Undiagnosed Club Support Group

[RosannaKate]

Quick rant...

I'm getting to inpatient now! I want to be able to start looking for a job and to go out without being constantly aware of my discomfort. I also want a name to put to the problem, it sucks not being able to say what you have to people when you're in pain or rushing to the bathroom. They just think I'm complaining about nothing...

It's only a week until my ultrasound, but it feels like a lifetime away...and there's no guarantee I get any answers. :/

Lewis, i know this is going to sound annoying, but job wise, you might be better to wait until you get a clearer picture on your condition. I had to get a job as i needed to push on as my options were with the new staying in school till 18 (17 for my year as they integrated the rules) or getting an apprenticeship. I got an apprenticeship and i have struggled the entire way through. I am on the verge of losing it and now with no diagnosis, the likelihood is i will. Its better to get a clearer picture of your illness as that gives you a starting point discussing with potential employers. I find your better to be upfront about it than hide it and then take off masses of days sick or spend most of the time your there dashing to the bathroom. For me its dashing out of meetings to the toilet constantly!!! Such a drain! Just keep positive about the ultrasound, while no it might not give you answers, there is a chance it could! Just keep going and keep smiling!
Sorry you had to miss your run its horrible sometimes when you just want to do something! I was supposed to be going out to see some old friends yesterday, but instead i was stuck in the bathroom with a sick bucket as i was so violently ill! Praying you get some answers quick!! Hugs! :hug:

 

[Cat-a-Tonic]

Rose, if it were me, I'd go back to the doctor ASAP and ask what can cause long-term chronic inflammation (if it's not IBD, how can they possibly explain it?) and also ask how they are going to treat the inflammation, regardless of its cause. I would probably ask for something like prednisone as that blitzes inflammation fast and should get you feeling a lot better very quickly. Put your foot down and demand better care from them. As the others have said, a second (third, fourth, etc) opinion is probably best as it sounds like your doctors are for some reason still not taking you seriously, but if that's not feasible right now, then you just have to put down your foot with your current doctors and fight for what you need. Mesalamine/mesalazine is an IBD med, but it's the mildest IBD med and it may not do a whole lot for active inflammation (it's meant more for maintaining remission than for getting inflammation under control). Maybe give the mesalazine a week or two to see if it does anything at all, and if not then go back to your doctor and remind them that you are inflamed and that you need something stronger.

Lewis, a 10k run - that's about 6 miles I think? I'm in shape, exercise regularly, and I'm getting back into remission, and I could not run 10k! So I'm glad you didn't attempt it. Have you been training to run the 10k? My guts aren't a big fan of running, and my bad hips hate it, I can't even run 1k before ending up in bad pain. I suppose you could have tried to walk the whole thing, but that still could have been iffy if you urgently needed a bathroom and there wasn't one available. But I'm interested to know if you've been able to train for this race? On a good day, can you run? On a good day I can lift weights, and on a so-so day I can do something like yoga - so it's possible that if you've done a lot of good training then you could have maybe run slower and completed the 10k. Like the others said, though, I'm glad you didn't - it could have gone very badly.

Ballerina, good luck with the flight! I hope it's uneventful. The last time I was on a plane, I was a bit nauseous to begin with and then there was TONS of turbulence and I get motion-sick, so I was incredibly nauseous and popping Zofran like it was candy. My parents were with me on that flight and they both handed me their puke bags as I guess I looked as bad as I felt! I managed not to puke but it got very close. So anyway, I hope your flight is way better than my last flight was!

 

[RosannaKate]

I get your point Cat, that it cant be nothing. Every single doctor i speak to is fobbing my off and i don't know who to talk to or what to do :/ hmmm! It just takes the mick that all i'm being told is although there is inflammation it isnt anything and its not causing any trouble being there. But it is isnt it! There not the ones living with these horrible symptoms that are ruining my life! I guess its another try at phoning and demanding help! They just seem to do nothing! Urghhhhh

 

[Madmouse]

Hi guys and gals - sorry for the following moan...
For the past 7/8 weeks I have had crippling joint pain, went to GP who did bloods and found inflammatory markers raised - likely dx arthritis, and to speak to GI. 3/4 weeks of completely debilitating fatigue. Had GI appt 2 weeks ago, has changed the mesalazine for sulfasalazine, but seemed completely non-concerned about the fatigue and advised I dont miss any work (I was off sick because of the fatigue). Last few days I have had worsening abdo pain and nausea, dizziness etc... - spoke to GP who said 'I cat give you anything else' - erm, I'm not asking for medication, I'm asking for a cause! Now, I know that any inflammation will cause tiredness, but I seem to be struggling to get across quite how debilitating it is, despite making it perfectly clear - any suggestions? I am not in a position to change GI as this is the only one that has been willing to treat me (without a definative dx) but he just seemed so blase about it. Also, not sure how long to leave the abdo pain etc... as want to give the change of drugs a chance and I can't be ringing my consultant with every little change. Its just sooooo frustrating as it is looking increasingly likely that I may loose my job which would be a serious problem (although I am battling them with all my might, but going off sick again isnt helping!). Sorry, rant over - I just needed to get it out of my system
Hope you guys are making progress, sorry to hear you have been having problems - just wanted to add, Roseanna, seizures can be caused by cardiac problems, but they are not to be ignored, if you can (and I know its easier said than done) chase this up with your GP and ask them to spell it out to you, Drs (and other healthcare professionals to be fair) are often useless at explaining themselves, they forget we cannot read their minds!
Happy Monday everyone

 

[StarGirrrrl]

Rosanna what I did is complain to my local Hospital about my care, and said I wanted to go somewhere else and see someone else. I pushed hard for it and eventually they got my Rheumy to do just that for me. He picked another Rheumy at another Hospital for me.

I have seen two Rheumy's at local, three Gi's locally, endocrinology locally, and an auto immune specualist in London. So goodness knows how many opinions that is now.

This guy I saw potentially saved my life so I am pretty glad I did it.

My current Rheumy nor my GP nor my local A&E bothered once to do bloods on me this year yet as soon as I see a new Dr he does them and boom! emergency situation.

Due to the lack of visible blood coming out of me and just how low my haemoglobin was whatever the cause was (which is still unclear and will be for a bit) had been going on sometime.

The Hospital I was seen at was a different health trust and a different county even it can be done. I had to get myself there in an emergency and it was manageable.

 

[Eternal_Howl]

I have tried all of that, said to him exactly what i think it is (colitis) and have explained why, his latest findings would point to that, but because the biopsies came back not implying any condition he's just instantly gone 'there's nothing wrong' there is inflammation there but it's not doing any harm to you. Oh really?!!! No harm, try i can't live my life. You tell me to eat a gluten and lactose free diet because its so high in fibre and good for you. What does he want to do, kill me?! If i eat any high fibre diet i can't get off the toilet for the next week and the pain level is just rediculious!! I get way too much pain as it is and they wont help me with the joint pain or anything, they assume the codeine (that's doing nothing) is managing it, even though i've said it's not hundreds of times.
As for foods to avoid, EVERYTHING is the answer. Anything i eat makes me horrendously poorly and it just goes straight through me! It's horrible.

As for someone else saying second opinion, this is my second GI, the second opinion. The first did not much more than a flex sig (too painful) and ruled out colitis from that. I think that's where things may have gone wrong. He instantly said its not that because lower part was clear and now anyone who looks at my file seems to assume i've had a full colonoscopy and that the entire thing was clear, in which i've told them it's not the case as they really didn't do much more than a flex sig at all! It makes me so angry being shrugged off by all these different doctors saying its just IBS or in my head. I go to the toilet 20+ times daily, the pain is excruciating, the blood and mucus that comes from my bowel is horrendous and massive amounts. I can hardly walk in pain some days, let alone move! I really have hit a dead end and i don't know where to go next. I could try for a 3rd opinion, however the dilemma to that is the consultants in my area all work in one system, its the 'Worcestershire acute trust' so i will most likely end up with the same one i've seen before as they just go round the hospitals anywhere near me. I'd have to drive 2 hours away for a different one, and they wouldn't refer me to them as i'm 'supposed' to stick within the Worcestershire trust. It's driving me insane. I don't know what to do?!

I'm no where in the same boat as you, RosannaKate, but I do identify with the notion that anything triggers it. Nothing, anything - no definitive on that one. At first I thought I was being poisoned, but alas...the clincher was when we managed to poison me at home and that simply NEVER happens, so figuring out it wasn't that, was one step in the right direction.

I can only imagine how terribly frustrated you are and with the system you're working with, it seems you need to appeal to the healthboard in that area or whomever is the higher power. Write a letter, explaining everything - be courteous, but impress upon them the nature of the pain you're in.

Honestly, I suspect they're going with the notion it's 'idiopathic inflammation'. They don't know the origin, and they can't give a diagnosis. It's clear you need someone who is a real specialist. Someone who has seen enough that they can figure it out. You have a complex case (if you didn't, you'd have a diagnosis by now) and because it's complex, some are obviously just throwing their hands in the air and saying "we don't know". I'm wondering if perhaps you need to look at genetic testing. I'll see if I can find some info, but I was reading a while back about some genetic marker that when it's mutated or something it can cause a whole host of woes. I may be totally wrong. My memory gets fuzzy, but I'll see what I can find. It might be a long shot, but it's better than no shot.

 

[Madmouse]

Lewis, I think it was you who was talking about problems lying down/once been lying down although I can't find the post (have been caching up and can remember reading it but cant find it!). Anyways, I was given the advice of to not lie flat, have mattress raised at the head (under the mattress not more pillows as this would be bad for your head/neck) - it is to stop reflux becoming an issue when you are flat - I didnt notice a huge difference to start with, but do now notice if I am laid flat somewhere else (if that makes sense). This is the NHS website info (http://www.nhs.uk/Conditions/Gastroesophageal-reflux-disease/Pages/Treatment.aspx) but you can find loads about it - I have triangular shaped cushions under my mattress but it can be done more cheaply with pillows etc... hope it helps

 

[LewisS]

Ugh. Yesterday I had a really unsymptomatic day which is unusual, but today it's like twofold and really taking it out on me. I feel so weak, tired and just feel like I'm falling to pieces. The 17th really can't come any quicker for me...

@RosannaKate - Yeah, that's exactly what I was thinking. I mean if I have a proper diagnosis I wouldn't have a problem telling an employer, but telling them I have an undiagnosed bowel condition just doesn't sound great. It gives them the impression you're not going to be completely committed to them and will probably need a lot of time off. Plus, I really don't know how I'd make it through a working day. I spend most of the time in my room going to-and-from the bathroom, laid on my bed yawning and just wishing the day away.

 

[Cat-a-Tonic]

I'm lucky in a way when it comes to stuff like filling out paperwork for my employer - I have to periodically re-apply for FMLA (family medical leave, so that I can take sick days without getting in trouble at work for it), and every time I re-apply for it, my doctor has to fill out some of the paperwork. If I have my GI fill it out, he just writes "undiagnosed" but if I have my GP fill it out, he writes "IBD/colitis" on the paperwork. So I always have my GP do the paperwork! It makes me happy to see it in writing, to be taken seriously enough to where my doctor is okay with writing it on official paperwork. Obviously I still don't have a firm diagnosis but it's nice to just sort of circumvent the ambiguity when it comes to my doctor telling my workplace why I need extra sick days sometimes.

Rose, definitely take into consideration what Star is saying - she's in a similar situation to yours, she can't work and has no car and so she has to get a bit creative when it comes to getting to doctor appointments. Star, remind me, you get some sort of disability pay even though you're still undiagnosed, correct? Can you tell Rose any more about that? I think the financial stuff/potential job loss is a major concern for her right about now.

 

[StarGirrrrl]

That is correct Cat however I think Rosanna is just a little too young to receive the same state benefit as I do now (ESA) which is paid when you are out of work due to illness or disability. However there is another where age doesn't matter (PIP) which is paid regardless of being in or out of work.

Strictly speaking it's not about having a diagnosis to qualify, it's about passing the tests that you cannot work/ eligible for the help. Based on daily activities etc.

link

I've failed those tests and had to appeal several times to get the benefits I do but I always win.

And as a warning there are huge backlogs across the system and many get failed the first time but it is worth applying and persevering.

In her situation I would probably try to get an appointment with a welfare rights organisation such as Citizens Advice or Disability Advice Bureau.

There are things she can apply for now such as help with health costs which may lead to free medication and travel costs paid to Hospital appointments (full or in part). The form for that (HC1) does ask about household income but it can be left blank. I apply in my own right even though my mother works full time. I just tick that she works and decline to enter the earnings. It's not mandatory to enter and it is about the income of the person applying at the end of the day and not parents. Only a partner would count.

If an HC1 doesn't lead to free medication then you can get a pre-paid card (3 months or 12 months) called a Prescription Pre Payment Certificate. If you buy a yearly card it has a payment plan option over 10 months. Works out at £2 per week over the year.

Link
Also i'd encourage her to look into any chemists in local area which would be willing to offer delivery of medication.

I've never had any luck getting a lift but there are always local/Hospital lift sharing schemes as well where people offer and seek seats in cars for journeys that match.

 

[fissure2]

Hi im new here....worried and uncomfortable....
I was diagnosed with an anal fissure about a month ago. ive had it since march but though it was a hemorrhoid. not long after i saw a crs and she gave me a bunch of meds i starting having chronic diarrhea every few hours. the first round lasted about a week, i think it was triggered by me eating dairy by accident, hydrocortisone suppositories, allergic reaction to antibiotics, and mineral oil. then things calmed down for a couple weeks. I had been going to an acupuncturist for pain and it seemed to have been working. A week ago i started having diarrhea every few hours again. i had an appointment scheduled with the crs earlier this week anyways, and when she looked, it wasnt good. she said the fissure is slightly less, which makes sense because the pain is now bearable, but i have a very enflamed skin tag and more inflammation in that general area so she referred me to a GI specialist. I go to the GI tomorrow. the CRS said i wont really start healing the fissure until this other thing is under control. Im absolutely dreading getting a colonoscopy because of the fissure i have and the amount of swelling in the area. I would rather have an MRI or CT scan.
another thing that worries me is the diet for CD and UC is the opposite of what is recommended for healing a fissure. Also ive noticed that I dont respond well to medication in general. corticosteroids and antibiotics are used to treat this condition, and i think that is what may have triggered my response.
I am in pain from the fissure, and for the past week ive spend a quarter of my time in the bathroom. im a student who lives alone and just moved the this city a year ago so i have very little support, needless to say im not feeling well.
Any thoughts from those more experienced than me??

 

[Madmouse]

Hi Fissure2, firstly, welcome! Sorry to hear you are having such a tough time. Although I dont have any personal experience with an anal fissure, I hope I can offer some reassurance. Firstly, with such obvious inflammation, hopefully your GI will be able to get you a diagnosis and therefore treatment plan soon. Don't worry too much about having a colonoscopy, they are done under sedation and are not as bad as you might fear - the prep for it (taking a bowel cleansing solution) is the worst bit. Speak to your GI about your concerns about the reaction to medications that you have had - steroids can be given orally (or by IV if needed and in hospital) and there are a multitude of anti-inflammatory drugs designed for gastro inflammation (not NSAIDS, such as ibuprofen and aspirin, which are ususally advised against as the make things worse) and immunosupressants which, once in remission, should hopefully keep you there. Dietary wise, there are a multitude of different diets, and best to speak to your GI about talking to a dietician to get the best advice, although if you know what doesnt agree with you then avoid it, as I am sure you do anyway. In he mean time, try to keep yourself hydrated and try bland foods where possible. If you are having a lot of diarrhoea, then speak to your dr or pharmacist about rehydration salts, as you will loose lots of salts and minerals with regular toilet visits, which will make you feel really unwell. I really hope you get sorted soon, but don't suffer in silence, we are all here for each other, and available for worries, concerns or simple rants.

 

[Leanne1994]

Buhhh can't wait till the 23rd!!!

 

[fissure2]

madmouse, thanks for the advice. I have been taking ibuprofen like candy to combat the fissure pain, i guess its time to just suck it up now. the main reasons i dont want a colonoscopy are like you said the cleansing solution - it hurts me to have a bm. the fact that the tube can rip my fissure more and undo the little progress ive made in the past month, and that i have no one to take me to and from the hospital for the colonoscopy as i live alone in a new city. since there are other methods of diagnosis i would opt for them. oatmeal, applesauce and sorbet seem to be the best things to eat right now. and yes i would like to see a dietician. salt replenishers sound like a good idea, ive been drinking coconut water. i dont think anti-diarrhea agents would be a good idea becasue om worried about hard stool doing damage.
what do you think the chance is that the GI would give me something to combat this after the first visit, without further investigation??

 

[StarGirrrrl]

I can't offer you any helpful advice i'm afraid but there is a section of this forum dedicated to such issues which you might find useful:
http://www.crohnsforum.com/forumdisplay.php?f=76



I can well understand your concerns about having a scope at this particular time, i'd encourage you to mention them to your Dr if you haven't already. It may be that the procedure could be safely delayed until things are healed further.

 

[pixie14]

Hi everyone

New to this site, hoping for a little guidance and people's opinions who are in the same boat as me, undiagnosed and confused! Ive been labelled as having IBS for years, quite dismissively I feel sometimes. There's a doctor in my family who tells me it's IBS (no exam/colonoscopy etc ever been performed) but I just feel a lot of my symptoms are not consistent with IBS, and of late it's really really having a major impact on my quality of life. Up until three years ago, I did have some IBS with diarrhea type symptoms. Then, this time three years ago, BAM! hit with symptoms i had never ever experienced and which have not eased or dissipated. Ive had (amongst others):
Rapid, severe and unexplained weight loss (was slim to begin with)
Severe diarrhea (15+ times a day) and always worst in the mornings
Bleeding (very occasional)
Joint pain
Fatigue
Loss of appetite
Bad cramping
Urgency (constantly)

This has been my life for three years. It has never let up, I have had no remittance, but I have a point to which can tolerate it and then there's bouts where it's even worse. No meds/dietary changes have helped. I'm having one of said bouts at the moment, and I am supposed to attend my graduation next week and I just know I wont be able to go because of how I'm feeling. I have a very good friend with Crohn's who said again today that my symptoms are so similar to her pre-diagnosis.

I would just love a neutral person's perspective. Is this worth investigating with a gastroenterologist? Does anyone think it could be something other than IBS? I've been so dismissed by my family that I wonder if I'm just not allowing myself to believe it is worth investigating.

Would really welcome others opinions, because I don't know what to think anymore!
Thanks so much x

 

[Eternal_Howl]

Hi everyone

New to this site, hoping for a little guidance and people's opinions who are in the same boat as me, undiagnosed and confused! Ive been labelled as having IBS for years, quite dismissively I feel sometimes. There's a doctor in my family who tells me it's IBS (no exam/colonoscopy etc ever been performed) but I just feel a lot of my symptoms are not consistent with IBS, and of late it's really really having a major impact on my quality of life. Up until three years ago, I did have some IBS with diarrhea type symptoms. Then, this time three years ago, BAM! hit with symptoms i had never ever experienced and which have not eased or dissipated. Ive had (amongst others):
Rapid, severe and unexplained weight loss (was slim to begin with)
Severe diarrhea (15+ times a day) and always worst in the mornings
Bleeding (very occasional)
Joint pain
Fatigue
Loss of appetite
Bad cramping
Urgency (constantly)

This has been my life for three years. It has never let up, I have had no remittance, but I have a point to which can tolerate it and then there's bouts where it's even worse. No meds/dietary changes have helped. I'm having one of said bouts at the moment, and I am supposed to attend my graduation next week and I just know I wont be able to go because of how I'm feeling. I have a very good friend with Crohn's who said again today that my symptoms are so similar to her pre-diagnosis.

I would just love a neutral person's perspective. Is this worth investigating with a gastroenterologist? Does anyone think it could be something other than IBS? I've been so dismissed by my family that I wonder if I'm just not allowing myself to believe it is worth investigating.

Would really welcome others opinions, because I don't know what to think anymore!
Thanks so much x

If the family doctor a general physician and not a specialist - then definitely see a Gastroenterologist. I would also recommend keeping a daily diary of symptoms (especially bowel movements and any other accompanying pain - even joint pain) until you can see one. If you haven't already ruled out possible food allergens, then you might want to add food to that daily diary to see if there's a pattern. It will make it easier on the specialist too. GI problems are often complex and require both imaging and symptoms to confirm a diagnosis. IBS is not a formal diagnosis, in my humble opinion. Rather, it's more of an observation and doesn't take into account your joint pain and fatigue. I hope you get to feeling better though. But please see a specialist.

 

[StarGirrrrl]

Feeling ill today must say, worried it's the anaemia coming back and my haemoglobin getting low again, but I didn't sleep well and been in/out of the bathroom all morning so it's probably that.... in any case I do my first set of bloods on Friday so anything that needs flagging up will be flagged up, as I found out previously!

 

[Suzi86]

Feeling ill today must say, worried it's the anaemia coming back and my haemoglobin getting low again, but I didn't sleep well and been in/out of the bathroom all morning so it's probably that.... in any case I do my first set of bloods on Friday so anything that needs flagging up will be flagged up, as I found out previously!

Rest today, have a chill out day. Hope you feel better soon

 

[fissure2]

i have an flexible sigmoidoscopy on monday, has anyone here had one?? im kinda worried. they will use the child size scope because of the fissure. they will take blood and stool sample also. i hope i can get i diagnoses by wed, but the GI wants to do a full colonoscopy eventually.

 

[Madmouse]

Fissure2 - who advised you to take ibuprofen? The reason I ask is that NSAIDs (such as ibuprofen, aspirin) are usually big no no, but obviously if you have been advised to take them by your dr, then I'm sure it is fine, just wondering Hope all goes well Mon
Hope everyone is ok. I ended up in A/E wed, sent by GP, but was dismissed by the medics as 'your bloods are normal' - oh ok, so why is it that I am sleeping for 14-16 hrs a day?!?!? Anyway, had to go off sick from work again, and hoping to start the battle for answers on Mon. Anyone got any suggestions??? Hope you guys are well

 

[StarGirrrrl]

I can understand your nerves about the flexible sig, but it is the least invasive of the 3 scopes, and only requires mild laxatives. It's great they're using the thinner scope as well.

Most of the time the thought of these procedures, and the laxative prep, is the worst part compared to the actual test.

MadMouse, have you considered a referral to a Rheumatologist? They look at the whole body, instead of just the guts like a GI. When GI's can't find anything wrong with the guts they tend to give up, whereas Rheumatology take a long view of the whole body.

I see from your previous posts you've had inflammation found, that's certainly grounds for a Rheumy referral.

 

[Leanne1994]

Is there anyone with possible crohns or cu and also diagnosed with adhd/add?

Sorry that i don't really help people, but I don't know how it works in England or America haha

 

[Madmouse]

Stargirl - thanks. Yeah, the last time I spoke to my GI I asked him about Rheumatology but he said there was no need because he would manage my extra-intestinal symptoms - currently joints and fatigue. Thanks for the suggestion though, I will try and get hold of a decent GP on Mon and ask them about it - just so frustrating that no-one seems to take it seriously or grasp the impact it is having. Thank goodness we have each other - wish I had found you guys sooner! x

 

[StarGirrrrl]

I hope you have some luck- just insist managing your symptoms at a GP level is not working so you need a referral. It is your right after all.

Leanne- There is a list of current support groups here:
http://www.crohnsforum.com/sgroups.php

I don't see one for those with ADD, perhaps you could start one?

 

[fissure2]

madmouse- my crs said ibuprofen was ok before the diarrhea hit. later i found that it can make things worse but tylenol is ok. i can relate a bit to you, i havent been to work in 3 weeks.

stargirrrrl- since im malnourished at the moment the doctor is not having me do the laxative prep. this makes me nervous about having an accident during the procedure, even tho it is quick, i still go every 2-7 hrs not regular. for now the doctor said eat whatever i want, try to get 3000 calories a day, im struggling to eat 1500 or so. the more i eat, the more i go to the bathroom it seems. it wouldnt be half as bad if it was not very painful for 5 mins or so.
there was also a lot of inflammation in my initial blood test, along with increased creatine and white blood cell count. does anyone know what that could be an indication of?? i get more blood drawn on mon.
Also, does anyone know a brand of soymilk that is NOT fortified with calcium?? its bad for my fissure.

 

[Leanne1994]

Stargirl thank you, I don't know what I should put in the thread, so never mind haha, I was just wondering.

 

[Leanne1994]

The thing with the job sucks, especially when your not diagnosed. I quit school a few weeks ago because I knew I wanted to do something different next year. So I started working, but that didn't went well, so I had to quit that. But because I am undiagnosed, there are no benefits..
And my life is so boring now! Not doing anything..

 

[fissure2]

yeah i switched to online classes next term also. if all goes well i hope to be back at work by july

 

[gotumtum]

Hey Rosanna Kate

Just wondering if there is someone you can take with you to your next appointment to support you. I have found that dr's have a harder time brushing you off when there is someone else they have to interact with too.
I find it easier when I am feeling yuck, to have someone there to insist on treatment, and to ask the hard questions and stand up for you and to get the dr to explain themselves and their lack of assistance, especially when I have been getting nowhere.
It also helps if this person is a big burly male, or a Mum fighting for her child - but they are not always avaialble to help.

If you don't have any relatives or friends to help - is there an advocacy service who can supply someone to come with you?

 

[happyballerina]

Hi guys,
I'm back home now and it is so nice to be back! Back in my own bed, with my own food...on my own toilet. Haha
My flight was not as uneventful as I had hoped, but all in all it was manageable and I didn't have any accidents or super uncomfortable things happening. I was just happy to finally get home after all the flights because it was definitely not comfortable!

My gut has been bothering me still at home and now my parents see in real life how it affects me (and I'm not even at my worst now!), which has prompted my mom to insist I go to the doctor already even more so than when she just heard from me over the phone about what was going on! Tbh, I've been putting off going to the doctor, although in all fairness I've only been home for just over 4 days! I'll go sometime next week.

Hope you are all having a good weekend/happy father's day <3

 

[Eternal_Howl]

Hi guys,
I'm back home now and it is so nice to be back! Back in my own bed, with my own food...on my own toilet. Haha
My flight was not as uneventful as I had hoped, but all in all it was manageable and I didn't have any accidents or super uncomfortable things happening. I was just happy to finally get home after all the flights because it was definitely not comfortable!

My gut has been bothering me still at home and now my parents see in real life how it affects me (and I'm not even at my worst now!), which has prompted my mom to insist I go to the doctor already even more so than when she just heard from me over the phone about what was going on! Tbh, I've been putting off going to the doctor, although in all fairness I've only been home for just over 4 days! I'll go sometime next week.

Hope you are all having a good weekend/happy father's day <3

Sometimes it's hard for others to realize how bad things can be. Your Mom is acknowledging that, so listen to her and go see the doctor. Glad you're doing a bit better though.

 

[happyballerina]

Eternal_Howl thank you I'll go either tomorrow or on Saturday. I don't know why I'm nervous! I won't be going for my GI problems exclusively - I'm going to my GP anyway for a follow-up/check-up on some other issues, but she knows we need to address the GI stuff too as she spoke to me over the phone while I was doing badly in Russia. I think I'm overwhelmed because of the sheer number of things we need to go over when I go in to see her; but she does already KNOW that we're going to be very thorough (at her suggestion) and she knows I have multiple issues we need to address (although who knows if they are really separate issues or if they're all connected...), so I really have no reason to be worried. Besides, she likes me, and that's worth more than it gets credit for when it comes to doctor appointments!

I'll just go in and trust her to do what she thinks is best to do after I tell her everything that's going on. I guess it's not really a big deal anyway because only if/when I go to a gastro doc will it become relevant to mention the smaller details. She'll just be a pair of eyes to look at the problem and refer me if need be. Although, if I do go to a gastro doc, I think I found a practice I will prefer to go to over another. There is this huge practice called Atlanta Gastroenterology Associates and the doctor I saw three years ago was from there; they weren't horrendously awful or anything, but I didn't get a diagnosis and was just sent on my way without further investigations (I was told it was probably lactose intolerance and to drink a milkshake to find out...). So I don't want to go back to their practice, it is too big and too "cookie cutter" it seems. I did find another practice though, and this guy seems like he knows what he is doing: http://www.atlgastrospec.com/index.php

What do you guys think?
Their locations are close to me, which is good. They also list the procedures they perform and it's an extensive list that includes the pill cam as well as all the scopes. "Specialized laboratory screening" too which may or may not refer to the Prometheus test but it at least makes me think they know to look for more than just the usual blood and stool tests. I could be totally off, obviously :ybatty: I just get the feeling they know what they're doing.

 

[Suzi86]

I had appointment with the hospital today and my colonoscopy is in 2 weeks. Today he chatted through my symptoms and history. He said the colonoscopy will take 30 minutes (I have asked for lots of sedation!) feeling nervous and uncomfortable about it but needs to be done. If crohns is ruled out then I will be tested for gluten and lactose intolerances.

 

[happyballerina]

I had appointment with the hospital today and my colonoscopy is in 2 weeks. Today he chatted through my symptoms and history. He said the colonoscopy will take 30 minutes (I have asked for lots of sedation!) feeling nervous and uncomfortable about it but needs to be done. If crohns is ruled out then I will be tested for gluten and lactose intolerances.

Good luck with your colonoscopy - you'll be fine, it's really not so bad! Everyone says the prep is the worst part and, while I agree, I thought even that wasn't so bad. It's weird that they didn't rule out gluten and lactose intolerance before going straight to do the colonoscopy, seeing as the tests for those are much easier and less expensive. Will they at least be taking biopsies during the scope? Those can be used to check for celiac as well as CD/UC (although the golden standard, I believe, for celiac is biopsies and visuals taken from an upper endoscopy; don't quote me on that, though).

 

[Suzi86]

I thought he exact same. It's very backwards...but maybe doc is convinced its crohns? I have no idea. Would much rather have an intolerance. Thanks for telling me about the colonoscopy cos I feel a bit sick wen I think about it!

 

[Leanne1994]

Funny how people say it is not that bad haha. Maybe it is just me. Don't want to scare anyone. I had 2 colonoscopies, and both were terrible. The second time I had extra morfine for the pain. But I screamd and cried so hard, and my mum wasn't allowed to see me, not even when I was finished and lying in a room.

Don't want to scare anyone.

 

[Leanne1994]

Good luck with your colonoscopy - you'll be fine, it's really not so bad! Everyone says the prep is the worst part and, while I agree, I thought even that wasn't so bad. It's weird that they didn't rule out gluten and lactose intolerance before going straight to do the colonoscopy, seeing as the tests for those are much easier and less expensive. Will they at least be taking biopsies during the scope? Those can be used to check for celiac as well as CD/UC (although the golden standard, I believe, for celiac is biopsies and visuals taken from an upper endoscopy; don't quote me on that, though).

About celiac is true, you have to have an upper coloscopy for that!

 

[happyballerina]

Funny how people say it is not that bad haha. Maybe it is just me. Don't want to scare anyone. I had 2 colonoscopies, and both were terrible. The second time I had extra morfine for the pain. But I screamd and cried so hard, and my mum wasn't allowed to see me, not even when I was finished and lying in a room.

Don't want to scare anyone.

Were you asleep for the procedure?! Sounds like they had you sedated but awake. If you happen to need another one in the future, make sure they will be putting you under full sedation! Unless you were already asleep, in which case...I have no clue why it was so painful for you

I am trying to avoid another colonoscopy this time around, although I know that they'll probably need one to confirm a diagnosis if I even get one. If I do end up needing one, I am half-considering asking to stay awake for the procedure because I am so curious to see the screen while they are doing it! On the other hand, it must be much more uncomfortable and I'm not sure that I'll be ok with it. Then again...lots of people do stay awake for it, and they are fine!

 

[StarGirrrrl]

We all have had good and bad scopes, just got to see how it goes on the day really

Laxative prep is straight up the worst part and let's face it the thought of having a camera shoved up your rear isn't exactly nice.

People are horrified when I tell them I had no sedation for my colonoscopy just pain relief but it was fine for me.

Prior to my colonoscopy i'd had the flexible sig where you don't get offered anything so I knew it wouldn't be so bad which is why I opted for no sedation. And as it turned out it was ok, I had no scarring or active inflammation in there.

An upper endoscopy however without sedation (offered sedation "which might not work and you will feel everything" or throat numbing spray- which HA HA HA really didn't do much for me) was an awful experience from start to finish. A hernia was found during the procedure which made things more difficult. My throat killed me for days.

So when I had my second upper recently I had sedation and it was much better. Am not so scared of it any more lol. In fact the sedation was so pleasant I would probably have it for any future colonoscopy. I was awake but very very relaxed. Instead of wanting to claw at my throat and rip it out (as I did my first) I just kind of thought once or twice "this isn't great". Delayed the sore throat too!

 

[happyballerina]

Ok, so...

I'm pretty sure I see something coming out of my rectum. I assume it's a prolapsed internal hemorrhoid which would explain the bright red bleeding I've had for the last couple weeks (though not the darker red one I had earlier) as well as the thin stools with grooves. The reason I think it's an internal one that came out and not an external one is because external ones hurt and internal ones don't - right?

It's very strange to see and look at. But I'm actually not sure that it's not just part of my bum I'm looking at! I tried looking with a mirror but it was hard to really get a good view, considering the positioning is a bit difficult, lol. I also never really took a good look down there before, so I don't have much to compare what I'm seeing now to. Still, it looks like something unusual, and I think it's safe to assume it's not just part of my normal anatomy but rather something that shouldn't be there

It's awkward!

At least there is SOME visible sign that my pain is real. Here's to hoping this helps me get closer to a diagnosis and not farther - because I would not put it past some doctors to see a hemorrhoid, say all my problems are caused by that, and send me on my way with no further help...that's what happened last time, because I had non-bleeding hemorrhoids during my colonoscopy. I'll definitely have to remember to tell them that aside from the bright red blood, which I'm sure is from the hemorrhoid(s), I do have some darker red blood as well. Also, I'm quite sure hemorrhoids don't cause pain and urgency so bad that I have to close my eyes, lay down, and hold my breath until it passes. Or a frequency of at least 3 BMs on a "good" day, 10 on a not so good day, and upwards of 30 on a really bad day. Or pain and discomfort that only subsides if I flat out don't eat. Pretty sure it's the other way around - that they're caused by that.

Still, I'm betting on a diagnonsense [ ] of IBS and hemorrhoids. :angry-banghead:

 

[Leanne1994]

:ylol2:

Were you asleep for the procedure?! Sounds like they had you sedated but awake. If you happen to need another one in the future, make sure they will be putting you under full sedation! Unless you were already asleep, in which case...I have no clue why it was so painful for you

I am trying to avoid another colonoscopy this time around, although I know that they'll probably need one to confirm a diagnosis if I even get one. If I do end up needing one, I am half-considering asking to stay awake for the procedure because I am so curious to see the screen while they are doing it! On the other hand, it must be much more uncomfortable and I'm not sure that I'll be ok with it. Then again...lots of people do stay awake for it, and they are fine!

They had me asleep, but I woke up during the colonoscopy haha.

I want an mri/mre scan and a ct scan to get a diqgnose, if that comes out normal. I'll just have to live with it.

 

[Suzi86]

Yeah I agree that everyone has different experiences. I've had 2 endoscopys, one I was completely out the game for and don't remember going back to ward or changing into pjs and the second one I was so aware of everything and was boaking. I was sedated for both but second one defo didn't work. I shall let u know how it all goes. I saw a new doctor today and he was great.

On a lighter note I managed to get 4 loafs of gluten free bread for £1! Usually £2.90 a loaf. The date was nearly up but they are in freezer and I have been eating them if I fancy a bit of toast. I'm Scottish...I like a bargain lol

 

[fissure2]

well im no longer undiagnosed. I have crohn's. they do not know the full extent of it until they do a full colonoscopy.

today they did a sigmoidoscopy and it was not pleasant. they found a lot of inflammation. i could fell the tube thing behind my belly button. they took some biopsies that i have to wait a week to get the results from. they tried to take blood but i was too stressed and dehydrated so the blood would not flow. this has happened before. I have to go back on wed to get blood taken and by TB test read.
The doctor put me on Uceris for the time being. does anyone have experience with this medication??

 

[fissure2]

happyballerina:

it could be a skin tag and an anal fissure. I have that too. how bad/what kind is the pain??

 

[StarGirrrrl]

fissure2, I am sorry they have diagnosed Crohn's, but at least it is an answer, even a nasty one.

I believe Uceris is an alternative name for Entocort, and you can find lots of diagnosed members with experience in this section of the forum:
http://www.crohnsforum.com/forumdisplay.php?f=80

I think Cat-a-Tonic has this prescribed, which is rare for someone undiagnosed but she has a good GI

 

[Leanne1994]

I also want a diagnosis
Sounds really weird and stupid, but it is true.

 

[fissure2]

thanks stargirrrrl!!!!!

 

[Eternal_Howl]

Eternal_Howl thank you I'll go either tomorrow or on Saturday. I don't know why I'm nervous! I won't be going for my GI problems exclusively - I'm going to my GP anyway for a follow-up/check-up on some other issues, but she knows we need to address the GI stuff too as she spoke to me over the phone while I was doing badly in Russia. I think I'm overwhelmed because of the sheer number of things we need to go over when I go in to see her; but she does already KNOW that we're going to be very thorough (at her suggestion) and she knows I have multiple issues we need to address (although who knows if they are really separate issues or if they're all connected...), so I really have no reason to be worried. Besides, she likes me, and that's worth more than it gets credit for when it comes to doctor appointments!

I'll just go in and trust her to do what she thinks is best to do after I tell her everything that's going on. I guess it's not really a big deal anyway because only if/when I go to a gastro doc will it become relevant to mention the smaller details. She'll just be a pair of eyes to look at the problem and refer me if need be. Although, if I do go to a gastro doc, I think I found a practice I will prefer to go to over another. There is this huge practice called Atlanta Gastroenterology Associates and the doctor I saw three years ago was from there; they weren't horrendously awful or anything, but I didn't get a diagnosis and was just sent on my way without further investigations (I was told it was probably lactose intolerance and to drink a milkshake to find out...). So I don't want to go back to their practice, it is too big and too "cookie cutter" it seems. I did find another practice though, and this guy seems like he knows what he is doing: http://www.atlgastrospec.com/index.php

What do you guys think?
Their locations are close to me, which is good. They also list the procedures they perform and it's an extensive list that includes the pill cam as well as all the scopes. "Specialized laboratory screening" too which may or may not refer to the Prometheus test but it at least makes me think they know to look for more than just the usual blood and stool tests. I could be totally off, obviously :ybatty: I just get the feeling they know what they're doing.

I can't speak about the GI specialist you're considering, but it sounds like your regular doctor is fantastic. I used to take the good ones for granted. Not any more. I appreciate the good ones because they're a far rarer than I imagined and priceless! It sounds like you're in good hands.

 

[Eternal_Howl]

well im no longer undiagnosed. I have crohn's. they do not know the full extent of it until they do a full colonoscopy.

today they did a sigmoidoscopy and it was not pleasant. they found a lot of inflammation. i could fell the tube thing behind my belly button. they took some biopsies that i have to wait a week to get the results from. they tried to take blood but i was too stressed and dehydrated so the blood would not flow. this has happened before. I have to go back on wed to get blood taken and by TB test read.
The doctor put me on Uceris for the time being. does anyone have experience with this medication??

The test sounds rather unpleasant, but at least you have a diagnosis. It's a start to getting targeted treatment once they know how far it extends. Try to keep your chin up - the road you are on just forged a better path and the directions just got a little less mirky.

 

[Eternal_Howl]

I also want a diagnosis
Sounds really weird and stupid, but it is true.

I'm still waiting too. It's not stupid. Once we have a diagnosis, we can move forward and work with the best information, not guestimates and IBS and all those umbrella terms that don't necessarily help.

 

[LewisS]

So, the ultrasound was a waste of time. The ultrasonographer asked me what kind of symptoms I'd been having, so I explain and she went on to say 'unfortunately this won't be able to see anything inside the bowel, we are just doing this to rule out other things such as gall stones'. I ask if it would pick anything up like crohn's or inflammation, she said no. Great.

I was SO looking forward to that appointment (how amazing has my life become that I get excited to hopefully be diagnosed with a chronic illness). Now I have to wait to get an appointment from the 'colorectal' surgeon which I suppose will want to perform scopes - which I wish would just hurry up. Why waste time with useless tests when I could have told them I didn't have gall stones! UGHHHH.

On a more positive note, at least I now know that I don't have some enormous tumour the size of a watermelon inside me. Everything looked normal, even though all I saw was a ton of black and white blurry crap all over the screen.

 

[Eternal_Howl]

Ok, so...

I'm pretty sure I see something coming out of my rectum. I assume it's a prolapsed internal hemorrhoid which would explain the bright red bleeding I've had for the last couple weeks (though not the darker red one I had earlier) as well as the thin stools with grooves. The reason I think it's an internal one that came out and not an external one is because external ones hurt and internal ones don't - right?

It's very strange to see and look at. But I'm actually not sure that it's not just part of my bum I'm looking at! I tried looking with a mirror but it was hard to really get a good view, considering the positioning is a bit difficult, lol. I also never really took a good look down there before, so I don't have much to compare what I'm seeing now to. Still, it looks like something unusual, and I think it's safe to assume it's not just part of my normal anatomy but rather something that shouldn't be there

It's awkward!

At least there is SOME visible sign that my pain is real. Here's to hoping this helps me get closer to a diagnosis and not farther - because I would not put it past some doctors to see a hemorrhoid, say all my problems are caused by that, and send me on my way with no further help...that's what happened last time, because I had non-bleeding hemorrhoids during my colonoscopy. I'll definitely have to remember to tell them that aside from the bright red blood, which I'm sure is from the hemorrhoid(s), I do have some darker red blood as well. Also, I'm quite sure hemorrhoids don't cause pain and urgency so bad that I have to close my eyes, lay down, and hold my breath until it passes. Or a frequency of at least 3 BMs on a "good" day, 10 on a not so good day, and upwards of 30 on a really bad day. Or pain and discomfort that only subsides if I flat out don't eat. Pretty sure it's the other way around - that they're caused by that.

Still, I'm betting on a diagnonsense [ ] of IBS and hemorrhoids. :angry-banghead:

I love your term: Diagnonsense. I'll have to steal it, if you don't mind. Whatever you're seeing doesn't sound very nice to look at. Normally your butt hole is basically a round hole - nothing should be protruding unless you're taking a dump. I get the pain where the only thing you can do is stop eating for a couple of days and it gives your bowel a chance to settle down. It can take 3 days for my pain to subside. Wishing good thoughts for you and hoping you get the right diagnosis soon.

 

[Eternal_Howl]

So, the ultrasound was a waste of time. The ultrasonographer asked me what kind of symptoms I'd been having, so I explain and she went on to say 'unfortunately this won't be able to see anything inside the bowel, we are just doing this to rule out other things such as gall stones'. I ask if it would pick anything up like crohn's or inflammation, she said no. Great.

I was SO looking forward to that appointment (how amazing has my life become that I get excited to hopefully be diagnosed with a chronic illness). Now I have to wait to get an appointment from the 'colorectal' surgeon which I suppose will want to perform scopes - which I wish would just hurry up. Why waste time with useless tests when I could have told them I didn't have gall stones! UGHHHH.

On a more positive note, at least I now know that I don't have some enormous tumour the size of a watermelon inside me. Everything looked normal, even though all I saw was a ton of black and white blurry crap all over the screen.

Hey Lewis. Have you had a CT with contrast? That's the first thing they did when I complained to my doctor and she referred me. In the past, other tests didn't show anything, but I'm talking years ago. The CT did show three things. The subsequent barium x-rays 3 days later didn't really show much, because by then the pain was totally out of my system and I had barely eaten in 5 days.

You describe how some women feel when they're told they have a baby. We're like what the heck are you looking at? I've had a few ultrasounds, but mainly because I had cancer and they wanted to keep an eye on what was left to make sure nothing came back to bite me. That's where the radiology training comes in, I suppose.

 

[LewisS]

Hey Lewis. Have you had a CT with contrast? That's the first thing they did when I complained to my doctor and she referred me. In the past, other tests didn't show anything, but I'm talking years ago. The CT did show three things. The subsequent barium x-rays 3 days later didn't really show much, because by then the pain was totally out of my system and I had barely eaten in 5 days.

You describe how some women feel when they're told they have a baby. We're like what the heck are you looking at? I've had a few ultrasounds, but mainly because I had cancer and they wanted to keep an eye on what was left to make sure nothing came back to bite me. That's where the radiology training comes in, I suppose.

Apologies for the tumour analogy, it was inappropriate. Yeah, she was taking pictures and I was just like, what the hell is that white blob?! I guess with the years of training they've had they can pretty much identify every little squiggle. I understand ultrasounds are necessary in a lot of cases, I was just on a bit of a rant earlier. Like yourself, I could have had cancer and it would have shown up and I'd have been very grateful for ultrasounds in that case!

Hopefully when I go see a GI I'll be able to get an MRI or scope which will see everything much clearer. Plus, it'll be interesting to see...if you get to face the screen whilst having a scope.

 

[Eternal_Howl]

Apologies for the tumour analogy, it was inappropriate. Yeah, she was taking pictures and I was just like, what the hell is that white blob?! I guess with the years of training they've had they can pretty much identify every little squiggle. I understand ultrasounds are necessary in a lot of cases, I was just on a bit of a rant earlier. Like yourself, I could have had cancer and it would have shown up and I'd have been very grateful for ultrasounds in that case!

Hopefully when I go see a GI I'll be able to get an MRI or scope which will see everything much clearer. Plus, it'll be interesting to see...if you get to face the screen whilst having a scope.

Don't apologize. I'm not offended at all. Actually, quite (insert expletive) lucky to be honest. Ultrasound can't diagnose cancer anyway. It can only show anomalies, like babies and other oddities that shouldn't be there. It can't say what it is. I'm still waiting to hear back about the pill cam. In the meantime I have almost 2 weeks of bowel movements charted (they only need one week). I'm waiting for 'clearance' that this is a medical necessity. I would say so. A colonoscopy may not be very 'fruitful' for me. Plus, I think they have to go 'way in there' - and that doesn't sound very nice! Don't really want a tube rupturing my tube! I sometimes wondering if the MRI would be better, but I know it's way more expensive. America the wealthy and the most expensive health care in the world. I miss socialized medicine!

Hopefully we get our tests and RIGHT diagnosis soon. Lewis, your case seems a lot worse than mine. I've actually been fairly good the past month. Since signing on to these boards. Perhaps you're all great medicine! I've had nausea, which is new, but not much in the way of pain - which isn't necessarily what I want when I'm waiting for a test. I don't want a false 'negative'. My biggest complaint right now is probably constipation and I can deal with that.

 

[LewisS]

Don't apologize. I'm not offended at all. Actually, quite (insert expletive) lucky to be honest. Ultrasound can't diagnose cancer anyway. It can only show anomalies, like babies and other oddities that shouldn't be there. It can't say what it is. I'm still waiting to hear back about the pill cam. In the meantime I have almost 2 weeks of bowel movements charted (they only need one week). I'm waiting for 'clearance' that this is a medical necessity. I would say so. A colonoscopy may not be very 'fruitful' for me. Plus, I think they have to go 'way in there' - and that doesn't sound very nice! Don't really want a tube rupturing my tube! I sometimes wondering if the MRI would be better, but I know it's way more expensive. America the wealthy and the most expensive health care in the world. I miss socialized medicine!

Hopefully we get our tests and RIGHT diagnosis soon. Lewis, your case seems a lot worse than mine. I've actually been fairly good the past month. Since signing on to these boards. Perhaps you're all great medicine! I've had nausea, which is new, but not much in the way of pain - which isn't necessarily what I want when I'm waiting for a test. I don't want a false 'negative'. My biggest complaint right now is probably constipation and I can deal with that.

Strangely this week I haven't felt too bad at all either. I've had no pain at all for a few days now. Had a bout of constipation (wow, only on this forum would you ever hear those words being spoken) and now back to the diarrhea - woo-hoo! My biggest complaint at the moment is mouth ulcers...and with braces added to the equation, they suck.

How was your experience with the pill cam? And do you get to see any of the footage? That would be so cool. It must feel weird knowing something is taking images of your insides as you go about your day.

I'm glad you weren't offended too btw. I read my post back and I sounded a bit crazy...guess you could call it an extra intestinal symptom. I spend more time ranting about my bowels than a 21 year old should lol.

 

[Madmouse]

Hi guys, hope our medicine (so might call it group therapy!) is helping

Fissure2 - am so glad you have managed to get a diagnosis - and dont feel weird about being happy about it - a diagnosis allows treatment/management and an answer to all your questions and frustrations, no matter what it is. I think we all agree that when you know you are ill, not having a diagnosis, or a diagnosis of 'just IBS' etc... is more frustrating. Let us know how you get on.

Lewis - I think your post was perfectly justified! Better to get it out if your system, and many of us have or will be there, and its nice to know you are not alone.

Hope everyone else is getting on ok with symptoms, drs, tests etc... and love to you all!

Personally, I am having a battle still. I managed to get hold of a decent GP who sent me to A/E. A/E were useless (sadly my old a/e is closed and my now local one is awful - I hated it as a clinician, I hate it more as a patient), refused to give me any decent pain relief or anti-emetics because 'you look fine'. They did bloods, and I was told they were fine - they wouldnt tell me what they were and as we all know 'everything is fine' is a double edged sword for us, and diagnosed constipation from x-ray, and seem to have ignored the fact that I am still opening my bowels normally for me... I am not saying that it isnt a problem, but I know that something else is going on - just a shame it never shows up! Anyways, my GP doesnt know what else to do, so I am waiting to hear back from my gastro consultant - still off work (have occi health tomorrow) as still shattered n pain/nausea getting worse. Anyone been on mesalazine (was on pentasa) and changed to sulfasalazine - just wondering if that is making things change.

Sorry for the long rant again! Have a lovely day, and remember, you are not alone x

 

[happyballerina]

I love your term: Diagnonsense. I'll have to steal it, if you don't mind. Whatever you're seeing doesn't sound very nice to look at. Normally your butt hole is basically a round hole - nothing should be protruding unless you're taking a dump. I get the pain where the only thing you can do is stop eating for a couple of days and it gives your bowel a chance to settle down. It can take 3 days for my pain to subside. Wishing good thoughts for you and hoping you get the right diagnosis soon.

Go ahead, steal it - I stole it, too! Isn't it great? Haha! It's from Girl, Interrupted. I LOVE that movie.
Yeah, I told my mom and she said it's probably a hemorrhoid and she had that happen too when she gave birth and that I should try to push it back in, but I said I'm not doing anything with it, no way!
I, too, find that if I don't eat then I'm not in pain or it's much, much reduced. I haven't lost any weight, though, because of my stupid food issues. But I would love to just stop eating - or really just reduce it drastically. No pain, I'll lose weight. Only good things can come from that. Oh, plus, I still feel some round lump type of thing in my LRQ, and it feels pronounced enough that I swear I would be able to actually see a lump if I were my good old thin self. I don't have an appetite and food makes me hurt - and yet I still keep eating. It's so stupid I should start listening more to my body and less to my mind.

fissure2 - it actually doesn't hurt, which is why I think it's an internal hemorrhoid that's prolapsed. Or possible some kind of skin tag, like you suggested, which I had thought of as well because I know they can sometimes look alike. I really don't know, but I'll have the doctors take a look. I really want to say "congratulations" for your diagnosis because you will be much better off now and can start to get better. I am also jealous that you got a diagnosis and that you got it quite quickly, too (or at least it seems that way - sorry and correct me if I'm wrong, though)! Good luck with the colonoscopy. I often have the same thing happen to me when giving blood - it just won't flow! And that's on top of having runaway veins and bad veins. So, an ordinary blood draw more often than not turns into a multi-prick ordeal and sometimes they give up and I have to try again the next day, too! Drink a lot of water

 

[Eternal_Howl]

Strangely this week I haven't felt too bad at all either. I've had no pain at all for a few days now. Had a bout of constipation (wow, only on this forum would you ever hear those words being spoken) and now back to the diarrhea - woo-hoo! My biggest complaint at the moment is mouth ulcers...and with braces added to the equation, they suck.

How was your experience with the pill cam? And do you get to see any of the footage? That would be so cool. It must feel weird knowing something is taking images of your insides as you go about your day.

I'm glad you weren't offended too btw. I read my post back and I sounded a bit crazy...guess you could call it an extra intestinal symptom. I spend more time ranting about my bowels than a 21 year old should lol.

I'm still waiting for the insurance approval to get the pill cam scope. When I do get it, or some other procedure, will let you know. Hopefully, I can share the experience of the pill cam (and I don't mean all the visuals lol).

I spoke too soon today. I had terrible burning inside earlier. Subsided again, but that felt like straight out inflammation. Usually, I can't tell - except that I feel awful. Better now.

 

[fissure2]

thanks madmouse and happyballerina. i wouldnt say im happy about the diagnosis but hopefully the meds kick in in a week or so.

 

[Leanne1994]

I really don't know what kind of job I can do, but I need money.

 

[fissure2]

online survey taker?

 

[Leanne1994]

what is that? I'm from Holland haha

 

[fissure2]

you take surveys online and get paid. its minimum wage herein america, but its online so i thought it would be available internationally.

 

[Leanne1994]

oh like getting emails and stuff? In holland you only get like 2 cents for it haha.

 

[gotumtum]

I really don't know what kind of job I can do, but I need money.

Could you do data entry for businesses?

Some Accountacy firms / book keeping businesses and calibration labs, need lots of data entered. You log in remotely to their system over the internet from home and enter the numbers / info.

Close to your own toilet at home, and you can do it when it works for you

 

[Eternal_Howl]

Hey Gotumtum,
Whereabouts on the west coast are you? Or should I say the "Wet" Coast.

 

[Leanne1994]

No there aren't really homework jobs in holland..
Thank you for thinking with me

 

[happyballerina]

Hey gotumtum that is a really great idea, even if it was meant for Leanne and not me, lol. I think I'll look into that...

 

[happyballerina]

Does anyone else here get urgency (feels like i have to put in a huge effort to control my muscles there, almost painful) not just for actual BM, but also for gas and [more often than not] mucus which accompanies the gas?

Also, passing gas is not considered a BM, but is passing mucus with the gas considered a BM? Or a teeny tiny bit of loose stool with the gas?

I haven't woken up at night for a 'real' BM for a little while (occasionally I do), but I wake up on an almost nightly basis at least once to pass gas plus mucus and/or the tiniest amount of loose stool. This didn't happen last flare, as far as I remember; I know that when the GI doc asked me if it wakes me up at night I said no, it didn't.

 

[Cat-a-Tonic]

Ballerina - my understanding is, a normal functional bowel or even a bowel with IBS will not wake you for any reason when you're asleep. When you go to sleep, so do your guts and your brain, essentially - in a healthy or an IBS person anyway. (The thought is, with IBS, that it's a brain-gut malfunction - that the brain misfires and sends erroneous signals telling the guts to cramp - but when the brain sleeps, that signal doesn't get sent, so theoretically no IBS symptoms should occur when you're asleep.) But with IBD, the inflammation obviously doesn't go away when you go to sleep, so you can still wake with pain, gas, mucus, d, etc because the inflammatory process is still going on. So in a nutshell, regardless of what's coming out, your digestive tract shouldn't be waking you in the night for any reason as it should be basically dormant when you're asleep - unless there is inflammation. In that case, it sounds to me like there's got to be an inflammatory process going on if you're waking about once per night. Definitely mention it to your doctor!

 

[Eternal_Howl]

Well I just got home and got a letter from my health insurer saying I AM eligible for coverage of the agile capsule endoscopy - not wireless at this time. Guess I need to call the nurse tomorrow and try and set it up for one of my days off next week (got 3 days vacation - mandatory).
If it's not wireless, then what is it? I thought it wirelessly transmitted signals to a box you carry. I guess I don't understand.

 

[gotumtum]

Hey gotumtum that is a really great idea, even if it was meant for Leanne and not me, lol. I think I'll look into that...

No probs

The commute is really good too!!!

Another place that might data inputted is engineering companies. ?


I think I saw a site online somewhere as a hub for this type of work - but no idea what it was sorry

I have just started doing some of this work - it is a nice wee addition to the household income. (or savings towards a new kitchen!)

 

[gotumtum]

Well I just got home and got a letter from my health insurer saying I AM eligible for coverage of the agile capsule endoscopy - not wireless at this time. Guess I need to call the nurse tomorrow and try and set it up for one of my days off next week (got 3 days vacation - mandatory).
If it's not wireless, then what is it? I thought it wirelessly transmitted signals to a box you carry. I guess I don't understand.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2744056/

- is it possible that it is just a type of capsule that checks for obstructions before the pill cam?

Hugs

 

[Eternal_Howl]

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2744056/

- is it possible that it is just a type of capsule that checks for obstructions before the pill cam?

Hugs

That is probably quite likely. Because that's what I'm supposed to get first. Sometimes it takes a Kiwi to show a Kiwi!

 

[gotumtum]

That is probably quite likely. Because that's what I'm supposed to get first. Sometimes it takes a Kiwi to show a Kiwi!

I was just curious - Thankyou google!

 

[StarGirrrrl]

First post Hospital blood tests today, why am I so terrified

I know if I am anaemic again and need another transfusion i'll feel better after, and be well looked after, and have the cause looked into more aggressively (maybe even leading to a diagnosis!).

So having to go back would be a good thing maybe but I am not feeling good right now!

This is also only stage one of three, got to do a second lot of bloods then will be seen at Outpatients (no appointment yet) to see where things are and where things will go :ybatty:

 

[Cat-a-Tonic]

Star, if your bloodwork is still less than stellar, would that mean that perhaps you could go back on that pain medication that was working really well for you? (I don't remember which med it was, but I believe you said something about the doctors suspected it was the possible cause of the low hemoglobin.)

I'm having a bad day. I ran out of Pentasa and my GI didn't refill it yet. I keep calling the pharmacy but he hasn't sent through the refill yet and I'm afraid I'm going to flare if I don't get it soon. The stress of this is making my guts worse so I had a rough night with pretty explosive d last night. Ughhhh. So not happy.

 

[fissure2]

do any of you get acidic or burning D?

 

[happyballerina]

do any of you get acidic or burning D?

Yes, not all the time but sometimes. It can be very painful. When you get it, does the D look kind of yellow-ish? I think mine sometimes does and I think that may mean it could be bile that is stinging, but i'm not sure.

What does your GI say about it (if you've told him/her)?

 

[happyballerina]

Ballerina - my understanding is, a normal functional bowel or even a bowel with IBS will not wake you for any reason when you're asleep. When you go to sleep, so do your guts and your brain, essentially - in a healthy or an IBS person anyway. (The thought is, with IBS, that it's a brain-gut malfunction - that the brain misfires and sends erroneous signals telling the guts to cramp - but when the brain sleeps, that signal doesn't get sent, so theoretically no IBS symptoms should occur when you're asleep.) But with IBD, the inflammation obviously doesn't go away when you go to sleep, so you can still wake with pain, gas, mucus, d, etc because the inflammatory process is still going on. So in a nutshell, regardless of what's coming out, your digestive tract shouldn't be waking you in the night for any reason as it should be basically dormant when you're asleep - unless there is inflammation. In that case, it sounds to me like there's got to be an inflammatory process going on if you're waking about once per night. Definitely mention it to your doctor!

Thanks for that, that makes a lot of sense and is along the lines of what I was thinking. I'll definitely bring it up to my doctor. It'll probably not matter much when I go see my GP (but who knows?), but if/when I go to the GI I will definitely, definitely, definitely bring it up.

On a positive note, I haven't had any bleeding (none that I could see, anyway) for the last 2 or 3 days. That thing - which I don't know if it's a hemorrhoid, skin tag, or something else - is still there, however.

 

[fissure2]

Yes, not all the time but sometimes. It can be very painful. When you get it, does the D look kind of yellow-ish? I think mine sometimes does and I think that may mean it could be bile that is stinging, but i'm not sure.

What does your GI say about it (if you've told him/her)?[/QUOTE

mine is sometimes also. It just looks light brown not yellow. I do get a burning yellow discharge sometimes also that ive been told is mucous from the inflammation. I will ask the GI about it on monday. i was told my my GP that the exit might just be very tender from the abuse, and stool has a naturally acidic component to it. I dont eat very acidic foods tho, but i did have a berry smoothie the other day. my gp also said to try A & D cream.

 

[StarGirrrrl]

Star, if your bloodwork is still less than stellar, would that mean that perhaps you could go back on that pain medication that was working really well for you? (I don't remember which med it was, but I believe you said something about the doctors suspected it was the possible cause of the low hemoglobin.)

I'm having a bad day. I ran out of Pentasa and my GI didn't refill it yet. I keep calling the pharmacy but he hasn't sent through the refill yet and I'm afraid I'm going to flare if I don't get it soon. The stress of this is making my guts worse so I had a rough night with pretty explosive d last night. Ughhhh. So not happy.

Probably not, because there was mild damage in the stomach which they are pretty sure was the medication.

I could ask for a lower dose of the pain meds, and a higher dose of the protection, but currently thinking it would be too risky, regretfully.

Maybe that would be something to explore in the future when the pain gets bad again if they can't find anything else for me to try. Managing ok with the co-codamol at the moment.

I hope you get your refil soon! :ghug:

 

[RosannaKate]

On the homeworking subject - if any of you have any expierance in administration, media, web edits.... possibly look into virtual PA jobs. I have taken one on and dependant on hours and how it goes it may give me the money to give up my other job!! You have to work freelance meaning you have to deal with tax and that, but its well worth it!

Will update you all on my stupid condition later - its no better than usual -_-

 

[gotumtum]

On the homeworking subject - if any of you have any expierance in administration, media, web edits.... possibly look into virtual PA jobs. I have taken one on and dependant on hours and how it goes it may give me the money to give up my other job!! You have to work freelance meaning you have to deal with tax and that, but its well worth it!

Hi Rosanna Kate - is there any way we can let Happy Ballerina know about this as she was looking into this too but not sure if she had any luck...

Hope it goes well for you

 

[fissure2]

here:

https://www.odesk.com/o/jobs/browse/skill/data-entry/

 

[LewisS]

Quick question guys. Do any of you go for periods of having really mild symptoms? Like for a week or longer? I mean those not on medication too.

I'm weirdly having barely any pain, still having loose stools, but more formed than normal. Maybe the iron is bulking it up...idk!

 

[RosannaKate]

Gotumtum - hopefully she'll pop on and see this. You do need past experiance however as it is very hard if you dont know what your doing on website edits and collaborative technologies. I'll drop a message to her if she hasnt come on later on today so she doesnt miss it.

Update on my condition - I have gotten much much worse recently! I can hardly walk most days as the pain is pushing into my groin too. D 20+ times a day and masses of pain that wont go no matter what i try. To top that off i have also got a stomach infection on top now. I am constantly bleeding and having urge to go to the toilet for just dark blood to come out, usually with a lot of mucus too. I couldn't speak to my usual GP friday as he wasnt in so i said i'd speak to someone else as i couldnt breath the pain was SO intense. So actually this may have been a good thing! Looked through notes of past tests and saod 'i believe that you have colitis from what i can see but i'd like to get another GI to look at you and i'll write him a report as to why i think it so he doesnt fob you off (hes the practise lead gp). He also believes i have a stomach infection and has put me on antibiotics while waiting on blood results. He has said to me that no matter what the GI says at my next appt, if they dont help he will refer me to a specialist hospital in GI in the country for a 3rd opinion as hes convinced there is more to this than functional problems. He said there isn't any way in which i'd be getting this much blood, discomfort and pain from 'just functional' problems. Hes also said that once i have finished this antibiotic course if i am still as bad he will put me on steriod tablets instead of leaving me struggling! Wahoooooooooooooooooooooooooooooooo - someone finally believes me!!! Hopefully he can help me sort this as i really need to get my life back!

 

[fissure2]

yes lewisS. I was always told recovery and healing are not a linear process. some days ill have D like twice today has been 6 so far. i am not in remission yet, but i think its something i ate.

 

[gemling]

Rosanna, that's great news! Hope it can happen swftly and that the antibiotics help you out. Glad you've finally got a GP really fighting for you.

 

[happyballerina]

Yes thank you gotumtum et al I have read your posts I just can't write a proper reply atm. Will come back later!

 

[StarGirrrrl]

Rosanna I am so glad to hear your news

I had my first post Hospital admission blood tests Friday and no phone call to summon me back, yay. Doesn't mean all is well but would seem to mean I am in no immediate danger as I was last time.

Pain starting to get bad but realised since I am no longer taking Naproxen I can use ibuprofen gel again which always worked nicely. As a top-up or instead of taking a Co-Codamol.

Had a great letter from new Rheumy today he is really on top of things. I am being looked after so well at this new Hospital. Slightly anxious as I am due for a follow up regarding the anaemia in 2 weeks but no appointment yet, and was asked to do the final blood tests a week before I am seen. I guess as soon as I get an appointment through I can go that morning for the blood tests. Maybe next week I could chase it up with them.

 

[fissure2]

i recommend everyone on this whole website look into 'anti-inflammatory diet'

 

[happyballerina]

Hey guys! Thanks again for the online work suggestions; I don't have any experience to allow me to do the more specialized stuff, but simple data entry is something I may look into. I thought of it a few years ago but forgot about it as other opportunities presented themselves. I am currently still in college (undergrad) as I've only been doing part-time until now due to my ballet, but this fall I'm going back full time (I'm 21).

Story time! It's about poop. Surprise, surprise...!

So. Yesterday I had a wonderful experience while out shopping - NOT. I had made plans with a friend to meet in the evening for coffee and then a movie (I hadn't seen her in 6 months since I left for Russia and we're great friends). I left about an hour early and decided to go into Whole Foods to pass the time and look around because I like those kind of stores and I needed a couple things anyway. The whole day I was eating lightly, both because I wasn't hungry anyway as well as because I actively wanted to minimize any bathroom trips or pain, urgent or not, while out with my friend. It obviously ended up not being a big help, because while I was at whole foods I felt like I had to go to the bathroom. Since this flare has started, I have had urgency like nothing I've ever experienced before. It's almost like my rectum is not working well enough because the moment I have to go, I HAVE TO GO. I get a strange feeling of discomfort in what I think to be my rectum that I would almost describe as painful (and it is aside from the abdominal pain which is sometimes there and sometimes not which, when it is present, it seems to happen during the BM more often than not and borders on unbearable). Anyway, it's a catch-22 with the urgency I get - I have to run to the bathroom, but I never run because it feels like there is no chance of holding it in if I do run; even walking is risky. The discomfort/pain that passes over me is the kind where I close my eyes and hold my breath or, alternatively, breath deeply (more like both, one after the other, in that order). Ideally I am also lying down or able to lie down because, more than even helping the discomfort/pain pass, it helps me hold it in until the wave of urgency passes and I feel like it's safe to get up and go to the bathroom without losing control on the way there. I have had a few accidents in Russia, but every single time I was already in my dorm room and it was as I was hightailing it to the bathroom, and it was never much. I have had several experiences with this urgency coming over me while out an about, and ever time I either slow to a very slow walk or stop altogether until I can collect myself and make my way to the bathroom. Sometimes I can delay it over a few episodes before making it to the bathroom if it's too far to make it right away. It's not comfortable, but I manage. It happened almost every day this week while out but I've had no accidents. I kept telling my mom about it and how it would suck so much if I pooped my pants because I couldn't hold it in, which was clearly something I knew was becoming incredibly likely.

Well, yesterday, I had that urge hit me, and I did what I have been doing: pausing, breathing, willing it to go away so I could get on with my life. I had some things in my basket and didn't want to just set it down and run to the bathroom, and within a few seconds I willed the urge away and resumed with my shopping/browsing. I only had a couple isles left to look at, and as I said before, I have been able to make it through a few episodes at a time before making it to the bathroom. Not so yesterday! The urge hit me a second time very soon after and I tried holding it again for what seemed like forever as I tried to make my way to the bathroom, when all of a sudden I just knew that it simply was not happening. Nope. I was going to poop my pants. There was nothing I could do to stop it short of maybe laying on the ground and that was not something I wanted to do nor had the time to do, and it was probably too late for even that to help regardless. So I pooped my pants.

Whole Foods has a section where they sell clothes, and I was very nearby it, so my first thought was to grab one of the dresses they had hanging, pay for it, and go into the bathroom to clean myself up, wear the dress, and go home to wash up and get myself ready again to go out and meet my friend. But I couldn't even stand the time it took to go through the dresses looking for my size, let alone standing in line, paying for it, and all the time that would take. So I decided, "screw it", and ran to the bathroom. I stripped myself of my jeans and underwear and called my mom and told her what happened and asked her to bring me a pair of shorts and underwear. It's about 15-20 min from my house plus she had to get dressed so all in all I had to wait there for 30 minutes or so, but at least I knew she was going to come rescue me! And besides, I spent at least half that time trying to clean myself up. It was a REALLY good thing I was carrying baby wipes in my purse, "just in case." I has JUST enough. For the record, I am adding a change of clothes and hand sanitizer to my 'emergency kit' now. While I was cleaning up and waiting for my mom, I had the wonderful experience of hearing some lady walk in and say something along the lines of "Oh god, it smells awful in here, like a dead horse! Somebody's sick!" (imagine that in a southern drawl and it makes it even more annoying). Whatever, some people have no tact, and it's not like it wasn't true It bothered me to hear because I was obviously already quite upset that this happened, but I wouldn't say I was mortified and I would say I kept quite calm even with the lovely addition of the commentary I heard, probably because I was mentally prepared for the possibility of this situation happening. I didn't cry until my mom got there and only then it was a few tears, which is impressive as I tend to cry easily (I think I'm better now than I used to be, though). The only thing that really pissed me off was that the cleaning lady was literally waiting for freaking ever at the door of the bathroom until I got out of the stall so she could clean it (and I am 99% sure it was her that provided the commentary...), which left me raging as I was going to take my sweet time to wipe my butt and not giving a flying f*** about how long she had to wait, especially since it's not like I had a choice to come out until my mom came with clothes for me anyway. Who does that?! Ugh. She ended up leaving at some point, which made me feel better as I walked out, although I had already decided before-hand to not care at all what anyone thought of me, especially the tactless cleaning lady.

In the end it was fine; my mom brought me clothes, I cleaned myself up, and I was only 20 minutes or so late to meet up with my friend, whom I had already texted from the bathroom to let her know I had a "tiny emergency and would be late". No big deal and she happened to know a little bit about my GI problems anyway as we're very close so she was 100% understanding. Oh, and the movie was great. It was X-Men.

And now, I have an unfortunate story to include in what I'll be telling the doctor today! I was supposed to go on Saturday but she wasn't there, so I'm going this afternoon after I go to the eye doctor for new contacts. And, after that, I'm going to the store for a new pair of jeans or two

I hope it goes well at the doctor (finally!) because I need this shite [pun obviously intended, haha] to stop.

 

[Suzi86]

What a story! I hope you are ok and it's nice you are making light of it! You have the right attitude anyway x

 

[Cat-a-Tonic]

Ballerina, that's awful! I'm glad your mom was able to come rescue you. As for the cleaning lady, if she didn't want to deal with (literal) crap then she should look for another line of work! I keep an emergency kit in the trunk of my car too - it has spare pants & underwear, TP and wipes, a towel, and some plastic bags. I haven't had to use it yet (knock on wood!) but it's nice to know it's there just in case. I really should go through my kit in fact - I'm not sure if the pants still fit me anymore (I've gained a bit of weight/bloat in my midsection thanks to Entocort) and the wipes have been in that kit for a few years so they may have dried out...

The "dead horse" comment, I wonder if that lady has ever smelled an actual dead horse. I had a dead mouse in my purse once (a lovely gift from my cat) and it wasn't a purse that I used every day, so I didn't find it until I think about a week after it had died. By the time I noticed the smell and found the mouse, it was horrific, it was eye-watering, like worse than any smell I could make in the bathroom - and that was just a little mouse! So I would think it's way overkill for that dumb lady to say it was like a dead horse. I would have been tempted to say something like, "Really, how many dead horses do you know?" But then I'm a bit snarky.

Star, that's great that they didn't call you back in a panic - hopefully everything is okay or at least on its way to being okay! Good luck with the appointment and blood tests, keep us posted on how all that goes.

As for me, I got ahold of my GI's nurse on Friday afternoon - she said the pharmacy never faxed her the request for more Pentasa refills. My pharmacy said they sent the fax, twice. So somebody dropped the ball but I'm not sure who! At any rate, the nurse was lovely and she was able to authorize more refills, so I got my Pentasa on Friday evening. Phew! I had a bit of a stressful weekend though and didn't feel great - my car broke down on Saturday morning and I was already feeling yucky and fatigued, so that really sucked. Fortunately the tow truck came quickly and got me to a repair shop, although of course they didn't have the parts they needed to fix my car. Hmmph. It's supposedly going to be repaired today. So in the meantime I have to drive hubby's big ugly car, ha ha. My car is little and cute and nice - totally a girl car. Hubby's car is big, loud, dirty, no hubcaps, scratched up and has some rust, etc. It's totally a boy car and I'm a bit embarassed to drive it! But of course it's nice to have transportation. I just want my car back though!

 

[happyballerina]

Thank you guys! It was a little adventure for sure, but no big deal in the end. I am just ridiculously happy that it at least happened here, at home, with my mom available to help me and not in Russia alone! Now that would have been a real nightmare.

Cat, I totally agree about the cleaning lady! Lol. And the thing is that the bathroom was totally clean as if I hadn't even been there. The mess was in my pants, not on the walls :rof:

So I just got back from my doctor and omg you guys. What can I say, she is the BEST doctor BY FAR that I have EVER had! She's amazing, I love her. First thing she did when she came into the room was give me a hug and tell me I need to get a tan because I'm way too pale :lol:

It was an extremely productive appointment; the thing that impressed me the most, other than her super duper people-skills and listening skills, was how she was not only thorough but she also looked at everything holistically - and that is the benefit of having a good family practitioner as a GP (they can look at the big picture and see what might be related and what might not). I want to tell you guys about what happened at the appointment and how it went! It'll probably be a bit long so if it's too long and boring to read I put a TL;DR version all the way at the bottom. Otherwise, here's the whole story, because I feel like writing it out (I'm quite excited that it went so well, so yeah).

At the beginning of the appointment she started with, "well, you may just have IBS," as she had told me over the phone in Russia. But obviously that was without examining me, seeing me, taking tests, and knowing the extent of my symptoms; so, naturally, we began to talk about everything that's going on and my symptoms and their severity. I told her everything I told you guys on here (except for the mouth sores, because I forgot), including what happened at the store yesterday, the extreme abdominal pain, the rectal discomfort/pain when I have severe urgency, the unbelievable number of times I can go to the bathroom in one day if it happens to be a really bad day (I counted 30+ on one of my worst days), that it wakes me up at night some nights, etc. The more and more I spoke, the bigger and bigger her eyes got :tongue: She said multiple times that "that's bad" in between me explaining it all, and I could almost see the gears in her head working with every additional detail. I don't know at which point exactly, but at some point it was obvious that any notion of IBS had, at the very least, been suspended temporarily and, at most, been thrown right out the window.

I went on to tell her about where the pain is and about how the nurse in Russia felt a lump there and I felt it too, and she looked at me with that kind of "Nah, common!" expression of half disbelief half curiosity, but wanted to see for herself. She had me lay down and she palpated my abdomen and it hurt quite a lot in that tender spot. And guess what? She could feel a lump right in the area I thought I could. I was almost surprised to hear that because I was starting to convince myself I'm imagining all of this and that nothing is wrong with me and that I'm just looking for trouble or something. But I'm NOT. It's THERE! I feel SO MUCH better now that I know that I'm not imagining any of this and that she feels it for herself and that SOMETHING is going on there. It was at that point that she started really getting serious and bringing up the possibilities of it being something more sinister than just IBS.

We went on to talk about my other issues and when we got to my back and hips, and then my other joints, this look of clarity came over over face and she said, "I think you may have inflammatory arthritis, and I think it might be related to your bowels. I think all this (pointing around the hips and back and bowels) is related. And it could be something else...if it's what I think it might be, it could explain your thyroid levels, too. But I really hope it's not what I think it might be." She didn't say what it was she thought it might be (although I could take what I'd bet to be a pretty good guess), but I didn't care, I didn't bother to ask. All that mattered was that she understands what's been going on and she's made ALL the connections I've been making, and this was without me prompting anything about them possibly being related. I might be getting somewhere with this. And at the very least, I have a doctor that listens, and that CARES, for real.

She ordered lots of bloods and a CT scan which I will have on Wednesday morning. She said that depending on the results, she'll either want to start me on some medicines, run some more tests, or refer me to a specialist. We didn't do stool tests, but if that becomes necessary then I've no doubt we will. All in all, I feel like I'm getting somewhere. At the very least, it's very good to know that someone else, and not just anyone else but a doctor, also thinks that whatever is going on is extremely unusual, not nothing, and something that needs to be looked into. And that's enough, for now, for me to be very happy. I know that you all will get that and understand why, even if I have no diagnosis yet or even test results back yet. It just MATTERS that she's taking action. I am very thankful to her for doing that.

I don't know what will come of this until I get the test results, but I don't care; I just want to know what's going on and this is a good start. I AM nervous that the tests won't show anything and I'll be back to square one, but at least I know now that I have someone "on my side" if things get really. Right now, I mostly just feel hopeful, a little nervous, and very satisfied with how the appointment went today.

TL;DR - she no longer thinks it's IBS, she feels a lump in my abdomen and I have a CT scan on Wednesday morning. She ordered bloods and she thinks I may have inflammatory arthritis which would relate to my bowel; I may have IBD or I may have a volvulus or it might be something else, we don't know yet. She thought of another possibility but didn't mention what it was, only that it would also explain my thyroid problems but that she hopes it's not what she thinks it might be.

 

[Jboy--]

Kind of off topic, but to the people that have been diagnosed with Crohn's disease:
Do you get a lot of fevers and moments when you get really warm? Even though it's not warm in the building or place you are. Endoscopy and Colonoscopy are next week for me, just curious before I get to find out my diagnosis.

 

[StarGirrrrl]

Hi Jboy, we get more undiagnosed than diagnosed people reading this thread, so you might get more responses if you post in the General IBD discussion board

I do hope that your scopes lead to a diagnosis, however it's not certain they will, but the good news is there are other tests that can look for example at the whole small bowel, becuase it's super super long and each scope only peeks into either end.

:ghug: