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Crohn's Disease Forum

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MissLeopard, eek, you mentioned the two meds I have had major issues with, Compazine and Levsin. Compazine I seem to be allergic to. They prescribed it to me when I first got sick. Not only did it do nothing for my nausea, but it made me feel dizzy too. And then, after trying it a few times over the course of a week or so, it suddenly made it hard for me to breathe. I felt like I was wearing a tight corset over my ribcage, like I couldn't expand my lungs fully. The lack of oxygen in turn made me feel like I was going to pass out. That was terrifying and lasted for about 24 hours. I will never take Compazine again!

Levsin, I wasn't allergic to it, but it did not exactly do good things for me. My GI suggested that he thought it might help "calm" my digestive system, but it basically did the opposite of that. It made me so very nauseous, and I vomited a lot. Even after I stopped taking it, the intense nausea lingered for 2 or 3 weeks after that, and nothing could even touch the nausea. I tried zofran, I tried ginger, I tried peppermint - nada. Didn't make a dent in the nausea, didn't even take the edge off. I could barely eat and I felt horrendous that whole time.

So, be aware that those meds can potentially cause some pretty awful side effects. You might want to try one at a time, so that if you do react badly, at least you won't have to guess at which med caused which side effect. I of course hope that you do not have any side effects, but I felt like I should share my experiences with you just in case you do.

I've taken Compazine before and never had any problems, so I know it's safe. I took 2 doses of the sublingual Levsin last night and it's really helping me with the painful spasms/cramping and doesn't seem to be bothering me at all, which is good. The only one that I haven't figured out yet is the Linzess - I took a capsule today since my bowels are VERY sluggish and quiet and I will probably be staying close to a bathroom since my doctor recommended I take it on a day where I don't have to do anything. Hopefully, it works. I haven't felt anything yet.

Thanks for warning me, however. :)
 
I recall that I was on Levsin for about a week with no issues, and then the vomiting and nausea came on very suddenly - I had eaten dinner just fine, but then suddenly vomited it all up. I vividly remember that my brother was living with me at the time, he had just brought home some Indian food for himself and the smell of it made me have to vomit, and my brother held my hair while I puked in the kitchen sink. Uck. My GI of course advised me to immediately discontinue Levsin, which I did, but I was still so ill for a few weeks afterwards. So just keep an eye on things, just in case. I think I read somewhere that about 5% of people on Levsin get nausea and vomiting as a side effect, so you'll probably be fine, but my experience was just so miserable that I wanted to convey it fully. Those are the only 2 meds listed in my medical file as meds that I should never, ever be given (I told them to put down in my file that I'm allergic to both, even though technically I'm only allergic to Compazine). I literally cringed when you mentioned those two meds! :p But of course your experience will probably be much different than mine, and hopefully you'll have a much better experience than I did!
 
Did anybody ever notice that usually somewhere in the list of a drugs side effects, usually near the top, there is mention of worsening of the exact symptoms that the stuff was supposed to improve? It either gets way better or way worse... go figure!

I have had a few meds that were real doozies too Cat. It's always such a pleasure trying out new medications isn't it? ;)
 
Yep! I swear, every IBD and IBS med they've put me on has worsening gut symptoms as a potential side effect. Even some supplements are like that - I tried a supplement that's supposed to improve bladder health (I have bladder issues too, yay). I will say, it did make my bladder feel noticeably better! But, it made my guts feel pretty foul, so I had to stop taking it. Such fun being a human guinea pig and just trying to feel better but ending up feeling worse. Ugh.
 
Well, I think Linzess is actually helping! Things are definitely moving along and I'm feeling much better. This is definitely not something I would take every day, though, and I'm glad my doctor told me not to - only when I really need it. It's been about 5 days since I've been off the Vicodin, too, which I'm sure is helping, as well, since it slows everything down. I'm trying to make sure I'm continuing to drink as much as I can, which is what I was doing before but it wasn't doing the trick by itself. Still having painful spasms, but the Levsin is doing the trick. I'm only taking that as needed, too, so I don't become dependent on it. So glad to be getting some relief, but I think my IBS is becoming severe and I'm having a lot of gut motility issues now. I wish I could prevent the symptoms instead of treating them because I never feel good when I'm having bad symptoms. :(
 
My doctor was right in telling me I should stay close to a bathroom the first time I take it. LOL! I've gone probably 3 times from the moment I woke up at 10am. I feel much better, though, so I'm not complaining. I weighed myself this morning and was shocked to discover I lost another 2 pounds! My doctor said to let her know if my appetite did not return and/or I was losing weight rapidly, so I'm keeping an eye on it.
 
With small bowel crohn's I suffer from constipation. I was prescribed levsin for gut spasms as well, and ended up constipated from it, despite daily linzess and miralax. Since it wasn't really that effective I stopped it. I just thought you might want to know since you already have issues with gastroparesis.

Hope everything continues to get better.
 
I have always found that a slow taper off the opiates is the best route for me to go. If I stop any strong opioid cold turkey I may as well count on living in the bathroom for the next week. I hope things steadily improve MissLeopard.
 
I have always found that a slow taper off the opiates is the best route for me to go. If I stop any strong opioid cold turkey I may as well count on living in the bathroom for the next week. I hope things steadily improve MissLeopard.

Yes, same for me. I was using it every 4-6 hours after surgery and then alternated doses with Advil until I was able to use Advil for the most part and Vicodin as needed. Finally, I was able to get off Vicodin altogether. It's been about 6 days already and I've also stopped using Advil for the most part because the Levsin has helped greatly with the intestinal cramping and pain. :)
 
Glad to hear it. :)

Thank you. I'm anxious about tomorrow as it's my first day back at work after 3 weeks and I have a lot to catch up on. I'm also nervous because I haven't been doing much outside of the house because I get sore after a bit and I have to get up from my desk quite a bit during the day. I bought a heating pad, however, and will bring it to work with me to use if necessary. I will also keep Advil in my purse to use if needed.
 
Be sure to take it easy and ask for help from a co-worker if you think you might strain yourself. I was always advised that light duty was required for six weeks after surgery. I'm pretty sure the weight limit was 20 pounds. The heating pad and advil sound like good ideas too, even though NSAID'S are bad my doctor has had me take advil on occasion, he said long term use was a bad idea though. Good luck! :)
 
Be sure to take it easy and ask for help from a co-worker if you think you might strain yourself. I was always advised that light duty was required for six weeks after surgery. I'm pretty sure the weight limit was 20 pounds. The heating pad and advil sound like good ideas too, even though NSAID'S are bad my doctor has had me take advil on occasion, he said long term use was a bad idea though. Good luck! :)

Fortunately, lifting is not part of my job description, so no worries about that. I have a relatively light duty job since I sit at my desk for most of the time, though I do have to get up and go to the nurses' stations for various periods to pick up and distributing paperwork. I'll definitely be working my regular hours and not staying any later than necessary. I don't want to push it at all. Since my surgery was outpatient and relatively minor, my recovery has been pretty easy - especially compared to last time since I do not have a painful incision in my pelvic area that is bruised like last time. My gut is giving me more problems than my incisions are. :)
 
ChronicallyAwesome, I hope you get some answers soon! I thought I had bad genes, but DANG. It definitely sounds like an autoimmune disease is very likely for you, unfortunately. But hey, at least if you can get a diagnosis, then you can hopefully get some treatment to help with your symptoms. Keep us posted! I love reading updates from people on here, especially when it's good news. And you never know if something you share might end up helping someone else.

MissLeopard, good luck on your first day back at work! I hope everything goes smoothly for you. I'm so glad you have an awesome doctor! We all know how rare that is. I'm also glad to hear that your new meds seem to be helping your symptoms. That's great!

Does anyone else on here feel even worse when it's that time of the month? (Sorry guys....) My periods were never a good time, but they were manageable. However, since I got sick, they've gotten so bad. I can feel them coming before they even arrive. And I celebrate a little whenever that horrible week is over......although my other three weeks of the month aren't a walk in the park either. Sometimes I wish I was a guy.......:) haha.
 
Akgirl, yes, my periods always made things worse - more cramping, more bathroom trips, looser stools, etc. I did get an IUD back in December, and that's been great - I basically don't have a period anymore. I will occasionally (maybe once every 2 months or so) get a teeny bit of cramping and spotting, but it's over with within an hour or two. And it's totally tolerable, barely even noticeable. It's MUCH better than before I had my IUD, for sure. If you're like me and don't want kids, that might be worth looking into. Even the insertion wasn't too bad. The nurse kept telling me to expect cramps that were as bad as contractions, and the nurse kept hovering over me and trying to hold my hand, and I just laughed at her (couldn't help it) because I didn't need her to! It wasn't nearly as bad as she made it sound like it would be and I didn't need her silly clingy comforting. I had my heating pad on my abdomen for the remainder of that evening after the insertion, but that was it. It's been great ever since. So you might want to look into an IUD. Mine has been nothing but great.
 
Thanks for all of the support! I'm amazed by how active this form is.

I called doctor #1 this morning after I got home from work. The receptionist was...unpleasant. I described what was going on, and that I needed to see my doctor sooner rather than later. She told me that the soonest she could get me is two weeks from Christmas, and that I was not a priority. :frown: (I'm established w/this doctor btw.) I asked her if she could check with the doctor first to see if she could fit me in before then. She said she would, but part of me thinks that she lied about that...I will be surprised if I actually get a return phone call from the doctor.

Anyway, I'm calling my rheumy tomorrow. I'm overdue for a check-up anyway, and I need to review my current arthritis medications with her. She's usually pretty good about "other" things outside her specialty. At the very least, she'll put in a referral to a good GI doc.
 
ChronicallyAwesome:

It sounds like that receptionist is of the "it's all in your head" variety. Before I was diagnosed with celiac disease and was in incredible pain I spoke with the otherwise lovely receptionist at my GP's office. She gently suggested I was just "stressed". In the end I had every radiologist in the hospital at my upper GI series and an emergency endoscopy because there was what looked like a hole in my duodenum. With symptoms like yours you should be a "see as soon as possible" patient. I'm so sorry. I hope your rheumatologist is helpful.
 
ChronicallyAwesome:

It sounds like that receptionist is of the "it's all in your head" variety. Before I was diagnosed with celiac disease and was in incredible pain I spoke with the otherwise lovely receptionist at my GP's office. She gently suggested I was just "stressed". In the end I had every radiologist in the hospital at my upper GI series and an emergency endoscopy because there was what looked like a hole in my duodenum. With symptoms like yours you should be a "see as soon as possible" patient. I'm so sorry. I hope your rheumatologist is helpful.

I agree. I also hate when non-medical staff attempt to judge the severity of your concerns. I'm one of those people that doesn't like to go to the doctor for anything, and my doctors know that if I've actually went through the trouble of making an appointment, I'm pretty sick.

It appears that my rheumy is also booked for the next couple of months. I took the closest possible appointment and sent her a message for an emergency appointment. In the mean time, I think I'm at the mercy of the ER if something else happens between now and then. The lump/mass is still there and hasn't moved, although I have noticed some pain with the lump & general tenderness in my overall abdomen, including on the opposite right side. I'm currently bouncing back and forth between constipation, diarrhea, and mild nausea. Still no appetite. I've lost weight, too. We shall see... :eek:
 
Hey ChronicallyAwesome,

That's not fair when a receptionist just brushes you off like that. I have had it done to me before and it is very upsetting. I hope you are able to be seen sooner rather than later.


Hang in there,

Chris
 
I managed to get an emergency appointment with my rheumy. She immediately suspected Crohn's or UC as the cause of my symptoms. She ordered some lab tests and an abdominal CT scan. She also referred me to a GI doctor.
 
ChronicallyAwesome that's great. I'm so glad your rheumatologist (at least) is listening to you and cares enough to help. Let us know how you are doing.
 
Cat, your IUD sounds awesome! I'd love to have hardly any periods. I recently went off my birth control pill (which I've been on for 9ish years) to see if that will help with any of my 5 million symptoms.....try to balance my body out or something. I don't really know. I'm grasping at straws here. I talked to my GP about it, and she said that she thought it was a good idea for me to go off the pill because if I have IBD then the pill could increase my risk of blood clots and stuff. If you're concerned about the possibility of me having IBD, then why don't you try treating me for it?! Aaarrrrrggghhhh. Today is one of those days where I'm mad at the world. But honestly that's basically every day now. At this point it just feels like everyone has forgotten about me. I actually think it's easier for people to just ignore me and act like I don't exist rather than to realize how much I'm suffering and try to help me. Ignorance is bliss, right? But it's like purposeful ignorance. It's honestly the strangest thing though. I tell my close friends and family that I don't want to be alive anymore (I'm not suicidal.....I just don't want to live like this anymore), and they literally don't care. They basically just ignore it. I'd like to just go live in the middle of nowhere with my cats. Okay, done with my whining.....

ChronicallyAwesome, it sounds like your rheumatologist is one of the rare doctors who actually listens! Hold onto her! Hopefully this will be a big step in the right direction for you. Definitely keep us posted!

How's everyone else doing?
 
Chronically Awesome - sorry to hear about the receptionist, but glad you were able to get through to your rheumy. That's great the tests are already ordered. I hope the GI can see you soon.

Miss Leopard - my test was like that too. One egg, 2 pieces of white bread, jam, water. The bread and jam may have been buttered. I had 12% left after 4 hours and their cutoff was 10% so I wasn't diagnosed with gastroparesis. My GI nurse and I both thought mild gastroparesis was the best explanation for a lot of my symptoms and weight loss but it was post infectious and the test wasn't given until 4 or 5 months after I had the infection when all my symptoms were much milder (though still there). That said, the dietary recommendations for gastroparesis helped a lot so I just followed them.

AKgirl- my periods always caused bad cramping and diarrhea, even before I had GI issues. I got an IUD over a year ago to prevent blood loss (anemia issues, but other issues make it better not to take iron. I did have bleeding early on with the IUD - one stint with 10 days straight for no reason. Eventually the heavier bleeding stopped, though. My periods aren't totally gone, but it's just spotting really and no crazy cramps. It helped a lot for me though it isn't enough to stop my needing extra iron. Might be worth a go. Also, I was having problems with Depression and I think a lot of it was from all the difficulties relating to my chronic back pain. I didn't see a therapist, though that would have been a good idea, but I told my back doctor who I am pretty comfortable around and he put me on an antidepressant that is also used for pain. (Cymbalta). It hasn't fixed everything but it was helpful both for pain and mood. I just asked to increase the dose as I would like more help with the depression. I am really tired from it, but that went away last time and hoping it will again (fingers crossed). I think it's pretty normal to have problems with depression with chronic illness and there are things they can do to help. (Hugs)

I wanted a bit of Home treatment advice. For some reason I am having bad intestinal cramps today. They started during the night and I slept really poorly. It eases up a bit sometimes but at other times it really hurts. It feels like cramping and my whole abdomen feels tender. This isn't an ER issue or anything like that, but any advice on home treatment that might help? I tried a heating pad and it helped a bit. I am backed up atm and I used some glycerin suppositories to move things along and that helped a bit. Took some Colace this morning.

I think I ate too much yesterday. I haven't been interested in food recently and my weight is dropping a bit but I've made myself get enough protein and a decent amount of calories. This morning I was burping and it tasted like my protein drink from 12 hours ago. I think I may be having a spell of the mild/borderline (undiagnosed) gastroparesis that caused me so much weight loss this year. I think I can keep my weight from falling too much, but I really need to do something about the pain.

Any advice for making it hurt less?
 
Dahlia, do you have anything like bentyl/dicyclomine for cramps? That's what I take, sometimes it works okay and other times it doesn't really work for me. Maybe call your doc and see if they can prescribe an anti-spasmodic like that for you as it could help. I unfortunately haven't found anything that's a surefire way to stop my gut cramps, though. A heating pad or a hot bath can help some. Distractions can also help - if you can watch a movie, or knit/crochet something, even build something with legos (since my hospitalization last year, that's become my favorite distraction, and now I often have a new lego set put aside for the next bad belly day). Anything like that which isn't physically taxing but distracting enough to at least partially help you forget the cramps even for a few minutes.

In my experience, colace can sometimes cause some cramping too. Do make sure to drink a lot of water if you're backed up, that will help. I was always told that room temperature water is best, not too cold, as cold water can also cause cramps. Feel better!
 
Akgirl, you mentioned stopping birth control pills - I stopped taking birth control pills shortly after I got sick. I was having so much diarrhea that I was scared that I wasn't absorbing enough of my pill, and I don't want kids at all, but I especially did not want an oopsie to happen when I was already so ill! So at that time, they switched me to nuvaring, which worked well for me for about 7 years until I got the IUD. And I recall that I did feel much better for a few days after coming off of the pill, I don't know if it was my hormones adjusting or if by having the ring that I was actually getting the proper amount of hormones, or what. The only reason I came off the ring and switched to the IUD was that I was terrified by the incoming presidential administration and their stance on women's reproductive rights. I had read online that many women freaked out and got IUDs in December right before the inauguration, and I'm definitely one of those women! I had the added benefit of having had already reached my out of pocket max on my insurance last year, so I didn't pay a dime for my IUD.

As for family members not caring, I've been there and done that too. My mother still thinks that gluten is the root of all evil and that if I just went gluten-free that I'd magically be cured forever. My brother has some sort of undiagnosed mental illness, and he very incorrectly thinks that I can somehow just wish myself into being better. I'm not even joking, he's literally told me that if I want it badly enough that I can make myself better. I was like, um, no, and thanks for being super rude and victim-blaming. I had to block my brother from my facebook page because I just couldn't deal with his nonsense anymore. Thank goodness for this forum, because I know you guys get it. And I hope you do have at least one or two supportive people in your life. For me, my dad really tries to be supportive. He's totally clueless, I can see complete lack of comprehension in his eyes whenever I try to tell him anything to do with medical terminology, but he cares and that's enough. He's the only person in my life who asks me how I'm doing, and when I automatically say I'm fine because that's just what we do even if it's a lie, he says, no, really, how are you really? He can see through that BS facade of "I'm okay" that I put on when really I'm not okay. So I hope you have somebody like that in your life, too. If not, please know that all of us on the forum do get it and do care about you and go through similar stuff and are here for you. :)
 
Hey Dahlia,

Sometimes gas can be very painful for me. I have been known to take Eno and have had nearly instant relief from bad cramping. You have to separate it from other meds by a couple hours or so, it says on the literature inside the box. It might help.
 
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.
 
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.
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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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.

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.
 
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.

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.
 
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.

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.
 
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?

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. :)
 
I am sorry things did not work out but I am glad you have the support of your family.

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...?

:/
 
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...?

:/
That is wrong he is treating you like that. I hope you feel better soon. Keep us updated.
 
That is wrong he is treating you like that. I hope you feel better soon. Keep us updated.

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.
 
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.
Sending support and prayers.
 
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.
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.
 
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.

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.
 
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

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.... :(
 
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.... :(

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.
 
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.

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.
 
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.

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!
 
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.

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.
 
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.

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!
 
Seek a second opinion! Even if you do "just" have IBS you deserve a compassionate doctor who will help treat your pain and symptoms!

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.
 
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.
Never ever give up. You have plenty of support here.
 
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.

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
 

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