New, in the process of being diagnosed & fed up.. feel like a fraud

[osci]

Hi all

just joined this forum and wanted to say hi & give you all a bit of background info on myself.

I'm almost 35. In the past 2 years i've had 3 operations, firstly for a perianal abscess, which 6 weeks later they decided was actually a perianal fistula so another op, followed by months and months of GP visits for antibiotics and me begging for a referal back to the surgeon, finally getting an MRI which confirmed i have a complex fistula still after 2 years so had a 3rd op in March of this year to fit a cutting seton.. follow up appointments with surgeon as an out patient showed it wasnt healing (and was causing me excruciating pain all the time) so they removed it and another MRI followed showing i'm back to square one :frown:

Yesterday i had a flexi sigmoidoscopy which showed not a lot apparently, they took 3 random biopsy's so have to wait for the results of those, and i'm having a barium meal.. mmm yummy.. on Thursday next week to see what else they can find. They also took a whole load of bloods last time to see how my body is functioning in general but i've not been told the results of those and have to wait till i've had all the tests to see the surgeon again to discuss

The surgeon is convinced my problems all stem from Crohns Disease, i have lots of lovely other symptoms such a pain on my left side a lot, some pain on my right side, fainting/dizzy spells, bloating, blood, achy body, really bad diarrhoea every single day, chronic fatigue and that's just to name a few!

Basically I'm fed up of being ill, feel so shattered and this flippen fistula is causing me untold grief. I have horses so sitting on them isn't exactly as fun as it used to be as you can imagine and now i'm feeling like a big fraud thanks to the sigmoidoscopy yesterday showing nothing up... please tell me i'm not going mad and that they will get to the bottom of this (no pun intended) and it gets better once diagnosed and on meds.

 

[~Manders~]

I'm so sorry you are going through this osci. And I'm sorry that I do not have any advice to offer but to stay strong & keep persistent. I know what it's like to know that something just isn't right, but nobody seems to be doing anything about it! You are not going mad! Hang in there. Hopefully someone will be able to help you out soon. :hug:

 

[osci]

I'm so sorry you are going through this osci. And I'm sorry that I do not have any advice to offer but to stay strong & keep persistent. I know what it's like to know that something just isn't right, but nobody seems to be doing anything about it! You are not going mad! Hang in there. Hopefully someone will be able to help you out soon. :hug:

Thanks Manders, i know i'm not imagining the pain, diarrhoea or anything else but when the flexi sig came back clear from the initial look i just felt like i'm a total fraud wasting everyone's time. I suppose if i do have something like CD it can be higher up and will show up with next weeks barium meal?

 

[~Manders~]

I had many tests before I was actually diagnosed with CD. You can check out My story in the link from my siggy. I know exactly what it feels like. I just think some doctors are either 1. idiots 2. not knowledgeable enough about what you are going through 3. don't care. I suggest "shopping around" and finding a doctor that wants to and is capable of working with you to find the answers you are looking for.
To me, it sounds like CD...but my GI frequently reminds me that I am not a doctor so you will have to get someone else's opinion

 

[Angrybird]

Hello and welcome to the forum, I am sorry to hear that you are having such a diffucult time of it

If the barium and sigmoid results cannot help point towards a definitive diagnosis then if the problem is higher up in the GI track a pill cam can be useful. Out of interest are you under the care of a GI doc or are these current tests being arranged by the surgeon/your GP?

AB
xx

 

[osci]

Thank you again Manders, i didn't realise it was going to be so hard to get answers but seems like it often is like that. I'll go and look at your story now, thank you again it means a lot to know i'm not going mad! x

 

[osci]

Hello and welcome to the forum, I am sorry to hear that you are having such a diffucult time of it

If the barium and sigmoid results cannot help point towards a definitive diagnosis then if the problem is higher up in the GI track a pill cam can be useful. Out of interest are you under the care of a GI doc or are these current tests being arranged by the surgeon/your GP?

AB
xx

Hi Angrybird

Well having read half this forum today i am armed with so much info my brain is about to explode! i shall be heading to that follow up appointment (whenever it may be) with a list of suggestions! I'm under the surgeon at the local NHS hospital, i'm in the UK, the GP's were pretty useless apart from one who finally took me seriously and referred me to set the ball rolling. What is a GI doc? Assuming it's a doc who is specifically involved in colon's/bowels etc.. my surgeon is an expert (allegedly) in his field of colorectal issues so does that count? I'm still finding my feet with all the terminology!

I'm so glad that you & Mander's dont think i'm mad.. it's an awful feeling to think your wasting people's time when they come back and say nothing there, who knows maybe the biopsy's will show something or the barium meal/follow through xray thingy next week.

I'm finding it really hard trying to explain my situation to work and to some friends/family. People just don't "get" that i feel horrendous or am shattered, above and beyond the normal feeling of tired after a day at work, or that i'm late for work by all of 2 minutes some mornings because i spent an hour this morning in the bathroom going 5 times because i dared to try and eat breakfast before i left home and i get faced with "you should get up earlier".

I might be almost 35 but i feel like a small child when faced with some of these doctors, almost like i'm making it up for attention.. all i want is my life back and to be able to do normal things like start a family before it's too late or to ride my horses that i've worked damn hard to buy and keep as they are my means of escape and relaxation.

Thank you for making me feel so welcome xx

 

[osci]

Oooh AngryBird, i've just realised your not that far away from me!

 

[David]

Hi osci and welcome to the community. I'm so sorry to hear what you're going through But as others have said, you are most definitely NOT a fraud. Frauds don't get the symptoms you have.

While all the symptoms you're describing make me suspect Crohn's disease, make sure they have or plan to evaluate you for tuberculosis (TB), HIV, chlamydia, and syphilis as they can lead to fistulae as well.

We're here for you. Please keep us updated as to what they find with the new tests.

 

[Angrybird]

By GI I mean gastroenterologist, definetly take a list of questions with you when you next see the doc so you don't forget anything.

 

[Ckt]

Please don't give up or think you're completely bonkers! It's a hard disease to diagnose. I didn't get a firm diagnosis until I was 40 and they think in looking at my history that I first had crohns when I was 20 and had a ruptured appendix in London. I had many surgeries in my 20s then was pretty healthy in my 30s. I was finally diagnosed after being in India and Africa working for about a year and a half. My very first colonoscopy showed ulcers in my terminal ileum and then surgery confirmed the diagnosis. My 40s were pretty rough..I couldn't get it under control no matter what they gave me. I'm 51 now and was switched to cimzia recently.i was just in the hospital and felt pretty dang good when they discharged me. A week later I'm feeling bad again!but I
Going to a new gastro guy in Chicago for any recommendations he can give..
The moral of my story is I just refuse to give in!
My lab results have never been raised..the inflammatory markers are nil. Always have been. So just keep your chin up and know that a diagnosis is possible even if your crohns doesn't sit up and shout HERE I AM'!!
Would your doctor consider treating you empirically after everything else has been ruled out?what I mean is treating you symptom wise?
Here's hoping you hear something definitive that can lead you to the right course of action!!

 

[Ihurt]

Which Gastro doc are you going to see in Chicago?? I am from Chicago. I am having all kinds of issues with my guts and still dont know what is wrong with me. My gastro thinks IBS. I am not sure though. My symptoms started about a year ago. I would have pain on anf off in my intestinal area. Then from March until July I was in pain 24/7. I did not have diaraha really, just a couple times I was on the soft side. I felt like I had to go all the time, but only went once a day. They after suffering for those few months, it switched to being kind of constipated where I would go every other day. Then it went away for two months. Now I starting to have pain again. I have had stool tests and blood work which is all normal. Gastro doc is certain it is IBS. I have a lot of other health issues too, so this stinks. But yeah, what doc are seeing over here?? Does he specialize in crohns?

Please don't give up or think you're completely bonkers! It's a hard disease to diagnose. I didn't get a firm diagnosis until I was 40 and they think in looking at my history that I first had crohns when I was 20 and had a ruptured appendix in London. I had many surgeries in my 20s then was pretty healthy in my 30s. I was finally diagnosed after being in India and Africa working for about a year and a half. My very first colonoscopy showed ulcers in my terminal ileum and then surgery confirmed the diagnosis. My 40s were pretty rough..I couldn't get it under control no matter what they gave me. I'm 51 now and was switched to cimzia recently.i was just in the hospital and felt pretty dang good when they discharged me. A week later I'm feeling bad again!but I
Going to a new gastro guy in Chicago for any recommendations he can give..
The moral of my story is I just refuse to give in!
My lab results have never been raised..the inflammatory markers are nil. Always have been. So just keep your chin up and know that a diagnosis is possible even if your crohns doesn't sit up and shout HERE I AM'!!
Would your doctor consider treating you empirically after everything else has been ruled out?what I mean is treating you symptom wise?
Here's hoping you hear something definitive that can lead you to the right course of action!!

 

[Ckt]

I'm going to see dr Russell Cohen at the university of Chicago in the IBD clinic. He originally diagnosed me in 2000 and they were fantastic then!spent a few hours looking at all my history and tests. He is a specialist not only in gastro but in crohns and uc. Since you live in that area,I would high tail it to u of c! They are ranked as one of the best!

 

[Ckt]

PS..if you have it, they will find it!and if it's not an IBD, they will also find out what it is..they see weird cases there all the time!their rns are also especially trained in a fellowship for IBD along with their residents..it doesn't get better IMO!

 

[osci]

Hi osci and welcome to the community. I'm so sorry to hear what you're going through But as others have said, you are most definitely NOT a fraud. Frauds don't get the symptoms you have.

While all the symptoms you're describing make me suspect Crohn's disease, make sure they have or plan to evaluate you for tuberculosis (TB), HIV, chlamydia, and syphilis as they can lead to fistulae as well.

We're here for you. Please keep us updated as to what they find with the new tests.

Thanks David... am now even more scared of what they will find! Didn't know that all these other things can cause fistulas, wouldn't have thought i am at risk of having any of those but i will certainly be printing off this thread and taking it with me to ask!

Thank you to everyone who has welcomed me and given me advice, i have been a royal pain in the bum to the surgeon and his secretary & also to my GP so far which is the only way to get answers or appointments, and i don't plan on giving up yet! I think they are probably getting sick of me calling & emailing now hence getting somewhere with tests etc, the surgeon himself is great i think, its the waiting list on the NHS to get an appointment slot for anything which takes so long.

 

[Ihurt]

CKT: Thanks for the info. I went to the University of Chicago 8 years ago when I was having upper gut issues. I had an awful experience! I saw a Dr. There ( not the on you mentioned), this guys name was Dr. Winnans. He is or was ( not sure if he is even there anymore) a professor of gastroenterology. He was awful!! He told my husband and I my health problems were because I was a woman, and women always make a mountain out of a mole hill! I was so disgusted I never went back there. I will look into the doctor you mentioned though, hopefully that guy I saw is gone and not there anymore( he was up there in age, like in his late 70's). Right now I am seeing a gastro doc at Northwestern Uninversity downtown Chicago. Thanks again for the info, I will definitely check it out.

 

[Ckt]

That's horrible!it boggles the mind what some doctors will say. No, dr Cohen is excellent. He is co director of that IBD clinic and took so much time with me back in 2000. I'll give you an update after next Thursday! When I was in the hospital in Portugal, the doctor questioned my diagnosis until I told him who diagnosed me. He backed way the hell off as dr Cohen is a leader in IBD!

 

[Ihurt]

Thanks for that info on Dr. Cohen. It is good to know of someone who specializes in this disease and is a good gastro in general. Yes, please give an update on how things are going after your appt.

 

[Avw]

osci- Sorry to hear you're having trouble getting a diagnosis. Not sure how true this is, but I believe I've heard a sigmoidoscopy has very limited view as far what can be examined with it, if that's the case then it's no surprise it didn't show anything. Hopefully the barium will turn up something.

Ihurt- I just started seeing Doctor Barrett at Northwestern, he was great. Very thorough, very kind, always makes himself available to his patients. If you don't have any luck with who you're seeing now, I highly recommend him. I'm told he's "the fistula guy"... which I suppose is why I was referred to him.

 

[Ihurt]

AVW: Thanks for the suggestion. I am seeing Dr. Vanagunas there. He is supposedly like the head GI doc for the Northwestern faculty foundation of gastroenterology. I use to see Dr. Jones, he was pretty good, but he moved out of state. He was the one who recommended Dr. Vanagunas. Thanks for suggesting Dr. Barrett, it is always good to know. I am just frustrated with how I feel. I had horrible intestinal pain from like march until like the beginning of July. Dr. Vanagunas said he was certain I had IBS. Then I started on this all natural fiber supplement and felt a lot better. I only stayed on the fiber supplement for three weeks, I ended up have a reaction to it ( my nose got all stuffy and inflammed). It was made of plant fibers, so maybe I was allergic to something in it. Anyhow, I was still going good, no pain or issues for two month, then about three days ago, BAM, I am in pain again. I do not have diaraha, just pain and crampy feelings and sore feeling inside. I usually go once a day when I am normal. BUt now it is once every other day and it is mixed soft stool with hard little round pieces. ( sorry if that was too gross). For me, the pain is the worst. I feel it all throughout my guts. Dr. Vanagunas did the blood work and stool tests. They were normal. He did not recommend the colonoscopy due to I have other health issues and he said that there is risk involved since colonoscopy is invasive. For me the real issue is that I have chronic UTI's and to have a colonoscopy you have to drink that stuff to induce diarrheaha. Well for women who get UTI's, they can easily get urinary infections when they get diarrheaa. Also, I have had to be on a low dose antibitoic to prevent the UTI's I was getting so my gut flora is already compromised. I do however take a lot of probitoics so that does help some. When you drink that laxative for colonoscopy prep, it wiped out a lot of your good flora and will leave you vunerable to infections in the gut. I think Dr. Vanagunas just does not want me to go through the procedure unless it is absolutely nessasary. He is being cautious I guess. I am just worried, I mean he is positive I have IBS. But in my mind, I really do not know. I mean I cannot believe IBS can cause so much pain. But he says that IBS can cause disabling pain. I guess I just have never seen anyone with IBS have bad pain like I am having. Who knows. But anyhow, thanks for the suggestion.

 

[osci]

osci- Sorry to hear you're having trouble getting a diagnosis. Not sure how true this is, but I believe I've heard a sigmoidoscopy has very limited view as far what can be examined with it, if that's the case then it's no surprise it didn't show anything. Hopefully the barium will turn up something.

Thank you. Yes not looking forward to the barium Thursday but hopefully it'll show something up!

I'm really hoping CKT that they will treat my symptoms whether they find something or not as clearly there's something not right and the fistula has out stayed it's welcome too!

I slept for 16 hours Saturday night... you tell me but i dont think that's normal!

 

[Ckt]

Osci- my thoughts are with you! Pain is so difficult to withstand and I know you want some clear answers to why you're having it and why you feel so fatigued. Have you tried any other bulking products? Like citrcel or psyllium? I just feel for you! Please keep us updated!

 

[osci]

Osci- my thoughts are with you! Pain is so difficult to withstand and I know you want some clear answers to why you're having it and why you feel so fatigued. Have you tried any other bulking products? Like citrcel or psyllium? I just feel for you! Please keep us updated!

Thanks Ckt, i don't even know what they are but i shall google! Part of me is scared to fiddle around with things until the tests are all done for fear of masking a problem which makes it harder to diagnose.. i'm just having a really bad day & feeling sorry for myself I'm at my desk trying to concentrate but constant runs to the toilet and feeling exhausted are not helping me to get my work done.

 

[Ckt]

Poor you!i so understand the frustration!i am going through a similar thing.. Even though I have well documented crohns. The doctors tell me different thugs and right now, they seem to think my crohns is well managed even though I'm spending my life either near a toilet or on it! I'm tired of being paranoid on what to eat or when to do it! And I understand the fear of masking a problem and not getting treatment! I have had the same fears so you aren't alone!
I know you are so tired of trying to get someone to listen but dont give up! Keep on until you are heard! Do you trust te doctor you are currently seeing? Do you feel you are getting the care you need?
I'll be in Chicago Thursday through the following week if you would like to meet up for tea or something..if you want, just pm me and I can give you my email and or phone number..maybe we can give each other some face to face support!just an idea!

 

[osci]

Poor you!i so understand the frustration!i am going through a similar thing.. Even though I have well documented crohns. The doctors tell me different thugs and right now, they seem to think my crohns is well managed even though I'm spending my life either near a toilet or on it! I'm tired of being paranoid on what to eat or when to do it! And I understand the fear of masking a problem and not getting treatment! I have had the same fears so you aren't alone!
I know you are so tired of trying to get someone to listen but dont give up! Keep on until you are heard! Do you trust te doctor you are currently seeing? Do you feel you are getting the care you need?
I'll be in Chicago Thursday through the following week if you would like to meet up for tea or something..if you want, just pm me and I can give you my email and or phone number..maybe we can give each other some face to face support!just an idea!

Glad i'm not alone in how i feel. I think this doctor is pretty good and once we know what is what he'll get treatment sorted (hopefully) but it's the good old NHS waiting list and how long it takes to get seen that is killing me! I know us here in the UK are very lucky that we get free health care (but not prescriptions) but it's infuriating how long it takes to get any answers! As i said i'm in England so thank you for the offer but i cant meet you in Chicago! Support face to face would have been fantastic

 

[Ckt]

So sorry!for some reason I thought you were incchisgo!my mind must be going as well as my intestine! I experiended your nhs system twice..1983 in university hospital in London in which they misdiagnosed me and my appendix ruptured): and just this past spring on the isle of wight..much better and very good actually! I know the wait is hard! Its hard to be patient when you feel crap! Hang in there and just keep pushing for answers!

 

[Sam07301985]

Osci I know exactly how you feel. I started feeling like I was some how imagining all my pain. I went through test after test and had 4 surgeries for fistulas I know how much they hurt especially the perianal ones there were times I couldnt even walk they were so bad. All I could do was sit in the bath tub for hours that was the only the way the pain would get better. It took almost five years for me to get diagnosed with crohns disease. The only test that diagnosed me was the camera pill. I swallowed a pill that was a camera and it took thousands of pictures of my small intestine and it showed I had crohns in my terminal ileum which was causing all my severe right side pain, diarrhea, fistulas, and all the other crappy ailments I was having. So just know that you are not alone. You are not crazy. You just have to keep pushing on until they find out whats wrong with you. Crohns can be a very hard disease to diagnose trust me I did every test out there. The camera study was the last test my GI doctor knew to do to try and see what was wrong with me and it was basically the only test that was able to diagnose me. Good Luck and stay strong.

 

[osci]

So sorry!for some reason I thought you were incchisgo!my mind must be going as well as my intestine! I experiended your nhs system twice..1983 in university hospital in London in which they misdiagnosed me and my appendix ruptured): and just this past spring on the isle of wight..much better and very good actually! I know the wait is hard! Its hard to be patient when you feel crap! Hang in there and just keep pushing for answers!

That's ok lol, made me giggle in the middle of a shitty day if nothing else! Yes I think our system is good & we have some fantastic surgeons etc, it's the waiting lists that are famous for good reason for being long! I don't think half the surgeons etc have any idea how long the waits are either as last time I saw my surgeon to see how I was healing from the latest (failed) surgery & seton he was pretty shocked at how long I'd had to wait when I told him.

 

[Avw]

Poor you!i so understand the frustration!i am going through a similar thing.. Even though I have well documented crohns. The doctors tell me different thugs and right now, they seem to think my crohns is well managed even though I'm spending my life either near a toilet or on it! I'm tired of being paranoid on what to eat or when to do it! And I understand the fear of masking a problem and not getting treatment! I have had the same fears so you aren't alone!
I know you are so tired of trying to get someone to listen but dont give up! Keep on until you are heard! Do you trust te doctor you are currently seeing? Do you feel you are getting the care you need?
I'll be in Chicago Thursday through the following week if you would like to meet up for tea or something..if you want, just pm me and I can give you my email and or phone number..maybe we can give each other some face to face support!just an idea!

Don't worry, you're not losing your mind just yet! I believe it was Ihurt who is in Chicago. I am also back and forth to Chicago quite a bit if you want someone to chat or visit with just let me know, I don't know anyone else in the area and often have to come alone so my family can keep my daughter for me.

And I've heard wonderful things about psyllium husks for diarrhea, I've been wanting to try it myself but I think it would probably do more harm than good at the moment. My poor bum is quite traumatized, plus I am supposed to be on bowel rest. So not really sure if having solid stools and having to strain would be a good idea when you have active fistulas! (Not that constant diarrhea is any less harmful)... I don't really know. I think they're going to be a pain in the arse no matter what!

One thing I can tell you is that having a diagnosis will help some, so will getting on the right medications, but fistulas are persistent little buggers and will most likely stick around and make you miserable for quite some time. My tools for survival are as follows:
1) Water squirt bottle next to the toilet at all times! Rinse the area after every go.
2) Quality toilet paper! My personal preference is Charmin ultra soft. And dab or blot after rinsing with the squirt bottle, constant wiping makes it so much worse.
3) Epsom Salt baths are a life saver. As many times a day as you can manage. Sitting in my hot sitz bath is the only time I'm not in pain, works wonders for relieving the pressure associated with abscesses.

Hope that helps... if you have any questions or want to chat feel free to send me a PM!

 

[Lulubelle]

I am so sorry you are having such a rough go. The waiting is horrible, isn't it? I think most of us go through a time where we think it is "all in our heads" or if we had a "better attitude" our symptoms would be lessened or disappear. I think that is one of the hardest aspects of Crohn's. The mental aspect seems to be one of the most challenging! It is daunting finding this forum and reading so much information and one's head can explode at times because there is so much to take in, so much in which we can relate, and only so much one can digest at a time. I believe that in time you will feel much comfort coming here and feel the support when you need it most. There is nothing like the support that comes from people who understand exactly what you are going through and KNOW what it is like to be frightened, misunderstood, frustrated and afraid for their future. There is nothing like feeling like a fraud...only to find so many of your fellow Cronnie's feel the same way sometimes. We all get fed up, and many of us feel better for sharing our pent up hurts here. It is far safer to vent here than to shower our loved ones with our inner-most frustrations. At least people here understand your sufferings and will grant you full permission to your feelings. Sometimes lately, I feel so guilty because I am so fatigued, and wonder if some people would rather have my life--sick and all...if they could just be lazy all day. But truthfully, no one would choose this life, would they? My main goal is to find blessing in this, search for meaning for the suffering and attempt to do my best each day...no matter how bad the day is. I fail lots of times. When the docs make mistakes, or the meds aren't right, or I haven't slept in days...I try to find humor of some sort and remember the others who are here who suffer far worse than I do. I hope you settle in and find comfort here. I hope you get answers soon! I know this place has helped many, many people and pray you too, will be helped.

 

[osci]

Sam & AVW, thank you I'm having a barium meal on Thursday (see my other post) and don't really know what to expect or what it will/can show & if it shows all the way through as they X-ray it. I think your right that getting someone to say yes we've found it & here's how we'll treat it is, or this is what we'll try first is all I'm after. I've been reading on here about the biologics, infliximab? Is it that can help heal fistulas but who knows if we can even get that treatment over here in the uk on NHS.. I don't have private medical insurance, a lot of people in the uk don't unless a perk through your job etc.

What worries me is that I'll have this test & then still have to live like this for another few months before I get my results back, I'm going armed with a list of questions on Thursday!

Thanks again for the support guys, it's nice to know I'm not alone, my boyfriend is fab but it's a hard topic to talk to him about in some ways as his mum had Crohns & then died of bowel cancer aged 46 so even though that was about 14 years ago & I never met her I just feel like I shouldn't say too much as it upsets him, and my parents are not much help, had my tests last week & they havnt even phoned to ask how I am or how it went/results.. It's a bit scary doing this alone :-(

 

[osci]

Lulubelle, thank you. I posted at the same time as you I think & didn't see what you wrote till after, yes it's really comforting to find others here that know what I'm going from but also very scary reading what else may lay ahead for me! For me personally I feel better even I arm myself with as much info as I can, that's how I seem to be coping with this so far.

And thank you to whoever suggested Epsom Salts in a bath.. I'm on my phone so I can't flick back to check- but I remember trying that 2 years ago when I first had an abscess & maybe I should try that again, here in the uk we don't seem to have the sitz baths that you can just put your bottom in, atleast not that I've come across anyway.. So I just have to have a hot bath each night.

I'm trying hard to keep working as I've used up all my sick pay this year thanks to fistula op's so fitting work all day, 2 horses which are my escape & how I unwind, well.. There are not enough hours in the day to be sitting in baths as well! I have learnt that baby wipes (wet wipes) are a must & help keep my fistula opening clean while I'm at work.

One question someone might be able to answer for me.. I seem to go from not sleeping at all to the other extreme of sleeping 16 hours straight at a weekend when I finally get so exhausted I can't go on any more- is this pretty typical of CD?

 

[osci]

Hi all, a little update from me. Well i got my test results back, bloods were ok (suppose they wouldn't show up as vitamin deficient as on loads of multivitamins?), flexi sig couldnt find anything nor the random biopsies taken, and the barium follow through meal / xray was clear apart from one area they are unsure about.. about not going to retest at the moment though. Got a long speach about how they are sure there is something there but sometimes these things take years to show up enough to be able to find them etc etc

So where does that leave me? .. another exam under anaesthetic, scrape out what they can and they are aiming to put in another seton, a draining one rather than a cutting one this time. Back to waiting for the op date, worried sick as don't have any more sick pay to take this year, cant afford to pay the rent if i don't get paid.. considering asking if they can put it back to Christmas week or the new year when my sick pay allowance starts over at work. They reckon 4-6 weeks until the op so just waiting for a date and see then what is my best option, got a pre op / anaesthetic assessment next week so that they can check my body can withstand yet another op i guess

Pretty miserable right now, to add insult to injury my boyfriend of 2 years ended things between us 3 weeks ago so i'm now living in a rented flat alone, no bath to lay in (just a shower) and soak away the pain after the op and wondering if i will ever meet Mr Right with all this stuff going on with my rear end

 

[cleuger]

I went undiagnosed for years thinking I had IBS all these years went by I mean more then 10 Not sure exactly how long. It took me being half dead from Anemia a hospital admit, within one week I had a colonoscopy, Barium X-ray and some other scan sorry I cant remember what it was... but got a firm diagnosis in one week. I thought fistulas were a sign of Crohn's. I don't have one but I'm still learning so probably wrong. Bloating, Blood, and Chronic Diarrhea were all my symptoms I had 20+ trips to the bathroom a day. I agree that I would shop for another DR If I had been a stronger person and asked more questions and refused to except just IBS and IM not making light of IBS but this is much worse, then maybe my treatment would have started earlier and it would not have progressed into my rectum. Its the I should haves that gets me. Beat myself up daily over this. I hope you find your answer soon so you can get the treatment you need and deserve.

 

[osci]

Thanks for your reply Cleuger. Yes they agree i have more than IBS but it seems finding it is harder than i thought it would be, seems to be a common thing though. Yes they were convinced Crohns was causing my fistula which wont go away after 4 ops and 2 years of trying At 35 im getting panicky i wont get the chance to have a family of my own, being ill for 2 years has broken up my relationship and starting over a new relationship with a string hanging out my bottom doesnt seem the most romantic and not really a subject you want to bring up is it, maybe its just not meant to be