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Izzie said:
Well if they don't find anything at your first GI appointment, that doesn't mean you're fine. Trust me, I know :p

Besides if your GP thinks something is up, and with the problems you've been having, I think it's unlikely that it's all in your head. Even those who do have physical problems that come on because of stress or whatever aren't "all in their head". They're still problems.

Make sure they hear what you're saying at the GI, is all I can tell you. And if they come up with some "diagnosis" or say it's IBS, ask them to explain why they think that's what it is instead of any number of other things it could be. Accepting what doctors say without explanation wasted a LOT of time for me at the beginning of this whole mess.
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I'm aware of this, but unfortunately, it keeps playing on my mind. I think what is playing on the back of my mind is they are going to tell me I do not need any further testing and will just fob me off with some alternative therapy or blame mental health on it.

Good idea, I will ask why they think this. I've had blood etc. in recent times, and new pain, so I know they will need to be investigated - either by my GP or the GI. I've written it all down. In detail and a summary, but I'm still concerned I've written too much! :ybatty: We shall see.

I've been sat at my desk all day with my hot water bottle. I was already tired, but this is far too comforting and making me even sleepier! But it's not really helping my stomach, it's just... comforting. It feels really nice. Just wish I didn't feel hungry. Yesterday I reached for some things that I really wasn't allowed, and today I've managed to resist. Somehow. Just need the fructose-ridden things to get out of my system and the cravings will go. Just need to be strong today. Going to head to the gym in half an hour and try and do a light session. I feel like I'm wasting money by not going, but I really just do not know if I don't have the energy or I just honestly cannot be bothered. It may also make me feel better.
 
Izzie, I don't so much get angry days, mine are more like sad/depressed/pity party days. I usually just accept them and allow myself to have whatever emotions I need to have that day and kind of get it all out - cry, vent, call in sick and avoid the whole world and feel sorry for myself, cry some more - so that the next day I can be okay. So yeah, I think that's normal when you're dealing with an illness like this and your doctors are jerking you around. It's okay to have days where you're really not okay - as long as you're mostly okay the rest of the time and not utterly depressed 24/7, then I think it's fine. That's how I've been operating, anyway.
 
Cat-a-Tonic said:
Izzie, I don't so much get angry days, mine are more like sad/depressed/pity party days. I usually just accept them and allow myself to have whatever emotions I need to have that day and kind of get it all out - cry, vent, call in sick and avoid the whole world and feel sorry for myself, cry some more - so that the next day I can be okay. So yeah, I think that's normal when you're dealing with an illness like this and your doctors are jerking you around. It's okay to have days where you're really not okay - as long as you're mostly okay the rest of the time and not utterly depressed 24/7, then I think it's fine. That's how I've been operating, anyway.
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Yeah that's a good point. It just boils over now and again and you need to get it out some way or another. The bad side to that is that most people who hear me vent are the people who are really there for me and I feel like they shouldn't have to take that, I should be grateful and happy for them since they help me so much.
 
Hello everyone, my name is Justin and I have just recently started dealing with symptoms related to IBD. I recently took Clidamycin and Amoxicillin at the same time for an boil infection. I had diarrhea following it for two days, followed by by a week of constipation. Ever since then, I have had constant lower stomach and back pain, pelvic pain, rectal pressure and mainly solid, but sometimes lose stools. I had a colonoscopy and was said to have mild proctitis. My doc has refused to diagnose me with either of the two IBDs. What led me here was through my Google research lol, they said patchy inflammation is more in connection with Crohns.

Rectal Biopsy
- ACTIVE PROCTITIS, MILD TO MODERATE
Sections show increased numbers of chronic inflammatory cells in lamina proprua for this far distally, with scattered neutophils in the lamina propria as well. Changes of chronic colitis are not seen. No granulomas are seen. No dysplasia is seen.

My proctitis was described as patchy and I was wondering could that be the final indicator of Crohns. My colon was clear with the exception of mild patchy, inflammation in the rectum. I was wondering if anyone experienced test results similar. My doc is hesitant to give me a diagnosis for my problems. It has been going for two months now. I had a C Diff scare, that somehow cleared on its on.... But I was left with this proctitis. I know a few people on a c diff support site that had proctitis after and it went away, but these colon results does not give me that comfort.

So, I have now been suffering two months with no diagnosing and stuck with Canasa suppositories that are not working.
 
Izzie said:
Yeah that's a good point. It just boils over now and again and you need to get it out some way or another. The bad side to that is that most people who hear me vent are the people who are really there for me and I feel like they shouldn't have to take that, I should be grateful and happy for them since they help me so much.
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I'm glad you have people for you though, hun! :) I've just given up with complaining about my pain, because it has become literally so constant and I'm having like a crushing pain under my ribs at the moment. Literally think this is the only place I can whine about pain as we are all in the same boat!

@Jab0066 - Welcome to the forum! May I ask how they declared you have mild proctitis? Could they see it with an anuscope, or did they have to do a full or just a sigmoid scope?

If you do have patchy inflammation, that is more likely to be Crohn's as UC will affect parts of the colon, and not in patches, depending on how far the disease has spread.

Sounds as if you are almost diagnosed! However, judging by the fact you have proctitis and your colon is clear, this could well be the start of UC or CC. Most UC'er's start with proctitis, and it can spread.

What other suppositories have you attempted? I have potential procititis myself and it's nice to find somebody that is undiagnosed like myself with proctitis too. Hope you feel better soon and hope you get a diagnosis soon!
 
Hi Justin, welcome to the forum. I'm going to tag Cross-stitch gal as I know she has Ulcerative Proctitis and she might be able to give you some information about how she got diagnosed and what her treatments have consisted of, etc. (Thanks, Cross-stitch!) I don't know a lot about proctitis myself but I hope you're able to get things fully figured out and get on a good treatment for it.

How's everybody doing today? I'm not good and I partially did it to myself. I had salad for lunch yesterday and let's just say that didn't go well! I can sometimes get away with salad - in fact, I just had salad for lunch on Sunday as well, and that went fine. But yesterday's salad, not so much. I ended up with nasty cramps and passing undigested chunks of lettuce last night, bleh. So yeah, the salad I did to myself. But I'm also having some hip pain today and I don't know the reason for that. My bad hip is usually okay as long as I exercise it regularly (stretching and strengthening, but no high-impact exercises). I just did my hip exercises and stretches yesterday and I didn't do anything high-impact so in theory my hip should be fine. The weather doesn't seem to be the cause either - it poured rain yesterday and the hip was fine yesterday. It's sunny today and the hip is aching today, hmph. If the hip is going to ache, it usually aches before or during the storm, not a day after, so that makes no sense to me either. So anyway, between the guts and the hip, I'm not doing so great and am in a bit of a grumpy mood. I don't want to do much of anything today, I kind of just want to hibernate and avoid the world. I'm running out of sick days though so I need to push through. Not happy about that. Not happy about anything today! *grumble grumble*
 
Hiya Justin! I know little to nothing about proctitis, so I'll let those who do chime in.

Sorry you're off today Cat. I am too. I was doing so well for a bit, the RLQ pain just simmering...then last night it decided to act up again - boo! I also have a new pain in the knuckles of my right hand. I dyed a friend's daughter's hair, and the hand hasn't been the same since. It HURTS, in achy way - similar to my arthritic knees and I don't want to think that way. I see my GP Friday as a follow-up for the antibiotics, so I'll bring it up then, I guess. So I'm a bit grumpy with ya. I see the acupuncturist again today. I like to think it's helping. My knees are actually doing better. I've noticed I can walk farther and go up and down the stairs more often at home with less pain, so there's that for sure. And until last night the belly seemed to have chilled a bit. OH! And I think my thyroid is messed up again! I have GAINED 2 pounds this week, and I filled up my hairbrush this morning, making me think we lowered my dose too much, since I wasn't super high 3 weeks ago. Darn it all.
 
Sorry to hear that Cat and Honey! I'm feeling off too. I had some kebab meat, and for the first time ever, it feels like I'm going to throw up. It could have been a combination of foods, but probably that. Pain is a better than most days, but I am a little dizzy today. I just want to go home!
 
On another note, I really hope I am not annoying people. I am becoming conscious that people don't like me in places! :( It's not a nice feeling, but maybe I complain too much - so, sorry if I annoy any of you guys on here!
 
kellehbeans said:
On another note, I really hope I am not annoying people. I am becoming conscious that people don't like me in places! :( It's not a nice feeling, but maybe I complain too much - so, sorry if I annoy any of you guys on here!
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Oh not at all! If there's any place where complaining is okay then it ought to be here, not that you do much of that anyway. You're all good :thumleft:
 
Izzie said:
Oh not at all! If there's any place where complaining is okay then it ought to be here, not that you do much of that anyway. You're all good :thumleft:
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Sorry for the random outburst. The guys at work seemed to rip into me today for being who I am, and also I found out that one of the girls I used to do my therapy group with, has deleted me from facebook, but not all the others. I don't know whether its because we have a mutual friend and she does not want to have to explain to them why they know me, but I took it really personally. Like, I found her very supportive before. In anger, I left the support group we created after our therapy finished. I was very upset, and I am still pretty hurt. I just feel pretty low about it, plus I feel like I can't be myself any more. I think everything is just getting to me at the moment. I just feel like I whine too much on here, and this is support I really do not need to lose, because you guys in this forum are probably the best support I can have for this process. :( Plus, we are all going through the same thing, so we can all easily relate.

This goes back to the conversation you guys were having earlier on about having low days etc.
 
Kelleh, no worries at all, hun. We're here for you no matter what! You do not whine too much, I promise. You talk about very real issues which affect you deeply and we all support you - we don't see it as whining and we're all going through similar stuff. You don't need to apologize or worry, we're all in this together and we're all here for each other. Sending you a big virtual hug!
 
So today I realized I've actually GAINED weight, which is not ideal. Probably because I don't move around as much as I used to but for the sake of the GERD I need to reverse that trend. Ugh. It's strange because I can't really eat a lot of the things I would usually think of as "healthy", and my diet currently is pretty carb-heavy because bread/rice/pasta etc. are among the things I tolerate.
 
I'm sorry you're not feeling well Cat. :( I know you've been struggling a bit especially lately and hope that things will start settling for you soon. :hug:

On to you're question.

Yes, Justin (jab0066) I was diagnosed with Ulcerative Proctitis in 2013 as you can see. I'd been in a 2 year long flare in which my original GI had misdiagnosed me with Crohns and was pushing me to start the big drugs like Remicade and Humira.

This new doctor of mine believe it or not, basically just groped my stomach and asked me a few questions and told me he was sure I had Proctitis but wanted to know for sure. A couple of days later he did a flexible Sig and there it was confirmed.

At the time I was taking Predisone along with too much Pentasa for my size (the dose of Pentasa was actually poisoning me). So, he had me end the Pred, decrease the Pentasa and add the Canasa suppositories. Along with changing my diet a little bit with more homemade dinners, additional fiber fruits and vegetables, etc. I'd been sick so long it took awhile to heal. But, I'm doing a whole lot better now.

Now, remember that not all of us with Ulcerative Proctitis are the same. But, if you're interested in checking out the Ulcerative Proctitis Support group there are others as well with Ulcerative Proctitis. Also, feel free to pm me if you like and I'll see if I can answer further questions. I hope this helps.
 
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Thanks, Cross-stitch! :) Yeah, I've been up and down for awhile now. Lately I seem to be more down than up. How are you doing, how's the job thing going, did the transfer to another department ever go through?

I'm still feeling rather grumpy today - guts are a bit better but not great. Hip pain seems to have eased up though which is good. I'm such a germophobe and I had a bit of a germ scare today. I went into a bathroom stall at work earlier today and saw that there were a couple tiny drips on the toilet seat, and they were pink-ish. It looked like puke. That made me wonder if the person who had used that stall before me had puked? Then I started to worry, because if whoever it was has norovirus, that stuff is super contagious and you can apparently catch it just by breathing the air in the area where someone has just puked - so if it was norovirus, I was already exposed just by breathing the air in that toilet stall. So I freaked out! On top of everything else, I really really REALLY don't need to catch a stomach bug. So that had me super worried. I tried talking some sense to myself - if norovirus was going around at work then I would have heard about it already (I talked to my most gossipy co-worker earlier today and she said nothing about anything going around). Plus, I don't even know for sure that the tiny pink drops were indeed puke. And even if it was puke, the person who puked could have food poisoning or morning sickness (or IBD!) or any number of other causes besides norovirus. So I'm just trying not to think about it. I just seriously don't want a tummy bug and I'm such a germophobe so it is worrying me.

On a related and slightly more light-hearted note, when you think germs are around so you wash your hands a lot and try not to touch your face because those are the two biggest ways to prevent getting infected yourself - does anybody else notice that when you can't touch your face, that's when your face itches a ton? :p This is another reason why I don't wear makeup, by the way. When I know I can't touch my face, suddenly everything on my face itches and I want to rub my eyes and scratch my nose and just basically touch my entire face. It's ridiculous. It's not like I'm constantly touching my face at all other times, but I feel compelled to touch and scratch my face when I know I can't/shouldn't. I'm probably just super weird, ha ha.

Izzie, my weight is up right now as well, surely from all the steroids I've been on lately. I have about 10 lbs I need to lose to get back down to my "healthy" weight. I work out regularly but my weight doesn't budge with exercise alone, and my diet like yours is pretty limited (except when I cheat and have a salad or pizza and then pay for it). So, I don't have an answer for you but I'm struggling with the same thing. It's hard to lose weight when you're on a limited diet to begin with! :(

Kelleh, I hope you're feeling a bit better? I really do mean what I said, you're not a complainer and we all value you and support you and you support us as well. :) You've been nothing but kind and wonderful since you joined the forum and we absolutely don't view anyone here as a whiner - maybe if you were coming on here and complaining about stuff like, you have a hangnail or you got a bad haircut, then you might be verging on being a whiner. ;) But you're dealing with real, serious health stuff and so are the rest of us so we all get it and none of us thinks you're a whiner. We care about you even if we've never met you (and if we did meet you I think we'd all just give you a big group hug!).
 
I know this is fairly morbid but since getting ill so frequently I can feel myself generally getting more overwhelmed with things, even really insignificant things...to the point where I am debating whether I am depressed. It is not every day but at least half I would say, and when it strikes I can get a little...suicidal...I don't think I would ever act on it but lately I have found that I do think about it quite a lot. Does it ever cross any of your minds?
 
Megan, I do get those thoughts too from time to time - mainly on the pity party days that I was mentioning to Izzie, but like you said I would never act on those thoughts and I really only have them on my occasional pity party days. I get caught up in a cycle on those days, of thinking things like, "This is how my life is going to be forever, I'll always be ill and I'll never be well and things will never be better than this and I just don't want to do this anymore." I find those thoughts are really destructive and not helpful to me so I try to push the thoughts out as much as I can.

Do you have anyone to talk to about this? Feeling overwhelmed and insignificant are definitely signs of depression. Would you be open to talking to your doctor about it? Talk therapy and/or antidepressants can be really helpful for a lot of us. And please, keep in mind, it's not your fault. For one thing, you're dealing with a serious chronic illness and that is devastating. For another thing, depression is actually a physical symptom of IBD - there have been studies recently showing that an inflamed bowel affects in some ways how the body and brain respond to serotonin. They don't fully understand it yet, but it seems that depression is literally another extra-intestinal symptom of IBD (and likely other illnesses as well). Treating the underlying cause should help the depression ease, but while you're still undergoing the diagnostic process, something like antidepressants could really help you feel better. Also, some antidepressants have the benefit of helping the bowels as well - nortriptyline and amitriptyline both have properties that, for some people, can help ease chronic pain and can "calm" the bowels (as my GI phrased it to me). I'm on amitriptyline myself, although I'm on a low dose as that's meant to help prevent my migraines.

I hope that helped a little bit. I really hope you're able to feel better both physically and mentally very soon. Big hugs!
 
My goodness Cat!!! I was worried about my long reply and then saw that yours under mine was even bigger!!!! HeHe!!!

No, the transfer never went through and I'm still fighting for one. But, at least they are getting to where they need to go now rather than my manager sitting on them. Still stressed and frustrated. But, I am on vacation!!!! So, other than the packing for heading up to the in-laws tomorrow I can honestly say I'm better than fine!!!!

I'm more than happy to help where I can though...

Megan, Cat said it all for me. But, one thing I can say is that we're all here for you. There is always someone on here to talk to any time of the day/night. We can also be paged just like Cat paged me. Sometimes it'll take a bit for us to get it. But, many times this is all it takes to get someone to talk to. So, please feel free to do so.

I too hope you can get taken care of both physically and emotionally soon. Sending lots of hugs your way.
 
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meganwilson1991 said:
I know this is fairly morbid but since getting ill so frequently I can feel myself generally getting more overwhelmed with things, even really insignificant things...to the point where I am debating whether I am depressed. It is not every day but at least half I would say, and when it strikes I can get a little...suicidal...I don't think I would ever act on it but lately I have found that I do think about it quite a lot. Does it ever cross any of your minds?
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Short answer...yes. There is help. PLEASE talk to your doctor.
Sending you my support. I hope you start feeling better soon.
 
kellehbeans said:
I
@Jab0066 - Welcome to the forum! May I ask how they declared you have mild proctitis? Could they see it with an anuscope, or did they have to do a full or just a sigmoid scope?

If you do have patchy inflammation, that is more likely to be Crohn's as UC will affect parts of the colon, and not in patches, depending on how far the disease has spread.

Sounds as if you are almost diagnosed! However, judging by the fact you have proctitis and your colon is clear, this could well be the start of UC or CC. Most UC'er's start with proctitis, and it can spread.

What other suppositories have you attempted? I have potential procititis myself and it's nice to find somebody that is undiagnosed like myself with proctitis too. Hope you feel better soon and hope you get a diagnosis soon!
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Thanks for the welcome everyone!!! Kelleh, it was diagnosed with a full colonoscopy with results not showing active colitis. I am assuming that it just isn't active yet. My GI just said hey, you have proctitis, no colitis or Crohns due the lack of cryptic changes in the biopsy (whatever that means). I tried Canasa and I felt like it maid whatever progress I was having feeling better reverse double time. I caused me lots of bloating and looser stools. I actually have no blood or mucus. I have solid stools. I am just in constant pelvic pain, back pain, bloated and extremely gassy all day. I have been in pain for two months which isn't that long compared to most people on these forums. But, it feels like its been forever since I have felt like my normal, outgoing self lol. This may sound sad, but I miss my weekends drinking at the bars. I get sick right as sports season starts lol. Well, my doc thinks it could be left over inflammation from my C Diff infection that somehow disappeared on its own which I question I had in the first place. I took two terrible antibiotics at once, Clidamycin and Amoxicillin. Big mistake lol. How were you diagnosed? What is holding your GI back from labeling you proctitis?
 
Thanks Cross-Stitch, I have been sitting at home the past two months hoping that I have some type of acute proctitis, but as fail to feel any better as time goes along, I don't have much faith that that is the case. I am thinking those antibiotics set it off. It was weird. Two days of those monsters, and then wake up one night with diarrhea, followed by another day of diarrhea, followed by two weeks of constipation. Then, I just have been in non-stop pain since. It was really weird. Also, thanks for referring to the group. I will join it as well. Also, 2 years of consistent symptoms sound awful. I am glad you finally got the right diagnosis before they started you on the big guns.
 
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Izzie, I feel you on the weight gain. I have gained 30lbs (OK, I was underweight at that point) and I do not feel good at this rate. I am blaming the fact I sometimes get this stomach ache that makes me feel hungry, even after food, and the only way I can cure it, is eating more. Gaviscon doesn't help; nothing does. It's a pain. So, completely with you on that point. Weight always seems to be a struggle! :hug:

Cat, thank you. All of what you are all saying really does mean a lot. I guess I was just feeling low yesterday. I realised that even more so when I was on my way back home, because for some reason, I started feeling anxious of my boyfriend going away with the 'lads', and I NEVER get anxious about that kind of thing! Yesterday was an off day, most definitely. On the plus side, stomach pains did not really bother me after the morning yesterday, just some dizziness and nausea for about an hour in the afternoon. So thank you, I am feeling a bit better. Although, stupidly have 3 chocolates last night and I spent half of my evening waking up, feeling 'windy' and/or needing to go to the toilet. Not sure if that's an IBD trait, or an IBS one really!

Hope you're feeling better, seems to be that you're having a really rough time! :(

Megan, the overwhelmed thing sounds more of a trait of anxiety than depression, although both usually come together. Just take it easy. I can see why anxiety spurs on people when they are under pressure of being undiagnosed or even diagnosed. You have to worry about every little thing you put in your mouth, worry about how you're going to feel to go to that family party, etc. so it could start to leak into every day life. I'm really sorry to hear you're going through this. I will say though, that's not a morbid thing. As you have probably seen, a lot of us have mental health issues - me being diagnosed with anxiety, depression, BPD and bulimia. So, please don't worry. We are here to support you. :hug: But as DJW says, if you are really concerned, go and see your GP.

Jab, ahh! I see! Possibility of us being near enough the same then. :) Although, proctitis can be caused by other things that aren't ulcerative colitis or Crohn's. Although, I have a little blood now and again (but probably from fissures/haemorrhoids) and I have *lots* of mucus. They're not holding back from diagnosing the proctitis, they just don't know yet! The anuscope could only just see how swollen everything was from inflammation in my rectum - I think I need a proper colonoscopy to see how far it has spread. I have my first GI appointment today, so we shall see how that goes and what they say. :)
 
Kelleh, waking up with pains and/or the urge to "go" is definitely an IBD thing, not an IBS thing. When you see the GI (today, right?) make sure to mention that as one of your symptoms. Good luck if I'm remembering right and it is indeed today! I saw your other thread and it sounds like you're really prepared with written notes and everything, so I hope it's a good appointment and that the doctor is good. Keep us posted on what happens!

Thanks, Cross-stitch. I hope you have a good vacation! As for me, I'm doing a bit better today. Guts are still somewhat grumbly but at least I'm not explosively passing lettuce chunks anymore, and my hip is feeling better today (we're back to pouring rain today, go figure). I'm exhausted but that's my main complaint for today, which means I must be doing mostly okay if I don't have any pain or other symptoms to complain about right now.
 
I know, but I keep doubting myself.

I'm feeling more down now since I've been out of the hospital than before I went in there.

He basically told me what I already knew. It's either IBS or IBD. My blood tests/stool test results point more toward IBS, but he needs to rule out other things. So, now I wait for a letter to then wait for an Ultrasound and a sigmoidoscopy. He didn't even look at my fissures/haemorrhoids. I am now feeling crap because of my BMI and just feeling rubbish in general.

If these tests come back normal, then I will be having an MRI to check structure and he'll prescribe me a small dose of amitriptyline (which I can see is an anti-depressant and a slight tranquilliser) to help the pain. Just seeing the word antidepressant just made me feel like I was being lumped back into the same place I was before. I feel like crying just for the fact that makes me feel like it's all in my head. I don't know why he suggested them, but I'm now trying to believe this is all in my head, and funnily enough, it's not working. I still have pain. No, it's not crippling. It hurts, and I can carry on. Some days it can be crippling but it's not every day. So maybe my pain really is nothing. I just feel so crap. No, I don't bleed a lot. I don't want to feel this way. Maybe it is all mental health issues. No idea. I'm sick and tired of being sick and tired. I'm sick of eating and feeling ill. Sick of not eating and feeling ill. Just want it all to end. :(
 
Kelleh, do not feel bad about the amitriptyline thing - it's not "just" an antidepressant, it has many off-label uses including being used for IBD. He's not saying it's all in your head. I'm on ami myself - I take 25 mg each night. It helps me sleep and it keeps some of my migraines at bay. It hasn't done much for my guts but it can help some people with both digestive issues and chronic pain. So, give it a try (what dosage did he prescribe?) and see if it helps the pain or gut symptoms. Trust me, hun - my GI prescribed me my ami specifically for both gut reasons and for the migraines that Entocort gave me. It works for some of my migraines, not so much for the guts (it does tend to constipate me if I take other constipating meds with it, such as Zofran, but that's the extent of what it does for my guts). He's not saying it's all in your head - when a GI prescribes amitriptyline specifically, particularly in a low dose (10 to 25 mg usually), that's for gut stuff. (Higher doses like 100 mg+ are more for antidepressant than for gut stuff - it sort of functions differently at different doses.) If it works for you then that doesn't really narrow down if it's IBD or IBS, but seriously, no, he's not saying it's all in your head. I promise. :) He's trying to get you some relatively safe gut relief and pain relief while you undergo tests, at least that's how I'm interpreting what you wrote.

Edited to add: I'm so exhausted today, I hope that all made sense.
 
Thanks Cat. Bf has just spoken to me & made me feel a bit better too. I just feel so stupid.

GI hasn't prescribed anything yet, he wants to do the scope and ultrasound first. Oh gosh, I do hope it doesn't constipate me!! But no IBS meds have helped me, and no alternatives like peppermint tea have helped either, so this is the next step if biopsies and cam pics come back fine.

It made sense, thank you. I think I'm more the rambly one!
 
Your pain is definitely not nothing, kellehbeans. Even if you get an IBS diagnosis, or no diagnosis - you feel pain and that alone is something. Sounds like your GI is at least trying to do something to help you, which is good. I've also heard of low dose antidepressants being used to treat symptoms of IBS and other gut pain/issues.

I managed to get through a whole day on two hours of sleep today so I'm pretty proud of myself :p

Trying to get back into something resembling a normal routine. And it's helping my mood though definitely not my stomach. I keep having pretty emergent situations in relatively public settings which is not the best time ever. I also spent over an hour loudly belching on public transport. Awkward.
 
Izzie said:
Your pain is definitely not nothing, kellehbeans. Even if you get an IBS diagnosis, or no diagnosis - you feel pain and that alone is something. Sounds like your GI is at least trying to do something to help you, which is good. I've also heard of low dose antidepressants being used to treat symptoms of IBS and other gut pain/issues.

I managed to get through a whole day on two hours of sleep today so I'm pretty proud of myself :p

Trying to get back into something resembling a normal routine. And it's helping my mood though definitely not my stomach. I keep having pretty emergent situations in relatively public settings which is not the best time ever. I also spent over an hour loudly belching on public transport. Awkward.
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The first thing that hit me when I was seeing how long an 'IBS flare' would last, was the whole 2-4 day thing. I could not find any ACTUAL IBS-sufferer's that had anything longer than that. Maybe a week, but that was all.

I'm not looking forward to the sigmoidoscopy, but apparently you get gas & air, so I'll look forward to that! However, now I have to sit in anticipation and wait for the letters to come through, and the NHS is not really earning gold stars at sending out letters to patients.

I managed to walk to work this morning, as I woke up with a stomach ache. Not sure if it's trapped wind or what, but when I walked to work IT HELPED! But, now I'm sat back down, it's here again and it hurts. Again, not crippling. But it is there, and is annoying. Haven't eaten yet, that is worrying me a little.

2 hours of sleep? I can't live without 9! I am so pathetic. I am so tired come 9pm, I generally end up in bed at that time. But well done on managing some sleep!

Burp loud and proud and just declare it's a medical issue. You can get away with that one, people will just let you off. ;)
 
So after a couple of weeks on Esomeprazole I just wasn't feeling like they were making a difference, and I had a lot more belching, so a few days ago I switched back to Omeprazole and I feel SO MUCH BETTER.

I don't know if it was just taking a break from them and then coming back that they're somehow more effective for a while again but I'm just enjoying this little break of feeling much better re: the GERD symptoms.
 
Cat-a-tonic, it's good to hear from a fellow germophobe! When I read your post, I could picture myself thinking the EXACT same thoughts as you. Whenever I find out that someone I've been around is sick, I think back on all the interactions we've had lately, if we touched any of the same things, how many times I washed my hands, etc. And then I feel doomed that I'm going to get sick too.

I can't stand how doctors use IBS as an excuse for everything. I've felt terrible every single day for more than a year and a half.....I'm pretty sure that's not IBS.

I recently started on a low dose antidepressant to see if it will help with any of my digestive issues. I can completely understand the hesitation to take them though, because it can feel as though doctors are just trying to tell us we're depressed. The only reason I'd be depressed is because I've been sick for so dang long.

Have you guys had any success with diets or any alternative treatments? I'm not even able to work because it's so bad. I go to school but barely. It's just about impossible.

Today was a rough day. I've had cramps all day long. I'm just glad it's the weekend.
 
I too am getting the sniffles, probably from work.

In other news, today I ate some food and immediately felt like I'd swallowed a handful of razorblades. Probably was a little late with meds but what on earth would cause that so quickly? Confusing and very un-fun, but it passed after an hour or so.
 
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@akgirl - that's funny, because they took mine from me in case they were upsetting me. But as I've mentioned before, they're thinking of putting me on a different one to see if it helps the pain. What AD's did they put you on to see if it helps?

@wildmtnhoney - That's the unfortunate thing about children, they start school and all of a sudden you have every single cold or single bug they have! Take care of yourself!

@Izzie - Ugh, not good. :( Every time I eat, my stomach feels like it's going to just split open and bleed and bleed at the moment. It's horrible. What did you eat?

How is everybody today? I am currently high off of my head (on medication!). :D I can't feel my fingers, yet I can still feel the stabbing pain in my LLQ. I called my doctor today to beg him for painkillers. It made me laugh because he's the usual 'it's a virus' or 'it's IBS' guy, and he was literally at a loss for what to say. He considered giving me tramadol, but gave me codeine instead, and basically just self-medicate. I've only taken 1 damn tablet and I'm already all over the place. Work is going to be interesting this afternoon!
 
akgirl, glad to know I'm not the only germophobe here. :) I wasn't always a germophobe, but for the past 6 years or so with IBD in my life, it's like I really REALLY don't need anything on top of my usual stuff, so I've become a germophobe for sure. The good news is, I didn't catch any norovirus so it was just me being overly panicky.

I am exhausted though, still. I went home sick on Thursday because I was so ridiculously exhausted and I was having some nausea as well. The fatigue was quite bad - I got home around noon, went right to bed, slept for about 3 solid hours - and when I woke up around 3 PM, I still felt extremely exhausted. Ugh! It's gotten somewhat better, I rested a lot over the weekend, but I'm still exhausted.

Oh, and this isn't helping my exhaustion at all - the hubby has kidney stones again. So he's been getting up to pee 5 or 6 times a night, every night. And he seems to wake me up often when he gets up. So I'm not sleeping through the night because of poor hubby. I don't want to banish him to the guest bedroom - after all, when I'm getting up multiple times a night in a flare, he's never banished me to another room. I feel bad, for once he's doing worse than I am (he's normally healthy as a horse). He had stones something like 3 years ago and he had a miserable time then. He changed his diet so we can't figure out how he got stones again. Frustrating. Oh, and did I mention, we only have one bathroom? He's trying to flush his stone out so he's been drinking a ton of water and sometimes he's urinating 3 times an hour, and when my guts get a little bit grumpy then it becomes very clear that we need 2 bathrooms! Eek. Not good.

Wildmtn, oh ick, feel better soon! I don't have kids but I have 5 nieces & nephews, all age 12 & under, and those kids always pass germs on to me every single time I see them. The last 2 times I've had the flu? I can attribute the more recent flu to my youngest niece and the flu before that definitely came from my middle niece. Yuck! Even when they seem healthy, I still manage to catch a cold from one of them somehow. Kids are ridiculous, so many germs! Don't get me wrong, I love my nieces & nephews, but when 5 kids are all trying to hug me at once, I'm trying to hold my breath so as to not inhale their germs and then I wash my hands like crazy. (I still end up getting sick though.)

Izzie, where was your razorblade type pain located? I get that sometimes and mine is always due to gastritis (which is in turn caused by my GERD). My gastritis pain is usually upper, like a couple inches above my belly button. That pain comes and goes depending on how active my GERD is at any given time. It's a very sharp pain and eating hurts for sure when it's active. My gastritis is caused by excessive stomach acid - when my GERD gets really going with a lot of stomach acid, if I don't get it under control right away, then the stomach acid starts eating away at the lining of my stomach. It's like the acid finds a weak spot in the lining and eats through there, and that causes very sharp pain in that specific spot. It's not fun. Taking extra reflux meds and going really easy on eating is what helps me recover from that.

Kelleh, I'm glad you got some medication although it sounds like it's not doing such great things to you! Weirdly enough I was like that when I was on cipro, it made me feel like I was drunk and I was laughing and sort of dizzy in a funny way. It was definitely not good to try to drive or work while I was on it! I hope you can get through work without any major incidents.
 
It just makes me feel funny. On one tablet, it lasts about 1hr30min with the weird effect, but going to take more when I get home, probably take 2 tablets, and 1 before I go to bed. Just need to do it once I don't need to go anywhere for the evening.

Work was fine with it, they just laugh at me anyway, so it's OK! Stomach is hurting again, so the effects have DEFINITELY worn off for the time-being. Going to go to the gym, despite the pain. It usually helps a bit, and I really need to shed some pounds.

You really do need 2 bathrooms! That's what mine and my OH's main goal is, especially when he has UC and am suspected. I'm really sorry to hear he's not feeling good, give him extra big hug, and hopefully he'll get better soon! Hope you also get some better rest too, probably doesn't help when you're worrying about him and that's probably not helping your exhaustion. Sending big hugs to you!
 
Yeah, we really do need 2 bathrooms. We have a small house so just 1 bathroom currently, but we plan to build a second bathroom in the basement. We have about half of what we need - we have a toilet, a sink, and some of the plumbing components. We still need to get a shower and we need to hire a professional plumber to do some stuff, and of course we need to build walls and stuff for it as well. It's going to be a fair bit of work and money which is why we haven't done it yet. I'm thinking though that with this situation, I can probably convince hubby to do what work he can and we can dip into our savings account to pay a plumber to do that part. Our one current bathroom also desperately needs remodeling (it's currently a pink and brown color scheme, very ugly) but we can't remodel it until we have a basement bathroom to use. Can't exactly rip out our one existing toilet and then not have any toilet until the remodel is done! So yeah, a basement bathroom is needed for a number of reasons, we just have to build it.

I want to go to the gym too but I'm still too exhausted I think. My goal is to get to the gym at some point this week, I think that's as good as I'm going to be able to muster. I still need rest today, as frustrating as that is.
 
Oh my god I am so glad I found this support group. I have been thrown from doctor to doctor and no answers have come of it. Almost every doctor has given up on me because they have no idea what's going on. My whole body has been malfunctioning, and it all started with abdominal pain. But now im feinting, missing so much school, having joint pain, and having breathing problems because my quote on quote "ibs" is causing my diaphragm to spasm. It's been a year. It's my senior year of high school and I should be out raising Cain and tearing up the town, but instead I'm laying in bed sick almost every day because I'm in constant chronic pain from ibs or some other undiagnosed ibd. The hardest part is not knowing what it is nor what to do to fix it. I'm more comforted though knowing that I'm not alone here.
 
Hi Kiki Q, welcome to the club. A couple things about your post concerned me - fainting and difficulty breathing aren't usually part of IBD. Have your doctors looked at the possibility of other autoimmune illnesses, such as Lupus or Behcet's? Those illnesses can cause IBD-like symptoms but can also affect other areas of the body. If they haven't been able to diagnose IBD definitively, it might be worthwhile to look at some other illnesses - if nothing else, at least you could rule some things out. I'm not saying it's not IBD, and I'm definitely not a doctor, but I think with the symptoms you mentioned that you could probably benefit from looking at some other possibilities along with IBD.

Here's a thread that might be of interest to you. It was written by a young woman who was a regular member of the Undiagnosed Club, and she eventually got diagnosed with Behcet's.
http://www.crohnsforum.com/showthread.php?t=44354
 
Cat-a-Tonic said:
akgirl, glad to know I'm not the only germophobe here. :) I wasn't always a germophobe, but for the past 6 years or so with IBD in my life, it's like I really REALLY don't need anything on top of my usual stuff, so I've become a germophobe for sure. The good news is, I didn't catch any norovirus so it was just me being overly panicky.

I am exhausted though, still. I went home sick on Thursday because I was so ridiculously exhausted and I was having some nausea as well. The fatigue was quite bad - I got home around noon, went right to bed, slept for about 3 solid hours - and when I woke up around 3 PM, I still felt extremely exhausted. Ugh! It's gotten somewhat better, I rested a lot over the weekend, but I'm still exhausted.

Oh, and this isn't helping my exhaustion at all - the hubby has kidney stones again. So he's been getting up to pee 5 or 6 times a night, every night. And he seems to wake me up often when he gets up. So I'm not sleeping through the night because of poor hubby. I don't want to banish him to the guest bedroom - after all, when I'm getting up multiple times a night in a flare, he's never banished me to another room. I feel bad, for once he's doing worse than I am (he's normally healthy as a horse). He had stones something like 3 years ago and he had a miserable time then. He changed his diet so we can't figure out how he got stones again. Frustrating. Oh, and did I mention, we only have one bathroom? He's trying to flush his stone out so he's been drinking a ton of water and sometimes he's urinating 3 times an hour, and when my guts get a little bit grumpy then it becomes very clear that we need 2 bathrooms! Eek. Not good.

Wildmtn, oh ick, feel better soon! I don't have kids but I have 5 nieces & nephews, all age 12 & under, and those kids always pass germs on to me every single time I see them. The last 2 times I've had the flu? I can attribute the more recent flu to my youngest niece and the flu before that definitely came from my middle niece. Yuck! Even when they seem healthy, I still manage to catch a cold from one of them somehow. Kids are ridiculous, so many germs! Don't get me wrong, I love my nieces & nephews, but when 5 kids are all trying to hug me at once, I'm trying to hold my breath so as to not inhale their germs and then I wash my hands like crazy. (I still end up getting sick though.)

Izzie, where was your razorblade type pain located? I get that sometimes and mine is always due to gastritis (which is in turn caused by my GERD). My gastritis pain is usually upper, like a couple inches above my belly button. That pain comes and goes depending on how active my GERD is at any given time. It's a very sharp pain and eating hurts for sure when it's active. My gastritis is caused by excessive stomach acid - when my GERD gets really going with a lot of stomach acid, if I don't get it under control right away, then the stomach acid starts eating away at the lining of my stomach. It's like the acid finds a weak spot in the lining and eats through there, and that causes very sharp pain in that specific spot. It's not fun. Taking extra reflux meds and going really easy on eating is what helps me recover from that.

Kelleh, I'm glad you got some medication although it sounds like it's not doing such great things to you! Weirdly enough I was like that when I was on cipro, it made me feel like I was drunk and I was laughing and sort of dizzy in a funny way. It was definitely not good to try to drive or work while I was on it! I hope you can get through work without any major incidents.
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I had bran flakes, and I'm pretty sure that's exactly what happened to me, actually. The night before I had a meal that was pretty much packed with GERD triggers (I had half a glass of wine - BIG MISTAKE), and this morning I had black stools so... Yeahh... I have an appointment with my GP next week and I plan to complain loudly about the fact that my GI won't take the GERD seriously because this can't keep happening constantly. I don't care if my scopes didn't show anything, that was almost 6 months ago and I need more help with this issue than I'm getting. My GI only keeps telling me that if I'm on 40mg of Omeprazole and it's not helping enough then it's just in my head because it's supposed to fix the problem.

I'm popping Gaviscon like candy and might sneak an extra PPI today. Seems to me like if it gets started and I don't nip it in the bud it just keeps causing problems for weeks. Whereas sometimes it can stay at a pretty stable, managable level for weeks at a time.

I'm starting to think I might need surgery. I know I have a hiatus hernia (actually diagnosed, but not taken very seriously...), and they refuse to put me on a higher PPI dose and I'm just kind of at a loss. I think I need to lose weight, I've heard that can make a pretty drastic difference.

I just want it to go away but I'm not feeling too hopeful that it will :lol2:

When my anxiety runs away with me I get really stressed that I'm going to get a perforated ulcer just out of the blue and drop dead. Not a very calming thought :ylol: I try to calm myself thinking hey, I'm at least on some acid-suppressing meds so that should be doing something to decrease that risk at least.
 
Izzie, bran flakes could definitely hurt and cause bleeding! Back in late February or so, I had a bowl of shredded wheat cereal. I had been doing well and got cocky and thought I could eat something like that. Um, nope! Shredded wheat = shredded intestines. That one bowl of cereal did horrible things to my guts, it set off a full month of bleeding every day - literally, for the entire month of March, I passed blood I think every single day. It was so not a good idea to have that cereal. Now I only have cereal rarely and I stick to cereal that I know is safe for me (rice chex or rice krispies). So yeah, I feel for you, having a high-fiber/ whole grain cereal and then paying for it big-time is just the worst. It seems so wrong to have such huge consequences for one little bowl of cereal.

Izzie said:
Seems to me like if it gets started and I don't nip it in the bud it just keeps causing problems for weeks.
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YES. For me as well. When I feel a reflux attack coming on, I start popping extra omeprazole and Nexium and ranitidine (whatever I have on hand) like candy because I'm the same way. If I take a bunch of extra meds and get it under control quick, then I can avoid days or weeks of awfulness. I'd way rather take a bunch of meds than have to deal with the gastritis that comes on after a bad reflux attack. It's so not worth it to deal with the reflux consequences. Sure, taking a ton of meds is not necessarily a great idea, but to me it's the lesser of the two evils.

It's funny, I was just thinking about my last really bad reflux & gastritis attack - it was almost exactly one year ago. The reflux has been oddly mostly quiet this year (everything else hasn't though). A year ago, I got a horrible attack of gastritis. I don't even remember what brought it on but I remember what my plans were at that time. I had a corgi picnic to go to and I really didn't want to miss it, so I went in spite of the pain and the nausea. The corgi picnic is exactly what it sounds like - a bunch of corgi owners get together with their dogs in a park, the dogs all play together and are adorable and the humans socialize and eat a picnic lunch. I have a corgi and I really, really wanted to take my dog to the picnic, so I went even with the gastritis. I barely ate anything (speaking of cereal though, one of the few things I could eat with gastritis was rice krispy treats, so I had a couple of those and basically nothing else). It was a super fun time in spite of my pain & symptoms and I was really glad I went - my dog had so much fun and there was so much cuteness with all the dogs. And, I know it was just about a year ago, because this year's corgi picnic is coming up on Saturday. My goal this year is to not have gastritis at the picnic. :p I just have to avoid a reflux attack for a few days (or angering my guts/body in any other way I suppose), then I can hopefully eat some actual food at the picnic while I'm watching a bunch of adorable dogs run around.
 
Kiki Q said:
Oh my god I am so glad I found this support group. I have been thrown from doctor to doctor and no answers have come of it. Almost every doctor has given up on me because they have no idea what's going on. My whole body has been malfunctioning, and it all started with abdominal pain. But now im feinting, missing so much school, having joint pain, and having breathing problems because my quote on quote "ibs" is causing my diaphragm to spasm. It's been a year. It's my senior year of high school and I should be out raising Cain and tearing up the town, but instead I'm laying in bed sick almost every day because I'm in constant chronic pain from ibs or some other undiagnosed ibd. The hardest part is not knowing what it is nor what to do to fix it. I'm more comforted though knowing that I'm not alone here.
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It's actually funny that you say that because they just checked me for all of that last week. They have checked for so many auto immune diseases including lupus and behcets. They said its odd too but they have attributed the feinting to
Vasovagal syncope which is caused by chronic pain. And the breathing has been attributed to the ibs that has made my diaphragm spasm. Now tbh idk if that's a bunch of bull, but I really appreciate any ideas that I can get. Because the doctors will test until they give up and say the famous phrase "there's nothing else that we can do".
I so appreciate the support because I have been fighting this battle for a while. I know there are so many people that have been undiagnosed for longer periods, but at least I know I'm not alone. Thankyou so much for your help and for welcoming me Cat-a-Tonic :) I can't tell you how much better it makes me feel already
 
Oh, Izzie, I just re-read your post and I realized I forgot to respond to your part about potentially having the surgery on your hiatal hernia. I actually had discussed having the fundoplication surgery with my GI, and we both decided that I'm not a good candidate for it right now. Since my hernia is "small and sliding", surgery probably won't do much good but it could do me some harm. Apparently some common side effects of the surgery include inability to belch & vomit, and massive bloating. Since I'm already bloated a lot every day anyway, I really don't need more bloating on top of that, and the inability to belch sounds a bit terrifying. And as much as I hate to vomit, sometimes you just have to, so that's scary as well. I've talked to a few people on the forum who have had the surgery, and a few have said it went great and they're glad they had it, but others have said they regret having it and feel worse afterwards.

One thing to do beforehand if you're considering the fundoplication surgery - have an esophageal manometry test done first. My GI explained it to me - it tests your esophageal motility, or your esophagus's ability to move food down into your stomach. If your esophagus has abnormal motility - if it doesn't move food into your stomach quickly or correctly - then the fundoplication surgery can make things much, much worse. If your food can't move into your stomach correctly, and then suddenly the opening to get into the stomach is tightened up surgically, yeah, that's a bad thing. So definitely ask for an esophageal manometry test first to check your esophageal motility, because if you don't the surgery could be very regrettable.
 
Kiki Q, I'm glad you've been tested for those and presumably had them ruled out (what tests did they do - did they check your ANA through bloodwork?). You mentioned that you're a senior in high school so I presume your parents are going to your doctor appointments with you? And your parents have presumably taken you to a bunch of different doctors at this point? Where are you located - if you're in the US, have you been anywhere such as Mayo Clinic? Sorry for all the questions, just trying to get an idea of what your situation is. I really hope you can get some answers. What's next for you, have your current doctors got any more tests in mind?
 
Cat-a-Tonic said:
Izzie, bran flakes could definitely hurt and cause bleeding! Back in late February or so, I had a bowl of shredded wheat cereal. I had been doing well and got cocky and thought I could eat something like that. Um, nope! Shredded wheat = shredded intestines. That one bowl of cereal did horrible things to my guts, it set off a full month of bleeding every day - literally, for the entire month of March, I passed blood I think every single day. It was so not a good idea to have that cereal. Now I only have cereal rarely and I stick to cereal that I know is safe for me (rice chex or rice krispies). So yeah, I feel for you, having a high-fiber/ whole grain cereal and then paying for it big-time is just the worst. It seems so wrong to have such huge consequences for one little bowl of cereal.



YES. For me as well. When I feel a reflux attack coming on, I start popping extra omeprazole and Nexium and ranitidine (whatever I have on hand) like candy because I'm the same way. If I take a bunch of extra meds and get it under control quick, then I can avoid days or weeks of awfulness. I'd way rather take a bunch of meds than have to deal with the gastritis that comes on after a bad reflux attack. It's so not worth it to deal with the reflux consequences. Sure, taking a ton of meds is not necessarily a great idea, but to me it's the lesser of the two evils.

It's funny, I was just thinking about my last really bad reflux & gastritis attack - it was almost exactly one year ago. The reflux has been oddly mostly quiet this year (everything else hasn't though). A year ago, I got a horrible attack of gastritis. I don't even remember what brought it on but I remember what my plans were at that time. I had a corgi picnic to go to and I really didn't want to miss it, so I went in spite of the pain and the nausea. The corgi picnic is exactly what it sounds like - a bunch of corgi owners get together with their dogs in a park, the dogs all play together and are adorable and the humans socialize and eat a picnic lunch. I have a corgi and I really, really wanted to take my dog to the picnic, so I went even with the gastritis. I barely ate anything (speaking of cereal though, one of the few things I could eat with gastritis was rice krispy treats, so I had a couple of those and basically nothing else). It was a super fun time in spite of my pain & symptoms and I was really glad I went - my dog had so much fun and there was so much cuteness with all the dogs. And, I know it was just about a year ago, because this year's corgi picnic is coming up on Saturday. My goal this year is to not have gastritis at the picnic. :p I just have to avoid a reflux attack for a few days (or angering my guts/body in any other way I suppose), then I can hopefully eat some actual food at the picnic while I'm watching a bunch of adorable dogs run around.
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Oh GOD I love corgis so much. I'm in such a mood to get a pet, I used to have a cat that I had to find a new home for since he was so miserable being an indoor cat. But I think I'm more a dog person at heart. Do you find it difficult managing a dog while dealing with illness? I help with my mother's dog all the time, but having sole responsibility for one is probably a very different experience I'd imagine.

Does your doctor diagnose gastritis just based on symptoms? I'm trying to figure out what I need to ask for in order to get an official diagnosis for the reflux/everything else. You'd think me having a hernia and these symptoms would be enough, but oh no. My GI has agreed to a pH test "maybe", if the pill cam comes out clear, but that won't be until next year. I'm concerned about long-term consequences from dealing with rampant reflux for this long. But then again I've heard of people going untreated for decades so maybe 9 months isn't so bad.

What time of day do you take your PPIs? I'm currently taking 20 mg before breakfast and again before dinner, but I don't know. Starting to consider switching to 10 mg capsules so I could take it more often, or maybe it's better to take it all at once? I have no idea, every doctor I've asked says different, and I'm hesitant to experiment on my own too much without some anecdotal backup that it might help, since I feel pretty horrible if my meds don't "take".

I do need to quit drinking tea, I'm realizing. I'm a complete tea addict, it was my replacement after I quit coffee and I thought I could handle it fine, but I don't think that's the case anymore. I'm going to be so grumpy :ylol:
 
Cat-a-Tonic said:
Kiki Q, I'm glad you've been tested for those and presumably had them ruled out (what tests did they do - did they check your ANA through bloodwork?). You mentioned that you're a senior in high school so I presume your parents are going to your doctor appointments with you? And your parents have presumably taken you to a bunch of different doctors at this point? Where are you located - if you're in the US, have you been anywhere such as Mayo Clinic? Sorry for all the questions, just trying to get an idea of what your situation is. I really hope you can get some answers. What's next for you, have your current doctors got any more tests in mind?
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They checked my ANA through blood work and I've gone to many physicians through my local hospital but they have all given up on me except for one. But, my GI wants me to get a chest X-ray and have a follow up with her. So that's next week. What is the Mayo Clinic though? And do they take all insurances? Don't be sorry, also. I ask alotta questions too.and I'm turning 18 next month and I live with my grandparents, so they are trying but sometimes even they get quite overwhelmed, too.
 
Izzie, my gastritis diagnosis was sort of a diagnosis of exclusion. When I had my first gastritis attack, the pain was awful and in my upper abdomen (when normally my IBD-like pain is in my lower abdomen) and my stools were very pale - not sure why. But upper abdominal pain and pale stools often mean gallbladder issues, so my GP sent me for an urgent ultrasound. They looked at my gallbladder - fine. They also looked at my liver as I've had some liver issues in the past, but that was also fine. Given my history with GERD and where the pain was located and everything like that, they decided it must be gastritis, and told me to treat it with reflux meds. That works well, so I'm satisfied that it is indeed gastritis. It also only ever happens after a reflux attack, so it's clearly related to my reflux. I'm not sure why my stools go pale but that does often happen. In fact, my stools this morning were pale which had me worried, but I am not having any upper abdo pain so I really don't know what's up with that. (Maybe this time it is my gallbladder, hah.)

I'm a tea addict as well but only caffeine-free herbal tea - mainly chamomile, as mint makes my reflux symptoms worse. I do okay with chamomile, so I'm not giving up tea anytime soon.

As for when I take my reflux meds - on an average day, I take my 40 mg Nexium/esomeprazole first thing when I wake up. If I'm hitting the gym that day then I take 300 mg ranitidine and a handful of Tums just before I go work out. And I take another 300 mg ranitidine just before bed, to keep things calm while I sleep. That system works out pretty well for me - the Nexium keeps things relatively calm throughout the day, and the ranitidine works as sort of a "spot check" to keep things reasonably calm during my worst reflux times (exercise and lying down/sleeping).

And yes, corgis are ridiculous and wonderful. I got my dog when I first got into remission about 5 years ago (that remission lasted for 2 years) - I knew I'd probably have future flare-ups that would prevent me from being the best dog-owner. Fortunately (well, not fortunately financially) my husband works part-time, and on the days he does work, he doesn't have to go in to work until noon. So he tends to walk her on weekdays, and I sometimes walk her on weekends if I'm feeling up to it. That system works out pretty well for the most part, and he's kept up with walking her (so far) even with his new batch of kidney stones. If I'm not able to walk her, I try to make sure she has some stimulation anyway. I'll throw a ball for her down the hallway of the house, or I'll put some peanut butter in her Kong toy which she always spends like an hour trying to get every molecule of peanut butter out of it. :p She's ridiculous. I'm honestly actually more of a cat person - I appreciate that my cat is so low-key and chill and in touch with my health - on days when I'm feeling bad, my cat will come sit by me and just quietly purr and keep an eye on me. I appreciate that so much. My dog, on the other hand, just wants treats and food and walkies and attention all the time, she's kind of a spazz whereas my cat is much more calm and subtle. My dog does make me laugh even when I'm feeling ill, though, so both my pets are wonderful in their own very different ways (I also have a pair of gerbils and they are also fun and ridiculous - they make running in a little wheel and chewing on a cardboard tube look like a great time, ha ha). So yeah, a dog is great IF you have someone else around who can take care of things like walking the dog when you're feeling too ill to do so. Personally though I prefer cats, particularly on bad tummy days. Having to get up multiple times to let my dog out to potty and run around, versus my cat taking herself to the litter box (and we have one of those automatic self-scooping litter boxes so I don't even have to scoop it myself) - no question, I'm totally a cat person. ;)

Kiki Q, Mayo Clinic (actually there are several Mayo Clinics, I know the main one is in Minnesota and I think the others are in Florida and Arizona?) is a well-known and high-ranked hospital. I haven't been there myself, but a lot of people on the forum have spoken highly. Here's their website: http://www.mayoclinic.org/ Sometimes they can help with hard-to-diagnose cases which is why I mentioned them. Depending on where you're located, though, it may not be feasible to go there if it's too far away. I've also heard good things about Cleveland Clinic if you're anywhere near that area of the US. I'm not sure what insurance they take as I haven't been to either Mayo nor Cleveland Clinic, but I'm sure if you contacted them that they could give you more info. I'm glad to hear you have your grandparents' support. What's the reason for the chest x-ray, are they checking you for latent tuberculosis? And on that note, have they checked you (or are they checking you) for abdominal tuberculosis? Here's an article about that:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2360888/
 
I too have had random pale stools lately, though mostly when I'm feeling pretty good so I haven't bothered worrying about it. I've had a gallbladder/liver/kidney ultrasound too and it was fine. We seem to have similar symptoms :p

When my symptoms get bad, I get black stools and constipation, mostly. I can get D at times, but hardly ever when I have bad pain or otherwise feeling really awful. That seems to be unusual.

Also what on earth is a self-scooping litter box, I've never heard of such a thing but it sounds like the best invention ever.
 
Izzie, self-scooping litter boxes are definitely the best invention ever! :) I've had a few different models over the years with varying success. There are quite a few on the market in the $100 (US) range, but most of those are garbage and will break usually within a year (I've had a couple of those so I speak from experience). I currently have a Litter Robot, which was pricey (about $350 US) but well worth it. It's had a few issues over the years but the company has always sent us parts, usually for free even though the warranty is up. I think we've had it for 6 or 7 years now and it still works well and my cat loves it.
http://www.litter-robot.com/
They're located in the US (just one state over from me, in Michigan) and I'm not sure if they sell Litter Robots outside of the US or not. But if you ever get another cat, definitely do some research into self-scooping litter boxes. They are so worth the money in my opinion. All I do is empty the poo receptacle once per week or so and that's it. (And when I say I empty it, I mean I tell my hubby to empty it, ha ha.)

Back on topic - we're definitely similar in some ways! I don't tend to get constipation, though, and I don't know that I've ever had black stool (or if I did, I could trace it to something, like pepto bismol turns my stool black - I don't think I've ever had black stools that were from blood or an unknown source). I definitely tend towards diarrhea in a flare - the worst was, I decided at the start of a bad flare to count how many bathroom trips I had in a day. I got a bit delirious due to dehydration and lost count right around #30, but I went about 5 or 6 more times after that, so I'm comfortable with saying that I had about 35 bathroom trips in a 24 hour period. I didn't think it was humanly possible to have diarrhea 35 times in a day, but I'm living proof that it is indeed possible (and painful and horrible). So yeah, for me it's no black stools and I only tend to get constipated when I take medication to stop things up, but I definitely tend toward diarrhea.
 
Oh wow, 35. I don't think I had it that bad even when I did my pre-colonoscopy laxatives. I'm still leaning towards thinking I have two separate problems and that the bleeding is mostly related to the reflux and hernia.

And then I have the occasional case of D and cramping pains and nausea and pretty much have to go #2 about 7-10 times per day which is not really normal.
 
Kiki Q, Mayo Clinic (actually there are several Mayo Clinics, I know the main one is in Minnesota and I think the others are in Florida and Arizona?) is a well-known and high-ranked hospital. I haven't been there myself, but a lot of people on the forum have spoken highly. Here's their website: http://www.mayoclinic.org/ Sometimes they can help with hard-to-diagnose cases which is why I mentioned them. Depending on where you're located, though, it may not be feasible to go there if it's too far away. I've also heard good things about Cleveland Clinic if you're anywhere near that area of the US. I'm not sure what insurance they take as I haven't been to either Mayo nor Cleveland Clinic, but I'm sure if you contacted them that they could give you more info. I'm glad to hear you have your grandparents' support. What's the reason for the chest x-ray, are they checking you for latent tuberculosis? And on that note, have they checked you (or are they checking you) for abdominal tuberculosis? Here's an article about that:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2360888/
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I'm in Florida but the travel to Jacksonville is hours away and the trip all the time would kill me on gas. I may try Nemours or Arnold Palmer hospital but I have no idea if they would take me considering I will be 18 within the month. And that's a good question. I don't think they have specifically checked me for abdominal tb but they would pick that up on the chest X-ray next week if that is a concern, right?
 
akgirl said:
Cat-a-tonic, it's good to hear from a fellow germophobe! When I read your post, I could picture myself thinking the EXACT same thoughts as you. Whenever I find out that someone I've been around is sick, I think back on all the interactions we've had lately, if we touched any of the same things, how many times I washed my hands, etc. And then I feel doomed that I'm going to get sick too.

I can't stand how doctors use IBS as an excuse for everything. I've felt terrible every single day for more than a year and a half.....I'm pretty sure that's not IBS.

I recently started on a low dose antidepressant to see if it will help with any of my digestive issues. I can completely understand the hesitation to take them though, because it can feel as though doctors are just trying to tell us we're depressed. The only reason I'd be depressed is because I've been sick for so dang long.

Have you guys had any success with diets or any alternative treatments? I'm not even able to work because it's so bad. I go to school but barely. It's just about impossible.

Today was a rough day. I've had cramps all day long. I'm just glad it's the weekend.
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I have had exactly the same problem. The doctors are always so quick to say its all in our heads. I tell my doctor all the time, the doctors labeled me with anxiety a few months ago, that the only thing I ever have anxiety about i s the fact that I have been sick for a year. I mean when you're sucker punched in the stomach every day for a year what do they expect you to say? That we are just dandy and life couldn't be happier. I mean I'd like to see just one of these doctors experience what we do for a week and then tell us that they are not stressed or unhappy. I could go on but you are not alone in that aspect. My Grandma said I was stressed once after I moved out of my mom's and I've never heard the end of it.
 
Kiki Q said:
I have had exactly the same problem. The doctors are always so quick to say its all in our heads. I tell my doctor all the time, the doctors labeled me with anxiety a few months ago, that the only thing I ever have anxiety about i s the fact that I have been sick for a year. I mean when you're sucker punched in the stomach every day for a year what do they expect you to say? That we are just dandy and life couldn't be happier. I mean I'd like to see just one of these doctors experience what we do for a week and then tell us that they are not stressed or unhappy. I could go on but you are not alone in that aspect. My Grandma said I was stressed once after I moved out of my mom's and I've never heard the end of it.
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It's a really rough thing because I personally always feel like I can't tell them how I feel without being referred to a medication or psychiatrist. In some cases it helps people and I hope it helps you in some way, but I don't think it's the answer to all conditions and for all people. I hope that they find out what's ailing us. It's only harder when someone tells you that the pain you have had for a year and a half is Ibs and/or anxiety or depression. I am right here with you in that one akgirl
 
Kiki Q - I know exactly how you feel! And it sucks. It's like doctors don't take us seriously, and it's ridiculous. I know I'm not sick because I'm depressed or anxious or stressed.....there's something else going on in me. I'm sorry that you're going through this too. I know how much it sucks, but it's a little comforting knowing that you aren't alone. I hope you can find a good doctor who can figure it out. I haven't been able to find one yet though, and I even went to the Mayo Clinic. I can't believe you're going through this during your senior year though! That's horrible. :(
 
Cat - Did you make it to the gym in the end?

Welcome to you Kiki! :)

EDIT: Just booked my sigmoid scope!
 
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Kelleh, no, I didn't go to the gym yesterday but I am going today. I'm feeling significantly better and I actually slept last night. Hubby passed a kidney stone and hopefully it was the only one he had. He didn't get up to urinate at all last night so that's very good news! We both actually got to sleep, ha ha. So I'm going to the gym today for sure and I'm so excited about it. :)

Good luck with your sigmoidoscopy! I had one earlier this year. It wasn't too bad, the enemas they gave me beforehand were by far the worst part. I'm not sure if they do the same thing in the UK, but in the US, they don't make you drink the laxative prep stuff for just a sigmoid scope. They do 2 enemas on you just beforehand to clear you out up through the sigmoid. The enemas, it felt like they put a LOT of liquid in me and it immediately triggered massive cramps and a feeling like I need to go to the bathroom NOW. And then they asked if I could try to hold the enema in for 10 minutes. Um, no! I tried, I really did, but I don't think I even made it to 2 minutes. It was a rough 2 minutes for sure, and then I had to do the whole thing over again with the 2nd enema (and once again didn't even get close to 10 minutes). Yuck. But then the scope itself was fine, even though the sedation failed for me. I didn't have any pain, and I don't remember a lot, but I was definitely awake and talking the whole time (I recall that I kept trying to see what was going on on the monitor, but I didn't have my glasses on so I kept complaining "I can't seeeeeeeee" and I'm pretty sure my doctor told me to be quiet, hah). So yeah, even with failed sedation, that scope was a piece of cake. And even though I could barely hold in those enemas at all, they still cleared me out just fine. So don't worry if you can't follow their instructions on the enemas, it should still be okay.

Izzie, yeah, I also didn't have even close to 35 bathroom trips when doing colonoscopy prep - it was just a flare thing I guess! That was a particularly bad flare, too, one of the ones that kept me up all night. I recall that at one point I actually found a semi-comfortable position on the couch and I managed to fall asleep, for about 15 minutes. Then my guts jolted me awake with pain and an urgent need to get to the bathroom yet again, and I was covered with a thin layer of night sweats after only 15 minutes of sleeping. That flare was over 5 years ago, during the first year that I was ill (that was the year that I was the sickest - ever since that year, I've been on IBD meds and spent some time in remission and haven't had flares that were quite that bad ever since). That was the flare that drove me to finally ask to try prednisone, because you can't tell me that IBS makes you go 35 times in 24 hours or keeps you up all night or jolts you awake with night sweats and pain and all sorts of horribleness. Ugh.

Kiki and akgirl, I'm with you guys. Of course, when dealing with a serious illness, things like depression and stress and anxiety come along with it. But it's ridiculous to say that depression or stress or anxiety is the cause of your illness - just the opposite, the illness is causing the stress and depression etc! So many doctors seem to not understand that, it's just absurd. Seriously, doc, you think that I'm stressed and that's making me bleed out my butt and go to the bathroom 35 times in a day, huh? I suppose the stress also caused my arthritis? Sometimes I really wonder what they actually teach in med school. I once had a doctor tell me that I "look depressed" - really? Sure, I've dealt with depression. But it's a symptom of the illness, the illness is not a symptom of the depression. So many doctors get that backwards.
 
Cat - I am so glad you are feeling better hun, that is a nice thing to hear today! :) Gym it is for you! I think I've thrown myself back into gym-fever, but I am meant to be going out tonight, so I think the next time I can go is Thursday. Sounds like your hubby is getting better too! So smiles all around! (and pity-party style pizza!)

I heard the enemas are pretty grim. One lady on here told me you are just left to it, and just keep it in as long as possible before having to run! I'm hoping I don't get the mega big cramps beforehand! The cramps will definitely be the death of me at this point, because of the stabbing/pinching pain I have LLQ and also to the left of my navel (which I think may be in my small bowel if my anatomy is correct?) I'm just looking forward to the tea and biscuits in the after party! (If you can call it that!)

It's booked for the 30th October. I did get offered it earlier, but I am away on a very big army reunion which I tag along to with my Dad. I'm glad they didn't offer the week afterwards because that Friday I would be in Belgium! All my holidays have appeared on the end of this year!
 
Kelleh, they just leave you to it? As in, they make you do the enemas on yourself? Oh, yuck. I had never done an enema before, and at my sigmoidoscopy the nurse gave me two options - she could do the enemas for me, or I could do them myself. I apologized to her and then asked her to please do it - I'm sure it's not fun to have to give another person an enema, but I think I would have just made a mess or screwed up if I did it on myself. So the nurse did both enemas on me. Still not pleasant, but I think far better than if I tried to do it myself. And yes, they are grim for sure - definitely during that 2 minutes or so, I was thinking that I'd rather just do colonoscopy prep. But once it was all over with, I had like 4 total minutes of suffering as opposed to an entire day of starving and drinking gross laxative. So all in all, although the enemas were the opposite of fun, they probably still were better than doing full colonoscopy prep. At least the enemas were over with reasonably quickly.

I'm so jealous of you guys in Europe. You can just go away to Belgium (or anywhere else in Europe) for vacation! Totally jealous! I don't take a lot of proper vacations, but when I go away on a day trip, pretty much the furthest I can go is Illinois. :p I am going on a cool and proper vacation next year, though. I'm going to Japan! I'm super excited. I am going in the spring, so I'm gonna see the cherry blossoms! And I'm going to Tokyo Disneyland and I'm going to walk all around Tokyo, and I'm going to Kyoto to the bamboo forest. I'm going to eat so much sushi. It's going to be amazing. Is it weird that I'm not going until April but I've already started packing? ;) I'm trying to learn a bit of Japanese, too. Toire wa doko desu ka? Where is the bathroom? Ha ha!
 
Ugh, I am not looking forward to having to do the laxative thing again before my pill cam. It was not a good time. Though to be fair I had thought that it was going to be worse.

My weird razorblade pain isn't going away. Some meals its fine and then I have something that's just a liiiiittle too rough and then it's horrible.
 
So I'm pretty much done. Exhausted, sick, fed up. Have been in a pretty constant decline the past several days. Went to a consult at the university hospital today that was scheduled back in June, was told that I was likely misdiagnosed and that I only had "severe IBS". I lost it. I broke down crying. I cussed out the doctor. I explained how much I'd been suffering. I explained how the report from my original CT scan didn't match up with the actual pictures (which they had no access to so I can't imagine how they could've decided this). I explained how I'd lost 40 pounds involuntarily, I was told it probably wasn't related to any kind of gastrointestinal problem. I told them I was switched to Apriso AFTER my last CT scan in July (which I am now being told to no longer take because it only releases in the colon, contrary to what I've been told otherwise). They want another CT on the 29th and I almost don't want to go. I'm seeking relief. My mother said I was only "drug-seeking", and if relief comes in the form of drugs, then so be it. But I'm about to just say to hell with everything and just forget any of this even happened and go about life like there's nothing wrong with me (because that's exactly what the doctors are saying, "severe IBS" is nothing but code for "you're having some serious symptoms but you don't actually have anything wrong with you, it's all in your head, get the hell out of my office".) They wanted to send me packing and check up in A YEAR. I refused to take that for an answer. So yeah. I've had it. I don't know where I am anymore. I don't know what I have anymore either. But if I have to see ANOTHER doctor then I will, but perhaps I can open up my previous doctor's mind without having to undergo another scan. Obviously the Pentasa did something. Even if the Apriso's not doing anything, that wouldn't have been obvious at my last CT considering I hadn't started it yet! But yeah. I'm done. I'm so done.
 
gadgetninjette91 said:
So I'm pretty much done. Exhausted, sick, fed up. Have been in a pretty constant decline the past several days. Went to a consult at the university hospital today that was scheduled back in June, was told that I was likely misdiagnosed and that I only had "severe IBS". I lost it. I broke down crying. I cussed out the doctor. I explained how much I'd been suffering. I explained how the report from my original CT scan didn't match up with the actual pictures (which they had no access to so I can't imagine how they could've decided this). I explained how I'd lost 40 pounds involuntarily, I was told it probably wasn't related to any kind of gastrointestinal problem. I told them I was switched to Apriso AFTER my last CT scan in July (which I am now being told to no longer take because it only releases in the colon, contrary to what I've been told otherwise). They want another CT on the 29th and I almost don't want to go. I'm seeking relief. My mother said I was only "drug-seeking", and if relief comes in the form of drugs, then so be it. But I'm about to just say to hell with everything and just forget any of this even happened and go about life like there's nothing wrong with me (because that's exactly what the doctors are saying, "severe IBS" is nothing but code for "you're having some serious symptoms but you don't actually have anything wrong with you, it's all in your head, get the hell out of my office".) They wanted to send me packing and check up in A YEAR. I refused to take that for an answer. So yeah. I've had it. I don't know where I am anymore. I don't know what I have anymore either. But if I have to see ANOTHER doctor then I will, but perhaps I can open up my previous doctor's mind without having to undergo another scan. Obviously the Pentasa did something. Even if the Apriso's not doing anything, that wouldn't have been obvious at my last CT considering I hadn't started it yet! But yeah. I'm done. I'm so done.
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Oh wow, I'm so sorry you had to go through this! Sending you home to wait for a year sounds insane when you're having such a difficult time and losing weight and everything. I've been told though by some of my nicer doctors that gastrointestinal issues can be REALLY tricky to diagnose, so don't lose hope!
 
gadgetninjette91 said:
So I'm pretty much done. Exhausted, sick, fed up. Have been in a pretty constant decline the past several days. Went to a consult at the university hospital today that was scheduled back in June, was told that I was likely misdiagnosed and that I only had "severe IBS". I lost it. I broke down crying. I cussed out the doctor. I explained how much I'd been suffering. I explained how the report from my original CT scan didn't match up with the actual pictures (which they had no access to so I can't imagine how they could've decided this). I explained how I'd lost 40 pounds involuntarily, I was told it probably wasn't related to any kind of gastrointestinal problem. I told them I was switched to Apriso AFTER my last CT scan in July (which I am now being told to no longer take because it only releases in the colon, contrary to what I've been told otherwise). They want another CT on the 29th and I almost don't want to go. I'm seeking relief. My mother said I was only "drug-seeking", and if relief comes in the form of drugs, then so be it. But I'm about to just say to hell with everything and just forget any of this even happened and go about life like there's nothing wrong with me (because that's exactly what the doctors are saying, "severe IBS" is nothing but code for "you're having some serious symptoms but you don't actually have anything wrong with you, it's all in your head, get the hell out of my office".) They wanted to send me packing and check up in A YEAR. I refused to take that for an answer. So yeah. I've had it. I don't know where I am anymore. I don't know what I have anymore either. But if I have to see ANOTHER doctor then I will, but perhaps I can open up my previous doctor's mind without having to undergo another scan. Obviously the Pentasa did something. Even if the Apriso's not doing anything, that wouldn't have been obvious at my last CT considering I hadn't started it yet! But yeah. I'm done. I'm so done.
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I'm so sorry you're going through this, but I know exactly how you feel. I've had doctors say very similar things to me, and I can't stand it. Why don't doctors care?! I thought they were supposed to help people. Honestly though, good for you for cussing out your doctor! You have no idea how many times I've wanted to do that (and I have done it behind their backs!) A year follow-up is ridiculous. I had a doctor tell me to follow-up after three months after doing nothing for me, and I wanted to punch her in the face. So I can't only imagine how you feel after a year. It sounds like you've seen a lot of doctors and will probably have to try to find yet another one. That's exactly what I keep doing.....hoping the next one will be better. And they never are. I hope things get better for you, but I just wanted to say that you have a right to be mad. Really, really, really mad. We all should be. Hang in there.
 
Cat-a-Tonic said:
Kelleh, they just leave you to it? As in, they make you do the enemas on yourself? Oh, yuck. I had never done an enema before, and at my sigmoidoscopy the nurse gave me two options - she could do the enemas for me, or I could do them myself. I apologized to her and then asked her to please do it - I'm sure it's not fun to have to give another person an enema, but I think I would have just made a mess or screwed up if I did it on myself. So the nurse did both enemas on me. Still not pleasant, but I think far better than if I tried to do it myself. And yes, they are grim for sure - definitely during that 2 minutes or so, I was thinking that I'd rather just do colonoscopy prep. But once it was all over with, I had like 4 total minutes of suffering as opposed to an entire day of starving and drinking gross laxative. So all in all, although the enemas were the opposite of fun, they probably still were better than doing full colonoscopy prep. At least the enemas were over with reasonably quickly.

I'm so jealous of you guys in Europe. You can just go away to Belgium (or anywhere else in Europe) for vacation! Totally jealous! I don't take a lot of proper vacations, but when I go away on a day trip, pretty much the furthest I can go is Illinois. :p I am going on a cool and proper vacation next year, though. I'm going to Japan! I'm super excited. I am going in the spring, so I'm gonna see the cherry blossoms! And I'm going to Tokyo Disneyland and I'm going to walk all around Tokyo, and I'm going to Kyoto to the bamboo forest. I'm going to eat so much sushi. It's going to be amazing. Is it weird that I'm not going until April but I've already started packing? ;) I'm trying to learn a bit of Japanese, too. Toire wa doko desu ka? Where is the bathroom? Ha ha!
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No, just do it for you, then tell you to sit tight (excuse the pun) for 10 minutes, then go and do your business.

It is extremely cheap to just fly to somewhere in Europe! Although, you guys over in the U.S can fly, just to different states - now where is the fun in that?! I feel for you!

@ninjette - I am so, so, sorry you are going through this. I honestly do not know what to say, but I do know I am sending you big hugs. :( I'm sorry. It's definitely not IBS, but convincing them sounds like to be a right pain. Please keep persevering, as you can't let this continue. Sending all my love and hope to you! I agree with Izzy, GI problems can be extremely tricky to diagnose and not all doctors seem to agree with others. It's just finding those that listen to you and will do all in their power to get you into a state of feeling a little better.
 
Gadget, I'm so sorry to hear all this. I think you need to find a new doctor right away because that's horrible. I agree with Kelleh, keep fighting, don't give up. For what it's worth, a girl who was a regular in the Undiagnosed Club a few years back, she got fed up at one point and gave up. She had been told it was IBS so many times, so she decided to just act as if it was IBS and try to move on with life. Since fiber helps IBS, she ate a big salad with nuts and dried fruit. And gave herself a partial obstruction (that was the first day she had given up, by the way). Long story short - you can't just give up when you have something like this going on, because your body isn't going to let you. You know it's more than "just IBS" so keep fighting for answers. I know it's incredibly difficult and frustrating, but you have to keep fighting. We're all here for you if you need to vent or talk. Hang in there, hun.

Kelleh, yeah, that's basically what they did for me too. I'm fortunate that there's a fancy brand-new GI clinic that I get to go to, and they know me well enough that they always give me the nicest room (yes, there are private rooms) and the nicest room has its own private bathroom. So the nurse did the enema, told me to wait 10 minutes, I made it to 2 minutes and zipped into the bathroom. Then the nurse came back, repeat. :p I'm not sure what the bathroom situation is like in UK hospitals, but here at my GI clinic I had my own bathroom 5 feet away from my bed, so that part wasn't bad at all.

And actually, it's not even super cheap to fly from state to state (when hubby and I flew to California awhile back, those plane tickets were like $300 each which is definitely not cheap). It is interesting to travel to another state if it's really different - like, I live in the upper Midwest/ Great Lakes region so there's a lot of trees and lakes here and we get cold & snowy winters. Going somewhere like Arizona, where there are red rocks and canyons and cacti and it's hot weather year-round, that is quite a change and pretty interesting. But travelling around the local states here, it's kind of dullsville. Minnesota looks the same as Wisconsin. Iowa has nothing but cornfields - literally, I drove halfway across Iowa once, and it was cornfields and nothing but cornfields for hours. Soooo boring. And Illinois seems to have nothing but shopping malls and bad traffic, it's an ugly state. I wish I could afford more international travel. Seriously excited about going to Japan, though. I'm going with my mom and she's paying for a lot of it, but I'm going to pay for a bunch of stuff too and I know it's going to be pricey. It's a huge bucket-list item though and will likely be the trip of a lifetime so I'm cool with paying a lot of money to have an experience like that.

How's everyone doing today? I am okay but having a bit of a weird time tummy-wise. Last night before bed, I had some wicked d. You know when it feels like hot lava is pouring out of you? It was that sort of d, very unpleasant. I hadn't eaten anything iffy so I don't know what brought on the hot lava. So this morning when I got up I was still expecting to have d, but nope - I actually had a perfectly formed "normal" bowel movement! It was like a poo so perfect it should be bronzed and put on the mantel. :p I seriously don't know how or why my body has these weird swings - to go from hot lava d to perfect poo in like 8 hours for no reason, so odd.
 
@Cat - Wow, that sounds awesome! Do they have to do it twice, or was that because it was a full colonoscopy? I think it depends on the hospital for us. I know that if it were in the private hospital I used to work in, they'd do it in an inpatient room, just so you were comfortable. Not sure about one wholly NHS hospital, may just be put in a room and told to run to the nearest bathroom. :lol: Not entirely sure!

I can imagine your weather/time zones are just as exciting as going to a different country?! Wow, have a good time in Japan! That sounds awesome. Have you ever been outside of the U.S? Don't come here to England, it's absolutely pouring down with rain. :p It's very glum today!

In response to the how is everybody.. - I WAS ok. Until I had to do a training course, which was awesome by the way, but, I had to have breakfast earlier this morning than normal, plus lunch was going to be a bit later. Stomach was the most vocal thing in the entire room during the course, I felt so embarrassed. By the time I got to work, any hunger I had felt had gone, and then all of a sudden, BAM. Stomach ache. Full blown stomach ache, complete with my horrible pinching and stabbing pains in my LLQ. Doubled up on codeine and paracetamol, plus tried some peppermint tea. Nada. None of it has touched it, really. Had food, that didn't help either, in fact made it worse. BUT, I am high off all of these again, so I guess I have something else to concentrate on! I definitely can't concentrate on work right now!

It's nice to have a 'perfect' poo isn't it?! It actually is quite exciting! :lol:
 
I've never been on a plane as an adult, actually! Been thinking that I should, but I'm surrounded by homebodies who hate travel so it's not the easiest task :p

I feel okay. Mostly heartburn and pain after eating. My pill cam is coming up in two weeks so I'm a bit nervous about that. I'm not great at swallowing pills, my Omeprazole capsules are pretty much the biggest I'm used to taking and I've heard pill cams are large-ish?

Mostly I'm just annoyed that my GI is insisting we do this before any further hernia/GERD exams, since that's what's bothering me the most right now.

@kellehbeans LOL life sure does change when you have GI illness doesn't it? I've never had to pay so much attention to poo as I have since I got sick.
 
Kelleh, the 2 enemas were just for the sigmoidoscopy. (For full colonoscopy you have to drink the icky laxative drink and starve yourself for a day.) I'm not sure why it's 2 enemas, it must work better than one I guess. They just need you cleaned out to the sigmoid so I guess 2 enemas is what it takes to do that.

Yes, I have been outside the US - I've been to Canada a handful of times, been to Mexico once, and Europe once (a couple weeks in Germany with a couple days in Austria and a day in Italy). And I've been to well over half of the US states so I've travelled domestically quite a bit too. I've never been to Asia so I know that'll be amazing and very different from what I'm used to.

Izzie, for what it's worth - I'm also awful at swallowing pills, particularly big pills. I found the pill cam very easy to swallow, though. They put some stuff on it which helps it slide down your throat easily. I was sure I was going to fail at swallowing it as it is a rather large pill plus they made me swallow it first thing in the morning when my nausea tends to be at its worst, but I got it down on the first try with no issues at all. So try not to worry about that too much. It was surprisingly easy so I hope that's your experience too. The worst part of the pill cam for me was that they made me do 1/2 colonoscopy prep (so half the usual amount of laxative) to get my small intestine cleaned out. Yuck. Are they making you do the laxative before your pill cam as well? Not all doctors do, some just allow you to fast before the pill cam. Others insist on the full colonoscopy prep, so I ended up in the middle with half prep.
 
@Izzie - YES, yes it does. Haha. I was impressed by my one yesterday. I probably won't go into much detail, but it was still mucus-y. But it made me laugh. I've stopped going so often every day, and I'm going once every 2 days, but my stomach is still hurting! It won't be long before the D starts again, it feels like it usually does a couple of days before.. Oh well! But always paying attention to my poo now! I never did before either!

@Cat - Ah, do you think they did 2 because you didn't keep it in for long, or is that just a standard procedure do you reckon?

Canada sounds awesome! One of the guys here at work used to visit it a lot after his ex-girlfriend moved over there, but then long distance took its toll etc. You sound very well travelled though! I am jealous. I have yet to travel to the U.S. It's on my list! :)

I wonder how easy it is for a doctor to get you to take a pill cam, I am scared my problems are in my small bowel rather than my colon. No idea, I just need to chill until my tests! I'm also awful at swallowing pills! When is your pill cam again, Izzie?
 
@Cat-a-Tonic I have to prep too, yes, but only 1/4 of the amount you'd take before a colonoscopy. So that's a blessing. I thought it tasted like pennies and dirt. Not pleasant. I kept my concentrated apple juice chaser nearby though, so it was alright :p

@kellehbeans It's in quite exactly 2 weeks.
 
Wow, these things truly are coming round quickly aren't they! Soon it'll be my scope! But let's hope and pray that it goes well for you and they find something.

Ugh. Stomach pains. Not touched at all today by any medications I have taken. Meant to be going out for dinner. Not sure I can muster up the energy/strength or want to get away from my bed once I get home from work.
 
Kelleh, they told me in my instructions ahead of time that it would be 2 enemas, so I think that's standard for everyone. I definitely knew it was going to be 2 when I went in, because I recall during and after the first one, I was just dreading the second one because the first was miserable and I knew the 2nd wouldn't be any better.

Yeah, Canada is nice. I went to Niagara Falls a few years back and I saw it from both the US side and the Canada side. Both sides are nice (and actually quite different) but the Canada side is definitely the more scenic of the two. If you ever travel to Canada, Niagara Falls is my favorite Canadian place that I've been to. (I went in the autumn, but I've heard that it's actually the most beautiful in January - even though it's freezing cold, the falls partially freezes over and it's apparently an amazingly beautiful sight to behold, so that would be my advice for you if you ever travel to Canada.) If you ever travel to the US, I'd probably recommend the Southwest - Arizona, Utah. The Grand Canyon is incredible and it's probably something that everyone should see at least once in their lives. And the desert in the southwest is so different from anywhere else, it's like being on another planet to be surrounded by red rocks and cacti and lizards and road runners. I have an aunt who lives in Arizona and she has road runners who come into her yard, she puts out food for them! It's so different from what the climate and environment is like where I live. The Rocky mountains in Colorado are also beautiful and probably my 2nd favorite place in the US - my uncle took us hiking up in the Rockies, we hiked up and up and up, and when we got to the top - there was a gorgeous lake up there! It was so odd and unexpected and beautiful. It was 80+ degrees so quite warm but there was still snow up there in the mountains, so we had a snowball fight. It was an experience I won't ever forget, such a cool place to explore.

We travelled a lot when I was a kid, that was something that my parents did right - they made sure my brother and I got to travel a lot and see a lot of different places. I wish I could travel more as an adult - being sick has drained my finances and I'm admittedly a bit afraid to step too far away from my comfort zone so I haven't travelled a lot these days. My mom basically wants to go to Japan (she's going to run a marathon there) and is bringing me with her, which is the reason for that trip. If that trip goes well and I find that I can travel internationally without experiencing a ton of repercussions from my illness, then I think that'll give me a lot of confidence and I'll hopefully travel a lot more in the future. Right now I'm super excited yet a bit nervous about the trip. If something bad happens with my health, I'll be so far from home and with a very daunting language barrier. I'm trying to be prepared, though. I'm keeping a journal with a lot of Japanese vocab words (words for things like, help, pain, hospital, lost, etc) that could come in handy. I also have an American friend who lives in Tokyo, so if all else fails I could ask him to come to my aid and translate for me. Plus, I know that I can eat a lot of Japanese foods - noodles, rice, sushi, seafood, tofu are all very safe foods for me, so hopefully I'll be okay. I really want to stuff my face, I love sushi! :) My only real issue with Japanese food is that I might over-eat and make my guts angry that way, ha ha.

Izzie, it's good that you only have to do 1/4 prep, but icky that you have to still do it at all. Hopefully the worst (the taste and the bathroom trips) will be over with relatively quickly since it's a smaller amount. And oh dear, pennies and dirt?! What was the name of that prep? Last time I did Prepopik (which also goes by the names Picolax or Pico Salax) and it actually tasted almost nice - it was sort of like fizzy fruit-flavored soda although it had a chemical taste to it as well. Maybe check with your GI and see if you have different options for which laxative you can do before the pill cam? None of the preps taste nice, but some are definitely less awful than others.
 
I think it was called Laxabon. It just tasted like no attempts had been made to make it taste better :p I had to rinse my mouth out with apple juice like all day.

Also your mother is a badass - a MARATHON in JAPAN?! That is fantastic.
 
Hah, my mom is a marathon fanatic. She's run over 100 marathons (she did her 100th last summer). She's already completed the "50 states club" as well - she's done one marathon in each of the US states. So then she moved on to doing one marathon on each of the continents, and Asia (Japan) will be her 7th and final continent. (Yes, she's run a marathon on Antarctica!) I've jokingly told her that she's going to have to run on the moon or Mars next, ha ha. It's not all good, though. She definitely over-exercises, she overdoes it with the running. She's given herself running-induced asthma and early-onset osteoporosis because of how much she runs. I'm hoping she'll slow down a bit and do fewer marathons once she completes the marathon in Japan. Her doctor even told her to maybe start doing half marathons instead of full. She did one half marathon and then went right back to full marathons. :p I'm all for exercise, don't get me wrong, but my mom is an example of exercise addiction and the consequences of exercising too much. Still, I'm grateful for the opportunity to go to Japan, and I'll be at the marathon finish line to cheer for her. :)
 
akgirl said:
Kiki Q - I know exactly how you feel! And it sucks. It's like doctors don't take us seriously, and it's ridiculous. I know I'm not sick because I'm depressed or anxious or stressed.....there's something else going on in me. I'm sorry that you're going through this too. I know how much it sucks, but it's a little comforting knowing that you aren't alone. I hope you can find a good doctor who can figure it out. I haven't been able to find one yet though, and I even went to the Mayo Clinic. I can't believe you're going through this during your senior year though! That's horrible. :(
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It is a little comforting knowing that other people know how you feel, you know? Like with me I think the hardest thing is missing out on things and also the way that the doctors try to say "its all in our heads". It's so frustrating. But I mean other than that my teachers are super cooperative about helping me do well and about turning in work I've missed. So that's a plus. It's so helpful when they try to understand because I had a teacher who didn't know about how common bowel issues are and she would call me out in front of the whole class for going to the bathroom so many times. So having the support of my teachers and counselor makes all the difference.
 
Cat-a-Tonic said:
Kelleh, no, I didn't go to the gym yesterday but I am going today. I'm feeling significantly better and I actually slept last night. Hubby passed a kidney stone and hopefully it was the only one he had. He didn't get up to urinate at all last night so that's very good news! We both actually got to sleep, ha ha. So I'm going to the gym today for sure and I'm so excited about it. :)

Good luck with your sigmoidoscopy! I had one earlier this year. It wasn't too bad, the enemas they gave me beforehand were by far the worst part. I'm not sure if they do the same thing in the UK, but in the US, they don't make you drink the laxative prep stuff for just a sigmoid scope. They do 2 enemas on you just beforehand to clear you out up through the sigmoid. The enemas, it felt like they put a LOT of liquid in me and it immediately triggered massive cramps and a feeling like I need to go to the bathroom NOW. And then they asked if I could try to hold the enema in for 10 minutes. Um, no! I tried, I really did, but I don't think I even made it to 2 minutes. It was a rough 2 minutes for sure, and then I had to do the whole thing over again with the 2nd enema (and once again didn't even get close to 10 minutes). Yuck. But then the scope itself was fine, even though the sedation failed for me. I didn't have any pain, and I don't remember a lot, but I was definitely awake and talking the whole time (I recall that I kept trying to see what was going on on the monitor, but I didn't have my glasses on so I kept complaining "I can't seeeeeeeee" and I'm pretty sure my doctor told me to be quiet, hah). So yeah, even with failed sedation, that scope was a piece of cake. And even though I could barely hold in those enemas at all, they still cleared me out just fine. So don't worry if you can't follow their instructions on the enemas, it should still be okay.

Izzie, yeah, I also didn't have even close to 35 bathroom trips when doing colonoscopy prep - it was just a flare thing I guess! That was a particularly bad flare, too, one of the ones that kept me up all night. I recall that at one point I actually found a semi-comfortable position on the couch and I managed to fall asleep, for about 15 minutes. Then my guts jolted me awake with pain and an urgent need to get to the bathroom yet again, and I was covered with a thin layer of night sweats after only 15 minutes of sleeping. That flare was over 5 years ago, during the first year that I was ill (that was the year that I was the sickest - ever since that year, I've been on IBD meds and spent some time in remission and haven't had flares that were quite that bad ever since). That was the flare that drove me to finally ask to try prednisone, because you can't tell me that IBS makes you go 35 times in 24 hours or keeps you up all night or jolts you awake with night sweats and pain and all sorts of horribleness. Ugh.

Kiki and akgirl, I'm with you guys. Of course, when dealing with a serious illness, things like depression and stress and anxiety come along with it. But it's ridiculous to say that depression or stress or anxiety is the cause of your illness - just the opposite, the illness is causing the stress and depression etc! So many doctors seem to not understand that, it's just absurd. Seriously, doc, you think that I'm stressed and that's making me bleed out my butt and go to the bathroom 35 times in a day, huh? I suppose the stress also caused my arthritis? Sometimes I really wonder what they actually teach in med school. I once had a doctor tell me that I "look depressed" - really? Sure, I've dealt with depression. But it's a symptom of the illness, the illness is not a symptom of the depression. So many doctors get that backwards.
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It's good to hear that it's not just me. The doctors have an air about them when they say it that makes you wonder if you actually may be going insane. I've done yoga, meditation, and stopped stressing as much as possible and the pain was still there. And I realized that the doctors are the crazy ones sometimes.
 
I almost cried myself to sleep last night. My period has come 4 days early, of a super short 26 cycle. The pain is just too much, it's giving me stomach aches. So stomach ache, the pinching/stabbing pain PLUS these pains, is lethal. I can't seem to get rid of them with a hot water bottle, or any kind of meds, even codeine. I am in so much pain and I am at a total loss. :( I'm here at work, and I probably shouldn't be. My manager is off with a migraine, so that makes my life a little more difficult. I even had a cigarette this morning, for no reason at all apart from hoping it may help. Of course it didn't.
I've called my doctor but I don't know what to do. The hot water bottle is out at work already. :( I am SO tired.
 
That sounds absolutely miserable kellehbeans. If you have pain that's bad enough that codeine doesn't help? I'd go to the ER, I think.
 
I called my doctor. This was my actual family doctor I've had for years. She hasn't dealt with me for the stomach pain. She did read my notes, but not far back enough. She asked me if this all started from 'bottom pain', and I was like, that's only been 4 months. The rest has been 9. But either way, she just explained to me she can't give me anything else because I am under investigation to help potential inflammation, but she wants me to try codeine doubled up 4 times a day. It doesn't help that the period pains are here. But now I've got to take even more Laxido too to make sure I'm going to the loo as I've been going every other day rather than 5-9 each day. :lol: Despite it being soft it REALLY hurts to go still. The Pred didn't work this time. :(

EDIT: I am extremely miserable!
 
I've already been taking double codeine, just not 4 times a day. Maybe once or twice. But now I have the go ahead, I won't feel so guilty on messing about with the prescription! I've even naughtily been trying ibuprofen, and just nothing. Ugh. I'm tired. I think the caffeine is wearing off. :( I hate being a woman/having an undiagnosed illness.
 
I really wish I didn't have to think so much about food. It used to be such a non-issue. I'd literally grab whatever was handy when I had to eat and that was that. I think I could be okay with having a pretty restrictive diet if it wasn't so inconvenient!

I have to figure out some routines regarding this stuff because now if I try to stay busy I constantly end up in situations where I "have to" eat something that's going to trigger horrible reflux because there are no other options. Especially as a commuter it's tough because I can't eat at home, and now I can't really eat out anymore, and I'm so horrible at planning that bringing lunch hardly ever happens.

Not to mention the times where I go out to eat with other people socially. WHY oh why do I have to have friends who love Thai and Indian and Mexican food?!

How do you guys handle lunch/having to eat on the go?
 
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I really wish that I came here and everyone was doing fantastic, with great supportive drs. I'm sorry that's not the case :( Hugs to all.

I am really struggling through this cold. Yesterday I spent most of my day napping, so unlike me. I tried to read, and couldn't focus. Tried to knit, same issue. Eventually watched random stuff on youtube while I dozed.

In addition, my RLQ pain is back. I kinda sorta think/hope this might be ovulation pain, and NOT my usual pain, as it's the right timing in my cycle. But it's been here for almost 4 days now, and I think o-pain is brief?

I haven't been eating much at all due to the cold. I can't taste much and all I want are liquids anyway. Today I might just focus on teas. But I'm worried because I'm supposed to be keeping a food diary for a nutritionist appt. That was supposed to be yesterday but I had to cancel, just too ill. So now it's next week. And she'll see that yesterday all I ate was a tortilla with peanut butter and some honey, along with my morning coffee and tons of teas. Ugh. Oh well, I'm not going lie and make up what I'm eating.

Sorry to be all mememe!

I love all the travel talk, I just can't keep much straight in my head right now, so my replies would be all a jumble and this is easier :p
 
@Izzie - on the go, I generally go for sandwiches with as little salad or any 'hard' bits in them, like granary bread or any kind of seeded. It's much easier than pre-packed salads to choose something. Anything without sauces also, including Mayo. I avoid sugar free/low fat as they usually include additives that I don't absorb properly. My favourite and also safe is chicken salad and I pull the tomatoes out as it's usually just lettuce and cucumber. That or a plain ham sandwich. If I'm feeling really bad, I'll pick up a slimming shake, just to get me by until I can get somewhere to make food that I know is OK for me. I only usually stick to bananas too in terms of fruits.

@wildmtnhoney - I always think I'm "me me me" when I speak too, so I wouldn't say you're alone on that 1! But, I will have to say that what you do say, I DO NOT think that at all, so stop thinking about it yourself! We are all hear to complain, share stories and support others.

Tea is good! Just make sure you can keep your energy up. Try drinking some Lemsip or simply honey and lemon for the cold, just get better soon and take it easy! Maybe to get some calories in, try some shakes, protein or the meal replacement ones - the latter being the better choice for nutrients! I am totally jealous of your napping though, I've tried so many times today and failed miserably. Get better soon honey!

Well today has been a waste. Been either crying because I feel rubbish, or just throwing my own pity party! I think I need to go shower!
 
So sorry about your crappy day, kellehbeans, and your cold Wildmtnhoney!

I've been thinking lately, I do have a psychologist that I hardly see but that handles my ADHD stuff - do any of you think it'd be worth it to have a mental health professional talk to a GI? Because like, she knows that I haven't had any psychosomatic things, and definitely that I wouldn't have such specific symptoms if it were just stress (if I'm just being anxious and paranoid I get a headache, dizziness and a lingering sense of doom, not fake heartburn, you know?)

It's just not possible for me to get to another GI right now and I'm willing to try whatever to make him effing listen to me. He's straight-up telling my mother that he doesn't expect to find anything wrong, dismisses the things that have already been found to be wrong, and says it's psychosomatic. He even uses the word.

So I'll do it but I'm not sure if it's a bad idea or not...
 
@Izzie - Worth a try I guess? I wouldn't know if they do communicate or not, considering they're both quite different specialists. Do what you think is best.

Ugh. I didn't sleep at all yesterday, at night or during the day. I took 2 hours to fall asleep last night (my stomach was going crazy), and then an hour later I was awoken by my stomach actually hurting, like a stabbing to the left of my navel.. when I run my hand over it, there was a lump! No idea what! I was sweating though, but that was probably because I managed to wrap myself up in my duvet and blanket.
 
kellehbeans said:
@Izzie - Worth a try I guess? I wouldn't know if they do communicate or not, considering they're both quite different specialists. Do what you think is best.

Ugh. I didn't sleep at all yesterday, at night or during the day. I took 2 hours to fall asleep last night (my stomach was going crazy), and then an hour later I was awoken by my stomach actually hurting, like a stabbing to the left of my navel.. when I run my hand over it, there was a lump! No idea what! I was sweating though, but that was probably because I managed to wrap myself up in my duvet and blanket.
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Well normally they wouldn't, but since he's soooooo darn interested in the fact that I've seen a psychologist at all you'd figure he'd be somewhat interested in what she actually has to say :lol2:

Pain AND no sleep?! You're not having a good week, dare I say. Really hope things get better for you real quick.
 
Izzie said:
Well normally they wouldn't, but since he's soooooo darn interested in the fact that I've seen a psychologist at all you'd figure he'd be somewhat interested in what she actually has to say :lol2:

Pain AND no sleep?! You're not having a good week, dare I say. Really hope things get better for you real quick.
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Then I say it's pretty much worth it. Get in contact with your psychologist and tell them what is going on. Do you still regularly see your psychologist?

I just ate porridge, although now my stomach is going to go crazy because it had an ingredient in that I'm sensitive to. I didn't realise until I had bought the pot and put the water in. Today is going to be rough, I'm going to be craving every single carbohydrate I can stuff into my cake hole. :(

Oh, and now the pain near my belly button has started again. WHY, JUST WHY!? It's literally above it, and a little to the left. Why has it started? I am actually becoming so emotionally weak because of this all again! :ybatty:
 
I'm so blessed to have found this forum, thank you all for your support. In my attempt to get my co-pay back from that awful doctor's visit, the guy on the phone said, "We just received the CT images and the doctors are reconsidering." Reconsidering? That's funny. Only thing that needs to be reconsidered is the way I was treated in that office. Should be getting that money back, definitely not going to that CT, I'm done with their GI department. The blood test they gave me was normal all across the board save a slightly elevated lymphocyte count. Hmm...

My regular gastro is out of the country until January so I had an appointment yesterday with his partner who is excellent. I'm back on Pentasa from Apriso, if I can avoid any of the heavy meds as long as possible that's fine with me, I don't want to overdo it in the early stages of this disease. He told me about other options I have with treatment, I have an appointment with a naturopath next month and am looking into a pain clinic to see if any of it helps. He wants stool samples (how fun) and a repeat Prometheus blood test which I worry about since my test in January was negative but I've had plenty of disease activity since so who knows?

Overall, things are getting better. I'm trying not to let my experience at the university hospital get me down too much. Very much needing to alleviate pain as much as possible but my outlook is a bit brighter.
 
@gadgetninjette91 - These forums are pretty awesome, aren't they? I find it SO useful here, to help anxiety and just help take me away from work! :lol:

What did they mean reconsidering? Reconsidering the way they are with you, or stripping you from a diagnosis/undiagnosis? What was the conclusion on the CT scan anyway?

Really hope this all gets sorted, you are having such a rough time! Just remember where we all are, will definitely always be here for you! I'm so glad to hear that you are feeling a bit better with everything going on. Always a breath of fresh air to hear.

How is everybody doing? How was everybody's weekends? I received my letter for my ultrasound referral, with an appointment for this Thursday! Unfortunately for me, it's at the hospital closest to me. That's unfortunate because the parking is horrific and causes me a stupid amount of stress, plus it's really expensive to park! But, hey, let's go and see if my ovaries are operating correctly and not causing these bowel problems! I'm almost 100% sure they're fine, but hey, need to rule things out!

Honestly can't wait for this week to be over. This time next week, I'll be on my way to my first holiday of the year!
 
Wildmtn, hopefully the LRQ pains are just from the cold. For me, whenever I catch a cold or virus, my guts always act up more too. It seems like, my immune system turns on to fight the cold, but it also fights my guts more while it's activated. Or something along those lines. My guts tend to improve as the cold/virus eases up so hopefully that'll be the case for you as well.

Speaking of catching a cold, I am going to visit my 5 nieces & nephews this weekend. I always come down with something when I see those kids, so I just hope it's not a super nasty one. They just started back at school so I'm presuming there are all sorts of germs going around right now. I am sure I'll catch whatever's been going around at their school.

Kelleh, the lump you described - definitely let your doctors know about that. It could be from inflammation (or it could be from something else such as a hernia). Was it warm to the touch or tender from the outside? And as for the pain above and a little to the left of your navel - that sounds like it's in the stomach itself, could be gastritis. That's about where my gastritis pain is usually located, and mine is sharp and stabby as well. Depending on the cause of the gastritis, sometimes reflux medications can help. Also make sure to eat very bland foods for a bit, nothing acidic.

Gadget, glad to hear you're back on Pentasa and were able to see a decent doctor. What other treatment options did he offer you?

Izzie, as far as going out to eat - relatively bland rice dishes or sandwiches on white bread are pretty safe for me. Usually at restaurants like the ones you mentioned, they can alter the amount of spices and other ingredients. I typically ask for no spice at all (even though I can actually do a bit of spicy foods these days, I'd rather not push my luck and have an issue in a restaurant, so I save my spicy eating for home). Unlike Kelleh, I actually can have mayo, so I usually have something like tuna salad with mayo on white bread. Or turkey with mayo, that's very safe for me as well. Restaurants that serve breakfast all day are usually my best bet - I can do eggs & toast with no trouble. (My hubby actually made fun of me, because we often have eggs & toast at home, and at a restaurant I ordered eggs & toast - he was like, why even bother going to a restaurant? Um, to pay someone else to make eggs and toast for me, ha ha.) If I know that I'm going to a restaurant ahead of time and I know what restaurant it is, I always research the menu online beforehand so that I have an idea of what I can eat or I at least know what questions to ask the waiter.

How's everyone feeling today? I had a bit of a rough patch on Friday afternoon/evening (went to the gym, pushed myself a bit too hard, and then neglected to eat right away afterwards - that made my guts quite unhappy so I had some nausea and d and spent the evening with my heating pad on my stomach). But other than that, I've been surprisingly well. I had to go out of town for work for a couple days, and I ended up staying with my parents as my work assignment was in their city. That's always a bit stressful to have to spend time with them, but fortunately my guts seemed okay with it. I had a good weekend and I feel well today - don't quite trust it since my times of feeling well don't ever seem to last very long. So I'm cautiously okay, ha ha. I don't think I'll ever be completely and totally okay both physically and mentally, because even if I'm feeling physically stellar, I'll always be looking over my shoulder for whatever symptoms are sneaking up on me. It's like it's impossible to stop thinking about being ill, even when I feel fine physically. I think that's the main thing that doctors (at least my GI) don't get about this kind of illness - the mental aspect can be far worse than the physical. Anyway, I feel like a massive complainer now! Wah wah, I feel good and I can't just accept it and enjoy it, waaaaah. :p
 
Gadget - While I'm glad they're willing to reconsider, I understand not wanting to work with them, too!

Kelleh, hope the ovaries are all good!

Cat, that could very well be it - fighting the virus, that is. And I totally agree about the mental part. Always looking over your shoulder, or wondering what is around the next corner, is so tiring!

I had an OKish weekend. Mostly chilled and hung out around home, 'cuz this virus just won't end.
 
@Cat-a-Tonic it IS possible to not think about being sick. It really is. In part because you have to be proactive and make good choices and also because pain/symptoms kind of constantly remind you. I've had both doctors and family tell me to just stop thinking about it for a while, but if I'm having pain and a bad day, I can't not think about it. It makes itself known :p

I have my appointment with my GP tomorrow, so I'm hoping that'll be helpful. Getting some bloodwork done for my GI while I'm there but I'm also going to complain about everything so far and see if I can't somehow get to a different GI, or at the very least get a GERD diagnosis and treatment from somewhere else while I go through the motions of everything else with the idiot I already see.

My mom is coming with me for backup. It's kind of gotten to the point where I don't want to see a doctor alone anymore, because I've had so many instances of them saying one thing to me in person and then either not following through on their promises or just having a completely different attitude the next time I see them. So I want an extra pair of ears in there with me.
 
Izzie, I've found that the only time that I'm able to not think about being sick, is when I'm in the gym. In the gym I feel so good and healthy that it's easy to forget I'm ill, plus my brain is full of things like counting reps and paying attention to my form and stuff like that. So yeah, that's a big reason why I work out so much - it's the only time I really get to feel normal and healthy and take a break from being sick girl for a little while. The rest of the time I am thinking about it in one way or another - thinking, did I take my meds and supplements and psyllium today? What's this pain mean, is this a flare or gas or something I ate? Why is my body doing this new weird thing? Should I eat that or will I pay for it, and if I pay for it, how bad will it be? Etc. Thoughts about my illness or things related to my illness are almost constant, the gym is my one sanctuary from having to think about being sick.

Good luck tomorrow! I would hope that your GP can at least help with the GERD stuff - my GP diagnosed me with GERD just based on my symptoms so hopefully your GP can do something similar. Keep us posted on what happens, I hope it's good news!

Wildmtn, I hope that stubborn virus goes away soon! It always seems so wrong, like insult to injury, to get a virus on top of chronic health issues. It's like, gee, thanks, kick me while I'm down. Hope you feel better soon!
 
Cat, I actually called my doctor and told them about the lump on Friday. He told me it was nothing and probably the way the small intestine is with the bumpy structure on the inside, or a pocket of air or some poo! The same spot still hurts from time to time, but I've had no lump again. This sigmoidscope is not going to find out what this is. I'm so worried I'm having the wrong test.

I honestly could not tell you if it was warm or not, I was half asleep when I felt it! But it's just on the upper left of my belly button, like, right next to it. It's like a stabbing pain when it does hurt.

Sorry to hear the gym did that to you! You're not on your own with that 1. I get horrible stomach aches, yet I still go! In fact, I went tonight. I'm sick of being overweight when this time last year I was about 25lbs lighter. I need to kick my own butt, but it's not so fun with GI problems. (I'm not implying it's fun to lose weight, though! That's a morbid thought!) you're also not a massive complainer so don't worry there! Glad to hear apart from this that you're good though! Sounds like your stomach has finally given you a rest for a bit!

@wildmtnhoney - I'm 99.98% sure my bowel problems are not due to my reproductive system being faulty in any way. Although, that small percentage I left out is concerned that maybe it is - and if it is, I'll 110% blame myself.

@Izzie - good luck! Good idea on taking your mum with you, sometimes we don't hear things when we are raging on the inside at some of their silly comments!
 
Kelleh, you're not having the wrong test, you're having a test. :) It might find something yet - no, it likely won't find the cause of your lump/pain, but it's still a worthwhile test to have. You've been having rectal issues & pain anyway, so this should at least shed some light on that if nothing else. (Make sure they take biopsies during the scope so that anything microscopic can be found!) And if this test does or doesn't find something, you can still ask for further tests either way. One thing at a time - see what this test finds, then go from there.

I need to lose some weight as well. Every time I've been on steroids I've gained a bit more weight and it all seems to settle in my belly area. I have at least 10 lbs to lose right now and my belly is just ugly. It is so fat, it sticks out over my pants like a muffin top. I look like I'm pregnant. In fact, the other day hubby and I were at the store, walking past the maternity clothes section on our way to a different section of the store - hubby jokingly pointed to the maternity clothes and asked me if I needed any "big belly" clothes. I loudly said, "No, I'm not pregnant, I'm just fat." :p I'm not technically overweight, I'm still within the normal BMI range, but my stomach fat is just awful and I hate it. Going to the gym makes me feel better mentally and physically, but doesn't really help so much with weight loss for me. This steroid belly flab is so stubborn, it's like it's not enough to work out. I need to eat less, I guess. And that's hard because I love food! I feel like a complainer again, whining about 10 lbs, but it really does bother me. Bleh. I have a corset which makes me look awesome, but I can't wear it for long periods of time or it really starts to hurt and rile up my GERD and I can't breathe properly. The benefits are not worth the downsides.

So yeah, that was rambly, but I totally get it and I know it's not fun to try to lose weight. Plus I have dealt with anorexia in the past, and I know you've been dealing with bulimia, so that adds a whole other layer of complexity - trying to lose weight the "right" way without compulsing or having those destructive thoughts & behaviors. Add all that together with IBD-like symptoms and it's just a mess! Which is probably why I haven't managed to lose this stubborn belly flab yet. When I look at the big picture, the belly flab isn't important and my health is, I know that. I really do want to lose the flab, though, it's just so complicated dealing with all my issues to get there in a safe and healthy way. It's definitely very hard!
 
Actually, you're probably right Cat. :) We shall see what happens. I am nervous, but I have 3 holidays to go through before my scope, one starting next week! (Can you tell I am excited!?) Typical work have not given me any proper work for weeks, and when I go away, they're giving me LOADS. So, I am pretty much going to be flat out, after Wednesday. When I have a hospital appointment on Thursday. So, this is totally stressing me out, and guess what, it makes my stomach worse! Last night I had a bit of a fiasco, plus exercise, and I was uber stressed out. Luckily sleep sorted it out, as usually when I've exercised, the stomach wakes me up.

They're definitely taking biopsies, they told me it'd feel like a pinching. But, then I'm worried they're not going to find anything because I've never had any active inflammation etc. show up on my blood tests. :( I know next step is MRI, but not entirely sure how far up he'll be looking at my insides, whether it'll just be lower pelvis, or to extend to my upper abdominals.

I wish I'd only gained 10lbs! I gained 30lbs since January - OK, I was underweight and body obviously wasn't very happy, but 30lbs!!! I'm just bordered onto overweight! Definitely going to knuckle down again!! Especially when I have my Christmas party (that causes no end of anxiety) coming up in December! Although, with holidays, not sure I'm going to do very well! But, I can make right choices, I know I can. :)

No word of a lie, maternity clothes are meant to be brilliant for days when you bloat! When I was a lot less weighty, I used to bloat so much I *DID* look pregnant. I wish I'd taken my own advice and bought maternity clothes, just for those days only! Now I'm just fat. :p

Agree with you on the gym one, mentally and physically, although afterwards, my stomach generally hurts. Usually into the next day too. At the moment, (fingers crossed) I am OK!

Eating disorders are not fun. They never totally go away, you just need to learn to deal with them. I have got much better, but they're still there. I still feel inadequate and all the other feelings that come behind eating/having some weight. I am still learning the ways of eating right, and keeping myself energized without the compulsion to do anything reaaaalllly stupid. I have stopped the stupidest stupidity that comes with eating disorders, mainly because I threw up blood once and my stomach hurt for days!

IBD + ED = Worst idea of fun ever! Definitely an add-on to wanting to recover from the ED. My 'quiet' phases last longer these days, so definitely happy with that. But definitely don't call yourself a whinger at 10lbs gained - we know where we like to have our bodies (in a way!) and when you gain 10lbs or even 5lbs, it does make us feel like crap! So do not fear. You're not a whinger. :)

Sorry if this was really rambly, I've just got into work and I haven't yet finished my travel mug of coffee!
 
hi, I am 22 years old, my illness started in december when i would randomly feel sick and start vomitting. I then developed a pain in the URQ of my abdomen to where it felt like i had a heat pack sitting in the inside of my body. I saw my PCP who thought maybe it was ulcers was referred to a GI doc who thought the same and wanted an EGD done. I started puking green fluid ( hadnt eaten or drank anything green recently) so I went to the ER and they thought it was ulcers because I was puking stomach bile and blood. Something happened and my GI doc got switched and I had to have a new GI doc who told me it was most likely acid reflux.... he didnt want to do an EGD but i asked him to since 3 doctors before him thought it was best... come to find out that I had inflammation of my stomach lining. (gastritis) i was told to take antiacids and change my diet.. The pain moved and is now on my upper right side going to my back, the pain didnt go away for 2 days and i got scared so i went to the ER again and told them of everything where they sent me home and said it was my gastritis and sent me on my way without any testing. 5 more months of pain i couldnt take it. I got a new doctor, and a new GI. The new GI wanted a colonoscopy done. it showed that I have 2 inflammation sites on my small intestine and she did a biopsy. she diagnosed me with ileitis, but still waiting on the results of the biopsy to know if it is Crohn's. I am on anti depressants now because i feel like i cant live my life happily.

I am in constant pain everyday. my naesuea is terrible. I have no appiteite and when i do eat i vomit. I have lost nearly 20 lbs since all this. i started at around 130 and went down to 111 i seem to go from 113-115 now. just depends on how much i can force my self to eat and to keep it down. I haev no energy at all. When I am at work i have to force my self to keep going and when im home i cant do anything but sleep or sit down. im grateful for having a loving boyfriend that takes care of me at home and for my awesome co workers who take it easy on me and help me.

I cant go to the gym anymore it takes to much i used to be able to do 30-45lbs on my shoulder press now im lucky if i can get my self to push 10lbs up 5 times.
I need an answer. 10 months of this and its gotten worse as time goes by.
 
Hi @vluquin22, welcome to the forum - from our ages and when it started, we are extremely similar! I've just turned 23 and mine started not long after yours at the beginning of February.

I'm very sorry you've gone through this! This sounds absolutely awful. You have gone through A LOT! You really need to keep pushing with your GI and doctors, the only way some people get diagnosed is that they just keep on persevering, and hope you are treated before things get a lot worse.

I'm very surprised that nobody has said anything about your weight? That's usually a massive give away! I hope for your sake, that you get diagnosed very soon, as you sound as if you are going through the most awful of times! But I am very glad you have a supportive boyfriend, everybody needs support by their side.

Just keep going back and even get more opinions from different consultants and doctors. It's the only way somebody is going to listen to you. It's a shame because Crohn's is extremely difficult to diagnose and a lot of GI's have problems with agreeing with another! Sending you hugs and hope you start feeling better soon. :hug:
 

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