioned during my appointment that ankylosing spondylitis was a possibility, given my scoliosis and back pain.
 
A lot better now. It hurts if I press, but basically ok otherwise. Not so crazy tired either and low grade fever is gone. Bug running through the house so I couldn't tell if feeling tired went with the pain, or I was just getting a cold. Should be ok now, as long as it doesn't cause any problems.
 
Chronically awesome - that's great that it's scheduled, but I'm sorry you are having back pain problems too. What you are describing sounds really unpleasant. I'm glad your rheumatologist is so supportive. They sound great.
 
Hi ChronicallyAwesome,

If things get worse I would go to emergency. Those are familiar symptoms to me, in my case it was a pretty significant infection involving an abscess. Take care and be sure to listen to your body. I wouldn't trust a thermometer as I was normal temperature and had already gone septic. You may very well need antibiotics to knock down an infection until your appointments are scheduled.


Best wishes,

Chris
 
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Dahlia said:
A lot better now. It hurts if I press, but basically ok otherwise. Not so crazy tired either and low grade fever is gone. Bug running through the house so I couldn't tell if feeling tired went with the pain, or I was just getting a cold. Should be ok now, as long as it doesn't cause any problems.
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I hope things keep improving. If anything starts hurting worse I would be concerned.

Best regards,

Chris
 
Cat, I've been meaning to watch the Lady Gaga documentary. Now I definitely need to. It's crazy that she still struggles with her health, even though she has tons of money. But at least she doesn't have to worry about money on top of everything else. It's really cool of her though to do a documentary. I'll let you know what I think when I get around to watching it.

ChronicallyAwesome, I'm glad you were able to get some appointments scheduled. It sounds like you have a lot going on, but hopefully you'll get some answers soon. Please keep us posted!

Dahlia, I'm glad you're doing a little better overall, and I hope you keep improving. For me, all days suck, but I'm thankful for the ones that suck a little less.

Today has been the kind of day where I have to stay in bed all day. I was able to take a shower, but then I went straight back to bed. But yesterday I was able to spend some time (at home, of course) with my husband, so at least there's that. :)
 
Have any of you had an abdominal ultrasound to try to figure out a diagnosis? I've had tons of expensive and invasive testing, but I haven't had a simple ultrasound, so I'm curious if you guys think it'd be useful. Someone suggested to me that I could have some type of vascular compression syndrome, which often causes GI symptoms. Has anyone heard of this? Also mast cell activation disorder.....anyone? I hate how much research we have to do on our own behalf. Isn't that our doctors' jobs?! Mine don't seem to research anything.
 
GI appointment was scheduled today... It's a month away, even though my CT scan is later this week. Hopefully I won't have to wait that long to find out the results? :(
 
ChronicallyAwesome, hopefully your doctor will call you once your results are available. Or at least send you a letter in the mail, which would still get to you sooner than waiting until your appointment. Does your doctor have a patient portal? Sometimes you can get results quickly through that. Good luck on your CT scan! I'm sending good vibes your way. :)
 
ChronicallyAwesome - I hope you get answers soon. I think (hope!) that if there is something they see that means you should get immediate medical care that they would call you.

AKgirl - I had an abdominal ultrasound when I first had severe abdominal pain early in the year. They measured all the organs etc. and were looking for my appendix bc of the symptoms. It seemed to me that they could see and measure everything better when they did an MRI but maybe there Is something they can do with an ultrasound that I don't understand. I'm sorry to hear every day is a bad day. I hope you get some answers soon.
 
akgirl said:
Have any of you had an abdominal ultrasound to try to figure out a diagnosis? I've had tons of expensive and invasive testing, but I haven't had a simple ultrasound, so I'm curious if you guys think it'd be useful. Someone suggested to me that I could have some type of vascular compression syndrome, which often causes GI symptoms. Has anyone heard of this? Also mast cell activation disorder.....anyone? I hate how much research we have to do on our own behalf. Isn't that our doctors' jobs?! Mine don't seem to research anything.
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I have heard of the compression syndrome - it's called Median Arcuate Ligament Syndrome (MALS). The celiac artery is compressed which causes GI symptoms. It can be cured thru surgery, but you often have to go out of state if you don't live near a hospital that specializes in the surgery. I know about it because I watch a daily vlog on YouTube and the girl in the video has MALS. She has gastroparesis issues and the doctors did an ultrasound and CT scan with contrast to see the placement of the artery. It was confirmed that she had it.

Chronically Jaquie
 
I appreciate everyone's input! You'd think that if an ultrasound could potentially spot something, it'd be one of the first tests doctors would run. It's way cheaper and easier than the other tests we've all had done. But I guess they don't make as much money on cheaper stuff.....

MissLeopard, thanks for the info! I'd never heard of compression syndromes before, but if I could have surgery and feel better, I'd be all for it. I bet none of the hospitals in my area do it though. My state pretty much sucks at everything haha. How are things going for you? Are you feeling better?
 
Hello everyone!
It's been AGES since I was on here and I wanted to drop by and see how you're all doing. I still remember some of you guys from when I was active here over a year ago.

As for me? I've had the worst year. From strange, unexplained flares of bad symptoms, to a bad reaction to my reflux drugs that sent me to the ER several times over the summer (blisters in my whole mouth and throat, took forever for docs to figure out it was the drugs). I also had as care with a tumor in my breast (it's benign, thank god!), what appears to be some motility issues, and worse reflux than I've ever had before.

I also found out today that my teeth are irreversibly damaged from these past few years of GI illness.

I am finally having a fundoplication to help control my GERD, however. It's going to be an open procedure, and a partial (Toupet) fundoplication. My anxiety is through the roof, I've never had major surgery before, but I'm confident it's the right choice. Hopefully it will take care of at least some of my issues.

Again, I hope you're all doing as well as possible!
 
Izzie! Welcome back, but I'm sorry to hear of everything that's happened! I know you mean it when you say it's been the worst year - I remember you had been hit by a car when you were previously active on the forum, so for it to be a worse year than that is really saying something. :(

I hope the surgery goes really well. I haven't had major surgery myself so I cannot offer you any advice, but I hope it gives you tons of relief and a better quality of life. When are you having the surgery? Please update us and let us know how everything goes. I'll keep you in my thoughts.

Here's the short update on me - it's been a bad year (couple of years, really) for me, as well. Last year my grandpa died and we had to put my grandma into a memory care facility due to her severe dementia. That was all hugely stressful and emotional, and as a result I had the worst flare that I'd ever had. I flared up in late July of last year, and by late August of last year I had lost 17 lbs in one month and couldn't digest anything, couldn't sleep due to the pain waking me up, and just basically couldn't function. I was hospitalized at that time and was put on IV steroids and EEN. Fortunately that helped and got me out of the flare. I've been on pred ever since, though, I'm still trying to get off of the stuff. And then this July, my dog got diagnosed with terminal cancer. I don't have kids, it's just me and hubby and our pets, so my pets are like my family and it's been devastating. Plus she's my first ever dog, so I haven't been through this before. It's a new, terrible experience. She's still hanging in there, still eating and doesn't seem to be in pain, but her energy levels are dropping and there's a palpable tumor that's gotten larger and larger, and I know the end is coming soon (they estimated she'd have 3 months left to live, and it's now been 2.5 months). So, I've had a hard time with lots of grief lately and more to come in the near future. I definitely feel for you on having a hard year as I'm right there with you.
 
Cat-a-Tonic said:
Izzie! Welcome back, but I'm sorry to hear of everything that's happened! I know you mean it when you say it's been the worst year - I remember you had been hit by a car when you were previously active on the forum, so for it to be a worse year than that is really saying something. :(

I hope the surgery goes really well. I haven't had major surgery myself so I cannot offer you any advice, but I hope it gives you tons of relief and a better quality of life. When are you having the surgery? Please update us and let us know how everything goes. I'll keep you in my thoughts.

Here's the short update on me - it's been a bad year (couple of years, really) for me, as well. Last year my grandpa died and we had to put my grandma into a memory care facility due to her severe dementia. That was all hugely stressful and emotional, and as a result I had the worst flare that I'd ever had. I flared up in late July of last year, and by late August of last year I had lost 17 lbs in one month and couldn't digest anything, couldn't sleep due to the pain waking me up, and just basically couldn't function. I was hospitalized at that time and was put on IV steroids and EEN. Fortunately that helped and got me out of the flare. I've been on pred ever since, though, I'm still trying to get off of the stuff. And then this July, my dog got diagnosed with terminal cancer. I don't have kids, it's just me and hubby and our pets, so my pets are like my family and it's been devastating. Plus she's my first ever dog, so I haven't been through this before. It's a new, terrible experience. She's still hanging in there, still eating and doesn't seem to be in pain, but her energy levels are dropping and there's a palpable tumor that's gotten larger and larger, and I know the end is coming soon (they estimated she'd have 3 months left to live, and it's now been 2.5 months). So, I've had a hard time with lots of grief lately and more to come in the near future. I definitely feel for you on having a hard year as I'm right there with you.
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I can definitely empathize. Grief and stress is definitely not helpful to our physical illnesses. Right before I was hit by a car my grandmother passed suddenly, and since then I lost my grandfather, my other grandfather developed a brain tumor that has left him bedridden for the past year, my father passed away from cancer, and just two weeks ago the family dog died in a dramatic chain of events that had him bleeding out in the back of the car as we dashed to the vet's office. It's almost comical in a tragic way to line all of it up, seems like too much to deal with in such a short time.

I'm so sorry about your dog, only those who've lived with pets can understand what it's like when animals are your family as much as any human.

It seems to me as well that for every stressful event, the physical illness flares even more. I'm glad you are out of your flare though, hope it stays that way!
 
Oh my goodness, Izzie! I didn't know that all of that happened in your life in such quick succession. That's absolutely horrible. And I'm so sorry to hear about your dog, too. That's heartbreaking. My dog almost did something similar although hers was internal bleeding. We didn't even know she had cancer. She had been seemingly totally healthy but then very suddenly became ill. It turned out that there was a tumor on her spleen which grew large without causing any outward symptoms, so we had no idea she had this tumor. Then the tumor ruptured and she started massively bleeding internally and basically went from fine to actively dying within about an hour. We didn't know what was wrong but she was obviously ill - she became very lethargic, didn't want to eat, had pale gums, was panting heavily, and then started groaning in pain. We rushed her to the emergency vet and as we were driving I kept yelling, "Hang on, Lily!" as she was groaning and dying in the back of the car. She very easily could have died in my car, too (as it was, she thankfully made it to the emergency vet where we paid $2500 for emergency surgery to remove the spleen & tumor and stop the bleed, only to be told that it's cancer and is metastatic and terminal, so we've had financial stress on top of everything else, as her vet bills all went on the credit card).

I'm really sorry to hear about the loss of your other family members, too. How awful to lose them one after the other like that. It's been hard enough for me to lose my grandpa last year and be losing my dog this year, I can't even imagine losing more family members on top of all of this. We've already nearly lost my grandma a few times - she's spontaneously stopped breathing twice that we know of, and at least one of those times she also went into cardiac arrest. She's got a do not resuscitate order, so nobody is allowed to do CPR on her when this happens. The first time it happened, she was down for a few minutes before the ambulance arrived. One of the ambulance guys got in her face and yelled, "WAKE UP!" at her, and amazingly that actually worked! She woke up. There must have been some smidgeon of consciousness still in her brain that heard the man yelling at her, or that's my guess anyway. She has dementia so of course she doesn't remember much/any of it. The second time it happened, the staff at her care facility yelled at her as soon as she lost consciousness and stopped breathing, and she came right back that time too (I'm not sure if her heart stopped that time or just her breathing, but they said that the first time it happened they checked for a pulse several times and did not find one, so the first time was both a respiratory and cardiac arrest). So I've been worried about her as well ever since those episodes. I think she's on borrowed time if it's already happened twice, and she's 85 so she's not young. I know it'll be really hard to lose her, she's my last remaining grandparent. I never knew my mom's parents as they both died long before I was born.

Oh, and yes, I agree, pets are family members. Maybe even moreso than the humans in some ways. My pets comfort me like nobody else when I'm flaring or otherwise not feeling well. My cat will sit near me and gently purr, and my dog will always do something goofy to entertain me (she's a corgi, so she's naturally very ridiculous). I don't know what I'm going to do when Lily passes. It's going to be so hard. I really don't want to flare again, but I'm afraid that I might. The stress of her cancer and surgery and then her having seizures, the last few months have been extremely tough and I can tell my guts have been worse because of it. And I haven't been taking care of myself like I should - I haven't been taking my supplements, I haven't been flossing, I haven't been taking care of my skin so I have lots of acne, and I hadn't been exercising. I'm trying to address that stuff now one by one. I just started exercising again this week. So hopefully I can keep myself from flaring, we'll see. The next few weeks will be tough, my dog has about 2 weeks left to live if the vets were correct in their estimate. Ugh.
 
akgirl said:
I appreciate everyone's input! You'd think that if an ultrasound could potentially spot something, it'd be one of the first tests doctors would run. It's way cheaper and easier than the other tests we've all had done. But I guess they don't make as much money on cheaper stuff.....

MissLeopard, thanks for the info! I'd never heard of compression syndromes before, but if I could have surgery and feel better, I'd be all for it. I bet none of the hospitals in my area do it though. My state pretty much sucks at everything haha. How are things going for you? Are you feeling better?
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I am doing well physically - my new hormone regimen doesn't seem to be upsetting my health, which is surprising. Usually, I react to almost everything with hormones - except for Ortho-Evra but it's not available in the USA. Anyway, I'm hoping that it will continue to go well and not cause any problems so I can prevent future surgery.

Unfortunately, I got some really bad news yesterday that upset me to the point that I had to use my FMLA for a mental health day. I've been in the application process for a brand new apartment and, up until yesterday, everything was going well - my credit and background checks were pristine. Yesterday, the property manager told me they received my employment verification from my HR department and she relayed the bad news that my income does not meet the specific requirements. According to their calculations, I have too much earning potential - that's before taxes. I was so angry and upset! I was fully expecting to move into my own place next month but now I have to start from square one.

I can't be too angry about it, though, because there was something that really bothered me about the application process - I am not allowed to be a full-time student if I lived in that community. MAJOR problem because I am going back to school to get my second Bachelor degree to become a registered nurse and my program that I am going to apply to is accelerated - meaning it is full-time and lasts only 14 months. I would have to find another alternative and I was questioning whether it was worth it. Now I know it would not be, so I'm happy it worked out like it did. I am just frustrated because my depression/anxiety held me back for so long, but I'm not going to prevent it from allowing me to achieve my dreams.

I hope to get back to work tomorrow. I'm hoping this will blow over soon.
 
I did manage to make it in to work today - barely. I am an emotional wreck but I cannot afford to stay home since I was out of work for 3 weeks. I know that it's going to take some time to get over the loss, but I didn't think I'd take it this hard. I think the reason is because I was told the apartment would be ready next month so I was mentally prepared. I feel like the floor was ripped out from underneath me - I'm in a state of grief over it. I plan to write the community a letter after talking with my mom and realizing they were not totally upfront about things that they should have. I felt lied to and that bothered me the most.

Now, because of the lack of good communities, I'm probably going to continue to live at home until I graduate from nursing school and can afford to buy a small house. The apartments in my price range really suck and I cannot fathom moving into a nasty place just to move. My mom was actually the one who presented the option and said she wants me to be successful so I am welcome to stay at home while I better myself. I'm trying to be very grateful, but it's hard because I'm 34 years old and I want my own place. I'll make it work if I have to, though. I'm so glad to have support of my family. :)
 
ronroush7 said:
I am sorry things did not work out but I am glad you have the support of your family.
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Yes, that is truly my saving grace. They could have kicked me out a long time ago but my mom has been so supportive - especially the last few years. My dad just goes along without saying much. I started looking at the prices of the small bungalows in my area so I can start saving right now but I wouldn't be able to move until I got a BSN and started making a good salary. I also plan to get my MSN or DNP to become a nurse practitioner, so I know that it will be possible in the next 5 years or so to be financially independent. :)
 
I am glad I found this thread. I am in a state right now from my mouth to my butt, but my doctor won't reply to my emails after having a normal blood test, and I have no money to see another as I am unemployed so I guess I shall just have to wait and hope whatever this is dies down...or I get violently ill I guess...?

:/
 
hopeless said:
I am glad I found this thread. I am in a state right now from my mouth to my butt, but my doctor won't reply to my emails after having a normal blood test, and I have no money to see another as I am unemployed so I guess I shall just have to wait and hope whatever this is dies down...or I get violently ill I guess...?

:/
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That is wrong he is treating you like that. I hope you feel better soon. Keep us updated.
 
ronroush7 said:
That is wrong he is treating you like that. I hope you feel better soon. Keep us updated.
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I know. They want me to pay for another consultation I guess. :stinks:

BUT GOOD NEWS! I found out that my health insurance will pay for an online doctor service where you can interact with a doctor, possibly get a prescription and also they might refer you to a specialist!!!!!!!! :ywow:

I had no clue about it as it is relatively new! My mother just told me about it today. I was like WHY DID YOU NOT TELL ME SOONER????!!!!!
 
I'm pretty wiped out from the events of today, but I wanted to post an update. I'll include more details tomorrow.

CT went fine - I ended up having to drink oral contrast and I also had IV contrast. At the end of the exam, however, the tech asked me if I had ever had cancer. I said no and he seemed relieved. Then I got a copy of my results later (which was a surprise) and I realized why he had asked that question.

I have swollen/inflamed mesentary lymph nodes on the side of my abdomen where I noticed the mass. I also have low attenuation lesions on my posterior pelvis, bilateral ovaries, and endometrium. I also have a very atrophied left kidney, endplate sclerosis and a herniated disk in my lower back. Surprisingly, my entire GI tract appeared normal in the CT. So I know the cause of my back pain...and possibly the cause for the chills, fatigue, night sweats and joint pain. I'm sure that I will learn more in the coming days...
 
I've been having a rough couple of days, and I was feeling pretty sorry for myself, but then I came on here and saw that a lot of you are struggling extra right now too. So I'm sending love to everyone right now.

Izzie - I remember you from ages ago. :) I'm so sorry for all you've been through in the past year. I thought I'd had a bad year, but it doesn't even compare to yours. When I saw that you had posted, I was hoping you were going to say that you hadn't been on in a long time because you're feeling way better. I know there's nothing I can say to make any of what you've gone through/are going through easier but just know that I'm thinking of you.

MissLeopard - Ugh that's so frustrating!! It sucks when you finally have something to look forward to, and then your dreams basically get crushed. It sounds like that wasn't the right place for you, but that doesn't mean it still isn't a disappointment. I hope you're able to save up and find a place that's perfect for you. Where I live, everything (especially housing) is expensive. When I moved out of my parents' house, the apartment I got was not good. And sadly, it was the best option.....I had looked at others that were worse. I'm not a super clean person or anything, but I felt disgusting in it. I remember my first night in it, I was scrubbing the kitchen and crying by myself. Luckily my husband and I now live in a townhouse that we own, and it's not gross. Even though I know it's hard to wait, I think you're doing the right thing. Also, I'm proud of you for going to work. I know that probably wasn't easy!

ChronicallyAwesome - Wow, that's a lot to take in. I don't know much about medical stuff, except for what I've researched and experienced firsthand, so I know practically nothing about any of what you said, if I'm being honest. But I do know that that's a lot. Please update us when you can.

Hopeless - I can relate to a lot of what you said, unfortunately. Even just your name "hopeless" describes exactly how I've been feeling lately. Doesn't it drive you crazy when doctors just ignore your emails? It's their job to help us, and most of them suck at it. Is a blood test the only testing you've had done so far? I'm no doctor, but it seems to me that there is a lot more testing that can be done to try to figure out what's going on with you. Keep us posted, and let us know if you end up seeing an online doctor. That might be a good way to at least get a referral to a specialist, which it sounds like you need.
 
Suffering from IBD symptoms but cant get a diagnosi
Hello, Im not really sure if I should be on this forum, but I am at my wits end and wondered if anyone out there can give me some advice?
I have long term consequences of having Cauda Equina Syndrome, which is managed by copious amounts of medications including a moderately high dose of morphine.Im waiting for a spinal cord stimulator to control the pain but they wont do it because of fever which comes with tummy issues as they are wary of infection, sooo frustrating as i could potentially stop the morphine and other tablets that control my bladder. I have had terrible tummy issues for the past 3 years now and had mri which showed thickening entire colon... and concluded with @SUGGESTIVE OF INFLAMMATORY BOWEL DISEASE.although i have been taking the morphine for ten years now and before this all started i used to open bowels in the morning normal formed stools. since this started I alternate between diarrhea up to 10 times day and night and constipation if i dont go just for one day the swelling in my left side is visible and painful. i usually treat this with a dulcolax but the following day i am in the loo all day/night.i also had a ct scan which showed thickening in Ileum, the camera up bottom which couldn't be completed because of stools despite the enema. i finally had a colonoscopy which was normal and from then on drs say its fine nothing to worry about, but i cant live with this much longer.the last 2 weeks i first got big ulcers in my mouth along bottom lip and underneath my tongue, thankfully not in my throat which has happened before, my temp varies from 37.2-37,9, soooo tired spending 3to 4 days a week in bed sweating pain in tummy especially to the right of my tummy button a really sharp pain that eases off when i take morphine. i am nauseous constantly and frightened to eat as i know its going to make things worse. I have lost 2 stone since this started and just want some advice is it just IBS or something more worrying? Whenever I eat anything with or without the other symptoms my tummy bloats almost immediately. it doesnt seem to matter what i eat i look 5 months pregnant. the swelling is uncomfortable but bearable. also i dont know if this is relevant but my fingers swell and i cant wear my rings. my eyes are really gritty and gunky, i am blowing my nose much more than usual, and my stools are accompanied by orange mucus. since this started my stools almost always are fluffy and float diff to flush away and vary considerably sometimes even a large motion formed, sometimes diarrhea sometimes really thin like a pencil width but mostly are soft fluffy and lots of the orange mucus. today, i have a lot of pain in right area of tummy button, temp is 37.9 left area is ok as yesterday i passed stools all day every half an hour so i'm empty. headache not that bad. please if anyone has any advice i will be eternally grateful. i apologise if i shouldnt be posting on here as i don't officially have IBD but was just hoping for some advice. thank you really grateful for any advice. Sallyx ps i had a faecal calprotectin test 6 months ago it was slightly raised at 196 nothing to worry about. also forgot i have to take vit d as level was low at 28, and also folic acid but these will stop soon. i asked about retesting levels but they said not necessary?
 
I'm having such bad anxiety about my upcoming surgery. Mostly the procedure itself, but also because my surgeon has said that he thinks it's about a 50/50 chance that the surgery will even make me better, and also a risk that it might cause me additional and even more troubling problems. They're concerned about my esophageal motility issues, and worried that I might be unable to swallow/eat altogether post-op. In which case, I would need either a reversal surgery, or a G tube.

To anyone else here who's had major surgery - what have you found helps the pre-surgery anxiety?

akgirl - I remember you too! I'm sorry to hear that you've had a tough year as well.
 
Izzie said:
I'm having such bad anxiety about my upcoming surgery. Mostly the procedure itself, but also because my surgeon has said that he thinks it's about a 50/50 chance that the surgery will even make me better, and also a risk that it might cause me additional and even more troubling problems. They're concerned about my esophageal motility issues, and worried that I might be unable to swallow/eat altogether post-op. In which case, I would need either a reversal surgery, or a G tube.

To anyone else here who's had major surgery - what have you found helps the pre-surgery anxiety?

akgirl - I remember you too! I'm sorry to hear that you've had a tough year as well.
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Sending support and prayers.
 
Izzie said:
I'm having such bad anxiety about my upcoming surgery. Mostly the procedure itself, but also because my surgeon has said that he thinks it's about a 50/50 chance that the surgery will even make me better, and also a risk that it might cause me additional and even more troubling problems. They're concerned about my esophageal motility issues, and worried that I might be unable to swallow/eat altogether post-op. In which case, I would need either a reversal surgery, or a G tube.

To anyone else here who's had major surgery - what have you found helps the pre-surgery anxiety?

akgirl - I remember you too! I'm sorry to hear that you've had a tough year as well.
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Lorazepam leading up to the time before the surgery helped for me.
 
Ask them to give you something to help you relax during pre-op. I was given something and it really helped - I partially fell asleep on the way to the OR and don't remember being transferred over to the OR table.
 
Izzie said:
I'm having such bad anxiety about my upcoming surgery. Mostly the procedure itself, but also because my surgeon has said that he thinks it's about a 50/50 chance that the surgery will even make me better, and also a risk that it might cause me additional and even more troubling problems. They're concerned about my esophageal motility issues, and worried that I might be unable to swallow/eat altogether post-op. In which case, I would need either a reversal surgery, or a G tube.

To anyone else here who's had major surgery - what have you found helps the pre-surgery anxiety?

akgirl - I remember you too! I'm sorry to hear that you've had a tough year as well.
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Usually I pop one of my Ativan (lorazepam) pills when I experience pre-op anxiety. I had surgery in September and needed one - fortunately, the nurse let me take it as I was already admitted to the surgery center.
 
cmack said:
Hi ChronicallyAwesome,

If things get worse I would go to emergency. Those are familiar symptoms to me, in my case it was a pretty significant infection involving an abscess. Take care and be sure to listen to your body. I wouldn't trust a thermometer as I was normal temperature and had already gone septic. You may very well need antibiotics to knock down an infection until your appointments are scheduled.


Best wishes,

Chris
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hi thanks for your advice im really sorry u have suffered so much in the past, i was sweating all night and sick... and kept pooing orange mucus no poo at all just the mucus...trouble is with my back problems I cant sit and wait for 4 hours usual wait in the a&e so i usually go and end up going back home because its too painful to sit there so long...its a real nightmare,, the only alternative is to either wait until i see consultant or i call ambulance as emergency which seems a bit drastic but at least you get to lay down whilst waiting as in the past they admitted me to majors rather than waiting with eberyone else in the general a&e or minors. anyway this morning i feel a bit better i feel a bit hungry so going to try eating something and see what happens...wish me luck!!
 
hi thanks for your advice im really sorry u have suffered so much in the past, i was sweating all night and sick... and kept pooing orange mucus no poo at all just the mucus...trouble is with my back problems I cant sit and wait for 4 hours usual wait in the a&e so i usually go and end up going back home because its too painful to sit there so long...its a real nightmare,, the only alternative is to either wait until i see consultant or i call ambulance as emergency which seems a bit drastic but at least you get to lay down whilst waiting as in the past they admitted me to majors rather than waiting with eberyone else in the general a&e or minors. anyway this morning i feel a bit better i feel a bit hungry so going to try eating something and see what happens...wish me luck!!
 
Sally, I can’t sit well either bc of my back. Sitting is the hardest thing on my back and it gets worse as time goes on. I lay on the floor in a doctors office if needed. If they have a bench, great I will lay on that, but if not then the floor it is.

Izzie - I hope they give you something to help with the anxiety.
 
Hi sallyk,

Talk directly to the triage nurse about the trouble waiting. They will bump you up.

You might need a stronger painkiller. If you go to emergency it is possible a doctor will help with the pain.

Best wishes,

Chris.
 
Thank you for the tips, I will definitely ask for some kind of anti-anxiety medication on the day of the procedure.

My symptoms are rapidly getting worse and I have really intense pain right below my left side ribs. Heartburn is intense and constant. I feel weak and listless (probably due to iron deficiency - my infusion is way overdue). I've gotten so depressed about it lately, mostly due to the actual physical pain I'm in for most of the day, that I've actually started scaring myself with the thoughts I have occasionally.

Trying to feel gratitude rather than anxiety about the surgery. At least it is a chance to feel better...

Thank you again for your advice and support, it means a lot!
 
FInally worked up the courage to make the online appointment my health insurance covers (I have no money for an actual consultation).

Instead of booking a face to face webcam consultation, I managed to mess up and make a telephone one instead. I have an old phone that drops signal and makes it hard to talk to people. Yay (!). I can't change it as I have to ring them and have no money for credit.

I was able to attach a copy of my blood tests that I got done recently and I will tell him about my symptoms such as burning sensations from mouth to butt, the persistent pain in my butt that sometimes is so bad I can't walk, and the loss of appetite etc.

I am really really scared. All the doctors I have seen for this have been dismissive, some have even laughed at me or made jokes. My family too tell me I am imagining it and i need to just get on with my life.

I need support guys.... :(
 
hopeless said:
FInally worked up the courage to make the online appointment my health insurance covers (I have no money for an actual consultation).

Instead of booking a face to face consultation, I managed to mess up and make a telephone one instead. I have an old phone that drops signal and makes it hard to talk to people. Yay (!). I can't change it as I have to ring them and have no money for credit.

I was able to attach a copy of my blood tests that I got done recently and I will tell him about my burning sensations from mouth to butt, the persistent pain in my butt that sometimes is so bad I can't walk, and the loss of appetite etc.

I am really really scared. All the doctors I have seen for this have been dismissive, some have even laughed at me or made jokes. My family too tell me I am imagining it and i need to just get on with my life.

I need support guys.... :(
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I know that I and several other people here have also come across doctors who did not take us seriously when we first sought medical treatment. You are not alone!

Have they done any tests other than a blood test? Have you had a rectal exam, a fecal occult blood test, a fecal calprotectin test? If not, those are things that might be worth asking for. A fecal occult blood test will show if you have "invisible" blood in your stool, and an abnormal fecal calprotectin test could indicate inflammation.

Getting diagnosed for me has been a slow process of elimination and I'm not sure I'm fully diagnosed to this day, but from what I know from my own journey as well as talking to others - the above tests seem to be where you start off.
 
Izzie said:
Have they done any tests other than a blood test? Have you had a rectal exam, a fecal occult blood test, a fecal calprotectin test? If not, those are things that might be worth asking for. A fecal occult blood test will show if you have "invisible" blood in your stool, and an abnormal fecal calprotectin test could indicate inflammation.
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Thank you for your response. The support means a lot.

No they just do blood tests and when it comes back normal they tell me I'm fine.
 
hopeless said:
Thank you for your response. The support means a lot.

No they just do blood tests and when it comes back normal they tell me I'm fine.
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You definitely need to go see a doctor again and insist that you are not fine and that you need further testing to determine the cause of your symptoms. That's one thing I've learned through these years of being sick - doctors can be uncaring, unhelpful and sometimes just too busy to really care or listen, and that's when you have to try to make them listen anyway. Which is not easy, and doesn't always work.

One thing that worked for me even with my first (very unhelpful, rude, and condescending) GI specialist was to always remain calm and unemotional, sticking to facts and requesting specific things.

ex./ "yes I realize this blood work came back normal, but I still have these symptoms. What further testing do you usually do when people have persistent *insert symptoms*? Can we do those tests? If not, why?"

Don't give up! I had to go to several different doctors before I found one who listened, but there ARE doctors out there who will listen!
 
Izzie said:
One thing that worked for me even with my first (very unhelpful, rude, and condescending) GI specialist was to always remain calm and unemotional, sticking to facts and requesting specific things.
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Thanks I will try this when I speak to the doctor in a few minutes. Argh stress. :sign0085:
 
He said it is probably irritable bowel.

He said if it was inflammatory it would usually show in blood.

Told me to take over the counter IBS meds.
 
hopeless said:
He said it is probably irritable bowel.

He said if it was inflammatory it would usually show in blood.

Told me to take over the counter IBS meds.
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Not saying your situation is the same as mine, many people actually do have IBS, but I was "diagnosed" with IBS by my first doctor as well. Now 2 years later I have diagnosed severe GERD and esophageal dysmotility and am about to have surgery :p

Seek a second opinion! Even if you do "just" have IBS you deserve a compassionate doctor who will help treat your pain and symptoms!
 
Izzie said:
Seek a second opinion! Even if you do "just" have IBS you deserve a compassionate doctor who will help treat your pain and symptoms!
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I have seen several doctors at this stage.

He told me to take an over the counter anti-spasmodic or peppermint oil. Even though I said the prescription strength one didn't help.

I really have no hope left in me at all.
 
hopeless said:
I have seen several doctors at this stage.

He told me to take an over the counter anti-spasmodic or peppermint oil. Even though I said the prescription strength one didn't help.

I really have no hope left in me at all.
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Never ever give up. You have plenty of support here.
 
hopeless said:
I have seen several doctors at this stage.

He told me to take an over the counter anti-spasmodic or peppermint oil. Even though I said the prescription strength one didn't help.

I really have no hope left in me at all.
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I saw about 7 doctors (specialists, several more if you count GPs) before I got a final diagnosis. Some of them more helpful than others...

Don't give up!
 
Hi hopeless,

Keep fighting the good fight. You will eventually see results. I'm so sorry that you have been treated like this, but always remember that doctors get lied to just about as bad as the cops do. Sometimes seeing a different doctor and really looking them in the eyes and asking them for a better life helps, and it will change things. Some of them really don't listen well.

I'm here to support you. Hang in there, one day you will be hopeful again.


Best regards,

Chris
 
Izzie - When's your surgery? You might've already said, but I missed it. I'm so sorry you're having such a rough time. I REALLY hope the surgery improves your symptoms. You mentioned a few days ago about the irreversible damage to your teeth. My teeth have been giving me so much anxiety lately. I normally don't have problems with my teeth. I brush, floss, use mouthwash, and I haven't had any cavities (well I did in my baby teeth but those are gone and forgotten). But now all of a sudden, my gums are receding like crazy in some places. Like I can see the root on some teeth, and it freaks me out so much. I went to the dentist because I thought I was getting a bunch of cavities, but then my dentist told me it's from gum recession. But I don't know what to do to keep it from getting worse! Ahhh. I eat a lot of mints, which I know isn't good, but I do it to kind of help with my nausea, so I can't really stop. Anyway, I don't know what's going on with your teeth, but I do understand. Unfortunately, I also completely understand having thoughts that scare you because I have them sometimes too. I get concerned about myself, and then I wonder why no one else is concerned about me. Then I just get upset that no one cares, and it's a vicious cycle. I'm here if you ever want to talk. People who aren't going through this just don't get it.

Hopeless - I think you definitely need to try to find a better doctor who's willing to run some more tests or at least give you better suggestions on how to control your symptoms. I think most doctors just use IBS as an excuse when they don't know what's wrong with you. I wonder if IBS is even real, because I feel like there's always something else going on when someone has digestive issues. IBS feels like a cop out to me. One thing I've been diagnosed with is SIBO (small intestine bacterial overgrowth), and they say that many people who have "IBS" actually have SIBO. I think Candida is also common in those with "IBS." You know your body better than anyone else. Keep fighting! (But I shouldn't be the one talking because I've spent all weekend crying in bed, basically. So do as I say, not as I do. :))
 
akgirl - Thanks so much for the support! For me the issue with my teeth is acid erosion. In some areas it's bad enough that it really hurts and my teeth have gotten super sensitive. My hope is that surgery will at least halt this damage so I can maybe put off having to get crowns or anything for a few years. It's frustrating because you only have one set of teeth! And issues with teeth can be really socially troubling. I'm lucky in that my damage is not all that visible yet.

As for me, I actually started CBT therapy last week and in only two sessions I must say it's helping already. It's not helping the root of my anxiety (which is big scary things like surgery and death and complications) but understanding the processes of anxiety helps reduce it a little. I'm learning some tools to at least be able to manage it better.

Having a lot of pain still in the left rib area, which I thought was related to constipation at first but then I took some stool softeners and it only made everything much worse. I've totally given up on working or going to school and am on sick leave. In a way it's nice to not have to push myself and I'm hoping to put my focus on resting, doing some light exercise and preparing for surgery for the next few weeks or however long the wait ends up being. Struggling to eat but somehow still always feeling bloated and uncomfortable.

I'm so grateful for my mother and stepdad who have decided to drive up with me to the hospital (which is in another city for me but even further away from home for them) and stay in a nearby hotel while I'm in hospital recovering until I get to go home, and then my mother will be staying with me in my home for an additional week to help out. So nice of them and not something I've even had to ask for.
 
By the way (and sorry for the double post), are any of you guys "allergic"/sensitive to surgical tape?

I've been trying to find some kind that doesn't cause really painful rashes and itching so that I can bring it to the hospital for them to use but I've yet to find one that works. Tried two specialty ones for sensitive skin from my local pharmacy but no luck. One gave me a rash and the other just wouldn't stick to me at all.

ETA: Also, oh man I am losing so much hair. I don't know if it's my diet or my iron deficiency or what but every shower the drain is just FULL of hair and my ponytail keeps getting more and more pathetic. I'm almost leaning towards getting a short boyish cut just so I won't obsess about it so much.
 
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Izzie said:
By the way (and sorry for the double post), are any of you guys "allergic"/sensitive to surgical tape?

I've been trying to find some kind that doesn't cause really painful rashes and itching so that I can bring it to the hospital for them to use but I've yet to find one that works. Tried two specialty ones for sensitive skin from my local pharmacy but no luck. One gave me a rash and the other just wouldn't stick to me at all.
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Yes, I am VERY sensitive to surgical tape and adhesive. I get nasty red welts and it itches like crazy. I've found that Nexcare is the only thing I can use that doesn't cause problems. Even paper tape pulls my skin off and HURTS! Nexcare makes a blue tape that is for very sensitive skin and I also use their waterproof bandages (I've been using the bandages over my healing abdominal wound and they've done really well). Steri-Strips are also not a problem for me, but it's hard to get those over-the-counter.

Nexcare Sensitive Skin Tape

Nexcare Waterproof Bandages

I don't do well with the Band-Aid or Curad brands. Most of the Band-Aids contain latex - which I am allergic to. Nexcare is very safe. :)
 
I am so sorry I'm not keeping up with everyone here!

I am wishing everyone health!

Well...it's officially official for me: EoE. Darn it. I decided to enter a study, actually 2 studies, right away today. The first is just mostly a longitudinal symptom study, following a bunch of people w/EoE...but also gathering DNA and looking for genes, etc. The second is a treatment study. I decided that although lots of adults function "just fine" with swallowed steroids, I'd rather be "well" than "just fine" if possible, so I'm going to try elimination diets first. The study I'll be in for that will determine which elimination diet I follow (I haven't gone through all the screening questions, etc yet, so I'm not totally sure I'm qualified for the study, but they seem to feel I am after an informal thing today).

I'll admit I'm not excited for the elimination diet. But I gave up diary for over 18 months when I was nursing my daughter, because *she* has/had issues with cow caesin (which is supposed to only be in breastmilk in, like .05% of cases, but lucky us, we seem to fit that minority) and while I missed cow's milk and all the things it's in, it wasn't horrible. I got used to it. I figure this will be similar. It'll be tough, and I won't *like* giving up foods, but I can do it.

Now, I think I may go off and join an adult EoE board...~sigh~
 
I'm not sure which is worse: the oral contrast solution I had to drink, or the IV contrast. The oral contrast cleaned me out worse than any laxative ever could. Now I'm back to regular ol' constipated mode. The IV contrast caused coughing and random skin rashes for at least the day after the CT.
 
Wildmtnhoney sorry to hear about the EoE

There is a parents group for EoE
Here
https://community.kidswithfoodallergies.org/forum/gastrointestinal-disorders

Which has some adults on it
Lots of medically reviewed information

But also has a recipe database to be able to cook marvelous things without the top eight allergens (EoE triggers plus beef)

It's tricky cooking without
But the moms there can help you a lot with diet to make basically anything taste great
 
Wow! I didn't realize how bad my brain fog was until I started taking the new medication to prevent my ovarian cysts! It has really improved and I'm thinking clearer and faster than I did before! My problem solving is MUCH better - I was able to think up a solution to a problem for my mom this past weekend whereas before I was like, "I don't know what you should do." I feel so much better! Ironically enough, I'm on hormones which usually cause tons of problems for me, but this one is helping more than I imagined. I'm still having night sweats, though, but I think that's a side effect of another medication I'm on that was just lowered in dosage by my doctor so it's already improving. Such an awesome feeling when your doctor gives you medicine that helps!

I'm still afraid of long-term side effects, though, because this specific hormone medication can actually increase the risk of blood clots and DVT but my family has no history of blood clots, so my doctor is not concerned at the moment. I'm definitely watching for any symptoms, though - especially in the first year since that's when the risk is highest.
 
MissLeopard83 said:
Wow! I didn't realize how bad my brain fog was until I started taking the new medication to prevent my ovarian cysts! It has really improved and I'm thinking clearer and faster than I did before! My problem solving is MUCH better - I was able to think up a solution to a problem for my mom this past weekend whereas before I was like, "I don't know what you should do." I feel so much better! Ironically enough, I'm on hormones which usually cause tons of problems for me, but this one is helping more than I imagined. I'm still having night sweats, though, but I think that's a side effect of another medication I'm on that was just lowered in dosage by my doctor so it's already improving. Such an awesome feeling when your doctor gives you medicine that helps!

I'm still afraid of long-term side effects, though, because this specific hormone medication can actually increase the risk of blood clots and DVT but my family has no history of blood clots, so my doctor is not concerned at the moment. I'm definitely watching for any symptoms, though - especially in the first year since that's when the risk is highest.
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Brain fog is the worst - I feel like I haven't been out of it for the past 3 years since I got sick. Glad you've found a remedy and hope it continues to work for you!
 
Izzie - I completely understand the teeth thing. Teeth are really important to me, and I've put in a lot of effort to have nice teeth. But now all of sudden, my mouth is like freaking out, and I don't know why. I think it has to be related to everything else that's going on inside me. Side note: have you ever been to the dentist while nauseous? So not fun. Luckily they can do pretty amazing things cosmetically these days, but that doesn't help me feel much better about it.
I'm so glad you're doing CBT. I hope it continues to help you! And that's so awesome that you have that support from your family. That's so important.

Wildmtnhoney - Elimination diets are definitely not fun, but hopefully whatever you end up doing will help with your symptoms. If it helps, it's totally worth it! I think the most important thing when you're on a strict diet is to find as many foods as possible that you can eat. You don't want to get hungry and not have much available....that's the worst!

Ah brain fog. I think it's one of those things that you can't fully understand unless you've experienced it. It makes me feel so dumb sometimes!
 
Had my pre-op appointment today. Went well, though the aftercare seems a bit lacking. I won't even have my staples removed at the hospital, they said I should make an appointment with my GP to do that, and there won't really be a post-op checkup either. I also am apparently meant to give myself blood thinner injections for a week after I've been discharged. Yikes!

But the nurses were very nice and positive, and the surgeon is very competent, if somewhat rushed. He's nice, but like most surgeons he has an odd/not ideal bedside manner :p He's always very rough when doing exams and when he did my last upper scope I was all scraped up in the back of my throat so he doesn't have the most gentle touch ever... However, he's very skilled and I trust his competence and also agree with all of his assessments and concerns, so I'm sticking with him.

I'm somehow both less and more nervous now that it's actually going to happen. Sounded like they're going to try to squeeze me in as soon as possible considering the severity of my symptoms.
 
I just contacted my GI doctor because my appetite has been very poor ever since before my surgery and she was concerned about my rapid weight loss. I missed dinner two nights this week because I wasn't hungry at all - very strange for me because dinner is usually the meal that I enjoy most. I already don't eat breakfast because of stomach problems in the morning that have gone on for longer than I can remember (since my teens, at least). My calorie intake is too low. I've been supplementing with ready made shakes like ProNourish but they are expensive and hard to find. Other shakes upset my stomach/GI tract but ProNourish is low-FODMAP so it's safe. My mom is really concerned because I'm losing weight too fast - I can afford to lose weight but I cannot set myself up for health problems I'm at risk for like gallbladder disease from rapid weight loss. Malnutrition is also a problem - I'm already losing my hair and my thyroid tests normal every time. Not sure what's going on and I'm worried. :(
 
You can order pro nourish from the nestle store
They give a discount and will ship it to you
http://www.nestlenutritionstore.com/products/Digestive-Nutrition/ProNourish.html


Ask the GI office for samples of other supplements to try
You may find a cheaper version or different style that works for you
Some Formula doesn't need to be fodmaps for it to work since semi elemental and elemental are broken down proteins ;)

Doc can prescribe them as well and then insurance covers part throighdurable medical equipment clause (sometimes as infusion therapy supplies )

Good luck
 
I tried ProNourish myself for a little while, but it has carrageenan in it and I really try to avoid that whenever possible. MissLeopard, can you make your own shakes/smoothies? That's what I usually do. Some crushed ice, a banana, some almond milk (or soy or cashew milk), and whatever else you want to add - chia seeds, vitamin or protein powder (I found a pea protein powder that sits well with me, I can't do whey protein), peanut butter or almond butter (I use powdered peanut butter), etc. I also add cocoa powder to make it chocolate flavored. I'm not a breakfast person either, I can't stomach food for the first few hours of the morning, but a homemade smoothie usually goes down okay.
 
I bought some ProNourish at the drugstore by work on my lunch break. They had them in stock, so I'm drinking some now. I found out that Boost Simply Complete is better than ProNourish but they don't carry it, so I'll have to get it at Walmart. It has no additives and no carregeenan AND it comes in Vanilla - my fave flavor.

My GI's nurse responded and said they no longer have a dietician and my GI is out until Tuesday. She thinks that seeing a nutritionist is a good idea but I'm wondering if I need another scope test? I'm not sure what's causing this problem at all. :(
 
ronroush7 said:
Thanks. That gives me another alternative.
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Yeah, I was surprised! I was so glad to find something that didn't have all the junk in it that the others do. Plus, it's low-FODMAP friendly. :)

Anyway, my GI symptoms are getting worse thru the day. My gut has been spasming like crazy and the Levsin is barely doing anything. I just took a Zofran ODT tablet to see if that would help. Thankfully, I get to leave work soon. :)
 
MissLeopard, that sounds like what I went through last year with my flare. I had massive gut cramps almost all the time, had basically no appetite, and what little I did eat went right through me (I was going to the bathroom 20+ times every day for a month). I couldn't sleep nor work. I ended up losing 17 lbs in a month, and couldn't even keep myself hydrated anymore, so at that point they hospitalized me and put me on IV steroids and a liquid elemental diet. Fortunately, the IV steroids and EEN helped. I hope you can figure some things out and get it turned around before it gets as bad as it had gotten for me.
 
Miss leopard, I’m sorry to hear you are dropping weight so quickly. One thing I read about, and experienced, is that sometimes doctors won’t take overweight patients as seriously but they should. Losing x% of your weight is serious no matter where you started, you are still at nutritional risk. My BMI was 28.5 when all the weird stuff started and I lost 20% of my body weight in 6 months, down to BMI of 21.7 or something. That’s a lot of unintentional weight loss. At the end of it, I ended up bruising from massaging myself so I think there were nutritional problems.

I can give you the advice I was given by the nutritionist I found you are interested, but I think protein shakes are a great solution. I also made a lot of fish congee. High protein, easy to digest, and I could get it down.

Good luck with your surgery, Izzie, thinking good thoughts for you.

I’m doing alright. No weird digestive fallout from the pain and low fever the other day. I should message GI nurse about it but things are OK.
 
Thanks everyone. I had a really severe panic attack on the way home from work today and I'm wondering if that and the GI problems are a result of an antidepressant medication I recently started on. Because I'm on the lowest dose, I will not be taking it this weekend to see if that helps matters. If it does, hopefully my psychiatrist can prescribe something that won't bother me and I can get back to feeling normal again. If it doesn't work, it may be that I need to pursue further GI testing. At least I'll know before the weekend is over. :(
 
Well, today everything was fine. My moods were stable and I was able to get a lot of rest. I didn't take the medication last night that I realized was probably causing my symptoms and I seem to have been right. I will be calling my doctor on Monday to let her know of the problem yesterday and that the medication is causing bad side effects.
 
After talking to my doctor's nurse, I will be starting on a different antidepressant. I'm really hoping this one works better for me. I got horrible side effects with the last one which, I'm now learning, are all common side effects with that particular medication. Unfortunately, my family history makes me susceptible to hypersensitive reactions when taking new medications - my grandmother and grandfather both have problems on my dad's side and I take after them. The side effects - besides the rage and severe panic attack with hyperventilation I had on Friday - included profuse night sweating and very low appetite (I was dropping weight too fast). Just didn't seem like the right medication and now I feel much better off it. I knew today would be the real test - I get stressed sometimes when at work. I felt better today than I have in MONTHS.

Anyway, I believe in the power of prayer and I really hope this new medication works. I have another appointment with my doctor next week to give an update and also discuss other treatment options. The past 2 weeks have been pure hell, as far as I am concerned. So glad this week started off better. :)
 
Cat-a-Tonic said:
Izzie, do you have a date for your surgery yet? Keep us posted!
Click to expand...

No date yet! In fact, they're not giving me a date at all. They have someone on staff who schedules surgeries and they're going to call me when they have an appointment. Could be any time, which is stressful. It would be easier to plan if they could actually give you a date ahead of time. Seems like I might know just days beforehand at this point. They did put me on the urgent list though, so I have a feeling it should happen in November at least.

Still very anxious about the whole thing but my symptoms are only escalating and I'm waking up every morning with sores in my throat and mouth due to all the reflux I have at night. I haven't had a pain-free day in... probably a year, honestly.

For now I'm on sick leave, not really doing much of anything day to day and since I live alone that's really really boring. I feel like I should be depressed but am just too fed up with my physical symptoms to really pay attention to how I feel in any other way. Very thankful for books and Netflix and online friends, right now.

Trying to focus on feeling grateful that I have access to FREE medical care - this surgery and week-long hospitalization won't cost me a penny and my surgeon is an attending with a PhD and 20 years of experience performing these types of surgeries. Can't even imagine what it must be like to have the same problems I have and not be able to afford adequate treatment...
 
Izzie, that does sound extremely stressful, that you'll only have a few days notice once they do book you for the surgery! I hope they can do it soon to get you out of this anxiousness and hopefully get you some relief already.

Last year, I was off of work for about a month due to my bad flare & hospitalization, and I watched a lot of Netflix during that time too. I also crocheted a ton. I made several blankets during that month. I find that crocheting is really good for when I'm ill - it's something to do but it isn't strenuous, I can crochet when I'm resting. And it helps me feel worthwhile when I'd otherwise feel worthless. I end up with a finished product that I can either keep or give as a gift or donate. So if you crochet, or knit, or sew, or anything like that, I'd encourage you to do that if you can. It really helped me feel like a human and to feel like I had some value in the world. Not that you don't have value, of course you do, but I know that for me I tend to feel worthless pretty quickly when I'm sick at home, and crocheting alleviates that feeling.

As for the financial side of things, you're right that it would cost a bunch of money here in the US. Last year I was hospitalized for 5 days/4 nights, I had a colonoscopy and a bunch of blood and stool tests done plus I got IV fluids and IV steroids and oral elemental formula during my hospital stay. Fortunately I have decent insurance, so my out of pocket maximum for the year was $2,500. That's still not cheap, but compared to what the final bill was, at least I could afford it. The hospital billed my insurance over $27,000 for my hospital stay! Thank goodness I have insurance, there's no way I could have afforded $27,000. It's just insanity in this country. I managed to pay off the $2,500 earlier this year, which was a relief. But then in July my dog ended up with about $3,400 of emergency vet bills, so now I'm paying that off. It's apparently just impossible for me to ever be financially okay, and my health is a big part of that.

On a completely unrelated note, how difficult is it to emigrate to Sweden? ;) I like Ikea, and I am used to snow. And I hate our current president, that horrible orange man. I'm mostly joking, but sometimes the hubby and I semi-seriously discuss moving to Canada. We like their president much better, and their healthcare too. This country is just one disaster or tragedy after another lately.
 
Cat-a-Tonic said:
Izzie, that does sound extremely stressful, that you'll only have a few days notice once they do book you for the surgery! I hope they can do it soon to get you out of this anxiousness and hopefully get you some relief already.

Last year, I was off of work for about a month due to my bad flare & hospitalization, and I watched a lot of Netflix during that time too. I also crocheted a ton. I made several blankets during that month. I find that crocheting is really good for when I'm ill - it's something to do but it isn't strenuous, I can crochet when I'm resting. And it helps me feel worthwhile when I'd otherwise feel worthless. I end up with a finished product that I can either keep or give as a gift or donate. So if you crochet, or knit, or sew, or anything like that, I'd encourage you to do that if you can. It really helped me feel like a human and to feel like I had some value in the world. Not that you don't have value, of course you do, but I know that for me I tend to feel worthless pretty quickly when I'm sick at home, and crocheting alleviates that feeling.

As for the financial side of things, you're right that it would cost a bunch of money here in the US. Last year I was hospitalized for 5 days/4 nights, I had a colonoscopy and a bunch of blood and stool tests done plus I got IV fluids and IV steroids and oral elemental formula during my hospital stay. Fortunately I have decent insurance, so my out of pocket maximum for the year was $2,500. That's still not cheap, but compared to what the final bill was, at least I could afford it. The hospital billed my insurance over $27,000 for my hospital stay! Thank goodness I have insurance, there's no way I could have afforded $27,000. It's just insanity in this country. I managed to pay off the $2,500 earlier this year, which was a relief. But then in July my dog ended up with about $3,400 of emergency vet bills, so now I'm paying that off. It's apparently just impossible for me to ever be financially okay, and my health is a big part of that.

On a completely unrelated note, how difficult is it to emigrate to Sweden? ;) I like Ikea, and I am used to snow. And I hate our current president, that horrible orange man. I'm mostly joking, but sometimes the hubby and I semi-seriously discuss moving to Canada. We like their president much better, and their healthcare too. This country is just one disaster or tragedy after another lately.
Click to expand...

I understand your frustration! I only have relatives and friends in the US and I cried after your last election :p

I honestly can't imagine living somewhere where your financial situation determines whether or not you have access to sometimes life-saving healthcare. We have private healthcare providers here too so yes the very rich might be able to skip ahead and get better quality of care, but our public health care system is pretty decent, sort of depends on where you live, with access to care guarantees that (should) have you meeting a specialist within 90 days when you need one, and a GP usually within days. I do pay for my doctor's visits, about 20 dollars every time, but as soon as I've paid 100 dollars total, the rest of my visits are free for the following year, then it resets and starts over.

This is hard enough without having to worry about money on top of it all...

Thanks for the tip, I actually do knit (albeit poorly), and that sounds like a fun productive thing to do. I've been so down lately for having to put my life on hold. Frankly, I'm hardly any closer to graduating college than I was almost 2 years ago, I've just been too sick and occasionally too depressed because of being sick that I've failed classes and dropped others and it's just not worked out at all.

My throat is so darn sore today, and the annoying part is I can't even have anything (like ice cream or tea with honey or mints) to soothe it because it all makes my reflux worse. I got heartburn from brushing my teeth last night. It's really reached ridiculous proportions especially considering that I am on 120 mg of Protonix per day, as well as 300 mg Ranitidine.
 

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