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RosannaKate said:

It's a crappy time to say the least, pun not intended :p. Either way since starting these tablets i have had no sleep, my mouth is dry, i've got worlds worst headache... the side affects list goes on. I feel like i could.just cry, one issue... i can't! These tablets wont let you get to a point where you can cry! Which isn't good because sometimes you see things clearer afterwards! Oh well, persevering with them.

Hi RosannaKate, I used to be on antidepressants, on and off for over 10 years. The side effects when you first start are not pleasant, but they do wear off in time and really helped me. I was first put on them to help my stomach problems (commonly prescribed for IBS) but I found they really helped my mood too. Having a cure for my stomach problems would have helped, but this was the next best thing for me and gave me the mental strength to push the doctors to help more.

Keep persevering with the pills. Once the side effects do wear off, you can ask the doctor to look at your dose, as you don't want to be taking so many that you don't feel a thing, or to little that everything gets on top on you. My pills just took the edge of things and stop me crying all the time, though I could still cry if the situation called for it.

I too am waiting to have a colonoscopy, which I am dreading. I had one about 12 years ago whilst I had the drugs I remember getting into a bit of a panic about it. But the doctors are used to it and did a good job of calming me down. This time I am going to ask for other tests too, such as an MRI or the pill camera. I think if you are strong and just keep insisting, and make sure the consultant knows how this is affecting your life. Use phrases like "quality of life" and describe how you have problems studying. Ask for a care plan and go in with a long list of questions, and don't leave until they have answered all of them.

Let us know how you get on.
 
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RosannaKate said:
Hi guys just dropping in to give a little update... i know many of you have seen my posts about depression ect. Well my good GP has finally realised it's a problem! I've been diagnosed with severe depression and put on fluoxetine (some of you may know it as Prozac) and basically been put on suicide watch.

It's a crappy time to say the least, pun not intended :p. Either way since starting these tablets i have had no sleep, my mouth is dry, i've got worlds worst headache... the side affects list goes on. I feel like i could.just cry, one issue... i can't! These tablets wont let you get to a point where you can cry! Which isn't good because sometimes you see things clearer afterwards! Oh well, persevering with them.

My stomach is horrendous. I'm fed up of it now. Maybe if they'd pull their fingers out of their backsides i wouldn't need anti-depressants because i wouldn't be depressed!!! Feel like banging my head up a brick wall. I'm back at sixthform but seriously struggling with my stomach and being there! It isn't making things easy! My mums out at the minute but she'll only rant i haven't gone when she gets back. I can't help it that i seel so damn bad i can't get out of bed!

I've got another appointment with the gastro at the end of November, day after my 18th Birthday, so will be considering what tests to push for as i need something. I could do with having a full colonscopy done as they've never got the entire way around but it's too painful and they wont knock me out all together hmmmm. I panic as well so that's not particually useful either! Need to think about it i guess!

Hope everyones ok!! :)
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Hi RosannaKate, I'm no longer undiagnosed, but wanted to reply to you. I was having a terrible time when I was undiagnosed back at school as a teenager. It's definitely true that fixing the cause of depression is infinitely better than trying to stop you feeling depressed whilst the cause is still there!

An official mental health diagnosis can be a bad thing - you may need to watch out for doctors being keen to put any physical symptom you complain of down to a mental problem. However, antidepressants can work wonders if you are lucky enough to find one that is right for you. I take Amitriptyline and couldn't go without it now. Since you've already got the depression diagnosis, stick with the meds; a lot of side effects ease off over time, and even if the fluoxetine doesn't help you now, adjusting the dose or trying a different medication may be more successful, it's difficult to get right but not impossible.

Try to stick with school if you can; the more normal life stuff you have going on besides being ill, the better, you don't want illness to dominate your life unless it absolutely has to. Is your sixth form aware of your health problems (both physical and mental)? They will help you with extended deadlines, even with things like access to toilets during lessons and exams if they know what's going on. Make them make it as easy on you as possible! I wish I'd known about all the help that's available back when I was at school - I didn't discover it until uni.
 
I dunno if im undiagnosed or misdiagnosed my problems started in 93. Previously healthy skinny stomach til the age of 26 sudden mysterious 2 week bout of the most painful headaches culminating in my passing out one morning. When they seemed to have gone the thing that made me pass out was this rupture feeling in my right abdomen like a rush of cold wind. When I came round noticed I had discomfort to breath thru my stomach looking at it realised it had ballooned from flat to distended and has been that way since I had a sigmoid. After which hit a blockage and a diagnosis of ibs and mental health the your imagining it all label over the years.

Have had other investigations which found scarring, diverticular disease, helicobacter, copd, cluster headaches and most recent cerebellum issues. My guts are no better perhaps a lil worse sides feel rigid airy ticklely to breath nauseous. The mental health label was lifted but the ibs tag stuck just not sure whats going on just that they are missing something.
 
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Hi everyone -

I have not been on here for a while as testing - colonoscopy, endoscopy and capsule endoscopy 'ruled out' crohns/IBD, and the GI sent me for gas breath testing for SIBO, fructose and lactose intolerance.

I was sure the gas breath testing was going to come back positive - I had a really bad reaction to the fructose - pain, nausea, d and nearly v- oh and a migraine. I also reacted to the lactose and glucose - but not as badly. - No-one else reacted in that way that was also getting tested - we were all in the same big room and I was the only one pacing and dashing to the bathroom and going green trying not to vomit. - Its bad enough without an audience!

So the test results came back as 'normal' - ie not enough elevation of hydrogen (or no elevation in most cases) And they were really surprised about the reaction to the glucose - no one is supposed to react to the glucose as no enzymes are required to process it- it just goes straight into the blood apparantly. ( mine went straight through - though very novel to see very very 'shiny' 'glistening' d - hard to describe!

So yeah. - Now I head back to my GI dr and say 'now what' - I think I will ask for a scan. Can anyone think or any other tests I should have done? or poss diagnosis ideas? I am pretty sure IBS does not involve vomiting...

On a positive note I have dropped another trousers size...at some stage they are going to have to start trying harder to solve this - I am pretty sure you can't weight a negative number!

I did do a porphyria test today finally - I needed to wait till the breath testing was done to organise it, though it is really rare so the chances are really slim.

Mind you they had never had anyone have a reaction and result like that at the breath testing place either...

Who knows. The dietician suggested I try a round of rifaximin in case there is sibo. Maybe I could convince the GI to try a round of pred after that if it doesn't work. Though the 'lucky dip' approach to medicine is not ideal:(

The rollercoaster continues....

@Roseanna Kate - If your sleeping does not improve with the Prozac I would see if you can change antidepressant - I had the same thing, and the sleep deprivation makes the whole situation worse. I understand that it is a known side effect for the Prozac and can worsen the suicide risk - so be wary, and let someone know if you are thinking about it. There are a lot of different antidepressants and it may take a few tries to get the right one (speaking from experience!) but it is worth it! The not being able to cry, and mouth dryness should resolve as your body adjusts to the med, but may mean that you could adjust your dose - or if you are increasing it still - maybe taper up more slowly. - worth talking to your Dr about. - I would let your Dr know about the headache too - I changed med on one occasion because of the unrelenting headache it caused - and it was worth it then too:)

My thoughts are with you, and I hope that some good stuff happens for you soon:) Hugs:)
 
I'm glad something went right for you!

I had the SIBO test and reacted in the same way to the solution. I was told it was an uncommon reaction but not unheard of.

If you are not getting anywhere with a GI then how about looking into another area of medicine, I would suggest Rheumatology. They tend to look at the body (and possible causes) as a whole, rather than focusing on the guts and scratching their heads when nothing is found.

ellazmeanie welcome to the group, and I am so sorry to hear of your troubles. I realise you must have seen quite a few Drs but perhaps it might be time for a new Dr to get a fresh look at things, and a range of tests so there is something recent. As it's been going on so long for you, and you've been diagnosed with this and that here and there, a comprehensive fresh look may be useful.
 
I've not been where I'm living now that long and actually had 2 good doc's 1 at previous address and 1 here but she left so trying different doc's in the practice as there are a few I do have alot of on going appointments at hospital to attend neurology are taking stuff seriously and I have gi in december so hope they will shed light
 
Aloha. :)

Hopefully I am not in a totally wrong section but I guess it's kinda fitting as I am undiagnosed. Or whatever I can call it.

I am currently in a pretty bad shape, 4 months of "never-ending" pain, constipation and diarrhea. Nausea shows up very often as well and hey, where has my sleep gone? Shows up randomly...

I have been diagnosed with IBS about 5 years ago when I had several problems, pain where the doctors were not able to out a finger on. Had a gastroscopy and after I told the doctor that my sister had been diagnosed with IBS several years ago it was proof to them that it is IBS. It must be! They sent me off prescribing me Xanax.
After I moved to France the pain I had continued plus some phases with diarrhea (usually for a couple of days, then I felt better again). I went to a couple of doctors, everyone of them thinking I am simulating. Then I found my current one, very caring, very nice. He listened, sent me off to get some tests done and tadaaa, those colics were actually a pretty big gallstone.
After the surgery I thought everything will be better again.
But no, it didn't. It got actually worse. First I thought it's the aftermath of the surgery and the anesthesia, my surgeon prescribed some stuff. My diarrhea turned into constipation, so my GP prescribed more things. After 2 months with those problems (sometimes bloody stool [sorry, tmi!], diarrhea constantly swapping with constipation, nausea,...) I thought it could be gluten. I was thinking a lot about times I had pasta or bread and most of the time after having such food I ran to the restroom like 100m world record sprinter. I felt better so my doctor also was sure: It had to be gluten. We decided I will also have it tested at a lab (did not do it until today as I thought I won't eat it anyway and take care to leave out gluten completely). I still had some troubles with my digestion but I thought it's simply a matter of my guts needing some more time to heal. But it got worse and worse again, we changed my diet (I wanted to lose more weight anyway).
It did not help and got worse. In September he sent me off with some blood tests. He wasn't very happy, I was showing an inflammation in my body and I tested positive for ASCA. He was sure we found the reason for my troubles: Crohn's disease.
I went to a specialist this week, after 10 minutes she brushed me off with "It's IBS". So we are back to this one now.
I feel a bit helpless to be honest as I simply don't know what to think. My GP wasn't happy with her result, he thinks 4 months of nonstop pain are not IBS plus the tests so far indicated an IBD.

I have some more tests (plus check for inflammation, which I can't do thanks to a nasty cold) to do. Yesterday it got really bad again, went to the hospital and they brushed me off with IBS as well.

Sorry for writing this wall of text but it's depressing for me to be shuffled around. My sister never had any of those extreme problems I have plus she was diagnosed at the age of 20. Plus last year I had a total burn put but no IBS symptoms at all. And one might think being overly stressed at work and depressive might make IBS worse. Nope, there was nothing. :/
 
Diagnosed - Keep pushing...Don't give up!

Well, I finally have a diagnoses. It is Crohn's. First thing I want to tell you all that are suffering without answers. Don't give up. Find a doctor that will listen to you and your concerns. I know it is frustrating and difficult. I have suffered for years and years.

Going back over my medical history I have probably had it since childhood. Thank goodness it's progression was slow. When I was a about 12 my mom was told my malnutrition was from not eating enough or properly. Well, I come from six kids. We all ate the same (family breakfast and dinners everyday). I had severe constipation and belly pain. Then it turned to diarrhea at about 19. Many doctors and always being told it was IBS. Over the years I have had numerous tests. i had my gallbladder fail (no stones) and removed. I have had them say it was probably SOD type 3. Every time I turned around I felt like I was being written off.

Well, I finally had a doctor listen. I had a CT-entrography that showed wall thickening and inflammation last month. This same area showed up on a regular CT a year ago but this time much worse. This prompted my GI to do a pill cam. Well, the results are in. i have ulcerations throughout my small bowel. The issue is they are all in areas that are not reached by colonoscopoy and upper endoscopics. If my GI had depended on those tests alone I would have never got my diagnoses ....well until my bowel perforates due to the ulcerations.


Don't give up! I started Entocort and will be looking at probably Remicade in the near future.

Hugs all!!!
 
Hi Reflection. Well I'm not sure whether to say congratulations or commiserations. I guess no one wants the diagnosis of Crohn's, but it must be a relief to finally have a diagnosis and know what you are dealing with. I really hope the correct medication works for you and you get some respite from your symptoms.

I just wondered if anyone else on here has tried or trying the FODMAP diet? It's for treating IBS and has shown some promising results in studies (my Dr recommended it). I was told I had IBS about 12 years ago and once I cut out wheat from my diet, my symptoms vastly improved. Now I am back to square one again I wondered if a more restrictive FODMAP diet could help. Does anyone know? Like others on here, I really don't think the extreme symptoms I've been experiencing lately can be solely attributed to IBS, but I wondered if diet could help? Am willing to try anything at this stage!
 
doogle, I basically eat that way. It still did not get better. At the moment I don't eat any raw food, everything must be cooked according to my doctor. It's hard as I love eating salad.
Leaving out gluten helped a tiny bit, then the problems got even worse. But maybe it's an individual thing in that case.
 
doogle said:
Hi Reflection. Well I'm not sure whether to say congratulations or commiserations. I guess no one wants the diagnosis of Crohn's, but it must be a relief to finally have a diagnosis and know what you are dealing with. I really hope the correct medication works for you and you get some respite from your symptoms.

I just wondered if anyone else on here has tried or trying the FODMAP diet? It's for treating IBS and has shown some promising results in studies (my Dr recommended it). I was told I had IBS about 12 years ago and once I cut out wheat from my diet, my symptoms vastly improved. Now I am back to square one again I wondered if a more restrictive FODMAP diet could help. Does anyone know? Like others on here, I really don't think the extreme symptoms I've been experiencing lately can be solely attributed to IBS, but I wondered if diet could help? Am willing to try anything at this stage!
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Doogle, I did do the Low FOD Map diet. It did help some with D but not the pain. Since I don't have gallbladder fatty foods are a huge problem for me. Gluten free didn't help me at all. Onions, garlic etc are triggers for me. Onions, tomatoes etc come out whole. Suffering so many years I learned long ago what increases my pain and D. I can't remember the last time I had a salad or raw veggies. When the doc asked me to try the Low FODmap I did but it wasn't that hard since I had naturally already eliminated many of the items from my diet over the years. I would suggest the diet to anyone to try. It is a great way to figure out which foods cause you problems and which do not.
 
Onions and garlic are indeed a mean (and way too yummy) trigger. Spicy food is also pretty bad for me. I don't even salt my food sometimes.

Tomatoes work a bit better, when removing the insides and the skin and just cook the flesh itself.

PS, I found a nice blog with some fine recipes: againstallgrain.com - maybe you can adapt some of the recipes.

Reflection, the missing gallbladder is really a problem. I don't know how you react on tiny amounts of fat, but I can't digest it properly.
 
wish i could just stop feeling ten types of sick n breath a little cant remember last time i had an undisturbed sleep
 
received a complete breakdown of my neurology appointment and what steps are to be taken and a full range of blood tests one being coeliac have some hospital stuff to come nerve tests brain mri and gastro
 
seems like past substance abuse could be a cause of some of my problems not sure bout the stomach issues tho well off the whole lot now still not smoking roll ups bout a week now no intention to start again rather jump up n down on a pack of cigs now get more satisfaction then smoking one
 
It's been a while, but here's the update on my birthday. yay.
I'm having a laparoscope tonight. My small bowel is obstructed. Only small amounts of fluid pass. Maybe looking at resection tonight, depending on what they find. Vomited badly on Saturday. A few days of food that sat in my gut and had nowhere to go. They say it's in the ileum but kinda hard to pin pint cause. Most likely my surgery from 2005. Excuse the typos. Don't do so great typing on a phone. Hope everyone else is doing ok.
 
I've been having difficulties for over a year and finally went to the Dr. in Feb. because the extreme nausea and stool started turning white (that only lasted a few days, but was enough to get me to the dr.) they did tests on my liver , blood and gallbladder and couldn't find anything. Nothing got better but the dr. didn't know what was wrong, so in Aug. i went back when the nausea just got worse to the point I'd go a day or so and not eat and then I had bloody stool in the past, but it got much worse. Sent me to a GI did endoscopy and colonoscopy, found rectal ulcer, gastroenteritis and duodenitis with not Helcoptor pori (sp?) my nurse practitioner but me on carafate, omeprazole and rowasa. I felt better for the first time in months, then I started having a really bad eye twitch and woke up in the middle of the night with night sweats and stomach cramps for 3 weeks. I went back for a check but my NP moved and the new NP told me I had acid reflux and IBS and put me on levbid and increased my omeprazole. Now the nausea is back the rectal bleeding has occurred a couple times and I have bad neck pains and fatigue.
She said the night sweats and eye pain was not related to anything and my scopes were fine and there was nothing wrong. what do I do next. I don't mind an IBS diagnosis, I just dont think that is what it is. I do not feel better after I go the the bathroom and it doens't explain the other symptoms I have. I had really bad reflux when I was pregnant and I dont' think I have that at all right now, I don't have any of those symptoms, but at night when I sleep I can't lay on my left side for long or I get pain in the left side of my abdomen.
 
had blood on wiping every day over a week now and feel quite rotton in guts rigid down left n right sides and nauseous around liver
 
Hi Amanda, welcome to the forum. Night sweats usually indicate either inflammation or infection, and rectal bleeding does not happen with IBS, so please do keep pursuing further testing. Are you only able to see a NP? If it were me, I'd be looking for a good primary care physician and get a referral to a gastroenterologist (GI) as well. It sounds like your NP is not taking you seriously at all which means it's time to find a new doctor. Can I ask, where in WI are you? Would it be feasible for you to go somewhere like Mayo Clinic in Minnesota?
 
I think I have my diagnosis and it's not crohns. I had adhesions. I had surgery in 2005 for ovarian cancer and all the problems began after that. HOPEFULLY, with snipping them, I have no further problems. Off morphine within hours of keyhole surgery. Started clear liquids, just small sips.yeah I hurt, but the outcome far better than I hoped. Will be off work for a while as I recover. I can only hope this is the result for some of you that are having unknown issues. Granted there's always a chance I get them back, but to know it's not sinister and not chronic is wonderful.
 
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Ellaz, you don't have to suffer alone. This is a great group of people and have been there for me when I was wondering what the hang is wrong. I know it's rough when the world at large may not see you aren't well, but there are many of us that can identify, even if symptoms aren't all the same.
 
wish they would just find out what's wrong not only to put a name to it but to understand if it's at all curable or even manageable there's somewhere I wish to be more then anything and this health stuff is holding me back I'm planning a holiday by ella next year around my birthday for a month or so just that with all the issues from the copd to the gut stuff I'm scared of the flight 15 hour's I think
 
Im not sure if my phone's auto text setting's will actually help with punctuation we will see as I type forget that you can set devices to do it automatically ;)
 
I wish to run at a wall head first,things got me feeling at end of my tether thankfully Ella endures me.
 
ellazmeanie said:
wish they would just find out what's wrong not only to put a name to it but to understand if it's at all curable or even manageable
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I can only assure you that those who are as yet undiagnosed and those whom have recently been diagnosed empathize those sentiments. They don't sympathize - they KNOW how important that is. It's about having understanding and trying to gain some control, even if only modest at times, over the condition. I kind of think that having the answer for having the symptoms is half the battle to enlightenment and not feeling so helpless. Having direction. It's all important.
 
That's part of it to put a name have some kind of understanding to what it is and how to manage it without the clutching at straws,if I can gain that much I aim to use the knowledge to get out of here and to where I long to be.
 
Hello everyone,

I am 39, female and i am currently trying to get diagnosed..This is my story short version . I was diagnosed with fibromyalgia in 2004. From 2006 a couple of times a year i get a horrendous pain in my lower back from my coccyx bone up to midway if my spine. I feel something is squeezing on my spine i also get rectal pressure and pain in that area at the same time. I have bad pain in my stomach always right side and low..sometimes throbbing and sometimes quite sharp it would stop you in your tracks. I get diarrhea 4/5 times a week always in the mornings no blood. I have had several blood tests over the years red count are always normal, white blood count are always elevated. I had a lumbar spine mri lately and that was normal. These episodes are occuring more and lasting longer.. for the past 5 wks i have felt very unwell. I feel my doctor isnt listening and wants to put everything back in the fibro box and i really believe that the way i feel is nothing to do with fibro..any help or advice i would really appreciate...i am seeing different doctor, same practice in the morning. How do i convince him that i need to be tested for Crohn's..i have left surgery so many times feeling like a hypochondriac! I know this isn't the Fibro..Is back pain common for you all? Meant to say also before i started suffering this way had a pilonidal sinus.(2006 2 episodes).in my lumbar mri it said at end of report..(please note a different scanning protocol would be used for the discharging anorectal fistula/sinus) i since had another mri which focused on the anus..report normal..anus normal, no evidence of fistula..confused!!
 
Home already got there a little bit early got seen straight away and was out not long after my actual appointment time stuck sensors in points around my right hand and arm nd sent small electric pulses through them and same on both feet and lower leg's should have results in a week
 
I have full blood tests next week including coaliac feel thing's are finally moving forwards and hope they give results at long last
 
Hi Aurora, I am so sorry to hear of your troubles.

I agree with the advice given in your other thread, that you need to see a GI.

If you are getting nowhere with your family GP then start asking to be referred elsewhere to some kind of specialist like a GI. Or perhaps a Rheumatologist to get a very through assessment on the Fibro diagnosis. Or even both!

GP's are great for day to day illnesses and simple things but those which last longer or are complex they are not so good at.
 
Ok so i had appointment this morning with a different GP same practice.. Feel a bit relieved he did actually listen to me. I explained all my symptoms and he agreed the other doctor was going down the wrong route with me (she wanted to refer me back to my rheumatologist) his opinion was that my problems are coming from by bowel..(he mentioned Crohn's or Diverticulitis) Hallelujah!!! Problem is a long wait here to see a specialist and to have a colonoscopy so in the meantime he prescribed Colofac 135mg (Mebeverine) and aked me to come back to see him in three weeks and to also keep a food diary... Has anyone heard of this medication and do you find it good..also in your opinion is there any foods i should avoid..i am not aware of any specific food apart from onions, chilli or fried food that has an effect on me. I suppose keeping a food diary will help there! I would be delighted to hear any tips and if i ever post in the wrong place plz let me know..so new to all this ..i probably should have posted in this undiagnosed forum first :blush:
 
Cat-a-tonic
I am in the Appleton Green Bay area, I have an appointment with my general Dr. who sent me to the GI specialist, but when at the GI office I've only ever seen NP's there and they don't seem to agree. I am going to ask my general Dr for a new GI or see if she can just tell me what it is. my last NP said I was fine, but things just keep feeling worse, waking in the middle of the night with sharp pain, sores on my tongue and lips just general nausea and feeling horrible. Thanks for the advice, I know someone who went to Mayo and thought they were great, if I don't get any helpful answers tomorrow I will look into it.
 
Somethings hurt more than any illness tear at the fibre of one's whole being I wake from struggling to sleep with a pain in my heart no medication can cure one of my heroes tupac said can't sleep cause all the dirt makes my heart hurt
 
Aurora - ive been on mebeverine, it didn't do much for me, but everyones different, I didn't get ANY side effects from it either, I think things were going through too quick for it to get into my system.
 
I got home from the hospital on Thursday. Apparently, there were two big adhesions stuck to my small bowel. Anyhow, I was wondering how long does it normally take to stop feeling like I have a stone in my gut? Or is that just residual gas from the surgery? I'm probably asking how long is a piece of string. I know this isn't Crohn's, but considering that Crohn's diagnoses and resections often result in adhesions, someone might know. When I took my first bite of pizza last night, I thought I might be sick, but it subsided. I suppose that's normal?
 
Apparently I'm supposed to frequent pub's and night clubs though I don't drink or smoke just for the social value nobody seems to understand I actually feel so crap from morning to night I prefer to be at home and just chat on the net
 
My gi appointment has been put back again first from the 22nd to the 29th of December and now from 29th to the 5th of January also they make my appointments later and later although I've explained over abd over I don't feel comfortable being out at busy times
 
aurora said:
Ok so i had appointment this morning with a different GP same practice.. Feel a bit relieved he did actually listen to me. I explained all my symptoms and he agreed the other doctor was going down the wrong route with me (she wanted to refer me back to my rheumatologist) his opinion was that my problems are coming from by bowel..(he mentioned Crohn's or Diverticulitis) Hallelujah!!! Problem is a long wait here to see a specialist and to have a colonoscopy so in the meantime he prescribed Colofac 135mg (Mebeverine) and aked me to come back to see him in three weeks and to also keep a food diary... Has anyone heard of this medication and do you find it good..also in your opinion is there any foods i should avoid..i am not aware of any specific food apart from onions, chilli or fried food that has an effect on me. I suppose keeping a food diary will help there! I would be delighted to hear any tips and if i ever post in the wrong place plz let me know..so new to all this ..i probably should have posted in this undiagnosed forum first :blush:
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Hi Aurora

I've been on Colofac. Sorry, it didn't help me much, but I've not heard of any bad side effects and I think it is generally quite mild, so don't think it will do any harm taking it and you may find it helps.

I've cut out wheat from my diet and have benefited from that. You may find that you are sent for a blood test to rule out Coeliac disease (it's common practice as symptoms can be similar). However if you have already removed wheat from your diet when you have the blood test, you will not get a positive result. Worryingly, most doctors I've come across don't seem to know this! A dietician told me this and confirmed by the one doctor I've met who actually seemed to know about this type of thing. But if your doctor has asked you to keep a food diary, it may be worth putting a hold on ruling food out yet as the food diary will give you a better idea as to what food triggers you are sensitive to.

Glad to hear you have found a sympathetic Dr, and don't forget, you can ask for your own referral to a specialist, you don't have to just see who you are sent to (though usually this is best as the consultant will be at least local).
 
Just wondered, does anyone else get joint pains? My stomach symptoms seem so much better than last month, but now my joints are really painful! Not sure if this is something different or all related.

I'm off to see the consultant next week so obviously I am feeling much better so she thinks I am just wasting her time. Still going to press her for answers and hoping she will take me seriously, I just really want to know what happened and how to stop it happening again.

ellazmeanie, hang in there! Don't let people make you feel bad about not going out, taking care and being kind to yourself is more important. Enjoy the small victories. Many of us are going through the same thing and can sympathise, even if can't give any answers.
 
Just annoying when people say get a life didn't realise only some people have one thought if you're born into the world and breath that's life enough irrelevant of what you're doing
 
Doogle - I get joint pain! Some days I can't actually walk because the pain in my hips is so intense. I would say its all related. Mine is.

Thanks for all your support with the depression stuff guys, just trying to persevere. I see my doctor next week so might ask if we can try something else as my headache is just getting worse. Well i'll see what he says!!

I have another appointment on 12th November with my GI. Not that it will help in any way shape or form as he's just useless. He's trying to diagnose me with a non coeliac gluten intolerance... I decided to google him the other day and he's a flipping specialist in non coeliac gluten intolerances... no wonder why he's dismissing and ignoring any possibility of anything else! He's doing my head in! If he's as dreadful this time i'm going straight back to my GP to ask for a referral to someone who doesn't just try to diagnose their specialism and actually looks at the bigger picture!!

Ellazmeanie - You'll find that with the NHS that they will move your appointments around, I know this may sound a bit unfair but take what your given, at whatever time of day it is, you may want it to be at a different time but just accept that there is strain on the NHS and your lucky to have an appointment that soon! I've had to wait 6-12 months for most appointments if not longer and they just kept getting put back again and again! I'm currently waiting to see a cardiologist, my original appointment was 1st October (already waited 5 months), they then moved it to 16th October and now they've moved it to 12th February!! Just take what you get and suck it up is my opinion with the NHS. There is no point in keeping phoning to rearrange as the time of day isn't the best, just go with it and accept that they see you as soon as they can rather than rearranging to get a different time and waiting weeks/months for it. Whether or not you feel comfortable being out at those times is something your going to have to get used to anyway as this could be a long term thing. You just have to get used to the fact that you have to do it even when you feel dreadful and it's busy. I've had this for nearly 3 years with no diagnosis, you have to push yourself sometimes and especially with the NHS appointment systems, you really have to push yourself a lot unfortunately!
Hugs x

Hope everyone is well!!
 
I wish it was that simple but there is no way I am travelling on public transport at the busiest parts of the day I don't feel comfortable with it at all most work round it the mri scan department will have to also
 
Hey Cat-a-Tonic,
How are you doing. I sure miss your terrific posts on this thread. Are you doing Ok? Is the dizziness getting any better? I had that condition as well-- it took several months before the symptoms went away. I didn't need any physio for it, but I know a few people who found the physio exs cleared it right up. I hope that is the case for you.:hug:
P.S. Were you able to go out for Halloween in a home made costume like you like to do?
 
akiva said:
Aurora - ive been on mebeverine, it didn't do much for me, but everyones different, I didn't get ANY side effects from it either, I think things were going through too quick for it to get into my system.
Click to expand...

Hi Akiva..im on it since Thursday not noticing much difference to be honest..i did think my stomach had gone down a bit but pain is the same...today stomach is as swollen as ever and i have no appetite whats so ever
 
Hi Everyone,

I am new to the forum, however I can relate to your pain and frustration. I was finally diagnosed with Crohn's disease in June 2014. I had been sick for 12 years. I had a hysterectomy (2007) and a colectomy(2010) (due to chronic constipation) and nothing relieved the pain. Even though they removed my large intestine-which went horribly wrong. They ended up cutting my small intestine and sewed me up without realizing it. 2 days later I had an ileostemy bag and had gone septic. Near death experience-8 month of recovery-still in pain.
I have ended up in the ER countless times, this summer I went from severe pain and was released within a few hours. The doctors were incredibly insensitive and told me I had gastritus. The frustration is unbearable. It does make you think you are going crazy. I finally saw a new GI doctor who did and up and down scope of my insides. Turns out I had Crohns and probably have for the last 12 years. Finally someone put a diagnosis to my insanity.

I wish I could tell you it is better now that I know. The doctors are still incredibly condescending and still continue saying "how shocked he was with my symptoms that I actually have Crohn's disease."

I have had a bad flare up since June and the intensity comes and goes. I am terrified to eat because the pain that will follow. I have a high stress job that contributes to my exhaustion and two amazing kids that just don't understand why I never feel good. I got divorced 3 years because of the stress of my sickness and not being able to get a diagnosis made my family and friends believe I was completely insane.

I feel for all of you. My best advice is to continue to see the doctors and insist they help you. Eventually you will find one that will listen and make you feel like you are not insane.
I have found being on this forum has really helped. Just try to keep your spirits up, enjoy the good days and know the bad days have to end eventually, even if it's only for a short period of time.
P.S.I am still not sold on any meds. The only thing I take is a nausea pill to stop from vomiting. I am not sure if that's a smart decision or incredibly stupid:(
 
I can push myself for most everything I cant endure for want of trying packed transport or public buildings feeling the way I feel I never used to be this bad until pretty recently,I feel so sickly the breathlessness the dizziness nausea the balance issues the breathing discomfort from the distended abdomen I get in a state of panic in crowd's and even quiet times I only sit at back of the bus on the top deck.I would gladly walk if the hospital we're near by.
 
Feel quite sick today all over from head guts even feet stools smell been asleep all day but don't feel much better on waking
 
Apologies in advance for the following post but I need to get it out of my system (my mum has already had the first wave) and I know you guys will understand...
ARGH!!! So, I have been back on steroids for 7 weeks and had follow up with my GI today. He is normally brilliant and is the only dr I have found who is willing to treat me despite having no fixed diagnosis, however today (for the second time) has being particularly useless, condescending and very dismissive. At no point did he ask me about how I was feeling symptom wise and had no record of giving me the budesonide (entocort) - I had to make a point of saying how I am (i.e. better than pre steroids but still symptomatic) and tell him that I was on steroids, to which he responding 'well its only budesonide'. He wanted to stop one of the drugs I know is helping, and when I questioned this (because I am still having significant symptoms and it seems odd to stop drugs whilst I'm not in any state of remission) he said 'well what would like to stop'. I pointed out that I would LOVE to stop EVERYTHING, but that it probably isn't wise to do that, he very abruptly said 'well lets leave it a month and then have a discussion about it'. Alongside GI symptoms, my joints have become more troublesome (we tried diclofenac previously which we think has triggered this mini flare) and he said 'nothing I can do, you wont take diclofenac and you are taking sulfasalazine' (which is the drug he wanted to stop!) - once again I questioned this as the arthropathy is troublesome to the point that I have constant pain and functionality is reduced, and he replied 'there is nothing I can do' - no referral to rheumatology, no apology, no suggestion of things that might help (such as NSAID cream or TENS which I use but he doesnt know that). Basically I was made to feel like he thinks I am over playing my symptoms - he refused to do bloods but has ordered a faecal calprotectin, with the rationale that 'we can play with drugs once we know what that is'. This is very frustrating as I know it will be normal (my GI symptoms are predominately upper GI and it is always normal even when my bloods are very much not) and it wont show the inflammation in my joints causing problems. It will, however, allow him to say 'there is no inflammation therefore you dont need x drugs', and I will have no way to argue the point. I understand that drugs can cause side effects (which might be making me ill) and if there is no lower GI inflammation then lower GI drugs are no use, but some of those drugs are keeping upper GI inflammation and joint inflammation under control. I feel completely deflated, the one person I have been able to turn to now isnt listening and is treating me like I am a hypochondriac but without the decency of saying that - if you think I am making it up, tell me. If you think it is psychological, tell me and we will explore those options. If you think it is something else, then lets explore that too. BUT don't just dismiss me (like everyone else has) - all that happens is that I become more and more unwell and end up in hospital - and that is no fun for anyone (let alone that I have been told if I go off sick again I will lose my job). Sorry for the rant - I simply don't know what else to do, have already pilled it on my mum, and know that you guys know what the brick wall feels like!

Someone was asking about FODMAPS (sorry cant remember who) - I did this for 6 months and it didn't help at all, but I have spoken to someone who has done it with good effect, so fingers crossed it helps you. It is really quite tough, and can be very bland and repetitive but there are some things to make it better - I used a lot of chives to give flavour meringue nests for something sweet and there are some 'free from' things that are FODMAP friendly that are nice (not the bread, the bread is wrongity wrong) so worth trying things to find what you enjoy.
 
Hi Happy, thanks for checking in on me. No, I was not able to go out or make a Halloween costume this year - we decided to take a year off and will hopefully get back to costuming next Halloween. The dizziness is slooooowly improving, I would say I'm about 90% better at this point and am still debating whether or not to do the physical therapy thing for it (my appt is Nov 17th but I may cancel as I am doing a little better). Mostly the dizziness hits me when it's dark, like if I get up in the night to use the bathroom. At one point I was walking through a tunnel near the park and the dizziness got quite bad then. And sometimes walking up the stairs from my basement makes it get bad again. But mostly, I'm functional. I can work and drive and exercise. I'm fairly exhausted most days though and I think that's still due to the dizziness - my brain has to work overtime to figure out where my body is in space and how to keep my balance, so that makes me feel physically exhausted. So, I'm not better yet, but getting there I think. It's been just over 2 months now.

Amanda74, I'm originally from Oshkosh so I'm familiar with the area you're in, although I don't have any recommendation of doctors in that area as I didn't get sick until after I'd been living in Madison for quite some time. It does sound like Mayo is promising so I hope you get to be seen there and/or I hope you can get a GI rather than an NP in your area. Good luck and keep us posted!

And for those asking about joint pain, yes, I get it too, and also primarily in my hips (to a lesser extent in my lower back, knees, elbows, etc - when I'm flaring basically all my large joints hurt but my hips will hurt even when my guts are quiet). I've been to my GP as well as a rheumatologist about it. The rheumy was basically an idiot although he said that maybe I have arthritis of the sacro-iliac joints. My GP isn't a specialist but he thinks I have arthritis in my hips as well, but can't say for sure what type or anything like that. So, in a nutshell, I probably have arthritis but don't know much more than that. I did go to physical therapy for it a few years ago and that helped for awhile while my guts were in remission. For the past 2 winters, though, my hips ache terribly whenever it snows. I'm definitely not looking forward to this coming winter!
 
Hi cat,
Thanks for the update. Good to hear from you. Glad things are improving for you. Hope you get to 100% no dizziness soon.
 
So a bit of an update...

I have managed to wean myself off the doxycycline. I have a very limited diet, and am usually in pain and hovering near a toilet. But not actually always on the toilet or vomiting, so that is a start:)

I went to a gluten free and allergy show while I was staying at my Mums house after the gas breath testing, and one of the speakers in particular was really interesting. (the all were actually - talking about IBS vs Allergy, FODMAP diets and food intolerance, a baker talking about GF baking tips and tricks, and the last one was a clinical dietician - no idea what they would be called overseas! She has degree, masters and post graduate studies in human biology, dietetic science and is also a qualified high school teacher. She spoke about the importance of vitamins and minerals in the body, about the hit and miss approach of the 'lucky dip' from the health food shop (choosing a vit/mineral without scientific reason and product quality) , also about the importance of easily digestable supplements - especially in people with absorbtion issues, and the interaction between vit/minerals and prescription medicines and each other.

I was blown away. - in a good way:) I talked with her after the lecture, and she said that she could see me before she flew home the next day. - The appointment was amasing - she is putting a programme together for me to wean me back onto food slowly, so we can see where the actual intolerances are - rather than reacting to everything, and is writing a letter to my GP requesting a vitamin and mineral profile to check exactly what I am short in. (Much better than the current situation where I google stuff and see if the nurse will test me for it!)She also noted that the FODMAP diet was kind of working, but not properly as I was not absorbing anything really - aparrantly glucose should be easily absorbed and does not need any enzymes at all - so we shall see.

I also saw my GI, and he was kind of helpful. but I was soooo glad that I have seen the other lady first. The GI said that he would refer my for a special gallbladder scan, and it would probably be in the new year. He also suggested I eat yoghurt for probiotics, and if I keep losing weight we could look at 'a liquid food supplement that we use in people like cancer patients' - Great???!!! - I asked about multivitamins and he suggested that the health food shop or pharmacist could help me with that. He also said I need to keep eating what I can at the moment, and keep trying stuff - though nothing more on how to!

He also said that ' I really only get to see the worst of the IBS patients, but you are the worst of even those that I have seen' Hmmmm

It was kind of nice to have the validation that I am not well (though mentioning the food supplementation (he mentioned ensure and boost) and relating it to cancer patients was a bit concerning - surely if we are getting to that point we should do something now, not just wait?)

Anyway - I will have the gallbladder scan and start on the programme reccomended by the clinical dietician - she said it would include a nutrient powder as part of a smoothie eventually, and I figure that her way is what the GI suggested - just more organised and logical:)

So I am happy there is a plan. But I am unhappy that I cannot eat sugar or fruit or veges, and not much fat. I can eat lettuce, tomato and a small amount of avocado. Meat and fish, and a small amount of carbs. not exactly 'nourishing'

I did read a phrase somewhere that I liked - 'ask yourself before you eat something - will this nourish my body?" - (By the way I am sure chocolate is nourishing for the mind!)

Does anyone know what a clinical dietician would be called overseas? - may be an option to help some others in the meantime and/or once they get diagnosis...
 
gotumtum - I am glad you have made some progress, and I hope that it is of some value for you and you start to feel better soon. The ensure drinks are given to loads of different groups of people at risk of malnutrition (here in the UK anyway) so try not to get too worried about them being given to cancer patients. I found the juice ones to be foul, but I have been to many a patient who loves the milkshake ones (which are lactose free) - I hope you find ones you get on with. If you do end up with them, then try freezing them into ice cubes or lollies, or watering them down (with lemonade, juice, water etc) - that often helps. Oh and I agree chocolate is most nutritional for the mind!

Cat-a-tonic - glad things are slowly improving, hope they get better soon.

ellazmeanie - sorry you are feeling so unwell, I hope you feel better soon.

apologies again for my rant yesterday! still frustrated but feeling less enraged!

Hope everyone is coping ok and have a lovely day x
 
Oh man, the NHS are trying to kill me for sure! 10 weeks since I was told there wa s a high probability I have cancer and nothing. 4 weeks since they I attended for neck biopsy and they didn't do it and I've heard nothing. Luckily my private health insurance have covered me to see haematologist and now upper GI surgeon. They have preapproved me for all bloods, biopsies and consultations, which is a huge relief. It's 1:10am here and I'm up in agony. I've had dihydrocodeine and paracetamol and it hasn't helped, and it's right in the area of the biggest node. Husband has started a new job and gets up at 5am so can't ask him to take me to hospital. Ohhhh the dilemmas us sick people have!

Interestingly both haematologists have said I most likely have IBD, and it's down as presumed inflammatory bowel disease on the letters now as a diagnosis.

I don't know if anyone will remember my GI sending some pretty hostile letter to my GP about me. Well I happened to have a clinic consultation and we erm discussed this. He was squirming for sure! And went a very interesting shade of scarlet.

How is everyone?
 
Hello I'm trying to at least not sit feeling unhappy,I realised that I actually don't have much to feel unhappy about I have the most wonderful partner in Ella I could wish for she brings nothing but smiles and laughter to my face and I her.I also have a very good friend who I realised I've treated like shit excuse the pun,the only thing bad going on is my health but the relationships are worth more than any riches so as long as I go to sleep and wake each day remembering that life's not so bad I'm quite lucky ;)
 
Isgs - sorry to hear you are having such a rough time of it, I really hope you get some answers soon - I know they are not necessarily answers you want but answers will allow you to move forward towards treatment and management. Eeek, I bet watching him squirm was a nice feeling, even if it is only a small consolation. Thoughts and love.
 
Hi. I'd like to share my story to see if anyone can offer any advice or thought.
I've has about 3 bouts of the stomach flu in the past year. And in between each one I wasn't feeling very healthy. I first started with a little pain (very very minimal) and with my last gastroentiritis I now have pain around my belly button (very little pain though...) and pain on my left side of my lower abdomen. I've also had pain on my upper right side (under my ribs) all this pain I have for the most part is minimal... I also go to the bathroom quite a bit. It's never really watery diarrhea ( sry if too much info) usually it's loose and foul smelling.. Sometimes thin... Other times normal ish. Usually it is yellow though. Well.... I've had an endoscopy (which was pretty normal just gastritis and a small hiatal hernia) and I havent gotten a colonoscopy yet... (i had a barium xray but that was months ago and normal... Before my last stomach flu which was really when I've started having more probs).... I just wanna know if I could have crohns disease? I never get fever or bloody stools... Do my symptoms sound like Crohns or more like IBS? Thanks!
 
An0chick2 - welcome, sorry to hear you are feeling unwell. Have you been checked for H-pylori? Its a bacterial infection that causes recurrent or chronic gastritis or gastroenteritis and might explain your symptoms. There are many gastro problems that might cause your symptoms, one of which is Crohns, and it is good that you seem to be being investigated. Have you had bloods and any other scans? Crohns tends to be lower GI symptoms (and yours seem to be more upper GI is that right?) but it can affect any part of your gastro system so it is possible - I have a mix of symptoms, mainly upper GI and whilst I don't have a diagnosis I am being treated as possible IBD. IBS is a lower GI problem too, but can get referred pain and it might be something causing your upper symptoms and IBS causing the lower ones - if that makes sense. I hope you get some relief and some answers soon, ask any questions, rant if you need to, and keep us updated.
 
I hate this whatever it is my guts and side's feel so rigid and hard I can't breath comfortable at all not only that they hurt a lot more lately,not a great pain more of a dull ache and nauseous a pain I had in my right arm and shoulder is now in my left arm also.Behind my eyes and face feel putrid as do my guts and lastnight that smell when I go to the loo I was tasting in my mouth after belching from the middle of my abdomen I'm tired of feeling like this.I can't quite remember when it was the last time I didn't feel too bad only thing that lifts my spirits is long phone calls with Ella don't know what I'd do without her.
 
Madmouse thanks you SO much for your reply. Bc I dont know anyone with IBS or Crohns its very frustrating and its nice to talk to someone who is going through the same things. I've had an endoscopy and blood work done.. All came back relatively normal.. (Just some acid reflux and gastritis and small hiatal hernia) I've also had a HiDA scan.. It showed I had a little bit of a fatty liver which I found odd since I'm more underweight.. But other than that I had a barium xray last year which was also normal again just acid reflux... But my symptoms seemed to have worsened since then so idk if maybe I should request another one. I had a colonoscopy scheduled but honestly i was too scared to have it done.. ): so i canceled the day before. And sorry to answer your question I was tested for H Pylori and my doctor said the test came back inconclusve so I could potentially have it so he gave me antiobiotics for it which did make me feel better for a while but then i started feeling sucky again... Im also curious to see if maybe I have SIBO...
 
an0chick2 - Because your tests are normal now, doesn't mean they will be normal in the future. And no test is 100% accurate, I've learned this the hard way over the past few years. Even and endoscopy and colonoscopy doesn't rule out crohns because it can hide in the 24 feet of small bowel! A good place to start would be a faecal calprotectin stool test which is an easy (if a little gross) test to do but it shows any inflammation in the gut. Not diagnostic of anything but does say if there is inflammation there and they might take you a little more seriously. For what it's worth my calprotectin only went positive after 5 years of symptoms!

Make sure you find a doctor who you feel comfortable with, and who is taking your symptoms seriously.

Pain on the upper right could be something gallbladder/liver/pancreas related. Fatty liver is often regarded as a non significant finding but have they tested your liver enzymes? Fatty liver is associated with autoimmune disease.

Hope you are ok!
 
Headache that won't go away since Sunday morning guts ache heart aches if I never had Ella I would feel a lot more worthless
 
Isgs It sucks when doctors cant give you a proper diagnosis when you're telling them you feel like crap. I'm sorry for your diagnosis but at least now you can have a plan set into place about what you need to do to start feeling better and hopefully achieve remission. My pcp doesn't really think I have Crohns... Well bc i dont feel bad ALLL the time or every day... Even though idk if thats a tell tell sign of Crohns but I have a bit of health anxiety and I'm just worried it might be... Even though lately I think maybe I might have SiBO... Bc I have so much belching which was never an issue for me before and bc I've probably been on about 10 antibiotics in the past 1 1/2 years. (For H.Pylori, for strep throat, tonsillitis, UTI.... ): ) i think maybe my gut flora is a complete mess... I cant gain weight... I think i cant digest fat.... Bc my stools are soo foul smelling and greasy (sry if too much info) im just sooo tired of feeeling sick and in pain .., even if its not everyday... And i want to goback to being able to eat whatever i want ... I miss having pizza... I miss eating hamburgers. Sry abt the rant... I just want the life i had 1 1/2 yrs ago..
 
I'm Undiagnosed...

I've been suffering from GI issues since I was a teen. I've been told I have IBS and have had a history of upper GI issues in my stomach. In 2007, I underwent an upper endoscopy and they found several ulcers and scaring in my stomach. That developed into an infection. I was given antibiotics and told to take an antacid.

About two and a half years ago, I drove myself to the emergency room, because I had severe abdominal pain. This was below my stomach and didn't feel like the same stomach pain I had experienced before. They were unable to make a definitive diagnosis and sent me home with pain medication.

About 2 years ago, I started long distance running. I would occasionally get the "runners trots" from running long distances. However, I would go to the bathroom and be fine after that.

About a month and a half ago, my "runners trots" went out of control. I was unable to stop having bowel movements and it turned into severe diarrhea. I took a few days off and tried running again. But I had no luck.

I read online, stories about "runners colitis." This seemed similar to what I was experiencing, but the problem continued. I stopped running completely and the diarrhea and several abdominal pain continued. I had bloody stool, which scared me. I went to the emergency room. They performed a CT scan and found signs of inflammation in my colon. The radiologist said he believed it was "some type of colitis." However, no definitive diagnosis was made and I was told it could be either bacteria or a virus. I was told to follow up later with my primary care physician.

About two weeks later, I made an appt. to see my primary care doctor, because the abdominal pain had continued and intensified. I continued to have diarrhea and would also experience bloating. I started to develop severe night sweats and would wake up several times a night, drenched in sweat.

My primary care doctor evaluated me and recommended doing blood work and a stool sample. I provided both a stool sample and blood. No infections were found in my blood or stool. However, my liver enzymes were highly elevated. I was told this usually means fatty liver. However, my liver was normal on my CT scan. I was referred to a GI specialist the following day.

The GI specialist told me he suspected either UC or Crohn's. I had a colonoscopy the following week. I was told my colonoscopy was normal, but they found a large area of clumping/bumpy tissue near my terminal ileum. The doctor told me it was probably nothing to be worried about and that he had seen it before. Biopsies were sent to pathology.

I received a phone call two days ago from my GI specialist's medical assistant. She told me they received the pathology report back. She said the doctor suspected it was either a bacterial infection or Crohn's disease. But again, no diagnosis was made. He gave me antibiotics to try and they offered no additional information on where I go from here.

I continue to have abdominal pain, loose or water stools, discomfort, night sweats, irritated eyes, and occasional joint pain.

I reviewed my pathology report...here is what it said...

1. Terminal ileum, nodular mucosa, biopsy:
Small bowel mucosa with chronic architectural distortion,
including villous blunting, active inflammation with healing
ulcers, and prominent lymphoid infiltrates, favor reactive (see
comment).
Immunohistochemical stain for CMV is negative for viral
inclusions.
No granuloma or dysplasia identified.

2. Colon, entire, biopsy:
Focal active colitis (see comment).
No granuloma, chronic architectural distortion, or dysplasia
identified.

Comment: No fungal organisms are identified on GMS stain (slide 1A7),
performed with appropriate positive control. Differential diagnosis of
chronic active enteritis and focal active colitis includes infectious
colitis, medication-associated mucosal injury, and evolving
inflammatory bowel disease. Clinical-pathologic correlation is
recommended.

I am frustrated that I am not getting answers. I have good days and bad days, but most of them are bad days.

The worst part of my illness is having to go to work. I am a law enforcement officer and can't always be near a bathroom. It makes it really difficult to perform my job duties. I've had to call in sick several times, when things are really bad.

Has anyone else experienced a similar situation? Any help or support would be helpful. Thank You!
 
To lift my spirits I bought my Ella a expensive smart phone from a South African site it arrived to her today and to read her messages of excitement as she opened the package made me smile,it's a nice feeling to spoil the one you love. :)
 
My right side under my rib cage feels gnawing I think is the word around my liver along with the breathlessness from the abdominal distention I notice that it hurts a little and feels like it's robbing me of breath where the liver is,I have to more or less tense my tummy and sides to get any breath at all and lay gripping my right side to get to sleep.Any ideas about this would be appreciated.
 
Been a good day about the best I've had in ages I'm blessed to be where I'm at my guts suck but a diagnosis is coming and I have the best relationship and a good friendship so life's not all bad,I'm looking forward to march and a trip of a lifetime and hopefully to spend a most wonderful month with my lady which will be our first meeting.I hope that after that it will be the first of many trip's and who knows maybe once these gut thing's get a definite diagnosis I will be able to manage them enough to move over there permanently. :)
 
Hi all,

I am officially diagnosed. I have Crohns Disease. It has been a long wait but finally I have an answer and can be treated. I was in admitted to hospital again last month and they did more tests. I had a new calprotectin test done and the result was 1732. I met my GI specialist on Friday and he is the nicest man and spent so much time with me. It hasnt sank in yet but I am sure it will soon. I am waiting for an MRI scan to determine how advanced it is. It is in my lower intestine in the terminal ileum.
 
Hi everyone - I am heading back to the big city for a HIDA scan of my gallbladder etc to see if that is causing problems they can't see on ultrasound. I have come off the antibiotic, and am doing OK. Cross fingers...


I was in a shop today - trying to find warm clothes a the wrong time of the year, in a smaller size and I explained to the shop assistant who was puzzled by my 'choice' of currently waaaay too big baggy clothes, that they were not baggy when I bought them. And when we had figured out that I had gone down 5 clothes sizes she said - how did you lose all that weight? (I thought about telling her about the hours and days and weeks spent on the toilet) and then said...'I am not sure' And she suggested I see a dr.

Yeah, um, they don't know either.

Maybe it was magic?

Will update how the HIDA scan goes incase anyone else has to have one on their journey.
 
Good luck with your HIDA scan. I had one a couple of months before they removed my gallbladder. It was functioning fine which came as a suprise but they removed it anyway! Since it has been gone - no upper pain.
 
A little update from me. Another case of "something is going on but we don't know what/why".

The Rheumy i've seen has discharged me back to my primary Rheumy because he doesn't see he can offer anything, which is depressing, another Dr given up on me. Got 2 normal CRP readings under his care which is frustrating, I have gotten the odd normal reading in the past but it's usually consistently raised.

He did find suspected bursitis in my right hip, which is always the worst, so gave me a steroid injection which to my surprise is helping. Normal x ray.

However the anaemia issue (of which I am under new Gastro Drs) continues. I did bloods last week and while my HB is really good (am on iron tablets however) my B12 is even lower than in June.

Now the supposition from some Drs is the Naproxen caused my anaemia. The upper endo did find gastritis. But I have not taken Naproxen since June and did the correct course of Omeprazole to heal the gastritis. Surely any damage caused by meds would have healed in 5 months.

So why is the B12 now even lower!?

Oh and I found out ESR came back raised while I was an in patient which has never happened before. Also IgG was low.

AAARGH so frustrated lol! I want to cry but am trying to laugh.

Will be seeing GP soon to start B12 replacement therapy and I will get him to go through the rest of my blood results as at the moment I only have Hb and B12.

I am due to see Gastro in Feb but no appointment yet so got to chase that.
 
I'm pleased with blood test results,they showed raised c reactive protein which has got doc's to change from the long standing ibs tag and have added ibd to my conditions,I am now a lot more hopeful then I've ever felt that after year's of test's once I get to my gastro appointment I may finally be close to a real diagnosis.I've requested a pill cam aswell so onwards and upwards,finally we're getting somewhere. ;)
 
I'm glad to hear you are getting somewhere. I also want to try and get a pill cam. My GI at the time many years ago tried to get me one but failed at a different hospital (did not meet funding criteria at that time).

Right now there is clearly something going on in my stomach/small bowel but scopes have turned up nothing. I know at the new Hospital they offer the procedure but whether it is restricted or not I don't yet know.

I just wanted to caution you I have had raised CRP for years and several times been diagnosed with IBS. Because they hadn't found anything in addition to the CRP it was still IBS last time.

At the moment things are different but historically even with the CRP i've been told IBS.

I am sure though that with the CRP (did they tell you the number?) raised it will lead to further tests at the very least. It's always easier to cope with when the Drs are trying right!
 
21.1mg something no idea what that means have a print out so will bring that to gastro,far as the pill cam goes I'm not prepared to go through the discomfort of yet another endo when I know full well it's not gonna go deep enough to actually give a clear picture.Tired of the length of time it's taken to even get this far,they best be prepared for my firm but no swearing rants they are gonna get from now. ;)
 
Just be firm Starrr not in a rude way but don't let them tslk over you when your trying to ask for something that's usually enough to start me off,today he was asking about the tissue blood and came out in the middle of me trying to say I just think it's ibd related that he knows I'm concerned about bowel cancer.From there I kinda flipped a litte said in no appointment have you heard me mention I'm concerned it could be cancer and not to talk over me he looked a little amazed and after that the appointment went well.
 
Sorry to come in here and moan, but I am so frustrated at the moment.

Had 6 weeks of diarrhoea, and some vomiting. Now I have diarrhoea once a week followed by constipation on the other days. I now get sharp pains in my joints. Blood tests and endoscopy are clear and I have a colonoscopy booked in for next week. The problem is that although my GP has suggested IBD, I saw the Registrar at the hospital last week (the consultant was busy) and he was totally rubbish. He said that as I no longer have diarrhoea, I am obviously better. The cause was probably just a bug I picked up on my summer holiday (I went to BATH!!!) and the antibiotics I was given for a UTI can cause an upset tummy. I had the antibiotics 6 weeks after my symptoms started. This was not an upset tummy, I have never felt so ill, I lost 1 and a half stone, and I am still losing weight (albeit at a slower rate). But when I questioned him as to whether I had IBD, he practically laughed and asked why I would think I did as I don't have any IBD symptoms (given that the blood test is clear). He told me he was sending me for a colonoscopy, but as he expected it to be clear, I was discharged from his care. I insisted that if the colonoscopy was clear then I wanted to stay under the Gastro clinic to find out what was wrong with me as surely regular diahhroea was not normal and I am still in pain and reluctantly he agreed. So I have my next appointment in March! I am expected to be in pain until then?

I am scared that my colonoscopy will be clear, as I've read in these pages that IBD may not show up in this test, and if it is, this doctor is happy to leave me for another 4 months. Seriously I can't do this, I've missed 6 continuous weeks from work and I'm still having days off here and there. Work have been great, but they will loose patience eventually.

My GP has been great, but if the hospital won't investigate, the doctor can't just give me random drugs to see what will work. Is there any advise as to what I could ask for next? Can I be asked to be referred to another hospital, or insist on seeing the consultant, not the registrar? I'm told the consultant is lovely and an expert in this field, and officially I am in her care, just I got to see the patronising condescending arse instead.

Sorry for the long rant! Just so down right now..
 
Hi CWT

Any help or support would be helpful. Thank You!
Click to expand...

Sorry to hear about your problems. I'm afraid I don't have any pearls of wisdom to offer, but you are certainly not alone! As various things keep showing up in your tests, it seems you would be perfectly right to go back to your GP (I'm guessing you are in the States and I am not sure what you would call your general doctor!), and ask for a care plan to be drawn up, just so you know where you stand.

Have you also tried altering your diet? I have found it helps me. If your gut has gone crazy, it might be wise to stick to foods that are easy to digest. I avoid wheat but the FODMAP diet may help? But you should only start that under the advise if a dietician.

Hope you get some answers!
 
I have a pain in my left side about the bottom of my rib cage and in middle of left arm where the elbow bends
 
doogle if your GP has been great then do go back and see if they can help in any way. It's worth a try right?

Added in later because I didn't have time before :)

You are certainly right that persistent diarrhoea should be investigated and taken seriously. Especially with your history. And losing weight is not really an IBS symptom.

I'm sorry you saw such a horrible Consultant. You may want to to think about making an official complaint or contacting the PALS team stating your poor standard of care and ask to see someone else. You can also ask your GP to send you elsewhere for a second opinion.

Sadly a 4 month wait in the NHS is quite typical for something classed as non urgent, heck in some NHS trusts a 4 month wait is for urgent.

I can't help with your employer although it might be an idea to consult with a union rep if you have one or the Citizens Advice Bureau (CAB) so you are aware of your rights and options such as sick leave or benefits.

Until your colonoscopy is completed there is always your GP or even A&E if your symptoms worsen or become intolerable.
 
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Thanks Star
You are right, I will go back to my GP after my colonoscopy next week. Just worried that as I was seen by the Gastro department, the doctor won't have anywhere else to refer me to. The only tablets I am taking are the anti sickness tablets as the GP is reluctant to give me anything else without a diagnosis.

Tomorrow I will probably be more positive, today I am struggling. I don't know if I have the strength to complain about stupid doctors and I don't want to wait 4 months. But it is the same for everyone on here and I shouldn't expect special treatment.

But thanks for the help. It is useful being on here as I know what tests I could ask for. Also it is good to know I am not mad thinking it might by IBD as the Doctor thought it was laughable. But I am not mad am I? It isn't right to be in pain like this!
 
I believe more than ever after year's of negativity with regards to my health that anything you want and believe in enough is possible to achieve,I aim to get the diagnosis what ever it is and as long as I hold and aim where I want to be a year or two from now I'm up and out of this
place and staying with my happiness.
 
Doogle - I am sorry to hear you are having such a rough time, and I completely agree with Stargirl, go back to your GP (repeatedly if needs be), make it clear that you need some symptomatic relief and if you get really stuck then I would suggest A&E - I know its not ideal but if you are in a lot of pain and are getting no pain relief from your GP, gastro team are not being helpful, then it is worth ago. A&E still a bit hit and miss I am afraid, but hopefully you will be able to get some pain relief to keep you going until you are seen next.
In the meantime all I can suggest is regular painkillers (such as paracetamol) to keep you dosed up (avoid NSAIDS such as aspirin and ibuprofen unless directed otherwise), try a TENS machine (they can be rented if you dont want to buy one, but they are quite cheap - mine was £15 online with spare pads), keep a food diary to see if that identifies anything, try hot and/or cold to see if that helps, speak to your GP/pharmacist about constipation relief as that can be very painful, especially if your GI system is already unhappy - I am sure you are already doing most if not all of this, and its not meant as medical advice, just things I have tried in the past /currently use. Hope you get sorted soon x
 
Well the HIDA scan went OK- the technicians and nurses were nice which makes a big difference:)

I had a bit of pain and nausea during the test, but nothing much different to normal. Managed not to have an accident in their expensive machine which was what I was worried about the most! After the test I had some lunch which I had some pain with but it went away quickly an I thought - maybe gas?
However later that night I had pain after dinner which stayed. I went to bed at 10.30 which is early for me as I just wanted the pain to go away. I woke at 1.30 am and ended up going into my Mothers bedroom to ask for help! It was as bad as labour pains, but in a different area. Thankfully it got better after a couple of hours and we went back to bed. In hindsight I should probably have gone to A and E, but you know, A and E is full of drunk people and I would rather be in pain an home than in a waiting room full of drunk people who have done stupid things, or drunk too much and there were childcare issues.... just a pain logistically too.

Anyway, I have come home from the big city, waiting for the results. I checked with my GI about the pain from the test, and his office said he would check the results asap and let me know, and if in pain like that again to go to A and E (which is a bit useless in my home town as they don't have any GI specialists, but I suppose they could give pain killers) I have been getting niggly pain - but I keep doubting myself and thinking it is reflux or gas or whatever.

Anyway, onward and upward. I will have to try and get back to 'normal' life, based on the assumption that all the other tests have been negative, so why would this one be any different, and I am sick of picking myself up after each negative results and getting my hopes up. So if this one comes back positive it will be a 'nice' surprise.
So I will start on the Christmas shopping and the Christmas cakes...etc

Oh and FYI for others having d- the loperamide has been really helpful- if I get on top of the tummy troubles in the morning, I can go out in the afternoon and to chores and get food etc- with a bit of confidence and less anxiety about toilet proximity which is nice:)
I was concerned about letting whatever needed to get out of my system 'do its thing' but the Gi convinced me that it was not that sort of 'process' or situation, and that I would just be losing whatever nutrients I had managed to absorb, not to mention dehydration, so better to stop it. - seems to stop cramps etc too which is nice:)

Will post test results when I have them.
 
Not sure what's worse the discomfort from the distension the sick feeling or the body aches,I have a appointment at the dental hospital tomorrow will get there somehow.
 
Appointment went well at dental hospital they thankfully recognised my other health issues and a very bad gag reflex so I've been referred to the very top consultants so may get some kind of implants or something,will take a bit of work but I'm a lot better with all the results I've been getting with everything of recent and eager to get to the gastro now have an mri next though.
 
Would friendship problems and such really cause such extreme feelings of sickness,I mean I never feel so depressed or even stressed much anxious maybe more to do with continuous symptoms mainly the breathing issues the rest I can cope with.I am having a hard time with a friendship at the moment and been feeling nauseous and fatigued would emotional stuff get you down that much.
 

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