Undiagnosed Club Support Group

Crohn's Disease Forum

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Hi AutumnKirsten, ginger is pretty decent at treating nausea - you can get it in capsules, you can buy ginger root or pickled ginger, you can get ginger tea and I think even ginger gum or candy. The capsules are what I'd recommend as those seem to be the most effective for me at least (you should be able to buy them at any health food store or vitamin store), or the tea is good too. If you can get to a doctor, ask for Zofran (or the generic version, Ondansetron). That's the best prescription anti-nausea med I've tried. Hang in there! It sounds like your living situation is pretty awful right now and I hope things improve both there and health-wise. Big hugs to you!

Gadget, it sounds to me like seeing a 3rd doctor wouldn't be a bad idea. Sometimes it just takes a few tries before a good doctor comes along. Another colonoscopy would probably be good to consider as well just to get the biopsies - most doctors like to see definitive proof of Crohn's on biopsy, so that might indeed be what it takes. Good luck with whatever you end up doing!
 
hey everyone, I hope you're all doing well and I send hugs if you're not.

Sorry Dusty I was bogged down with a lot of family things in the past few weeks, but they were visits from my sisters and my parents so I really don't mind.
I haven't had many tests since I last posted, but about a week after I did I finally heard back from the GI and had an appointment. I saw Dr. Karen Wong at the U of A, she had ordered a bunch of blood tests (they took 9 vials, this may not be many to some of you, but for me it was kind of scary), the only result she told me about was that my iron was low. I plan on contacting them to find out what the other numbers were, my sister who has crohn's was asking me about them and I think I's like to have copies for myself anyways.

The appointment went well and I have an MRE booked for July 7th, and an upper endoscopy and colonoscopy that I have yet to get dates for.

It was kind of funny though, apparently my sister is famous at the U of A GI clinic. We were in the appointment room and the Dr was asking about my family history, I happened to look behind her and there was a picture on the wall that one of my mom's friends had drawn of my sister, Dr Fedorak, and her favourite nurse Donna. It was really weird and I had to phone her right after to tell her that she's well remembered.

One thing that bugged me a bit at the appointment was that the Dr told me that without the family history that I have they wouldn't be doing much at all to help me. I was quite stunned at the time and even now I have trouble believing that she said it at all. I'm all for honesty and I tend to be kind of a blunt person, but dang.

Also on a side note, how do you guys function when you get a cold or something, I think I caught something that one of the nieces or nephews had and now I feel like I'm dying?
 
Today I went to my first doctor's office and paid the $25 fee to get my complete chart. I spent six hours learning how to read and analyze my medical records and there were so many inaccuracies and so many things that went overlooked that I was appalled and shocked. I knew there was a reason other than his condescending and judgmental attitude that I left his care. He wrote down that I was taking supplements that I was not (I could not afford them; I live on SSI and these supplements were going to cost me at least 1/3 of my check per month, and later tried a free sample and had an adverse reaction so I promptly discontinued), was prescribing supplements that were contraindicated at times, withheld pathology reports (that were still too unspecific, I am trying to order the full, color report from the lab itself), missed important elements on my Prometheus test (was not consistent with IBD, but three gene mutations are present as well as 2/5 of the inflammatory markers and various abnormal serology numbers but I can't interpret exactly what they mean, just that they fall outside the normal control references), allowed me to lose 14.1 lbs total while in his care and didn't even care to look back at those numbers, did not prescribe a proton-pump inhibitor when it was specifically written in my report to take one for two months and I was never given a scrip. These are just a few of the many problems I've found with my records. So I took a composition book and made notes of every error and every significant finding. My current doctor said she could look at it with me on the 27th but that's still a good ways off, so I am getting ready to show it all to a third doctor. I just need to find a good one. May want to get physical copies from my CT scan as well.
 
AutumnKirsten, I'm so glad to hear that the ginger helped! :) Hopefully things are on the upswing!

CharlieB, my immune system definitely has its ups and downs so sometimes a cold will last for weeks. It can be really miserable. I caught the flu at xmas and was coughing for 2 months! So I feel for you. All I can advise you to do is treat it like you would any other cold or virus - stay hydrated, eat some soup, rest as much as you can. You can take Tylenol/acetaminophen as needed, but avoid taking NSAIDs/aspirin/ibuprofen as those can make gut issues worse. Also avoid antibiotics unless it's definitely something bacterial - antibiotics can make gut issues worse too (they can throw off the balance of "good" bacteria in the gut). If it's viral unfortunately you're just going to have to wait it out. If you feel like you're getting too dehydrated or anything like that, go to the ER or a walk in clinic for some IV fluids. Hang in there and feel better soon!

Gadget, that's very good that you got your files and are able to interpret them. With that amount of errors in your file, it's a good thing at any rate that you're no longer being seen by your 1st doctor! Yikes! It definitely sounds like you're doing the right thing, being an empowered patient and taking charge. Good luck with your current doctor and/or the 3rd doctor - please keep us posted as to what happens on the 27th!
 
Thanks Cat-a-Tonic (cool name by the way). Today I got the report from my CT scan from a couple weeks ago and the report wasn't at all what I expected. My scan showed "mural or fold thickening in the proximal jejunal loops". But the interesting part is there's no mention of the ileal inflammation that was previously found. But you'd think they would've been able to see the jejunal inflammation with the Pill Cam, no? Unless it's new. The doctor said the inflammation was too nonspecific in nature to tell, but it was "consistent with a mild enteritis". Like I said, she thought it was infectious in nature, but that doesn't quite match up with the progression and length of time I've been having problems.

I'm going to try to get copies of the actual x-rays in addition to the report. Would the medical center that performed the CT give me those pictures if I request them? All my doctor gave me was the report, not the pictures. Also, is jejunal thickening/inflammation like that characteristic of Crohn's at all? My 2nd doctor who ordered the CT tested me for celiac. Haven't heard back, but I had a celiac biopsy taken during my upper endoscopy that came up negative so I doubt it's celiac. I tried to cut out gluten for a while while symptomatic and it didn't seem to make much of a difference. Anyone else seen these kinds of things on scans?
 
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Gadget, I would think they'd give you the pictures. My GI always gives me my pictures - I just had a flexible sigmoidoscopy last week, and my GI handed me a printout of the pictures before I even left the clinic. It should just be something they have on file and can print for you.

Thickening isn't something the pill cam would have necessarily picked up on - thickening means the bowel wall in that area is literally thicker, but from the inside it might just look normal. Thickening is usually associated with Crohn's, so do keep pursuing answers. Something post-infectious likely wouldn't move around from the TI to the jejunum like that, but Crohn's can affect the entirety of the digestive tract.
 
Gabi!! We missed you! Of course you're okay to come back. How have you been, are you any closer to a diagnosis? I recall that you were really suffering a lot the last few times you were on the forum. Hope you're doing at least a bit better these days?
 
I wanted to share some great news! While talking with my great Aunt today, I discovered that Crohn's, IBS, Colon Cancer, and something where the colon kinks all run in my family. I had asked my own mother this years ago, but she had no clue! So I am ECSTATIC to be able to go to my Primary and fill her in on this news! Hopefully this will help lead to a diagnosis! Hope everyone is having as good of a day as you can! <3
 
Yesterday I went to the clinic that performed my CT scan and paid $20 for a CD of the pictures. I got home, popped the CD in my fiancé's computer, and looked at the photos that showed what they found in my intestine. Not only do I definitely still see something in the ileal area but the upper right and left hand corners of the jejunum are affected (the side that lines up with the ileal inflammation is more affected than the other side). It corresponds with every single pain I feel in my gut. It's been a bit surreal for me because it shows me that there's definitely something out of sorts there and I'm not hysterical. I've been having a hard time coming to terms with everything because this is clearly not the picture I had in my head of what was wrong. It's incredibly hard for me and I don't even know if my current doctor will even hear me out after the written report I made of all the errors in my reports and my concerns...I just hope I didn't waste all those hours compiling information and researching and asking questions here. I'm feeling way worse under all this pressure and definitely showing more symptoms. I've barely eaten much of anything and I might go through another major weight loss because of it all. Still nine days left until my appointment but I'm going to try to find a Crohn's or IBD specialist in my area, have done some digging and have found a possibility nearby. But I'm really feeling different after seeing those pictures. It's been difficult to come to terms with.
 
Autumn, hopefully with the discovery of the family history of these issues, your doctors will take you more seriously and will know what to focus on looking for. Good luck and keep us posted!

Gadget, you didn't waste your time compiling all this data - even if your current doc brushes you off (which she hopefully won't do), if that happens you'll find a new doctor who takes you seriously. Being an empowered patient is never a bad thing, I promise. And it sounds like you've got more pieces to the puzzle - you can correlate your pain to the CT findings now. Even though your last doctor's notes are a mess, the CT results definitely aren't nothing and they shouldn't be able to brush you off given what those images show. Yes, it's true that some doctors will only diagnose based on biopsy results, so you may still have to go through another colonoscopy - but hopefully that will be the last piece to your puzzle and then you can have solid answers and move forward with treatment and start feeling better. And since you're an empowered patient, you'll be familiar with what your treatment options are and can make an informed decision there too. :)

How's everybody else doing? I got the biopsy results back from my flexi sig. Completely normal, of course. GI thinks I'm back in remission and I think I agree - aside from the recent month-long episode of rectal bleeding (which turned out to be from hemorrhoids), I've been feeling pretty well these days. My health was such a rollercoaster the past 6 months or so - labyrinthitis from late Aug - Nov (horrendous vertigo and nausea), then I had the flu from xmas through Feb, and then in March I had the hemorrhoids & bleeding. If my health has actually finally quieted down and hopefully stays quiet for awhile, that would be wonderful!
 
Been very symptomatic lately. Stress and sleep deprivation coming from this entire process and then some is wearing me pretty thin. I'm seeing my GP tomorrow morning to get referred to an IBD specialty clinic; I called the IBD clinic to see if they'd accept my case especially given that I'm in a high-risk group, they said they'd be happy to take a look with a doctor's referral. Will be bringing my scans and endoscopy photos with me as it's been some time since I followed up with my GP.

Thanks for all the support. It's been so difficult and it's good to know I'm not alone.
 
One step forward and one step back here, lol.

2 weeks later I finally got an appointment and a letter with my results.

Appointment is in just 1 week which is very good.

Test results were ones i'd already had aaargh, still nothing about Januarys blood & stool, the latter hasn't been done before so been on edge ever since for that.

But only a week and I can finally get everything, and sort my meds, really want off these horrid iron tablets asap!
 
I think I'll be exiting the undiagnosed club today. Brought in all of my records and my 14-page report I wrote on them including the color copy of my biopsy stain, my diagnostic code was changed on my paperwork and my doctor wants to begin a regimen of Lialda to see how I do, follow-up in two weeks after some blood work. I have to wait a couple days for the insurance to get the authorization from my doctor as to why I need that particular suspension instead of one that is covered by insurance but I'm hoping that won't be too hard, the doctor and pharmacist sounded like they'd be able to work something out. But relief may be in sight for me. The $1.50 I spent at FedEx/Kinko's to print the color copy of the biopsy stain was one of the best $1.50 investments I ever made. Hopefully things will only get better from here but I'm relieved to be getting a more clear diagnosis.
 
Congrats and condolences on the diagnosis, Gadget! I hope the Lialda works well for you. I'm on Lialda myself and it's been quite good to me. Is your inflammation mainly in your colon? Lialda works primarily on the colon and rectum. I seem to mainly have colon involvement (I've tried Pentasa which works more on the small intestine, and that one didn't work as well for me). Lialda does usually take a few weeks to take effect, so give it a bit of time to kick in. It's also a very mild medication and is mainly used to maintain remission, so if you're flaring you may need something stronger in addition to the Lialda. At any rate, good luck! And feel free to check in with us here and let us know how you're doing!
 
It's actually entirely in my small intestine but the focus was the inflammation in the ileum because it's more involved than the jejunum at this point. She told me the suspension wouldn't break down until it reached that last part of the ileum, I actually don't have any colonic inflammation at all, is Lialda typically used for colonic disease? She said it should help me at least a little. I'm just glad she didn't think I needed prednisone right off the bat.
 
Lialda is one of the mesalamine formulations (there are multiple others including Asacol HD, Pentasa, Apriso, and so on). All the mesalamine formulations contain the same medication but have different coatings on them, so they release in different areas of the digestive tract. Pentasa releases in the small intestine, Asacol HD releases in the terminal ileum and colon, Lialda in the colon and rectum. I'm not sure why your doctor would prescribe Lialda as it's almost solely used for colitis, not for small intestine involvement.

From http://www.drugs.com/lialda.html
Lialda is used to treat ulcerative colitis, proctitis, and proctosigmoiditis. Lialda is also used to prevent the symptoms of ulcerative colitis from recurring.
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If it were me, I'd be calling that doctor and asking why she isn't prescribing Pentasa instead as that one is meant for the small intestine. Lialda may help you a bit but it probably won't do much of anything if you have SI but not colon inflammation. It'll just pass through the small intestine and then release it's medicine into the colon which doesn't sound like it's going to do you any good. And maybe that's why your insurance company is questioning it - they're probably also wondering why you were given a colon med when you've got small intestine involvement only!
 
I feel like tearing my hair out here! I had a colonoscopy done 4 weeks ago, had biopsies done and was told my family doctor would have the results in 2-3 weeks and I would have an appointment with a gastro consultant in 3-4 weeks. Neither of these things have happened largely due to the consultant going off on holiday for a few weeks. My work are breathing down my neck asking when I'm coming back, I'm bored to tears at home too afraid to go out incase I'm not near a toilet and I'm due to go on holiday abroad in 5 weeks time which instead of a being a welcome prospect at the moment seems quite daunting. I am so stressed out and fed up at the moment!!
 
Thanks for the heads-up, Cat-a-Tonic. I did a little reading for myself and it does seem silly why I would be prescribed something for colitis when it's obviously jejunitis/ileitis. I called the doctor's office but they're out to lunch so I have to wait 40 minutes to call back. Glad I didn't waste my time and resources getting the wrong meds!

EDIT: Pharmacy called, my prescription was actually changed to Pentasa without my asking. Saves me some extra trouble :)
 
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GlasgowGirl86 said:
I feel like tearing my hair out here! I had a colonoscopy done 4 weeks ago, had biopsies done and was told my family doctor would have the results in 2-3 weeks and I would have an appointment with a gastro consultant in 3-4 weeks. Neither of these things have happened largely due to the consultant going off on holiday for a few weeks. My work are breathing down my neck asking when I'm coming back, I'm bored to tears at home too afraid to go out incase I'm not near a toilet and I'm due to go on holiday abroad in 5 weeks time which instead of a being a welcome prospect at the moment seems quite daunting. I am so stressed out and fed up at the moment!!
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\\\\i am in a very similar situation... i have been off since the end of September, had a colonoscopy in December, only got the report through about 4 weeks ago and then had to wait another 4 weeks for my appointment. In the report, the pathologist had said that the inflammation that he had examined was probably due to the bowel prep I had taken....I had already decided at this point that if I did not get any form of diagnosis or any useful treatment i was asking to be referred to someone else. When I explained that work wanted a diagnosis and a prognosis as to how long this bowel condition will last, as they are moving me to a different office to be nearer toilets that are more accessible. He just said that if they wanted to write to him. he would do a report saying all of my symptoms, diarrhoea, bloody stools, urgency, etc and the I had an Undiagnosed Bowel Condition.

He was quite rude tbh, and it was his suggestion that I see someone else! I still have no idea what to tell work now....
 
Lolli and GlasgowGirl - even if you get a clear Crohn's diagnosis, it will not mean you have a clear prognosis as no one can know when you'll get into remission or how long you'll stay there, or how severe or mild your symptoms will be when you're flaring. This uncertainty goes for a huge number of chronic health conditions, so your employer must allow for some flexibility on the matter.

I would just tell them the truth and take your doctor up on his offer to tell them you have an undiagnosed condition and the adjustments they will need to make for you. Though when I was undiagnosed and at uni, I got en-suite housing on campus and extra-long bathroom breaks during exams, and I didn't even need to tell the uni my symptoms (as that would invade privacy): they asked students with illnesses and disabilities to provide a doctor's letter detailing the adjustments they would need, but not the reasons why they needed them.

I'm not sure if your employers would accept that, but they must accept the need for some flexibility regarding your prognosis, and they must accept you're undiagnosed, because what else can you tell them?

I spent many years with three undiagnosed medical conditions (one is still undiagnosed), and I learnt that you can't rely on getting answers. But don't let anyone discriminate against you just because your condition doesn't have a name yet.
 
I agree with what UnX said, just because your illness doesn't have a name yet doesn't mean it's not a legitimate illness. Here in the US, we have what's called Family Medical Leave (FMLA) - it's basically a law saying you can take time off work without being punished if you need to care for a sick family member or if you're ill yourself with something ongoing/chronic. And it's something you can be covered by even if you're undiagnosed - they just need to know that you have something, even if it doesn't have a name, which is impacting your health in some significant way and is ongoing. I once had my GI fill out my FMLA paperwork, and he put "undiagnosed" down as the name for my condition and it still got approved (I usually have my GP fill out the paperwork, and he's always kind enough to put "IBD/colitis" and that also always gets approved). So here, it's the law that even if you're undiagnosed, you can't be punished for needing extra time off of work. Hopefully it's similar there in the UK.

So Lolli, if it were me, I'd ask the doctor to write that note indicating what your symptoms are and how it's been affecting you. And then start looking around for a better doctor (it sounds like you wanted a 2nd opinion anyway and that this doctor basically told you to look for someone else!).

Gadget, that's good news about the Pentasa! Good luck with it, I hope it helps.
 
@Lolli and GlasgowGirl86: Don't get discouraged. There are definitely some horrible doctors out there (I know, I've been there myself, had to leave my first doctor's care for so many reasons) but there will always be someone out there who will listen. It'll probably take some digging but most doctors have online profile ratings to check their credentials and how other people feel about that particular doctor. But don't give up, absolutely seek that second opinion. Try to gather up all of your records if you can. My diagnosis only took five months but it was by no means easy, I'm in a very high risk group for CD and UC (full-blooded European Jewish) which helped but I had some unusual findings that baffled my doctor at first. What helped was getting my records but especially the biopsy stain. I had to order the color copies special but that's what prompted my doc to change my diagnosis and start me on meds. It's definitely a process but always be persistent, ask questions as much as possible, and definitely don't lose hope. It'll be ok :)
 
Hope everyone is doing as well as they can :) I went to a new primary today and after telling her my new family history and new symptoms (Joint pain and less control of bowels) I got referred to a couple specialist. I am pretty excited on the new progress being made since it has been so hard to get anyone to take me seriously on this issue. Hopefully this is the next step to diagnosis. Thank you all for your support and I appreciate every single one of you.
 
That's great, Autumn! Having a doctor who takes you seriously can sometimes make all the difference. Good luck with the specialists - please keep us posted on how that goes. On that note, are you being referred to a rheumatologist for the joint pains? Arthritis is really common with IBD - I have arthritis myself, in both hips (I'm 35 but some days I feel like I'm 85). If the joint pain is a new symptom for you, I would also suggest asking for a referral to a physical therapist (if that wasn't already one of the referrals). PT helped my joint pains a lot. If you catch it early, treating the joint pain/arthritis with physical therapy by itself can actually be pretty effective - I had like no hip pain at all for 2 years, and when the pain did come back it was still fairly mild and I knew how to treat it with my PT exercises. Anyway, good luck with the specialists - I hope they are as good as your new primary care doc!
 
Thank you for the suggestion Cat! I have not been referred to a rheumatologist or a PT. I believe I will call up there tomorrow and ask about it though. I am thinking she may not have sent that kind of referral yet due to the fact that the joint pain just started a couple months ago. However, it is getting worse daily.
On a side note, does anyone have any suggestions on how to handle the embarassment of an "accident" in public. I had my first one yesterday and the only way I got through it was chanting to myself that I am a warrior till I left the building, but I am still thinking about it today. Yikes.
 
Didn't get anywhere, what a surprise.

Faecal Calprotectin was achingly normal, 10 when 0-60 is considered fine. I did the sample on a week where I had abdo pain every night (sometimes with D sometimes without) too.

Consultant considers that rules out IBD.

Basically the diagnosis is IBS and unexplained IDA & unexplained Low B12 ( not pernicious anaemia apparently)

Going down to 1 iron tablet and 1 B12 tablet a day.

B12 well over 350 now from 127 (200+ normal) so can take a maintenance rather than treatment dose.

No further appointments but I haven't been discharged.

I refused the SBBO test and he was fine with that; may write to get the results from my previous test.

Need to check iron counts every 3 months after my first check I plan to stop iron tablets all together.

I want to know why I nearly died a year ago not just keep taking iron tablets which artificially keeps me high and no answers!! I know it may seem reckless but having had a hb of 6 I know the signs of severe anaemia now I will not get into that awful state again.

Consultant did partially indicate I would get a Pill Cam if I became anaemic again I would certainly push for this.

He thinks the only cause left now is leaking blood vessels in the small bowel, quite possible but unlikely in my view. This would mean a Pill Cam to diagnose and 6-7 hour major op in London apparently.

I asked am I in a loop where I take iron and am fine then stop become anaemic again with no explanation/ further tests and I didn't get a satisfactory answer!

I see my Rheumy soon I may ask them to re-look at auto immune diseases again in the context of what happened in the past year.

It's either that or CD as far as I am concerned but it's bloody proving it!

:voodoo:
 
I am fairly new to this forum, but did want to say I have my first GI appointment on Monday since they could get me in a week and half sooner, for which I am thankful. I have been feeling better lately so I started to incorporate other things into my diet rather than the completely low residue: the result was that I threw up again. Will not be trying that again until after my appointment and testing.
 
I hope your appointment goes well, Quill. Are you hoping you'll be diagnosed at this appointment?

What kinds of low residue foods did you try? I've not heard of vomiting being the main symptom someone gets from eating more residue/fibre than their system can deal with before. It's usually lower digestive system problems like diarrhoea. Did you throw up right after eating the foods?
 
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I am thinking there was a misunderstanding with my post because I probably didn't word things very well... I have always considered "high residue" to mean things like greasy or oily foods, or dairy... things that leave a "coating" or residue on a plate or a glass that doesn't rinse easily with water for example, but I have recently heard things that are high in fiber and "roughage" type of foods being referred to as "high residue"... I actually just finally got a diagnosis... and I definitely have Crohn's... it is affecting my stomach so that is why I vomit from certain things ( because it is affecting areas much higher up in the digestive tract than the typical case). It took 6 years of being seriously ill ( and a life time of less severe symptoms) to finally get a diagnosis, even though all sorts of autoimmune disorders run in my family. This is probably because I respond very differently to certain foods than what is typical. I can eat all the raw fruit and veggies I want, and any high-fiber cereal... in fact the only way to stay well for me is to eat as much of these things as I can. I can eat bread and some pasta in moderation but only if I eat lots of roughage with it. Refined sugar and sweets are a definite no-no. I CANNOT eat any meat, fried foods, and most dairy is out of the question, but a little cottage cheese is ok if it is low fat. White rice is a death sentence for me... binds with everything else in my gut and I cannot pass it, which causes more inflammation. Meat is what makes my stomach bloat up ( from a flat 6-pack to looking 9 months pregnant in 20 minutes or less!) and I will either get really nauseated, or vomit from it. Also, without the fruits and veggies I have a very difficult time passing stools, even if they are semi-solid or watery, and I cant even pass gas without straining and having to sit on the toilet, because of all the mucus and blood that will accompany the gas. So in other words, all I can eat is fruits, veggies, cereal, and a whey protein supplement otherwise I am very sick. I actually feel pretty ok when I stay with the raw fruits and veggies, except I am always starving!
 
Thanks for the support, UnXmas. The low residue food I have been eating include ensure, bread, crackers, dairy (gives me no problems), rice, well cooked canned vegetables, unseasoned poultry, potatoes, and jello.
On Friday, I ate a PB&J sandwich, a couple of trail mix bars, and a small salad (among other low res food) because I was doing so much better. That night I had horrible cramping, and I could not hold anything down on Saturday. I got all clammy, shaky, and weak and knew it was coming on. Phenergan didn't help.
I'm not sure what is going on, but I do look forward to the GI appointment tomorrow. I would be surprised if I receive a diagnosis so soon, but I think it will be another step in the right direction.

Hi Zoey, I feel for your diet. It would be a challenge to get enough nutrition. You said you received a diagnosis of Crohn's: have your symptoms improved since then?
 
For information on low fibre and low residue diets, this is a good guide, though it's not a professional site: http://kelliesfoodtoglow.com/nutrition-and-cancer/help-with-a-low-fibre-diet/
It explains the differences between low fibre and low residue as well.

Zoey -from your post it seems that a low fibre or low residue diet is not helpful for you, as you say you're ok with some high fibre/high residue foods, while some low fibre/low residue foods give you problems. This is unusual for someone with Crohn's or other digestive problems. You might just have to figure out a diet that's unique to you through trial and error. Maybe a dietician could help you work out a diet that's substantial enough to give you the energy you need - and stop you feeling hungry - but with foods that you can tolerate?
 
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Quill - I'm sorry those foods went down so badly! A low residue diet isn't terribly restrictive, but it can be frustrating after a while. It's weird when you find yourself craving fruits and vegetables and whole grains and all the "healthy" things. People often assume that you wouldn't miss the healthy stuff, but I definitely did! Since my last surgery though, I've been managing fibre ok, and have a new appreciation for fruit! Hopefully with the right treatment you will be able to tolerate more foods in future.
 
Zoey - sorry if I missed this in your post, but how are you with nuts, seeds and olive oil or other oils? These foods provide a lot of calories (and I think the "healthy" kind of fat) so would keep you full. Nuts and seeds are high fibre and high residue, so many people with Crohn's find them too hard to digest and are limited to smooth peanut butter, but as high fibre/residue is not your problem, maybe they'd be ok for you? Though make sure you test them very carefully with small amounts first. And I don't think I saw you mention olive oil or similar fats?
 
I do use nuts for to help get enough protein and calories. I am usually ok with walnuts, pecans, almonds, and pistacios as well as sunflower seeds, and peanut and peanut butter in small amounts. Thank you for your posts Unxmas and Quill... they are really informative and it's nice to know someone out there cares and/or understands because at this point everyone I know thinks I can't possibly be that bad, because I don't look that bad and try to stay active. In addition I am a nervous wreck at this point because I have a new doctor who seems really great so far, who thought some things just were not adding up and that there was something very unusual about my case. He pulled up medical records dating way back, and when he looked at some cat scans that were done in E.R. back in 2010 they clearly revealed that I have something called a cecal vulvulous (twisted gut around the area of the cecum), which I was never informed of. In fact, at that time I was told I needed my gall bladder out, but I didn't do it because my "gut feeling" ( excuse the pun) told me NO!!! My new doctor is telling me having my gall bladder out would have possibly made me much worse and it was a good thing I refused surgery for the gall bladder. More recent ultrasounds did reveal a few small gall stones, but my gall bladder was within normal range as far as size and functioning normally. He also explained that the cecal vulvulous can twist, and untwist, causing sever pain that does mimic a gall bladder attack and can twist, cutting off blood supply and causing tissue death which could lead to sepsis and become fatal. This problem is also usually only found in men, and usually at birth, but can happen to women later in life due to pregnancy, a large tumor, or scar tissue from previous surgery... I haven't had any surgeries but I had been pregnant with my youngest child when the pain associated with it started. I am just so upset that I was not informed about this... I went through almost 6 years of this terrible pain that would come and go when I would move certain ways, 6 years of not knowing what was going on and trying to lift weights and practice martial arts thinking it was just a gall stone passing and putting myself in further danger... I could have died from this! I guess even if it is untwisted and not bothering me at the moment I am going to have surgery to remove the area incase it comes back. I am sorry to complain... I just gotta vent!
 
Still really morose.

Hearing "I don't know why you nearly died last year and we won't look any more for now" is just so hard.

Need some space but Mum been home 24/7 past few days (food poisoning, not her fault of course I understand!) and won't be going back to work yet.

Then friend cancelled night out this week, I get precious few of those. We are hoping to do it next week instead but looking doubtful.
 
Sending you support from my part of the world, Zoey. I am really proud of you for keeping up the fight (pun intended). Good job seeking out other opinions. I am sorry for the awful treatment you have received so far. I hope this is a turning point in your care.

Also sending you support, Star, and hope you have something cheerful come along your way.

I had my GI appointment today. The doctor told me he thinks what I am experiencing is virus induced IBS but is baffled as to why I am experiencing this a month out and that "this is the time when IBD shows up and can be started by a virus." Due to another cancellation, I have a upper and lower scope scheduled for this Friday. I asked if he has such strong suspicions why not just wait it out but he wants to rule out anything else "just in case." Any ready tips for the procedure?
 
Quill - I'm not quite sure what you're doctor means by "the time IBD shows up"?

Will you be having sedation for the scopes? If so, they're easy and the worst part will be the laxative prep for the colonoscopy. They're useful tests to have done.
 
StarGirrrrl (hope I got the right number of rrrrs in that ;) ) - I nearly died last year too. I was given a fairly specific answer as to why. I'm not sure if I feel differently about it because I have an explanation. It still feels unreal sometimes, like it was so unlikely that all the factors involved happened as they did. And I know it could happen again, as although my doctors explained to me what happened, they can't prevent it ever happening again.

So I think you're not alone in your uncertainty; I think there must be many people who have had a traumatic experience which has left them feeling afraid because something happened to them that they couldn't control.

Was what happened to you a sudden event? That was what happened to me. I think that can add to feeling out of control, when everything happens so quickly. I think having something like that happen also makes you realise just how dependent you are on doctors. Do you feel like your doctors don't care enough? (I wasn't sure if that's what you're implying in your post.) I was very aware at times how doctors and nurses didn't seem to be acting in ways that recognised the seriousness of the situation. Some did and others didn't. I know this gets said all the time, but I think they really do have to detach themselves from the situation, but some can do this while still demonstrating how seriously they're taking things, and others really can't.

I hope they will keep trying to find answers for you, but if they can't, don't let it stress you too much. Even though no one knew what was happening to you, you didn't die.

Feel free to pm me if you ever want to talk about it.
 
Zoey - does this mean you have a diagnosis now? I'm sorry it took so long, but it must be a huge relief to know the problem can be taken care of now. Finding a good doctor makes all the difference.
 
UnXmas said:
Quill - I'm not quite sure what you're doctor means by "the time IBD shows up"?

Will you be having sedation for the scopes? If so, they're easy and the worst part will be the laxative prep for the colonoscopy. They're useful tests to have done.
Click to expand...

My guess is that many IBD patients get diagnosed in their 20s. Not sure what else it could mean. I will be sedated: I cannot imagine having to go through it otherwise.
 
I've been away awhile!

Zoey, that sounds awful, but does that mean an answer, or partial one?

I have a question! My current GI has given me a script for Lotronex. I read over everything (three times!) and went ahead and asked my pharmacy to order it. I am just so done with the D after 18+ months. But has anyone here tried it? It says not to take it if you've had diverticulitis, which I *have* had, but my GI says it's fine, so long as I'm not CURRENTLY having that. Because obviously they don't want to mask symptoms. But what if I were to get that again? I guess I have more reading to do, but wanted to see what people here had to say, too. I did a quick search of the boards, and overall, it seemed somewhat positive, in that it works well. I just want to be well (don't we all!)
 
Hi everyone, hope you are all doing well. Getting ready to go in for some blood work today, the Pentasa has definitely made a difference about 75-85%. No D which is good but I still get cramps after I eat though not nearly as bad as before. I assume that comes with time as it's only been two weeks. I switched to a low residue diet myself to see if it would help the pain and it has made it more bearable. But white bread is so bad for you (or so they say). I wish I could tolerate whole wheat bread better but perhaps white bread is just better for me. Anyone know what's good for cramping pain wise? I doubt traditional painkillers would help.

Sending my support and well wishes to you all.
 
I'm waiting to be diagnosed I have buscopan colofac cocodamol and oramorph don't completely get rid pain but makes it a bit bearable xx
 
gadget - sometimes we need to remember that the healthy eating advice we hear is aimed at the average, healthy (but overweight) person. It has to be adapted to each individual. And for someone with digestive problems it may have to be changed completely. High fibre just isn't the healthiest food choice for some, but it can be hard to get past all the times we've been told that it is and believe that low residue is much better for you right now. White bread isn't all that unhealthy, it just lacks the fibre of brown bread, and fibre is not good for damaged intestines.
 
Finally got scheduled for the GI. . .they set it up for August. Soonest appointment they had. The thought that this could be something "fixable" and I am just sitting here waiting on an appointment is what upsets me. Anyways, just wanted to check in and see how everyone was. Thoughts are with you all
 
Autumn, can you call the GI's office periodically and see if they have any cancellations so that you could be seen sooner? I feel for you, my GI also tends to have a 3-4 month wait list, I think that's fairly common unfortunately. Is there anything you can do in the meantime? Has your primary care doc run any tests like bloodwork or stool tests? If you have those done before your GI appointment, then you will at least have some things to show the GI. And those tests (particularly the stool tests) can rule out some "fixable" things such as parasites, bacterial infections, etc. Bloodwork can also confirm/rule out things such as thyroid issues (thyroid stuff can sometimes cause IBD-like symptoms). Hang in there! I hope you can get on a cancellation list and be seen sooner than August!
 
Thank you so much Unxmas.

It was all kind of sudden and rushed. I go for an outpatient appointment and get a phone call a few hours later telling me I am dangerously anaemic and must return immediately to the Hospital for a blood transfusion (2 units).

The Drs & Nurses looked after me wonderfully and not one of them failed to exclaim over how low my hb was (6 when 12-15 is normal for a woman and anything under 8 is transfusion time).

I'd been feeling increasingly ill for several months and had no reason to think it was anything other than my worst ever flare up- it was missed by a GP a few days before I was admitted- apparently my racing heart was due to anxiety!- although if i'm honest I had started to think I may need to consult a Dr.

It's just been hard not knowing the cause of that and hearing for now they won't be doing anything more to investigate. They did try and have left things open so all hope isn't lost.

Things have moved again since my last post.

I've been on the lower dose B12 & Iron for 2 weeks now. I was real happy about lowering the doses and was anticipating waiting until my first 3 month check and being interested in where the numbers were.

I'm now getting signs though that I may becoming anaemic again and thinking seriously about seeing a GP next week to request blood tests to check all the levels. I am not alarmed but I am quite concerned and it's not going away.

I did not anticipate this and rather worried that if things are worse after 2 weeks I must be a lot sicker than I realise. Still taking 200mg iron & 50MCG B12 daily which is exactly half of what i've been on since July and November respectively.

I suppose if things are worse though I will push consultant to re-investigate so there is a bright side to the possibility I am getting worse I guess.
 
Hey Cat :) Yes I am at the top of the cancellation list and have had blood work done, but I do think I will talk to my Primary about a stool sample test as well. Anything to speed up the process. As always, thank you for your suggestions!
 
I just need to vent a little bit. I'm having blood in my stool again! :( It's been almost 2 months since I last bled, I thought my internal hemorrhoids were healed up. I guess not though. Also my "good" hip hurts today for some odd reason (both hips have arthritis but one has always felt worse than the other). And I've also been dealing with a lot of fatigue lately. I'm supposed to be in remission, I'm not supposed to be exhausted and in pain and passing blood. Ugh! Just having a bad day and feeling grumpy about it. One of those days where I wish I could just hibernate until a better day comes along.
 
This is a good idea for a thread.

I am 26 new to this, but have had minor symptoms my whole life which have just recently started getting worse. I have always had diarrhea never really gone to the bathroom any other way for as long as I could remember. I do have a Dr apt coming up on the 3rd but it scares me how long it can take to get a diagnosis and how stressful the financial aspect can turn out to be as I am a single mother. My son is 3 and he already shows signs of constant diarrhea as well. Recently there has been a ton of bright red blood and mucus accompanied with my diarrhea along with really bad abdominal pains. I am always freezing cold and have had on and off low grade fevers. Along with breaking out on my body which I have never experienced before. I really hope we can all get some answers soon.
 
Well, guess I'm back.

6-7 months of symptoms (Mar - Sep 2014), first ever experience of all of this to a major degree (minor symptoms since forever).

8-9 months without (Sep - May 2015)

And now I've started getting chronic diarrhoea again, and rectal bleeding. Hopefully it's a blip, and not this, but I guess....

YAY ROUND 2. Last time it got to the stage of bowel incontinence (no realisation that I had pooped, even), stopping eating just because I couldn't take it any more, and a couple of days housebound.

Hopefully this round I get a diagnosis to tell me why my arsehole has turned into a bloody faecal geyser.
 
I'm back from my old post. Had my calproctectin test, came back fine so doctor that diagnoses everybody with IBS put I had IBS. Talking to my doctor, she realised my symptoms were that of stomach ulcers - except I can point 2 places on my left side (just below left rib and a little closer to belly button but lower down) and 1 in mid-ab and 1 on right side. Having to take a PPI to try and heal said 'gastric ulcer', but now I have awful acid reflux, loss of appetite, my mouth is completely ulcering and my bowels have suddenly come back worse! Somebody I know is still adamant that I have crohn's, but I have 3 more weeks of the PPI before they'll probably give me endoscopy to see what is happening - that's if these don't work! Hope we all get a diagnosis soon!!!
 
Hi everyone,
I'm in limbo at the moment. I've had random abdo pain since my late teens and now at 33 I haven't been able to eat a typical days food for close to 6 months. I'm down to 48kg (from my usual 56). My pain has recently focused in my right lower quadrant and becomes swollen. I have recently gotten over months of D but now feel sluggish. I'm on and off anaemic, low calcium, albumin and bit d, my d dimer is elevated, my crp and esr are also elevated and I've had minor, episodic bleeding with BM. I started spotting and my cycle went dodgy so was investigated with pelvic ultrasound but NAD. I've recently had an abdo and pelvic CT which was also NAD. Ive had 4 episodes of chills and rigors in the last 5 weeks, and regularly throw a low grade fever incidentally. Currently my gp has thrown her hands up and suggested that it cold be my 'moods' causing my problems and she has thrown around the term anorexic- but I certainly don't have body image issues and looooove food. Thankfully I have a Gi appointment early next month and just want some answers and a plan. At the moment I am eating low to no fibre which involves a lot of bone broth, custard, yoghurt which gives me some relief.
Thanks or reading, so sorry to read the years of crap that a great deal of you have endured.
 
bushydougie said:
Hi Everyone!
I think most of you know my story already but the brief synopsis is...
I've been ill since January. Started with a fever then turned into d, pain and fatigue. Took a long while to get an appointment with GI. They initially thought CD then had colonoscopy that found nothing. Then GI discussed such things as depression and IBS. Humph!!! Then had CT scan and endoscopy more to exclude anything else than to find CD I believe and they both came back negative. When I next saw the GI I persuaded him to try me on pred. It was a low dose of 20 mg. This worked within 3 days and I almost felt normal again. When I started to taper some symptoms came back so I went back up. When I saw the GI again he was convinced that it is CD as the pred worked so well. He sent me for a small bowel meal. When I had it done the radiologist said there was nothing to see but that he wouldn;t expect to see anything as I'm on pred (ooh I was annoyed!). I am now on 5mg and will finish in 2 days time. I am both excited and nervous as to how I will be.
I have also just started back at work after being off for 8 months. It feels so good to be getting my life back together but I am still desperate to get a diagnosis and know exactly what I'm dealing with. I do sometimes feel that other people just think I'm making stuff up as I don't know for sure whats wrong.
Fingers crossed that the people in this group will soon have more answers
Click to expand...
ur story is same as mine had colonscopy yesterday and not showed anything biopsies taken fed up been.on sick since Feb waiting for appointment for my gi doctor asking if they will try me on something for crohns and see if it helps all symptoms point to crohns
 
I guess Lotronex isn't for me. Took my first dose Tues night. Nice solid bowel movement Weds. Then no bowel movement at all yesterday (which was sort of a relief, but a bit disconcerting). So I skipped last night's dose. And now I'm up 5lbs, horribly bloated, and apparently constipated. Still passing gas, which I think is a good sign? Waiting for GI's office to open in an hour.
 
Wildmtn, passing gas is indeed good - it means you don't have an obstruction. And passing gas should relieve a bit of the bloat too. It sounds like this new med is working a little too well for you - perhaps your GI would be able to prescribe a lower dose, or have you take it every other day? I don't know much about that med so I can't be of much help, but I hope you get some useful information when you call your GI.

Hi Hayz, welcome to the forum! Wow, your GP sounds pretty awful if they're suggesting your "moods" are causing all your symptoms. Are you able to get a new GP? I hope your new GI is good - good luck and keep us posted!

Kellehbeans, Borg, welcome back - sorry you had to join us again and I hope you both get some speedy answers.

Welcome to all the new people and Hi to all the old timers! How's everybody doing today? I'm somewhat better. I've been self-treating with some leftover steroid suppositories from the last time I had blood in my stool. So far so good, I haven't passed any blood for about 24 hours now and I'm feeling better both physically and mentally. I'm looking forward to the long weekend too. I hope everybody is doing okay!
 
Well my PCP moved my apt up to the 29th so hopefully I can get a referral to a GI. I think my flare up is gone tho. The blood hasnt been happening. If I am not in the middle of a flare up will the GI still be able to see the signs of it having been there?
 
Thanks!! To be totally honest I'm really worried about seeing the GI and them not finding anything on scope and being in diagnosis limbo, after reading through all of the histories through the group. It's really easy to obsess over it all, but it is so hard when you have to analyse every mouthful of food and all outgoings- it has become all-consuming. I've just come to accept that I can't push myself like I have been, and when my body tells me I need to rest, I get what I can (being a casual shift worker, navy wife and mother of three under 8yrs).

Having a particularly bad week of fevers, tiredness, right lower pain and swelling and now after a couple of weeks of slow bowel, urgent bloody D. Uuuuhhhhgg.
 
Hi everyone,

I wonder if anyone can help me, doctors aren't doing a lot and I don't know whether I should push to have further investigations done.

Last year I started to get bleeding from the back passage and didn't know what to do, phoned up NHS111 as it was the weekend and they said piles. Went to the doctor and had bloods taken. Well found I've had problems with my kidneys, they had dropped to 30% so was in hospital for that. They started me on a Iv drip of steriods and arranged a endoscopy and a kidney biopsy. Endscopy totally clear not even piles of a fissure, found out I had a autoimmune disease of kudneys (iga) and started me on 60mg of steriods. Brilliant no trouble until I was at 5mg now I'm bleeding again and I have tummy pain / cramps. Constipation and d. Went to doctors got transwered to put parents which I they only used a small cera to have a look. Everything normal so sent me home saying any problems see go. Gone twice to doctors since and got told to go a&e and nothing I don't know that else to do!!! Has anyone else had these problems it seems like they keep missing it! Any comments will be appreciated thank you :)

Kate
 
Hi, I'm a 15 year old crohnie girl from Asia and I was 'diagnosed' when I was 13 of age. However, I had Crohn's since I was 6 years old.
My story is a little more, uhm, complicated. Im from a part of the world where crohns is like really rare so. I went undiagnosed for ages until it got really, really really worse! Like , im-one-second-away-from-dying worse,.
Long story short , I survived with a surgery that had a, um like, 1% survival rate.
In general, it all started with the loss of appetite back when I started Kindergarten and I was always a fussy eater. People find it hard to believe because I was overweight when I was a toddler. The stomach-cramps and depressing pains and of course, the frequent pooping started when I was ten though. They didn't come as often, at first but, weakening like, 'it hurts like hell so i cant move nor breath so stay away please' kinda weak. Hurts like...worse than hell. It's indescribable really. Those flares. When you have them,you just have to 'go'. fast! I went to the toilet over six times per day! including the times I woke up in the middle of the night to just, poop!
So anyways, the symptoms got worse over the years. I was always anemic, practically tired all the time, and was generally weak and way too underweight. Everyone was always like, "You are so thin!" and that is so, SO SO Annoying I tell you. But I got used to that--from hearing that or almost 6 years.
Here's the thing. When I was ten, i used to get the pains really rarely like once a week. but the other symptoms and diarrhea was always, always there! and I got used to the diarrhea, thinking it was just me. I was take abroad and everywhere for the diarrhea problem but they all just passed it off as 'nothing'.
This went on and on. I was taken to numerous doctors, the number being infinite! Im not exaggerating! They all took it as some simple diarrhea, admitted me with IVs and BAM, one week later, I"m home, not at all better!
There are many things that happened so im just summarising my very very long story SO, basically, it was when I was 12 when the symptoms quickly got out of hand. Like I said, IBD Is not common in Asia so no one gave much attention to it so I wasn't given any kinda treatment except IVs when I was in the ER One too many times from excruciating flares.
I went undiagnosed for an eternity. The pains developed so severe it was like, like as if a 399343 ton brick building was going to come out of you with god knows whatelse!
funny thing here. My parents didnt believe me! THey didnt believe my pain! theythought I was acting! I mean, what? I know Crohns is an invisible disease and the "YOu dont look sick" line striked me more than 298240324898 times as well. One thing to say, Low blow. and annoyng as hell.
I was losing weight, my blood was low. I was struggling to study but I always coped up. My immunity was reakishy low and my body represented an almost dead corpse! No joking.
Long story short agaain, I was taken abroad AGAIN< where i was shown to this arrogant doctor who refused my colonoscopies which showed 90 % stricturing! He claimed that i had like, Habitual constipation and it was RIDICULOUS! oh god, and he gave me these laxatives which made me poo like CRAzy and GODDAMN< the pain! The pain doubled over all the way to moon! Imagine, laxatives working its' black magic over your inflmmed, strictured intestines and I was full on screaming murder with the pain. It was..unbearable! I swear to god that's worse that child labour!
I was even given nebulisation, being told I had asthma and was admitted for a month, on steroids--for the asthma! I got kinda better with the steroids so they thought i was fine! ugh.
again, fast forawarding, to 2013, thirteen years old.My family FINALLY believed something! The disease got way out of hand. I was like, dying. I missed more than a half of my classes. I couldnt walk, couldnt talk, couldnt breath, and of course, couldnt eat or drink, at all. I didnt have a diet plan or anything, like i said, no diagnosis. so my family tried to feed me everything, despite my pleas.
Nobody knew, no body understood at all. It was, it was hell.
MY health deteorated to the stage of barely being alive. If i was a half dead corpse before, I was dead then.
believe it or not, at 150 cm (4 feet 9 inches) i was 21 kg (46 pounds!): MY BMI being 9.3. Underweight as hell.
--
I was so weak, so death-like, I spent my days in the hospital, not making any difference, the pain slowly killin me of sorts. Everyone came to see me. PIty in their eyes. Disgusting. BUt i was too busy trying to live to give a damn. I was tying to breath.
FINALLY. After travellng to places, doing ALL tests humanely possible including cancer test and all. (also a colonoscopy with no sedative--that felt like, death. death. like ripping my insides alive). I went to this place, abroad, with my parents, under government help because it was an emergency case. I was dying. The expenses were beyon measure. But, everyone e knew contributed and somehow, we mde it.
I was in a wheelchairall the time. I didnt care about anything else. I didnt care when I was literally on the road, on the pavement with 3938343420 people staring at me, while i was bursting with that exruciating pain. i just didnt care.
So. after weeks in the hospital. I was taken to surgery. I was so weak, so so weak they;d kept me in the hospital just fo my albumin rates to be normal or they couldnt do the surgery. I was on no-food-no-drink diet. Just TPN. and at night, the pain made me unable to sleep. I couldnt sleep. Dad would stay up all night, rubbing my back to ease te pain. He was a great man...
THey gave me Avil, sleeping pills and whatnot but nothing was powerful enough to over come the pain. no medication did anything to stop the pain. it was slowly decreasing what was left of me.
When I Was taken in to the surgery theatre, my mom was holding back tears and dad, he couldnt even look at me. they knew things i didnt but i didnt care. I was...i dont know.The doc told me 'I"d have to wear a J pouch.t bothered me and i got emot
They couldnt even give me anesthesia 'cause i was too weak, so they just gave me this black mask to breath into and i was knocked out.
wheni opened my eyes...god, my insides were gonna BURST with a million babies! Thats what it felt! IT was UNBEARABLE! but i was again knocked out.
apparently, i woke up RIGHT AFTER THE surgery!
----
It was a miracle.
I was a hopeless case. No one told me but my mom knew. The doctors made it CLEAR that the surgery was just 1 % hope for my survival. EVen if i did, I'd be in a ventilator and that'd I'd have a J Pouch.
But Great God, I survived. NO ventilator. no J pouch. They carried anastamosis and resection on me and i was fine.
I am fine now.
I'm okay.
I'm not okay but I"m okay.
Crohn's is forever, I know. BUt I'm proud. to be a crohnie. My scar is my identity. My unity. The symbol of survival.
I have no words to say how thankful i am to the LORd , to my parents. ANd everyone else. CRohn's, has ruined important parts of my life, due to which I'm going throught stuff today BUT, everythng happens for reason and im HAPPY That i had it. I feel special. I went through things no one ever would want to and IM glad God chose me to go through this. we must all be proud!
Now ths isnt my whole story. I wrote a whole book about it. If you want to read it do let me know!!
I'm currently in remission. and I'm on Azathioprine, 100 mg, and this july 18th will be 2nd surgery anniversary! I have fears regarding the medication side effcts, if you could help me out that'd be great. I can now eat what i want and do everything but Im not OKAY> like okay okay. I have occasional moodswings and breathing problems and headaches and depression and stuff. but im doing okay. I;ll deal with it.!

But the point is that,
Hope Matters.
Out of suffering emerged the strongest souls and the most massive characters are ones seared with scars!
 
Dear All - I am here to share my problem with Peri anal abscess and Fistula and my journey towards complete cure of this problem.

It all started with a small lump/bulge on my buttock (Near Peri Anal area). Initially, it was discomfortable to sit down and the pain was worse whenever I sneezed/coughed. I made a mistake of not consulting a doctor on the very first day as I wasn’t comfortable to discuss this matter, but pain was such that I decided to see a doctor on day #3. Doctor gave me a course of antibiotics + pain killers and said he will see me after a week. Very next day I was suppose to drive to my hometown and doctor said that’s fine to do so. Since I was on pain killers+antibiotics, there wasn’t much pain while I was driving the car. Very next day, the lump/bulge got burst during the bowel movement and there was a discharge of blood+pus. In a way it was a relief but I thought it’s better to consult a different doctor. This time I got in touch with as a surgeon who said it’s a Peri-Anal Abscess which has burst open and it needs immediate surgery to drain out the complete pus else this may cause the fistula.

I read lot of blogs and consulted friends and finally decided to get admitted to get this procedure done without further delay.
Surgery for peril-anal abscess was done under local anesthesia and procedure time was around 5-10 mins. Post draining out the pus, they packed the operated site with the antibiotics – Surgery wasn’t painful at all. Doctor was positive about the surgery and said not to worry as the lump was very small (about 3 cm and not very deep) and said it takes about 3-4 weeks to heal the operated site. I was discharged from the hospital very next day.
Doctor just asked me to make sure to avoid constipation and asked me to take duphalac (Stool softener) – 10ml every night and asked me to apply Betadine (Antibacterial cream) on the wound site + 2/3 times of sitz bath evert day.
I made sure I follow all the instructions and waited anxiously for the wound to heal.
There were days when I felt horrible pain while passing the stool and doctor said not to worry and avoid constipation.
Time passed by and there was no sign of healing the wound. I waited approximately 7 weeks and then became restless as there was a slight discharge of pus from the operated site and also terrible pain after the bowel movements.
After one more consultation, doctor asked me to get the MRI done to rule out the possibilities of fistula.
I got the MRI done and the results were not in my favor as it was showing a tract (presence of fistula), doctor said it’s unfortunate and whatever we did initially was the failure – he said I can look for various options to operate the Fistula and to name some were Fistulectomy, Cutting Seton, Fibrin glue injection, etc.. He said me to give some time and take a call on next steps.

I spent time reading lot of blogs and came across new technology called VAAFT and got to know that it’s pain free and also leave no mark on the operated site – I was excited about this option and started looking for the new doctor with VAAFT experience.
Finally I found a doctor in Bangalore, India – Dr. Rajeev Premnath who has the credentials of first surgeon to operate Fistula using VAAFT technique in India. During my consulation with Dr. Rajeev, he asked me about the past details and saw the wound site and asked me to get new scanning done to get better picture of the Fistula as the MRI which I did earlier was not much of a help.
I got the scanning done and met the doctor again – this time he was clear about the problem area and gave me the surgical options to operate the Fistula. In my case, he did not recommend VAAFT as the new technique is used to operate only the complex cases and the 30% is the failure chances. In my case, he recommended Fistulectomy (Cut the fistula open to heal on its own) and said 85% is the success rate and said he will take good care to ensure we avoid failure of the surgery. He asked me to admit as per my convenience and gave me his available dates.

This time, I knew about the exact problem and didn’t waste my time but to get admitted and to believe the doctor. Pre surgery formalities in the hospital was done extremely well and Surgery took about 20 minutes (BTW, I was operated in spinal anesthesia) and very smooth – Doctor spoke to me while he was operating and said it was successful and it’s all about post surgery care matters the most to ensure the operated site gets healed and then we can confirm Fistula has gone completely.

Doctor gave me vitamins + pain killers and asked me to take Sitz bath - 3 times every day . He said it’s all about keeping the wound site clean and asked me to keep the gauze on top of the operated site always to maintain the hygiene of the would site and asked me to meet him every alternative days in the beginning.

Note: I was scared of the pain during bowel movement and to my surprise there was absolutely no pain at all (I was feeling very normal as the pain disappeared completely)

For the first 3-4 days, there was a pus formation around the operated site but doctor said not to worry as every would will discharge pus and that’s common and he said as long as I am not feeling any pain OR swelling, I should be perfectly fine.
After 2 weeks – I could see the results as the wound (Operated site) started healing and discharge was very minimal.
After 4 weeks – I was feeling very normal with good progress towards the healing process with limited discharge from the wound.
After 6 weeks – Discharge had almost stopped and wound was almost covered completely.
After 8 weeks – Doctor gave me the good news stating no need to meet him any further as the FISTULA has been healed completely and I can now live the normal life.

It’s been a month since I last met Dr. Rajeev Premnath, and I am doing completely fine and I must thank the doctor and his staff for taking excellent care of my problem.

My suggestions to all folks who suffer from this problem – Don’t hesitate to meet the doctor – It’s always better you meet a Surgeon and take immediate action. It’s all about post surgery care and you must ensure your eat right, take medicines on time, sitz bath very often (altleast 3 times) and regular consultation with the doctor and I am sure you will be perfectly fine. All the best !!
 
I haven't been diagnosed with Crohn's disease but I think I have it. I am anemic and was diagnosed with anemia when I was pregnant in 2012 though I believe I had it before then. I also believe it is due to Crohn's, which I believe I've had since I was younger. I don't hurt all the time, but I do have flare ups just about every month. They normally last for about 3 days and during that time I can not eat anything because the cramps are so bad. I only cramp on my right side under my ribs. The area is sore to the touch. The only way I can get the cramps to subside for the most part is to make myself vomit :(Then I pretty much don't eat anything for 3 days straight. My stomach even hurts if I drink anything. I normally get really really hungry before I have a flare up. Even after I eat something I still feel like I'm starving. This has been going on since I was about 11 or 12. It stopped for a while and started back up about 3-4 years ago. The whole ordeal has been terrible. I've been to the ER complaining about it but they never do any test. The most they have told me is that I had gas and to go get some gas medicine and go home. Though sometimes I do get gassy I know that it can't just be gas causing this. I've heard that diarrhea is a symptom but I normally am not able to use the bathroom when I am having a flare up. I don't have insurance nor do I have money to see a doctor right now, but I hope I will be able to do something about this soon.:sign0085:
 
Hi all, I've had some kind of progress! The doctor realised I'd been to her 5 times and nothing was helping!

I was prescribed Omezaprole for suspected stomach ulcers, but the only response I had to them was acid reflux which resulted in them putting me on domperidone for sickness! The 'peptic ulcers' however, seem to be in my small intestine and large intestine, if I point to where pain starts. I have now been referred to a GI doctor, will hear back next week and I also got told today - from my 1st blood test (3 months ago now) that I have a low white blood count' eek! Hope everybody else is well and is on their way to diagnosis!
 
Really hoping I don't have to rejoin this club. Once again, doctors are baffled by my unusual presentation and are attempting to dismiss all of this as due to an overactive thyroid just because I have no colitis of any kind. It's true that I have struggled with overactive thyroid for five years periodically, but I had never lost this much weight and I had such an appetite that I went crazy around food and never had actual d from it though I did go more frequently, and the doctor who initially tried to dismiss it as being "just a thyroid problem" later changed her mind after seeing the biopsy. I'm waiting on the new GI referral, the doctors have to look over my records and I'm worried that they won't take it seriously either. Tired of being dismissed as simply hyperthyroid or having an infection when I clearly have abnormalities all throughout my small intestine that aren't going away. Argh so mad.

Edited to add more commentary.
 
My symptoms have come back full swing in the past week. Really bad pain, constant belching, kind of absurd amounts of gas out of any and all ends, having to be near a bathroom all waking hours.

I'm waiting on my MRI results but my doctor claims she's not expecting to find anything. Which essentially puts me back on square one. I'm going to have to have another upper scope because she's afraid they might have "missed something" my previous 3...

I'm back to not being able to eat anything, after almost a month of feeling much better. It's really discouraging. In fact I don't really want to eat because it makes me feel so horrible. I'm pretty sure this illness whatever it is is giving me an eating disorder.
 
Had GI appointment today and am actually relieved he thinks my symptoms are consistent with crohns! He said he could palpate potential thickening in my TI, and booked for scope this Thursday so as much as crohns is not the best diagnosis, I'm dying for a diagnosis and a plan. Fingers crossed all will be revealed this week!! Now... On to the prep.............
 
Izzie said:
My symptoms have come back full swing in the past week. Really bad pain, constant belching, kind of absurd amounts of gas out of any and all ends, having to be near a bathroom all waking hours.

I'm waiting on my MRI results but my doctor claims she's not expecting to find anything. Which essentially puts me back on square one. I'm going to have to have another upper scope because she's afraid they might have "missed something" my previous 3...

I'm back to not being able to eat anything, after almost a month of feeling much better. It's really discouraging. In fact I don't really want to eat because it makes me feel so horrible. I'm pretty sure this illness whatever it is is giving me an eating disorder.
Click to expand...

What on earth does she think they could have missed with three scopes!? I know it can be useful to repeat tests, but only when at least a few months have passed.
 
Hi,

I haven't been around on the board in a long time. Things have been going better for me in the last year, a lot of personal issues have gotten better. Moved and I'm not a care giver for my mother any more. So a lot of stress is gone, and I've managed the IBS/chronic stomach problems fairly well for a while. I've gained a bit of weight also, which is great.

However, the GI symptoms are coming back bad now, and feeling frustrated. I haven't seen a GI Doctor in nearly a year now. Mostly having constipation and lots of trapped gas, which is interfering with my sleep. Probably needing a good cleaning out, and changing my diet to not eat foods that cause gas.

It's been like living in denial about the IBS for a while, thought I could ignore it and pretend it's not there. But it's killing my sleep, waking up in sweats from the gas. It always helped to have a support group, and this was one of the best. Cat is super nice.
 
UnXmas said:
What on earth does she think they could have missed with three scopes!? I know it can be useful to repeat tests, but only when at least a few months have passed.
Click to expand...

I have no idea. I'm bleeding from somewhere, and it's likely an upper-GI bleed of some kind from the looks of it. I've had this before but they've never seen anything but a minor hiatus hernia on scopes. I'm anemic again and everyone just really wants to know where these bleeds are coming from. So do I, but I'm not sure what another scope will do...

Can they see minor bleeds on an MRI? I'm still waiting for my results.

Is it possible to have reoccurring... I don't know, gastritis or something related to a hiatus hernia even though you're on Omeprazole? I don't know how to make sense of what's happening and clearly neither do my doctors.

One thing is for sure - I'm NOT going to let them pin an IBS diagnosis on me. The blood and anemia takes IBS out of the running for sure.

GERD and bile reflux were thought to be a cause for a while but I'm not even sure it's possible for those things to be severe enough to cause bleeding, and being on Omeprazole is seemingly not enough to curb whatever it is that's happening.

Increasingly confused and frustrated...
 
gadgetninjette91 said:
Really hoping I don't have to rejoin this club. Once again, doctors are baffled by my unusual presentation and are attempting to dismiss all of this as due to an overactive thyroid just because I have no colitis of any kind. It's true that I have struggled with overactive thyroid for five years periodically, but I had never lost this much weight and I had such an appetite that I went crazy around food and never had actual d from it though I did go more frequently, and the doctor who initially tried to dismiss it as being "just a thyroid problem" later changed her mind after seeing the biopsy. I'm waiting on the new GI referral, the doctors have to look over my records and I'm worried that they won't take it seriously either. Tired of being dismissed as simply hyperthyroid or having an infection when I clearly have abnormalities all throughout my small intestine that aren't going away. Argh so mad.

Edited to add more commentary.
Click to expand...

In case anyone missed the message, a quick update: thyroid levels were all normal, further proving my point that I should not be dismissed. Crohn's it is...still nervous as heck about seeing my new GI, as I need to be seeing someone who is familiar with and can handle my unusual presentation. It's true that I'm doing better on meds but I know it won't stay that way. Flares are much shorter but still happen, still get that horrible constant pinching feeling under both sides of my rib cage where my jejunum is thickened that sets in an hour after I eat or drink anything and occasional sharp pains, just felt one, in fact. If I were in a complete remission I'd imagine I would not be feeling this pain, but I've achieved partial remission which could change at any moment. Also praying that my old chart from Dr. Dipdip won't show up and throw off my new doc. No clue what my last GI wrote about me on my chart, but she's the one who decided based on my biopsy that I had Crohn's so hopefully it is more accurate. Wish me luck. Moving back in with my mom wasn't easy to begin with and the process of changing doctors is just adding insult to injury.
 
Izzie said:
One thing is for sure - I'm NOT going to let them pin an IBS diagnosis on me. The blood and anemia takes IBS out of the running for sure.
Click to expand...

That definitely sounds like more than IBS. I hate saying I have IBS. They've done almost every test possible for me, and all negative. I'm about to see my GI doctor in a few weeks, and going to ask him about a referral for a pill cam. Hopefully that may show something.
 
Hey guys got some updates. Got blood work from my primary still waiting to hear results but I have a colonoscopy scheduled for july 13th so hope they find out whats wrong for me and for all of you :)
 
Moogle33 said:
Cat is super nice.
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Aww! :D Thanks Moogle! Welcome back!

You mentioned waking up in sweats - I know you know that's not a symptom of IBS (could be a number of other things including infection or IBD). Both the being awoken at night thing and the night sweats are more indicative of IBD than IBS - the theory behind IBS being that it's a brain-gut malfunction, but when the brain goes to sleep so does the gut and that connection is broken, so with IBS you don't get awoken like that. With IBD of course the inflammation doesn't go away when you sleep so it can wake you up with pain, sweats, urge to go to the bathroom, etc. You said you haven't seen a GI in awhile - I presume you're planning to see one soon with this reoccurrence of symptoms?
 
When I was undiagnosed/misdiagnosed, some doctors had no problem with telling me nighttime symptoms could still be IBS. Though later it turns out I don't have IBS. So be prepared for doctors to dismiss the significance of "nocturnal" symptoms, but at the same time remember that it means you probably don't have IBS, no matter what they say!

(Why does the diagnosis of IBS even exist anyway? All it seems to do is get people dismissed without proper care. Or maybe that is only the case for people who end up on this forum, and there are actually people out there who benefit from an IBS diagnosis.)
 
On the subject of nighttime sweats, how much do you think they could appear in IBD w/ anti-depressants to no IBD w/ anti-depressants? Also, waking up "hungry"/in pain?
 
Overwhelmingly frustrated. Got my GI appointment scheduled today and there are two major problems. First of all, he/she cannot see me until September 15th. I have no doubt that I will need to be seen sooner than this. Second of all, I was not referred to an actual gastroenterologist. I was referred to an internist who is in a gastroenterology fellowship until next year. That is not at all what I'm looking for, I need a gastroenterologist who has been at it for at least 10-15 years and who has hopefully come across at least one other case of jejunoileitis. Don't want this noob dismissing me because they're new at this and thinking, "Oh, she doesn't have any colitis, and the jejunum isn't commonly affected...probably an infection." Trying to find someone out of the firm who will take my insurance. Thoroughly frustrated.
 
gadgetninjette - it might not be so bad. There are so many experienced doctors who are completely useless, I don't think the length of their career is the most impotant factor. A doctor who is interested, caring, willing to admit when their own knowledge isn't adequate could be a good doctor even if they're just starting out. There have also been many times when a doctor has referred me on to a more specialised doctor because they recognised my medical problems are too complex. This can waste time but it also meant I ended up seeing doctors who specialised in the areas I most needed.
 
kellehbeans said:
On the subject of nighttime sweats, how much do you think they could appear in IBD w/ anti-depressants to no IBD w/ anti-depressants? Also, waking up "hungry"/in pain?
Click to expand...

I've been on anti-depressant, but I know my gut is full of gas, and it's causing the problems. I think I've alternated into C land, and not passing gas much at all. The last time it was this bad, I did a clean out and slept better. So that's my theory. That may be what I'll do soon if the sleep keeps being crummy.
 
Cat-a-Tonic said:
You said you haven't seen a GI in awhile - I presume you're planning to see one soon with this reoccurrence of symptoms?
Click to expand...

Yeah, I've got an appointment on the 30th. We don't have a clinic in my town that can do a pill cam, so I'd have to ask for a referral in Atlanta or something. A place that'd take my insurance.
 
Moogle33 said:
I've been on anti-depressant, but I know my gut is full of gas, and it's causing the problems. I think I've alternated into C land, and not passing gas much at all. The last time it was this bad, I did a clean out and slept better. So that's my theory. That may be what I'll do soon if the sleep keeps being crummy.
Click to expand...


I've gone from C-land to D-land! I'm going to kill my fibre intake for a few days, not entirely, but just swap back to more simple carbs - I'm sure porridge is making me incredibly gassy! I've cut down on Venlafaxine and it's killing me with it's withdrawal symptoms, but I've been having night time sweats on and off for the past 4 months. (real beginning of a flare started then, but been on the pills for almost a year now). A clean out may the way forward, but I shall see what happens at my first GI appointment.
 
Kellehbeans, how much fiber have you been eating and is it soluble or insoluble? I can do small bits of soluble fiber, but insoluble kills me. Back in February, I had been feeling pretty well for awhile so I decided to try having a bowl of (insoluble) high-fiber whole grain cereal. Dangerous, I know. My experiment failed spectacularly, it turns out that even when I'm doing great I still cannot tolerate insoluble fiber. It set off diarrhea and rectal bleeding - fortunately it turns out the bleeding was from internal hemorrhoids which are now (mostly) healed, but it was not fun and I bled for a month straight before I finally got it under control. So be really careful with fiber. The most (soluble) fiber I can safely do is a small bowl of oatmeal cooked with a lot of water until mushy (I also take a teaspoon of psyllium husks every day).

Moogle, before you jump to the pill cam, have you had bloodwork or stool tests done lately? CRP, ESR, vitamin levels, fecal calprotectin? Start with the basics before you move to the more advanced tests - at least then you'll have a baseline for what's going on. How long has it been since your last set of scopes?
 
I haven't been keeping track, I just swapped to high fibre breads, cereals, etc. I'd been having fybogel twice a day last week, but that's since stopped. It was a mixture and, I haven't actually eaten that much over the weekend or for the past 4 days. So I'm not so sure it's my diet right now - although vodka probably didn't help!! [emoji2]

In massive pain at the moment, I could barely stand up, I couldn't work out if it was trapped wind, but my left-side, dear god! I'm too scared to stand up! But I'm passing horrid stool. I've had red bell peppers - so can't exactly tell if I'm bleeding - but it's changed shape and I'm not entirely sure if I should be worried. I'm sure this horrid, horrid crippling pain is being caused by D though.
 
I had some basic bloodwork done in April but not the CRP, ESR. I had those done about a year ago and were normal. The last Endoscopy and CT Scans were actually about a year ago also. Last colonoscopy was in 2010 I think.
 
UnXmas said:
gadgetninjette - it might not be so bad. There are so many experienced doctors who are completely useless, I don't think the length of their career is the most impotant factor. A doctor who is interested, caring, willing to admit when their own knowledge isn't adequate could be a good doctor even if they're just starting out. There have also been many times when a doctor has referred me on to a more specialised doctor because they recognised my medical problems are too complex. This can waste time but it also meant I ended up seeing doctors who specialised in the areas I most needed.
Click to expand...

I get what you're saying, and I took that into account and thought maybe it might be a good thing for a fellow to see me for the sake of science and research purposes and to familiarize him/her with an unusual presentation such as mine. But I did need to be seen sooner and thankfully was able to get an appointment for today with an excellent GI who takes my insurance who incidentally served the same fellowship 22 years ago. He was super nice and helpful. Brought in my entire folder and he agreed that this Pentasa stuff isn't helping me as much as I need to be helped. He was talking about remicade, azathioprine, 6mp, stuff like that, but he wants me to have another colonoscopy on the 23rd to look at my ileum again which I'm OK with and he took some blood from me today to check for anemia and deficiencies and a food allergy panel just in case (as I do have a known allergy to peanuts). What made me happy the most was that he acknowledged that I was definitely in need of help and he actually asked to borrow the CD with my CT images on it so he could take a good look for himself, I don't think my previous doctor actually looked at the scans, just read the radiology report. My mom came with me to the appointment too which helped, as he had an outside perspective. But I feel very good about what happened today and I'm getting mentally ready for my colonoscopy. Hopefully I can stay out of the undiagnosed club, I probably will, but I'm certainly here to support others who may need help and ask questions.
 
Last edited:
That's great that you found a good doctor so quickly, Gadget! Good luck with the scope, let us know what happens and what medication you decide on. There's lots of info about those medications in the Treatment section of the forum if you haven't already checked it out.

Moogle, if your last c-scope was in 2010, I would wager it's time for another one - particularly with the uptick in symptoms lately. I'd go for that first before asking for a pill cam - for me (and my GI agrees), the ability to take biopsies is vital. Particularly if you end up having something like microscopic colitis which can only be found on biopsy. Good luck!

Kelleh - oh my goodness, girl! High fiber foods, red peppers and vodka!! You are living dangerously for sure. High fiber foods just plain hurt, peppers have skins & seeds that don't always break down which can cause a blockage, and alcohol isn't particularly friendly to an angry gut. Are you feeling better today?
 
Cat - I definitely did! My boyfriend who is a UC'er recommended that I follow the low-residue diet, just to see if it makes me feel better. I guess I do feel better than when I posted last - I couldn't move then! I'm a little sore now - sorry for that - but I've been to the loo 8 times today (I haven't even finished work yet!), mostly small bowel movements, so now I'm starting to think maybe this truly is IBS! However, there is a horrible niggling pain on my left-side that is causing me some discomfort right now. This not knowing business is hard!
 
Kelleh, I believe in a previous post you had mentioned having night sweats and waking up with pain? Those are not IBS symptoms - you do not get night sweats with IBS and IBS does not wake you for any reason, whether it be pain or urgency to "go". And, in theory fiber is supposed to help IBS symptoms - it sounds like fiber just made you feel worse, so there again it sounds like more than IBS to me.

The low residue diet is good but not perfect - the food should cause less symptoms than things like fiber and veggies, but it's not actually going to do anything for the inflammation. It's just meant to be easier to digest and less painful.
 
I don't always have D, only really after the weekend, and my constant going now, but it's not like D. I regard the night sweats on my antidepressants, and I can't explain the pain in the night - it has been soothed with milk before though. Laxatives or any padding out agents make my stomach MUCH worse, pain is horrendous. Fibre seems to make it worse, I can definitely vouch for that. Would more fibre actually help IBS-D though? I honestly can't find much difference between IBS & IBD on the Internet, apart from the bleeding. I have had all blood tests (apart from one that showed low lymphocytes) + a calproctectin stool test come back normal, so this is what makes me think it could be IBS.
 
The thing about IBS is, the definition of it is somewhat vague, there's no real way to diagnose it except to exclude every other possible condition, and some doctors think that IBS isn't even a real thing - rather, that so many other illnesses just get misdiagnosed as IBS because so many (bad/lazy) doctors are so quick to label any type of gastro symptoms as IBS. How many people on the forum were told that they have IBS before they got diagnosed properly? I'd bet a lot of money that the vast majority of people on here were initially diagnosed with IBS before getting a proper diagnosis.

The prevailing thought behind IBS is that it's a mind-gut malfunction - that the brain misfires and mistakenly sends a signal to the gut to cramp. This can cause diarrhea or constipation or alternating between the two, as well as some (not horrible) abdominal pain due to the cramping. And that's basically it, as IBS is typically defined. There is no physical change to the gut with IBS - no inflammation, no ulcers, no bleeding, no scar tissue, no strictures, no granulomas, nothing. So if they find anything at all in your gut that is different physically than a normal, healthy gut - then it's not IBS. IBS does not involve unintentional weight loss, blood in the stool, waking in the night due to pain/urgency, night sweats, nor fevers. Have you had weight loss, blood in the stool, fevers? You've already mentioned night sweats and pain that wakes you, so you've got at least 2 "red flag" symptoms right there.

You also just mentioned horrible pain which is another sign that there's more than IBS going on - IBS supposedly only causes crampy pain. Normal bloodwork doesn't necessarily rule out IBD - things like CRP and ESR can be normal in about 10% of IBD patients (apparently myself included in that 10% since my CRP has only been a teeny bit high one time, otherwise it's always normal). What tests have you had besides bloodwork and calprotectin? Anything like a colonoscopy, upper endoscopy, CT or MRI scan of your abdomen? I think, with your symptoms, it's probably best to continue to pursue testing.
 
That clears it up quite a lot for me, that made more sense than any article ever has for me. Blood in stool - I don't know. I've had red and black specks, but I couldn't tell you if it was blood or not. I've had gushing blood, once. At the moment, anything I wipe is kind of orange-y, but stool itself looks okay-ish. Mucus has come down a lot recently, most of mine seemed to be engulfed in mucus, orange mucus too! Had some blood-stained mucus, but I put that down to a hemmy. I can't say I've lost weight, it's made me binge a hell of a lot more, I'll have a few days where I barely eat a thing with no appetite, then all of a sudden I'm eating everything because my stomach is crying out that it's hungry and I can't ignore it!

I've only just had my doctor tell me she has nothing left to do for me (they considered stomach ulcers, put me on Omezaprole which has now set me off with bad reflux constantly, from the moment I started taking it - I'm off it now though), and has referred me to a GI. However, the GI needs to send me a letter, which I have no hopes to receive until next week. I'm going to push for more testing when I finally get that appointment!
 
Cat gave a very good summary of IBS. I would add though, that in my experiences and what I've read of others', some minor "red flag" symptoms are not enough to deter some doctors determined to diagnose IBS. Some will say nighttime symptoms could still be IBS, severe pain could still be IBS, a fever could be unconnected, blood is from haemorrhoids, etc. And fibre doesn't necessarily help IBS (since IBS is used as the diagnosis of so many different things).

You really need to find a doctor who will help. Some doctors are determined to dismiss everything as IBS even when things suggest otherwise, but there are also doctors who will keep trying to help you even if some tests come back normal. I don't ever stick with a doctor when I'm feeling like I have to prove my illness to them. (Not that that happens often anymore, there are at least some levels of sickness that every doctor must admit is something worse than "stress-related" but it's ridiculous how sick you have to get to reach that point with some doctors.) I stick with doctors where I know I don't have to prove anything for them to accept I need help, and negative test results don't change that.
 
Wow, thank you so much, both of you. I did feel like giving up earlier, not going to lie, but I am most definitely going to push for these tests. One nice out-of-hours doctor did tell me that they try not to do endoscopes because of the risks involved (although I know it's cost too), but he did tell me if things don't improve, then I need to push for these tests as he said something didn't quite sit right.

Just been to the gym, I get a huge stitch in my left lower quadrant now, even after 10 minutes on a cross trainer (even less on a treadmill), which generally signals me that I need to go to the loo. 10 times today is just ridiculous. Not to mention my left knee just aching during as well. Maybe I did some leg presses too heavy or not correct positioning - or even too hard on cross trainer. Hoping it'll settle down tomorrow with how little fibre I've actually eaten today - although I know these things take time.

Edit: now I'm getting the pain I did the other night, where I couldn't move. Can just about move at the moment. The only thing in common is I'd been to gym both times.
 
Cat, I'll ask my doc about another colonoscopy. My big concern is my insurance, making sure the test is covered.

Kellehbeans, I agree about it's hard not knowing. I've probably read too many IBS books, and tried all the various treatments for "IBS", and just feel frustrated. Hope you feel better.
 

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