Undiagnosed Club Support Group

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

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.... :(
Click to expand...

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.
Click to expand...

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.
Click to expand...

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.
Click to expand...

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.
Click to expand...

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!
Click to expand...

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.
Click to expand...
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.
Click to expand...

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.
 
Last edited:
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.
Click to expand...

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.
Click to expand...

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.
Click to expand...

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.
 
A $100 yearly out of pocket max!! That's it, I'm moving to Sweden. :p

In all seriousness, though, finances have been really rough for me lately. I didn't mention this in my post above, but I had saved some money and bought a new (used) car in July. I had saved $7,500 and spent $6,000 on the car. I figured having $1,500 as an emergency fund would be fine for the time being, and that I'd save up some more money to replenish my savings. It seemed like a quiet time in my life, I had just paid off my medical bills, my health was relatively stable, my old car was very old and quirky, and it seemed like good timing to buy a car. Well, it turned out not to be - my dog got sick literally 3 days after I bought the car. She had to be rushed into emergency surgery which cost $2,500 for the surgery itself, plus a few hundred dollars more for tests & bloodwork and whatever else. And then 4 days after her surgery she started having seizures and we had to rush her back to the emergency vet and that was another several hundred bucks. All of that ended up going on the credit card, because the $1,500 ended up obviously not being enough of an emergency fund. So it's been rough emotionally and financially. I feel like I'm in a deep hole and trying to dig my way out with a teaspoon. I'm really trying not to flare in response to the stress, because I know that more medical bills will just set me back even further.

As for the election, I cried basically non-stop for the first day after, and I cried a lot during that first week. I rarely cry about it anymore, now I mostly just get really angry about it (it's like I'm in the stages of grief). The man is about as horrible as a person can get, there's not one good or presidential quality about him - and I don't understand how we haven't impeached him yet. It's baffling to me, and it's like living in a nightmare. It used to be that healthcare was really my only reason for wanting to move to a different country, but now I have so many more reasons than just that for wanting to move away from here! It's like watching a train wreck, but the train cars just keep coming and wrecking, coming and wrecking, it never ends. There's no caboose on that train. It's endlessly horrifying, each day brings some new terrible thing. I don't like to get too political on here, so I'll end this rant, but sufficed to say that that horrible orange man (I hate saying his name) is just the absolute worst, ever.
 
I'm always around if anybody gets bored or anxious. I know what it's like getting a last minute call for surgery... very stressful. I may as well have been stuck sitting on the edge of a cliff for a week trying not to nod off. I'm here for you if you need me... and even if you don't! ;)
 
Thanks, cmack! It's such a huge help to be able to connect with people who have been through similar experiences. No one in my life that I can talk to has gone through major surgery at all, so it's a brand new things for me.

When I'm not freaking out about the big stuff (like whether or not I'll be able to eat normally ever again post-op, if I'll need a feeding tube, the fact that I'm scared I'll die etc.) I freak out about the small stuff. I'm going to have a large, about 6-inch long scar from my sternum to my belly button after this surgery. Which is a small small price to pay for health, if the surgery is successful. But it's still a small concern. I'm single and am going to have to actually try to date at some point in the future and I'm worried the scar will be ugly and I'll feel unattractive. A petty thing to worry about in the midst of illness and pain, but it's still something I'll have to deal with.

Social aspects are a big deal to me. My social life has gone to hell the past few years because I've been unable to eat with other people without a lot of awkward discussion and/or pain and flaring symptoms. I feel like my world has shrunk to the size of my apartment, my doctor's visits and procedures, and talk about my medications and symptoms and pain. The risk of needing a feeding tube post-op worries me mostly because of how I'll have to deal with it in social situations.
 
Hey Izzie,

You can just call me Chris. I understand about the stuff you are going through, and though it sucks right now it will get better. The social life may suffer as it has for me too, but you find out who really has your back, and it's usually just family. This is an easy way to weed out the posers who are "fairweather friends" as I call them. I have scars that I don't like too, don't worry, I'll just get some ink put over it one day.


Chat me up any time,

Chris
 
Izzie, I personally think scars are interesting and show that you have character. It's like, you went through something rough but you're still here and have this scar to show for it, it's like a badge of bravery. And like cmack said, you can put a tattoo over it once it's fully healed. My aunt did that, she broke her neck in a car accident and had to have a metal rod put in to fuse her neck vertebrae, so she has a huge scar on the back of her neck. She put a big tattoo over it a couple years later after her doctors gave her the all clear to do so. Personally I'm not a tattoo person, but it's an option for you if you do like tattoos. And, if someone doesn't want to date you because you have a scar - they're obviously not somebody worthy of dating you anyway! Everybody has flaws, scars, emotional baggage, etc. If somebody can't see you for the good person you are, scars and all, then they're a loser who doesn't deserve you.

It sounds to me though like you're worrying about the scar because the other things to worry about are too overwhelming to think about? I can imagine it would be absolutely paralyzing to have to think about life with a feeding tube, so your worries are maybe being redirected to something that you can visualize easier, which is the scar? Just me playing armchair therapist so feel free to correct me if I'm wrong. It does sound absolutely terrifying to me, and it's okay to be terrified. You're in a crappy situation for sure - you can't keep living like this, but there are potentially a lot of scary things that can happen with your surgery. I can't say anything that will make those scary things seem less scary - they are scary, and you have every right to be terrified. All I can say is I'm also here for you if you need to talk.
 
Armchair therapist has a very good point :p

It's true that all the potential negatives are definitely too much for my brain to handle. I appreciate that my surgeon is a realist who doesn't sugar coat things but at the same time I have a lot of worst-case scenarios in my head that I would prefer weren't there. I just want to get it over with so I can start a new chapter of this whole mess at least. I have a (very frustrating) tendency to ruminate over things, the wait for this and not knowing a sure date is not the best approach for my anxiety brain...

Actually I think a lot of my stress is just piled up anxiety and stress from the past few years. Now that a possible "solution" is on the horizon it's like it hits me just how much I've put up with and how not okay that feels. I'm not good at being sad but I am sad, and I don't think I know how to handle that.

And thank you, so much. The support of everyone here has been immensely helpful and a huge factor in me even having the strength to continue pursuing diagnosis in the beginning when everyone insisted I was "just stressed out".
 
I just have to pop back in and say thanks again to Little Penguin -- that site is super friendly and helpful!! I am in the SOFEED study now, and got randomized to the SFED (of course I didn't get "lucky" and get dairy only first, lol!) and it while it has been totally overwhelming these first few days, knowing I have a site with support, even if I'm just reading other past posts, and an awesome database of foods...omg, it helps soooo much!

I am trying to read and keep up, too, but I really am not good at it right now -- but Izzie, I am so sorry you're in this "sad" and stressful position, I can only imagine the stress of all the unknowns! Cat, oh, financial worries can add so much to our plates, {hugs} to you, too! -- sorry that's all I've got, reading backwards for a minute


I wish everyone health and peace, always
 
Izzie, I feel like by this point I'm pretty good at being sad, so here's what works for me when I'm feeling sad:

Distraction is the first thing. If I can just distract my brain away for a little while, it helps. When I was in the hospital last year, my hubby brought me a couple of small Lego sets, and putting those together really helped. It wasn't strenuous, but it was enough to keep my mind occupied on that task and therefore kept my mind off of how I was feeling and what was going to happen next. If you can do a jigsaw puzzle, play a game, build a Lego set, anything like that - it should help at least in the short-term. Something that'll take your mind away, even briefly, from how scared or awful you're feeling.

Pampering and treating myself to gifts is also good. When I feel sorry for myself, sometimes it helps to make myself feel pretty or buy something new. If that means painting my nails, doing fancy mud masques on my face, buying myself little presents like new jewelry or yarn - whatever it takes to cheer myself up. I've heard the term "survival bribe" which means that you either do something nice for yourself or buy yourself something nice, to reward yourself for keeping going or to keep yourself going when times are rough. So, if you need to bribe yourself with gifts and pampering, that's definitely okay. And online shopping counts too if you're too ill to leave the house.

The other thing I've found, and this might be me being a horrible person, but it's schadenfreude. It makes me feel better to see people who are in worse situations than I am. I like watching those documentary-style TV shows, like "Intervention", where people are on drugs and their lives are a mess and their family hates them and they're homeless. It's probably awful of me, but it makes me feel better, because at least I'm not as bad off as those people on the show are. When I am really sick and feeling sorry for myself, I like to be able to say, well at least I'm not on heroin (or whatever) and I live in a house. It's a guilty pleasure for sure, but it honestly does help. Again, that could just be me, I'm probably terrible because of that!

Wildmtn, thank you. Between the financial worries and my dog having end-stage cancer, it's been a rough summer. I hope your study goes well!
 
Cmack, that's true! I've done that too. Last year, prior to being admitted to the hospital, I was in the ER getting IV fluids (I think it was the 2nd time, and I got admitted on the 3rd time). I was sitting there, feeling sorry for myself. There are a bunch of little rooms with the nurse's station in the center of the ER. My room's door was open so I could hear what was going on at the nurse's station. I heard a call come in, an ambulance was coming with an urgent patient and I'll never forget the words they said - "Gunshot wound to the head". !!! Suddenly I didn't feel so sorry for myself! I felt pretty lucky all of a sudden. That sure put things into perspective.

Edited to add: I looked in the news later, and it was a teenage kid who had been shot. He survived, though.
 
Survival bribe!!! I do that all the time (probably too often), but I didn’t realize it had a name. Even if it just cheers me up for a few minutes, I think it’s worth it. When you don’t have much happy in your life, sometimes you have to make it. I love ordering stuff online (I’m unable to go to the store right now anyway), because I get to track the package, and have it delivered, and open the box, and finally get the thing! It’s like unwrapping a present for myself.

It’s crazy how much I can relate to what you guys say on here. You don’t realize how comforting it is! Well actually you probably do....but it’s awesome to be able to read posts from people who get it.

Izzie, I’m so sorry for everything you’re going through. As therapist Cat said, I know there isn’t anything I can say to make you feel better but just know that I’m here for you and I’m thinking of you. You completely do have a right to be terrified. I’m hoping that your surgery will be scheduled soon so that you don’t have to keep worrying about it. I’m a total ruminator too, so I get it. Do you have any pets? I get really lonely sometimes, but honestly my cats help me feel like I’m not so alone. I talk to them like they’re people. I make jokes with them and laugh by myself. These are probably all signs that I’m losing my mind, but it’s helping me survive! (When I was little, I had imaginary friends that I’d play with outside, and I’d literally just be outside playing basketball by myself and talking to myself. For hours. So at least talking to my cats seems less crazy than that!)

Cat, I’m totally down to move to Sweden or Canada with you, if you want an American friend there! I’ve tried to convince my husband to move to Canada (I even looked up houses for sale to try to entice him), but he works for the federal government here, so that might not really work too well. We live in Alaska, so I told him that Canada would basically be the same, just with a better government and healthcare system.
 
oh...the timing of the "survival bribe" post was just what I needed! I have been pouty about not getting to eat so many things, and last night I was feeling especially bad after going out w/dh and not being able to have hardly anything at the place we went (pout!) so since I didn't spend much at the bar/restaurant, I took myself shopping for a bit of facial stuff and tiny bit of makeup, and now I get to play with that today! Yay!


edit - PS -- although it seems to be a trigger food for some (Cat I know it is for you) I am sooo thankful that my dietician and allergist assured me that coconut is NOT a treenut, and I'm allowed it on this diet! I am having SoDelicious brand coconut creamer in my coffee, and their "icecream" isn't half bad either!
 
If anyone is interested, I had originally heard the term "survival bribe" in an article, which I found again and the link is here:

https://www.xojane.com/healthy/japanese-7-elevens-anxiety

(She also talks about the wonderfulness of Japan in that article, which I agree with 100%. Japan is wonderful, Japanese 7-11 is wonderful, Japanese vending machines are wonderful. That would totally be my survival bribe too if I lived in Japan.)

Wildmtn, I'm glad you can enjoy coconut! I used to love it, Mounds bars were my favorite. But when I got sick, suddenly coconut was my #1 worst trigger. Even a little bit of it will make me sick for days now. So please enjoy lots of coconut on my behalf! Enjoy your facial items, too - I've also recently made similar purchases. Last week we had a cold, rainy weekend, so I had bought myself some mud masques and peel-off masques for staying in and pampering myself a bit (my skin has been a mess thanks to pred anyway).

Akgirl, I may take you up on that offer to move to a better country. As for talking to your pets, I do that all the time with my pets too! And it seems that my dog understands a fair bit of what I tell her, and sometimes she even tries to speak to me too (seriously, one day she was owed a treat, but I was putzing around too much for her liking, and she growl-woofed at me, in such a way that made it sound as though she said "hurry up!"). I have 4 pets and I'll probably be losing 3 of them soon. My dog of course has terminal cancer. I also have a gerbil who is super old - he's 3 years and one month, which is ancient for a gerbil (I've had many gerbils in the past and they tend to live to about 2.5 years max typically, so my 3+ year old gerbil has got to be like 100 years old in gerbil years!). I also have a praying mantis, they don't live very long so I'm not expecting him to stick around much longer. My cat is 14 and I keep telling her that she needs to stick around for a few more years at least!

And as for imaginary friends, I don't have them per se, but I do have an imaginary alternate life that I imagine for myself in which I'm not sick, have plenty of money, have a better job or am well off enough that I don't have to work, and have fantastic abs. :p You gotta dream big, right? ;)
 
My "survival bribes" as of late has been books and movies. Digital ones, as I find clutter incredibly stressful and don't necessarily like bringing in new stuff into my home. Digital books and movies mean I can bring a whole library wherever I go, which is awesome. Also recently splurged on a new, extra portable laptop for that same reason.

I've also needed to buy lots of new clothes quite often in the last 6 months or so since I keep losing weight and needing new pants :p
 
Chris, we’re almost neighbors. :)

Cat, I love your imaginary life! Mostly the fantastic abs hahaha. It’s good to dream! I always look for houses for sale in my area because it helps me dream about a future where I’m healthy and can work and can live in a nice house. I don’t want a mansion or anything, just a nicer place with a bigger yard.

I feel like nail polish is one of the best little gifts for myself. It’s cheap, it doesn’t take up much space, and it’s nice to have my nails look pretty when the rest of me isn’t feeling so great.
 
I am having such a hard time with food right now. There's really nothing I can eat without pain, so I've tried mostly living off Ensure for the past few days, which helps, but also still gives me heartburn. I'm hungry all the time but if I try to eat anything at all with some substance, I'm in agony for 2+ hours after. I had half of a sandwich (white bread, low-fat cheese, literally the most boring sandwich ever) a while ago to try to at least not be starving when I try to go to sleep in a couple hours, but now I feel like I'm having a heart attack. Whatever inflammation I have going on in my esophagus/possibly also stomach just makes it feel like my chest is going to cave in on itself every time I eat.

I think I'm managing about 800 calories per day, maybe 1000 on a good day. It's about time to go shopping for new pants again :p

Calling the administrator who plans surgeries tomorrow to try to get some idea of when they're going to squeeze me in. Trying to convince myself I'm at least in the final stages of this particular misery and whatever happens after surgery will be something different and hopefully better...
 
Izzie - is the food list on the Crohn's forum at all helpful? I dont have Crohn's but when I was having problems after a GI infection, that list was a lifesaver. It matched what I could tolerate much better than anything else I found, including low fodmap or low fiber. I lived off fish congee when I was stuck in those calorie ranges. I also like muscle milk more than ensure. I seem to need a lot of protein, just in general, so that may be why. Good luck waiting for your surgery. I’m really hopeful that it will make things better for you.

Do you guys have any suggestions on helping depression without drugs? I have an appt with my GP to talk about changing/adding meds (on an antidepressant to help with back pain but need something else/more) but I need to try to make things better in the meantime. I’ve been having a difficult time this past week and have kind of gone numb and I’m trying to do what I can while I can still see that its not right. Any ideas? Nothing that involves sitting or driving or standing, but I’m OK walking or laying down. Hugs and petting my dog are what I have come up with so far.
 
Dahlia said:
Izzie - is the food list on the Crohn's forum at all helpful? I dont have Crohn's but when I was having problems after a GI infection, that list was a lifesaver. It matched what I could tolerate much better than anything else I found, including low fodmap or low fiber. I lived off fish congee when I was stuck in those calorie ranges. I also like muscle milk more than ensure. I seem to need a lot of protein, just in general, so that may be why. Good luck waiting for your surgery. I’m really hopeful that it will make things better for you.

Do you guys have any suggestions on helping depression without drugs? I have an appt with my GP to talk about changing/adding meds (on an antidepressant to help with back pain but need something else/more) but I need to try to make things better in the meantime. I’ve been having a difficult time this past week and have kind of gone numb and I’m trying to do what I can while I can still see that its not right. Any ideas? Nothing that involves sitting or driving or standing, but I’m OK walking or laying down. Hugs and petting my dog are what I have come up with so far.
Click to expand...

Thanks for the tip!

I find that when I'm depressed it helps to distract myself with enough upbeat things to keep me going through my day. Can you listen to audio books or podcasts maybe? Taking walks is usually good I find but sometimes I end up thinking too much about whatever bad things are going on in my life, so distractions like podcasts, or even music, tends to help.
 
Dahlia said:
Do you guys have any suggestions on helping depression without drugs? I have an appt with my GP to talk about changing/adding meds (on an antidepressant to help with back pain but need something else/more) but I need to try to make things better in the meantime. I’ve been having a difficult time this past week and have kind of gone numb and I’m trying to do what I can while I can still see that its not right. Any ideas? Nothing that involves sitting or driving or standing, but I’m OK walking or laying down. Hugs and petting my dog are what I have come up with so far.
Click to expand...

I've been struggling with my depression and anxiety worse than usual lately. What I've found helps me is watching my favorite TV shows - cooking shows, The Office, ER, Antiques Roadshow, etc. It helps me get my mind off whatever is bothering me and helps me focus on something positive. When I had anxiety attacks in my teens and early adult years, I watched Red Skelton over and over again and I have nothing but love for that man. He helped me get thru so much! His performance for the Queen is my absolute favorite show, but I laugh at any of his antics. They are available on YouTube and Amazon - watch the bloopers and ad-libs show. I promise you will not be sorry!

Just be gentle with yourself. I don't know about you, but I have a tendency to obsess over tiny things when my anxiety is out of control and that's not helpful at all. Any way you can get your mind off it until you are fully equipped to deal with any situation is a plus. :)

Red Skelton's Royal Command Performance

The Best of the Red Skelton Show
 
I've been having some pretty severe intestinal cramping today. I tried the Levsin earlier and it barely touched me. I just got another bout and took another Levsin (the other was over 8 hours ago). I'm thinking it's too weak and I may need something stronger. I remembered that a former GI recommended Donnatal which I've read is great for severe IBS sufferers. I have an appointment with my current GI on Thursday and I plan to discuss it with her then. I know I do well with scopolamine because I received a patch prior to my surgery last month and it really helped. I'm just not sure if my insurance will cover it - a lot of my medicines required prior authorization including Linzess. Anyway, I know she will have some good tips.

Also, I just got an appointment set up today with a nutritionist at a local hospital to help me lose weight and control IBS symptoms. I'm hoping they can give me more direction on low-FODMAP diets and a good meal plan because I'm having trouble coming up with variety in my diet that won't affect me.
 
MissLeopard: I've seen two separate nutritionists in the past year for my issues and they've been really kind and helpful - I hope the same will be true for the one you end up meeting! Do make sure to ask for the information printed, or bring along something to take notes on. I remember thinking my nutritionist gave me tons of good ideas only for me to forget most of them by the time I got home.

As for me, I messed up a bit today. I had a small piece of chocolate, thinking I could just have an antacid after and it wouldn't affect me too much... Oh boy was I wrong. Really bad reflux this evening. At least this time I feel like I did something to set it off so it feels less hopeless than when it happens when I've had a drink of water. At least the chocolate was tasty, I guess.

On a brighter note, my anxiety has decreased a lot over the past week. I think I've just reached a level of acceptance that I need this surgery and that I'm grateful to be able to have it done. CBT therapy is really working for me, I think. I'd recommend it to anyone else who has anxiety.
 
Izzie said:
MissLeopard: I've seen two separate nutritionists in the past year for my issues and they've been really kind and helpful - I hope the same will be true for the one you end up meeting! Do make sure to ask for the information printed, or bring along something to take notes on. I remember thinking my nutritionist gave me tons of good ideas only for me to forget most of them by the time I got home.

As for me, I messed up a bit today. I had a small piece of chocolate, thinking I could just have an antacid after and it wouldn't affect me too much... Oh boy was I wrong. Really bad reflux this evening. At least this time I feel like I did something to set it off so it feels less hopeless than when it happens when I've had a drink of water. At least the chocolate was tasty, I guess.

On a brighter note, my anxiety has decreased a lot over the past week. I think I've just reached a level of acceptance that I need this surgery and that I'm grateful to be able to have it done. CBT therapy is really working for me, I think. I'd recommend it to anyone else who has anxiety.
Click to expand...

CBT worked/is working wonders for my anxiety, too. I'm switching therapists, though, because mine is not doing as well for me as she used to and I'm not getting as much benefit as before. I'm continuing with her until January because there's a long waiting list for the therapist I hope to see - my appointment is 1/13. My current therapist and I meet every 3-4 weeks usually. :)
 
Today I woke up and my throat was barely sore! :yfaint:

Probably because I had a lot of Gaviscon before bed, and managed to stay on my side instead of flopping over on my stomach in my sleep, but wow, it was great!

My swallowing is absolutely abysmal right now. I tried having some sweet potato earlier and it just got stuck and it makes me not want to eat anything solid at all really. I'm going to need to prepare for that being a bigger issue after surgery.

I did however make a big investment in a Vitamix blender. First time I started it I actually jumped a little it's so LOUD and insanely powerful. But it completely obliterates anything you put into it, so it was money well spent that way. So many awesome smoothies in my future. :thumleft:
 
I'm going thru a lot of stress right now at work - I met with my boss on Monday and have a follow-up with her tomorrow but I have a feeling it's not going to go well. I really want to give my notice but I don't have another job lined up and I cannot afford to go without health insurance so I feel stuck. I have a manager who I feel is bullying/harassing me, but no one seems to validate my feelings and that makes me even more upset. If I hold in my feelings, I implode. If I air them out, I get in trouble for appearing like I am overly sensitive. UGH!

Anyway, I have an appointment with my GI tomorrow in the afternoon and I'm glad because my IBS is getting even more severe. I am not doing well on the Levsin as I was originally and need something stronger. My gut is producing all sorts of excessive mucus and I was insanely bloated yesterday and so uncomfortable! I did some research and remembered my former GI mentioned Donnatal for severe IBS. It appears to work better than Levsin but I'm not sure if my insurance will cover it - they appear to want prior authorization on anything specialty prescribed. Gotta love those HMOs! I hope we can figure something out.
 
MissLeopard83 said:
I'm going thru a lot of stress right now at work - I met with my boss on Monday and have a follow-up with her tomorrow but I have a feeling it's not going to go well. I really want to give my notice but I don't have another job lined up and I cannot afford to go without health insurance so I feel stuck. I have a manager who I feel is bullying/harassing me, but no one seems to validate my feelings and that makes me even more upset. If I hold in my feelings, I implode. If I air them out, I get in trouble for appearing like I am overly sensitive. UGH!

Anyway, I have an appointment with my GI tomorrow in the afternoon and I'm glad because my IBS is getting even more severe. I am not doing well on the Levsin as I was originally and need something stronger. My gut is producing all sorts of excessive mucus and I was insanely bloated yesterday and so uncomfortable! I did some research and remembered my former GI mentioned Donnatal for severe IBS. It appears to work better than Levsin but I'm not sure if my insurance will cover it - they appear to want prior authorization on anything specialty prescribed. Gotta love those HMOs! I hope we can figure something out.
Click to expand...
MissLeopard, I hope they can get you on something that helps soon.
 
Izzie, glad to hear you had a moment of feeling somewhat better! As for the chocolate, that sets off my reflux in a big way, too. Usually I can get away with one piece of chocolate but not more than that. Yesterday though I couldn't even get away with one piece. I hope the smoothies help! Hopefully they can allow you to stop losing so much weight. Any word yet on the surgery date? I hope it happens soon!

MissLeopard, I'm in a similar boat. I'd love to quit my job too, but like you I also cannot go without health insurance. I feel pretty stuck. As for your feelings, I think you need to find a constructive or creative outlet. Can you punch a punching bag to relieve some of the stress? Or take a long walk? Exercise always helps me feel mentally and emotionally so much better. Of course, if you're not feeling up to it, then exercise isn't always feasible. Do you do anything creative - paint, sculpt, draw, sew, knit, etc? I sew and crochet, and those activities help me relieve some stress and relax and focus my thoughts. Even just meditation might help. Good luck, I hope you can find another outlet for your stress & emotions besides bottling it all up or getting in trouble.
 
Cat, it's usually not a huge trigger for me but something I definitely normally do not have and have not had for... months and months. Biggest trigger for me is coffee, which I gave up ages ago. Everything sort of sets me off these days.

Though to be fair many of my worst problems are strictly mechanical in nature. My poor motility which causes swallowing issues is a big one. They're thinking surgery could help it or make it worse, they don't know since they don't know the cause of it. I could also have a general motility problem that hasn't been diagnosed yet, in which case it will be worse after and I might need a feeding tube...

And I also just have pain from my stomach herniating into my chest every time I breathe. I get a lot of stabbing chest pains that aren't really from reflux in and of itself but rather from the hernia.

Reflux in the traditional sense is really only one of many reasons I decided on surgery.

Symptoms have been a bit calmer and more manageable the past couple of days, I've had a few hours here and there that have been terrible, but not 24/7 like it usually is. Starting to feel a bit more human and am actually hoping to go to an event tomorrow to escape my apartment for a while.

And regarding jobs, I quit my job recently actually. Since my health insurance has nothing to do with my employment I was able to do so without much of a fuss. Again I'm reminded of how different it is to be sick depending on where you live. My illness, while it's set me back a whole lot in terms of my education and job development, has not had much of a financial impact on me at all. The one thing that's cost me money is the fact that it's affected my teeth. Dental care you do pay out of pocket here if you are over 20 years of age. I sympathize with those of you who have to weigh in finances when you make decisions regarding your health!
 
Cat-a-Tonic said:
MissLeopard, I'm in a similar boat. I'd love to quit my job too, but like you I also cannot go without health insurance. I feel pretty stuck. As for your feelings, I think you need to find a constructive or creative outlet. Can you punch a punching bag to relieve some of the stress? Or take a long walk? Exercise always helps me feel mentally and emotionally so much better. Of course, if you're not feeling up to it, then exercise isn't always feasible. Do you do anything creative - paint, sculpt, draw, sew, knit, etc? I sew and crochet, and those activities help me relieve some stress and relax and focus my thoughts. Even just meditation might help. Good luck, I hope you can find another outlet for your stress & emotions besides bottling it all up or getting in trouble.
Click to expand...

It's starting to cool off so I can start exercising again - I don't handle heat well at all. I used to have an exercise bike but had to move it out of my room into the garage due to lack of space after my room was redone. I have been trying to convince my mom to allow me to get an emotional support animal - my doctor is on board, but my mom says we don't need another dog in the house (I was supposed to move out next month, but that's a long story). I'm trying to slowly present why I feel I would benefit and ease her concerns. It would be helpful to have a dog specifically for that purpose. Our dog is really sweet, but she gets distracted easily and is not really suited for anxiety problems since she has anxiety herself (hence why another dog would be helpful; she came from a 4 dog household when we adopted her). :)
 
MissLeopard, you're in Florida, right? I didn't even think of that, I bet it is quite warm there most of the year! I also don't do well with heat so I can completely understand that. Too much heat & humidity make my guts cramp up horribly. Fortunately (?) I live in Wisconsin, and it's been in the 40s here this week (it was 75 degrees on Saturday so the weather got cold in a hurry!). I can't seem to win, though. My guts hate the heat, and my joints (hips in particular) hate the cold. So in the extreme temps, I do poorly. I do okay this time of year, though. It's not bitterly cold or snowing yet, so my joints are mostly okay, and even when it's 75 degrees, my guts are okay with that.

As for getting an emotional support dog - would you have to get a specially trained dog, or would you train the dog? Would you just look for a dog with the right personality and temperament and train it to suit your needs?
 
I think dogs are great, but regarding the punching bag. I do put the gloves on and punch the heavy bag a couple times a week, I kick it too! LOL ;) I know it lowers my stress levels.
Even our Prime Minister is a boxer. :)
 
Cat-a-Tonic said:
MissLeopard, you're in Florida, right? I didn't even think of that, I bet it is quite warm there most of the year! I also don't do well with heat so I can completely understand that. Too much heat & humidity make my guts cramp up horribly. Fortunately (?) I live in Wisconsin, and it's been in the 40s here this week (it was 75 degrees on Saturday so the weather got cold in a hurry!). I can't seem to win, though. My guts hate the heat, and my joints (hips in particular) hate the cold. So in the extreme temps, I do poorly. I do okay this time of year, though. It's not bitterly cold or snowing yet, so my joints are mostly okay, and even when it's 75 degrees, my guts are okay with that.

As for getting an emotional support dog - would you have to get a specially trained dog, or would you train the dog? Would you just look for a dog with the right personality and temperament and train it to suit your needs?
Click to expand...

Yes, I am very heat intolerant - I can't stand to get sweaty because I feel miserable and dehydrated. I like the crisper, cooler weather that we are experiencing right now but I can't stand damp, dreary weather with a wind chill - that flares my bursitis and I feel TERRIBLE.

As for an ESA, they are different than service dogs in that they don't go everywhere - they can fly with you, but they stay home the rest of the time. They are there to provide companionship. Most ESA dogs are not trained to perform tasks, but I plan to train it to sit in my lap when I need comfort because applying weight during anxiety really settles me down. Just cuddling my current dog helps, but she has a short attention span - although she saw I was visibly upset on Tuesday and came to my aid and wouldn't leave my side. She was very sweet and helpful. I need a dog to do that regularly. I plan to take it to obedience classes and crate-train it. I'm on a list for a puppy from a reputable breeder who has knowledge of ESA dogs and what traits would be the best. She has promised to help me find a puppy to meet my specific needs - I just need to get my parents on board. My doctor has already written my letter of recommendation for an ESA, so I'm allowed to get one. :)
 
BTW, the Donnatal website has a voucher where patients with and without insurance can pay only $15! If my doctor says it's OK for me to try, I won't have to pay so much! My insurance will not cover it so I had planned to see if she could prescribe the active ingredients in the same dosage and I would combine them, but I really wanted to try the Donnatal elixir liquid as it works better than the pills. The only other thing that I can think to try is the Scopolamine patch like the one I had for my surgery - that really helped! And then I would use the Linzess for constipation issues. My appointment is today so I'm really glad. :)
 
Hi guys, I'm new to the forum but just after a little advice, I've suffered with IBS for around 18 years, but symptoms have been very minimal for around 4 years now and had no medication at all since. For the last 3 months or so I have had mucus & bleeding, sometime feel like a need a BM and all I get is a little bloody mucus..occasional constipation but no diarrhoea or pain, no other symptoms.
I've been to the GP who's done bloods and 2 stool samples. Bloods and first sample came back fine, second sample has come back as inflamed bowel. I'm not sure on my readings until I speak to the GP tomorrow, but I'm starting to panic that it may be something really serious. Thank you in advance for any advice x
 
Kirstym91 said:
Hi guys, I'm new to the forum but just after a little advice, I've suffered with IBS for around 18 years, but symptoms have been very minimal for around 4 years now and had no medication at all since. For the last 3 months or so I have had mucus & bleeding, sometime feel like a need a BM and all I get is a little bloody mucus..occasional constipation but no diarrhoea or pain, no other symptoms.
I've been to the GP who's done bloods and 2 stool samples. Bloods and first sample came back fine, second sample has come back as inflamed bowel. I'm not sure on my readings until I speak to the GP tomorrow, but I'm starting to panic that it may be something really serious. Thank you in advance for any advice x
Click to expand...
Welcome. I hope it is nothing more than IBS . If you think it is more, keep fighting until you get answers. Let us know.
 
Nhs.....if its a borderline result they may repeat the test again, if its a higher result, they send you off for usually a colonoscopy.
Try not to panic too much.make you feel worse!
Good luck tomorrow
 
It’s good you’re going to speak with your GP tomorrow. I’m sure further tests will be ordered. The inflammation could be due to an infection. Blood in your stool always warrants a work up but try not to worry.
 
Thanks for your replies guys. I know I'm a worrier anyway, but it is difficult not to. I'm starting to worry about cancer and things like that which I know is silly, at this early stage, but I have a 7 month baby which only makes me worry more. I spoke to my niece today who works in the GP surgery, and she says she thinks my result came back at 130, I'm not sure if that's good or bad.
 
Finally found some Boost Simply Complete to try (the Vanilla flavor, my fave!) at Walmart. I put a bottle in the fridge and plan to try it either tonight or bring it to work with me tomorrow for breakfast. I have to say, I find it ironic that the Simply Complete is more low-FODMAP friendly than the ProNourish - both made by Nestle. The Boost has less ingredients and all of them are pronounceable. I hope it tastes good!

I think my new antidepressant might be starting to work - I've been on it for 1.5 weeks now and notice a difference. The crazy thing is that I'm starting to wake up without my alarm clock (often times, way before my alarm goes off) and I'm feeling less moody. I'm glad because work and my health have both been pretty bad lately and I've had 2 instances of suicidal ideations - the first passive and the second active. I talked to a counselor on the Suicide Hotline who helped me with some positive outlets. Today, I bought materials to knit and crochet so I'm hoping that will help with my anxiety and stress levels. I also like to color and I have a lot of adult coloring books. I plan to play my flute again. Hopefully, all this will allow me to transition to feeling depression and anxiety-free very soon (it takes about 8-12 weeks for this medication to reach full effect). I hate having suicidal thoughts and I'm praying that they do not return. The active thoughts scare me the most because I have never thought seriously about killing myself than I did at that moment. That was horrible and I really don't want to do something I'll regret. :(
 
Hi MissLeopard,

Be sure to tell your doctor if you keep having those kinds of thoughts. I hope the new medicine is helping, but be aware that antidepressants can often times have the side effect of suicidal thoughts or tendencies. As long as things are getting better and not worse hopefully all is well. Feel free to reach out if you need to vent, I'll lend an ear if you are feeling down.


Warm regards,

Chris
 
Welcome Kirsty,

I think your best course of action is not worry too much and just let the doctors do what needs to be done to treat your bleeding and inflammation. Keep asking questions and make sure to get them answered. Hopefully you will have a diagnosis soon and you will be able to successfully treat whatever it is that ails you. Keep in touch.


Welcome again and good luck,

Chris
 
MissLeopard83 said:
Finally found some Boost Simply Complete to try (the Vanilla flavor, my fave!) at Walmart. I put a bottle in the fridge and plan to try it either tonight or bring it to work with me tomorrow for breakfast. I have to say, I find it ironic that the Simply Complete is more low-FODMAP friendly than the ProNourish - both made by Nestle. The Boost has less ingredients and all of them are pronounceable. I hope it tastes good!

I think my new antidepressant might be starting to work - I've been on it for 1.5 weeks now and notice a difference. The crazy thing is that I'm starting to wake up without my alarm clock (often times, way before my alarm goes off) and I'm feeling less moody. I'm glad because work and my health have both been pretty bad lately and I've had 2 instances of suicidal ideations - the first passive and the second active. I talked to a counselor on the Suicide Hotline who helped me with some positive outlets. Today, I bought materials to knit and crochet so I'm hoping that will help with my anxiety and stress levels. I also like to color and I have a lot of adult coloring books. I plan to play my flute again. Hopefully, all this will allow me to transition to feeling depression and anxiety-free very soon (it takes about 8-12 weeks for this medication to reach full effect). I hate having suicidal thoughts and I'm praying that they do not return. The active thoughts scare me the most because I have never thought seriously about killing myself than I did at that moment. That was horrible and I really don't want to do something I'll regret. :(
Click to expand...
Sending support
 
cmack said:
Hi MissLeopard,

Be sure to tell your doctor if you keep having those kinds of thoughts. I hope the new medicine is helping, but be aware that antidepressants can often times have the side effect of suicidal thoughts or tendencies. As long as things are getting better and not worse hopefully all is well. Feel free to reach out if you need to vent, I'll lend an ear if you are feeling down.


Warm regards,

Chris
Click to expand...

Thank you. My psychiatrist is aware and thinks that we need to give the medicine time to work. I live at home with my parents still, so she doesn't feel I need to be hospitalized at this point. I was on Prozac before which really caused problems with my mood swings and was the catalyst for suicidal thoughts - it appears to be leaving my system completely and the Celexa - which I am now on - appears to be working without causing more problems. She thinks the Prozac provoked anxiety attacks in me and made my symptoms worse. I see my doctor again this week on Thursday, so I'll provide an update.
 
cmack said:
I'm glad you are doing okay. :) I'm at home with the folks too so I can relate in some ways for sure.
Click to expand...

Me, too. I was really worried last week because I have been having problems with a manager at work and told my boss about it. She and the HR director do not agree with me, unfortunately, so I'm looking for new opportunities elsewhere. This is not a one-time thing, either - it's been going on for over a year and I'm tired of it. Obviously, nothing will change if my boss (also the manager's boss) doesn't agree that the situation is a problem. I talked to my doctor and therapist about it and they think I need to get out of the environment. I wish I didn't feel the need to leave - I made a lot of friends there and did really well when I started to about a year later and then things changed for reasons I'm unsure of. I'm looking at Indeed for job opportunities and hope to get callbacks soon. The only problem that I foresee is not having FMLA at a new job for a year and having doctor appointments for my chronic conditions. I need to find a boss who is understanding of my need to keep my appointments - especially my psychiatrist and therapist.
 
So I've mentioned it in another thread but not in here yet - I got laid off last week. My financial woes just went to a whole new level. I think I'll be okay - am getting severance pay and can also collect unemployment, and can cobra my insurance. It's so stressful, though. I'm really trying to do as much self-care as I can. I was having walks and going to the zoo and botanical garden (both free), but then I caught a cold, so I can't take walks again until I get over this cold. Ugh ugh ugh. I worked for the same company for nearly 15 years and they threw me away like a piece of trash. It sucks.
 
Well, I tried crocheting last night and it's not easy. LOL! I'm definitely starting slow. I watched some YouTube videos and think I figured out the chain crochet but the second row part is messing me up! My chains won't stay tight, either, no matter how tight I hold them. I tried knitting instead, but I don't remember how to do the set-up so I'm going to have to ask my mom to remind me tonight (she was sleeping last night while I was trying to figure it out). I thought crocheting would be easier because it's one hook, but it's very difficult to learn!
 
Well, I think I figured out why I'm having so much trouble! I bought plastic hooks to start out with but every video I see has aluminum hooks and the hook end looks much bigger than the plastic ones. Mine don't seem to want to "grab" the yarn like it should. I will try to stop at a store tonight on my way home and see if I can get the correct hooks. Hopefully, it will make it easier. I also found an easier tutorial video:

https://www.youtube.com/watch?v=aAxGTnVNJiE
 
I know I've been posting a lot today and I apologize but I wanted to share some good news! My depression definitely seems to be lifting and I am much more clear-headed today (I suffer from brain fog due to depression, hypothyroidism and fibromyalgia). Of course, it's a day-by-day thing and I need to give the medication time to reach it's therapeutic level (8-12 weeks) but I'm just thankful for any good days. :)
 

Similar threads

K
Possible Crohn’s disease
Replies
10
Views
2K
musicalwiz
M
Papantoine
Neglect?
Replies
3
Views
902
jadegreen
J
R
Nearly 4.5 years in with Crohn's.
Replies
3
Views
2K
ronroush7
ronroush7
C
Your thoughts, please. 10 yr old.
Replies
37
Views
4K
mohanskin
M
N
Advice on diagnosis
Replies
1
Views
1K
Scipio
Scipio

Latest posts

Back
Top