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Crohn's Disease Forum

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Cindy, absolutely, come visit me in Madison anytime! Or Johnson Creek is only about 40 mins from here, and I am admittedly slightly obsessed with the outlet mall there (discount Bath & Body Works store!!) so that would work for me too. I haven't been up to the EC area in years, I think the last time was when a friend and I headed to the Twin Cities for a weekend getaway - I seem to recall that I was 25 at the time, so that was about 9 years ago (way before I got sick). Definitely let me know if you'll be in my area, and I'll let you know if I'll be up in EC for any reason. :)
 
Turns out my referral to this GI I wanted to see never got to them...Ive been waiting and calling for three weeks about it and they just now told me that it didnt even get to them, Im so annoyed with the diagnosis stuff. I wish the first doctor I tried was a better doctor, but he put me on ativan..told me its my nerve causing my pain... I tried it but it didnt work... I feel like he forgot all about my endoscopy saying I had chronic gastritis, esophogitis, and edema in my duodenum.... I just dont see my nerves doing all that, or doing what ive been dealing with on a daily basis. So I cant handle this much longer and even though I havent gone this whole time Im thinking about just going to the ER...Im sick and tired of feeling sick and tired. :/
 
My doctor is phoning the GI today and hopefully he'll get a result! Its practically taken for me to get almost hospitalised to do anything! I also hope the blood they took might show something, but i'm doubtful :( i cant wait to see this GI, i really need some decent help asap!
 
Good luck Rose! Keep us posted. I hope you finally get somewhere with all this! Fingers crossed for you!

Stevi, oh that sucks, my GP's nurse once "lost" my referral for a rheumatologist. Like you, I waited 3 weeks, heard nothing, so I called my GP and they discovered their error and had to re-submit the referral which took another week... and then it took 4 months to have the actual rheumatologist appt. And the rheumy turned out to be a totally worthless idiot so that was just fantastic. :p So I hope your experience goes a lot smoother than mine did. Oh, and if you're thinking of going to the ER - we have a saying on the forum, that if you're thinking of going to the ER, just go! Don't overthink it, if things are bad enough for you to consider going to the ER then things are bad enough to just go to the ER. At the very least, they should be able to give you IV fluids, pain meds, they can run bloodwork and do x-rays and CT scans. Good luck, keep us posted on what happens and if you go to the ER.
 
My husband works at the local hospital... Its actually why my referral didn't go to the GI originally( insurance stuff) ...From what I hear the GI I requested is the best in my county so I really hope all this trouble is worth it... I might go to the ER tonight...I havent even got a CT scan yet it sounds nice... Id also like a break from this pain Im in... Im seriously too scared to take pain meds ..in fear of it making my condition worse in the long run
 
I can't sleep it is almost 4 in the morning here.
Sorry to interupt.. My story is on the website.
The GP phoned wednesday saying my blood was okay except they found a parasite (don't know if the translation is okay) I have to bring in my stool. Then he phoned me again on thursday but I didn't answer, I thought it was someone else trying to get in contact with me. He left a voicemail saying he phoned a specialist in hospital. And they both think I have to go to hospital, because they don't think it is any good, and the are worrying about me and my health. And that I can't keep on living like this. I am so glad that they believe me and want to do something, but I am so scared that the might not find anything at all. Maybe I am just a whimp..

Ahhh well, I hope from the bottom of my heart that everyone soon will get diagnosed and that the doc's can do something about it.
Not that we want this disease, but then we finally know what is wrong and what we can do for it.

X
 
Hi everyone *hugs* :hug:

All of my test results came in on Tuesday and the doctor says that I have a SEVERELY inflamed colon, but he did not put me on any medication. Is this right? I am deficient in ALL vitamins and have even become anemic. He has me on Calcium tables, because of vitamin d deficiency, that I only take once a week for 8 weeks but nothing else. The pain hurts so much sometimes...:(
 
Hi Felisha, I'd definitely ask your doctor for more information. Did he take biopsies? What does he think is causing the inflammation (IBD, infection, etc)? And definitely ask why isn't he treating you - is he waiting on biopsy results or other test results before he proceeds with treatment?

Hi Leanne1994, welcome to the club. I'm not sure if a parasite can be found from bloodwork, but a stool sample could confirm or rule out if you have a parasite. Stool samples can also rule out things like bacterial infections (salmonella, c diff, etc). So that sounds like a good step to take. Let us know what happens with your stool samples and what happens when you get checked out by the specialist and hospital. Good luck!

Rose, did you hear anything from your doctor? Did anything result from him contacting the GI about your case?

Stevi, how are you doing? Did you end up going to the ER? As for taking pain meds - be really careful about over-the-counter stuff. Anything that's an NSAID (ibuprofen, aspirin, etc) can actually make things worse, those type of meds are contraindicated in IBD. Tylenol is basically the only OTC pain med that's okay to take with IBD - it can affect the liver though, so don't take more than the recommended dose, and maybe avoid it if you have liver issues. Prescription pain meds, I don't know much about them, but generally speaking most of them tend to constipate and most also have some risk of dependency, so if you take prescription pain meds, I'd say take them sparingly.

How's everyone else doing? I'm so-so. Feeling pretty tired as it's been a very long and stressful week. My hip started aching again this morning - it had been quiet for like 2 whole weeks, that may be a new record, ha ha. :p My guts are okay-ish, I've been having some d but nothing horrendous and no nausea or anything else. So not too bad. I hope everybody else has a nice, restful weekend.
 
Rose, I somehow missed seeing your latest post - that's wonderful news, less than 3 weeks to go! I wish it were even sooner, but at least you don't have to wait until July now. That's definitely a good thing!
 
Hello cat-a-tonic, in 2012 they said i hade a parasite/bacteria as well when I ended up in hospital, thats why I am lactose intollerant.
Yeah he said they found a parasite in my blood... Maybe the way my bloodcells are?
I will go to the GP on monday to pick it up, but it is always hard, because we have to bring it to hospital right away after you have taken your stool. But I hope it is a bad stool, so they can see there is deffo something wrong.
I am so scared for hospital, what ifbthey can't find anything??


Rosanna, wowww good job!!! I hope they can help you!
 
Ive been feeling sicky all day :(
Went to the gp to get more amitriptyline (I missed thurday nights dose cos I ran out) and apparently the sickyness is due to withdrawal from the amitriptyline...great. I try so hard to be spareing with codeine and tramadol so I don't get addicted to narcotics...and I get addicted to an antidepressant...Im really annoyed.
 
Hi Felisha, I'd definitely ask your doctor for more information. Did he take biopsies? What does he think is causing the inflammation (IBD, infection, etc)? And definitely ask why isn't he treating you - is he waiting on biopsy results or other test results before he proceeds with treatment?

He didn't take any biopsies yet Cat-a-Tonic (BTW, I just love your screen name ;)) I asked him what the cause could be and he said it's probably because of the foods that I have been eating...gluten, chocolate, corn, dairy products, coffee, lettuce, tomatoes, etc. (I could go on and on here with different kinds of foods that hurt :)). He did lots of stool samples and drew plenty of blood but now he wants me to do a Colonscopy. I've never done one of those before. :confused2:
 
Cat i am so relieved! I'm counting down the days! I'm very hopeful they can do something, well i really hope they can or i just dont know what i'll do. I just need help! Got the appointment with the cardiologist on wednesday so hopefully they can sort my heart out too!
 
Felisha, a colonoscopy is a good test to have. They can see the entirety of the large intestine and a little bit of the small intestine (the terminal ileum - which is where Crohn's most commonly manifests, so it's a good spot to look at). It's not the most fun test to have - you'll have to drink some laxative the day before to clean yourself out, that's the worst part. For the scope itself, it's like having a nice nap. Let us know if you have questions about it, most of us here have had at least one colonscopy if not many! When is your colonoscopy scheduled for?

Oh, and Felisha, as for your trigger foods - some people have tons of trigger foods and some have few/none - it's highly individual. So while you're waiting for your colonoscopy, you may want to try an elimination diet and/or a food diary to see if you can figure out what your triggers are or what's safe for you.

Rose, I'm glad you're seeing a cardiologist soon too because the heart symptoms you've mentioned sound scary. I really hope these doctors can figure things out soon and get you some relief already! Please keep us posted as to what happens on Wednesday. We're all counting down the days with you, I hope this GI is really good and worth the wait!

Akiva, I didn't even realize that a low dose of amitriptyline could cause withdrawal symptoms like that! That stinks. I've been on amitriptyline (25 mg) myself for about 3.5 years now. I was off of it for a couple weeks awhile back, my GI switched me to nortriptyline to see if that would work any better for me (it didn't), but I guess the medications are so similar that I didn't go into withdrawal.

I almost had to deal with corticosteroid withdrawal though which wouldn't have been fun! My GI had put me on 3 mg of Entocort a couple months ago, but then I kind of flared while on it anyway so he said I could go up to 6 mg. That meant I was taking 2 pills a day instead of 1, but my prescription was still for 1 pill a day so I went through my bottle of pills super fast and didn't have any more refills. I emailed my GI 3 times this week, heard nothing, started panicking, went to my pharmacy this morning to see what could be done as I officially ran out of Entocort this morning - and lo and behold, my GI finally came through and he had put in a new prescription literally just before I walked into the pharmacy. Phew! He refilled it for 2 pills a day this time, too, so I won't run out super fast again. But the weird thing is, he usually calls or emails me first to let me know he's going to send a new prescription over to the pharmacy. Today? Nothing, no call, no email. I was just lucky enough to find out about it when I went to the pharmacy. I'm obviously glad he refilled it, but waiting till the last minute and not letting me know about it - not cool. I know it's technically safe to go from 6 mg of Entocort to nothing - you're probably not going to damage your adrenal glands or anything - but it also wouldn't be pleasant. I would have likely flared and felt like crap, if nothing else. So anyway, I'm glad it didn't come down to that but it was worrying for a bit!
 
Talking of withdrawal, me and codiene are going to be worst enemys when i have to come off that, when i took a couple of days off it to try and stop tolerance build up i was sooooo ill, aches and pains, headaches, restlessness... i'm going to have to reduce it slowly, cold turkey isn't going to be an option. Not looking forward to that one!

Glad i've finally got all my specialist appts soon, chest pains are so bad now and it needs attention. I will update you all when i know more :) hope my heart isn't too serious and that the GI can offer me something!
 
Cat i am so relieved! I'm counting down the days! I'm very hopeful they can do something, well i really hope they can or i just dont know what i'll do. I just need help! Got the appointment with the cardiologist on wednesday so hopefully they can sort my heart out too!

Has anyone metioned behcet's disease to you?

Another member here, struggled with GI issues for years and developed other symptoms such as chest pains, and her illness was diagnosed as Behcets.

click for her story
 
Thanks, i will definately mention that, it might be a long shot but its better they do look at it than possibly find something like that years down the line!

So as i'm off alot from work right now as been so ill, i've decided to start a hobbie. I've always loved craft but been naff at it, i cant draw, i cant paint... everything i have ever tried has failed. Until yesterday! I had a idea to start making little trinket boxes, you can buy papier mache bases to decorate and i've brought some lovely papers and gems, so i've made this beautiful butterfly and magic mushroom trinket and i am so proud of myself! I can't believe how its turned out! Wish i knew how to post pictures to show you guys! I'm glad its come out so well, and today i get to try out this beautiful poppy paper, yay! I really think this might help me keep my spirits up as it actually made me feel good about myself for the first time in a long while!!

Stomach doesnt like me right now and nor does my heart apparently... all very painful! Its a bit naff really being housebound because i need the loo right next to me, but this is why i decided to try the trinket box craft, to stop me depressing myself more thinking about being ill. Wort a try i think!

Hows everyone today? :)
 
Thats so cute rose! I need to find something to do with myself lol...I used to draw so much! And tell your stomach to be nice! urg.
 
must not take the tramadol, must not take the tramadol, must not take the tramadol, must not take the tramadol

sorry, my mantra for the day! Having a rubbish few days pain wise, but nevermind, it has been worse so just need to carry on. Its great to have a place like this where we can vent when we need to and everyone understands why we have done it. Its not an attention thing, its a 'i have come to the end of my tether' thing, and now I feel better for it - so thank you!

Sorry to hear people having such a rough time, but Rosanna, glad your appointments are soon. I know its easy to say, but try not to get your hopes pinned all on the one appointment (we have all been bitten by that one), but i sincerely hope it is a positive one (ps, sorry to hear you ended up in a/e but im glad u went, the fluids and anti-emetics will have done you some short term good at least). Hugs to everyone!
 
In a way madmouse, i think the likelyhood of them being able to do much for me is second to none. In a way I am just relieved i have an earlier appointment to hopefully get somewhere sooner, even if its just more tests. Anything right now is better than nothing!

I decided to set up a trinket box businesses facebook page today to try and get somewhere with it as I am enjoying it so much! 4 more made today, they are ace! Going to have to buy some more boxes to decorate! I really am enjoying taking my mind off things, so hopefully we'll do well! 36 likes in 2 hours, so that's not bad so far! Hopefully it will grow!
 
Sinds summer 2009 i still have after 8 colonoscopies and visiting various hospitals (5) no idea wath i really have.

Some docters says i have Cron's some says i have Ulcerative colitis?

But all docs find some active disease in my large intestine one doc also found some small traces in the spliting point from tiny to the large intestine.
I did also used all medication wath is used by these 2 diseases non of them helped or i get the side effects from it. Now the doc wanna do carry out a Colectomy surgery wich is planned for may 2 2014 in just few days. the last doc thinks i have UC instate of Crohn's for me one of them is it for sure but i dont wanna undergoing a surgery for nothing and getting more trouble with the J pouch then with non jpouch.

I also never have any complication of the diseases like Fistula ect.
Only thing i got is alot pain losing blood and Mucus in begin also fever.
High platelet count i got this also.

Wath is the best i can do im really have no idea anymore and i also visiting 5 hospitals so im getting littel tired and crazzy about this sh...t.
 
I know it feels like a never ending journey. If I was in your position I would probably try and find out what the disease really is before you go through such a surgery, but thats just me. What other tests have you had done?
 
Noisekick, I am suggesting that you message forum member QueenGothel as her daughter has dealt with the surgery that you are talking about and some complications and the uncertainty re: Crohn's vs Ulcerative Colitis.
 
Do they have pill cams? Thats what i am going in for next it takes a look at your small intestine.

Yes i tink the hospital where im getting the treadment have, but when i did ask always they refuse to do due they say that a Colonscopie is good enough to.
 
It is very and 5 hospitals further without any diagnostic.

I did canncel the surgery for Jpouch i did ask for a temporary Ileostomy with keeping the big intestin if it is crohn's then i still have my big intestin.

the doc who gona do the surgery shall call me today for info and thoughs about this way.
 
Felisha, a colonoscopy is a good test to have. They can see the entirety of the large intestine and a little bit of the small intestine (the terminal ileum - which is where Crohn's most commonly manifests, so it's a good spot to look at). It's not the most fun test to have - you'll have to drink some laxative the day before to clean yourself out, that's the worst part. For the scope itself, it's like having a nice nap. Let us know if you have questions about it, most of us here have had at least one colonscopy if not many! When is your colonoscopy scheduled for?

Oh, and Felisha, as for your trigger foods - some people have tons of trigger foods and some have few/none - it's highly individual. So while you're waiting for your colonoscopy, you may want to try an elimination diet and/or a food diary to see if you can figure out what your triggers are or what's safe for you.

Hey Cat! :hug:
I do keep a food journal and it has helped me majorly. It's really something seeing what all that I can and can't have and even better seeing how my body reacts to different kinds of foods. :) The sad thing is just about everything is bothering me. I do get severe pain but so far I have just been baring it until my doc prescribes me some meds for it, especially after eating! uggggh! My doctor is supposed to meet with me in three weeks to schedule the Colonoscopy. I am hoping that I can hang in there until then. :( If I have any further questions I sure will let you all know. I am so grateful for you all here on this forum. The support, love and comments have been truly golden. :ghug:
 
Akiva that is horrendous! It is just disgusting that anyone would do that! Why they have been 'suspended' and not sacked on the damn spot is beyond me! How dare anyone in the NHS do that to people! They wouldn't do it to themselves! I'm disgusted this has gone on from 2005 until now!!! What the hell is the NHS turning in to! I'm not surprised your angry, i'd be flipping raving of i was you! I hope noone has contracted those diseases because of this 'healthcare worker' and especially not you!
 
So angry right now. this is my uni, guess who now has to get tested for HIV and hepititis.

http://www.dailymail.co.uk/health/a...patients-having-blood-tests-vaccinations.html

Tbh, I wouldn't even be worried about that. They changed the needle. I'm in healthcare working directly with needles and patients with these diseases day in day out and even if you directly needlestick yourself after a known infected patient, the risk of transmission is stupidly low. It's like less than 1%. Please don't stress too much, it's most likely a precaution and they'll have to go through the motions of screening you all.

It's shocking that it happened at all, but please don't worry until you have to :hug:
 
Well, its my cardio appointment tomorrow... bit annoyed that my mum wont help me out at all, its first thing and there isn't a bus that will get me there on time, so i'm having to pay my sister taxi rate to just drive me 10 minutes down the road -_- like i have that money to spare! To then have to walk 20 minutes and then pay for a bus after that aswell, not to mention going to get my tablets - even more money! I'm so strapped for cash as it is and now stressing about how i'm going to live for the rest of the month on my half wage as thats what i'm being paid while im ill. Not easy. Just wish someone would help me without charging me a fortune for once. I have noone close in my life who is on any way caring or supportive. You guys are fantastic for support with all this, but sometimes i could really use a hug. On a real downer with it all :( really wish i had more physical support from the people whobare supposed to be my family :/
 
Im sorry Rosanna :( I wish I could help you more...I dont know if your family was supportive to begin with but I know its very hard to sympathize over something you have no clue about. Unfortunately they have not a clue what you are going through... maybe educating them could help a bit? It sucks not having cash tho...do they have anything like temporary disability there? For me I used to make like 8-9 hundred bucks a month and now im only making 600 but it is more than half the money.... Its really stressful doing anything feeling like crap, I know because I normally just dont do a thing. Hang in there <3 you are tough!
 
Thanks Stevi. They've never been supportive, they don't care and they don't want to know. Problem is that im not 18, so i couldn't get any help with money, they think your parents will still pay for you at my age... not the case! The only thing i'd be entitled to is sick pay, but because i'm being paid half wage by my employer and working part time, i am not entitled to that either. I get nothing help wise. I'm ending up going into work when im so ill even though i'm probably not fit because every hour i lose is more half pay and i can't afford to lose the 20 hours of full pay i get for doing the 20 hours a week. Its so stressful and probably making me worse. I need a solution to my problems, the only solution is to get better, thats not happening anytime soon :(
 
I'm sorry about that, we live maybe 20 mins from my family (who nearly all drive and have cars, unlike Mum & I who I live with), never had any offers of help from them. I even had to get a taxi to my colonoscopy after having all that laxative prep, and taken a huge urine sample to the Hospital lab on the bus (double bus that is, it had to go direct there and not via GP due to there being no preservative due to the test needed- sealed and bagged of course-but still!)

The one time in my long journey I get a lift to a Hospital and it's from a friend- ironic hey?

And don't get me started on how when my Granddad was in Hospital they all drove there while I had to struggle through double bus journeys each way that took 30+ minutes more than they should due to major roadworks....
 
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It took awhile for my family who is very supportive to get what I am going through, (and i still reach out to you guys) I couldn't imagine not having their support :( Im sorry you two have/had to go through that. I had my family watch videos and told them all about it... I also have a loving husband and he tries to make all my appointments.
 
I get alot of emotional support from them, but as for the practical nitty gritty not so much.
I am single and live with my mother who is fab but she doesn't drive either so can't help me there...
I simply have too many appointments to have someone with me all the time, Mum will take time off work though for the important ones without problem.

We don't have much money either which adds to the strain, little practical help and little money is not a good mix on top of being sick and single!
 
Stevi i wont be 18 until november. I think i'm starting to really hate them too! There making my life hell!

Stargirl, its irritating isn't it! I rely on public transport so much but its not reliable for appointments as there always late! Its hard with not having much money too.

I go alone to every appointment, get there by myself unless there is no public transport, even then i have to pay them. Hate not having any support from family or friends, its hard.

Cardio appointment went ok, got to wait for appointments to have more tests. Meh!
 
moneys been an issue for us too :/ we actally just gave our months notice at our place... now i getta find a new home on top of being undiagnosed...
 
I got news!!! My pill cam will not be approved of until i have consultation with a G.I. This kinda kills two birds with one stone because I couldn't stand the doctor who sent the pill cam referral out anyways and had a completely different referral sent to that doctor. I got this information when I got a phone call saying someone cancelled their appointment and that its at 930 tomorrow...My husband works and I have no for sure way of getting there tomorrow and I said yes anyways. So I'm having a tad bit of anxiety on figuring out how to get to my newly scheduled appointment tomorrow, but Im also really excited.... I NEED THIS. hah.
 
Good luck tomorrow, Stevi! I hope you can figure something out (bus, taxi, car-sharing service, ride-sharing app?) to get you to your appointment. Keep us posted on how it goes! Good luck with apartment-hunting (house hunting?) too!

Rose, come to the US and either Cindy or I will adopt you and we'll drive you to appointments. Seriously though, your family sounds just awful. Can you perhaps legally emancipate yourself from them? (I had a friend get legally emancipated from her horrible parents at age 17 and her brother became her guardian until she turned 18, but I'm not sure how the system works over there so not sure if something like that would be possible.)
 
strictly speaking in the UK we are adults at 16, but its impossible to do anything really til your 18. You cant rent or anything like that normally (if you are in foster care or childrens homes I think its different.

I think the age rules in this country are odd.
16 to have a job, (well get an National Insurance anyway, you can work small jobs from 14), 16 to have sex, 18 to marry, unless you have parental consent, in which case its 16. 17 to drive, 18 to smoke, 18 to gamble, 18 to drink alcohol. the age of criminal responsibility is 10, 18 and above to be charged as an adult.16 to move out, 17 to leave school/college. 15 and under is counted as childrens nursing, 16 and over is an adult, but you do see some 16 and 17 year olds on childrens wards, and some children on adult wards.
 
There isn't much i can do but moving to the US and being adopted sounds good Cat ;)! There is probably.some legal way to get rid of them, but in the UK law/court system, that sounds expencive!

As for your question Stevi, its a complicated law... If a guy has sex with a girl under 16, hes breaking the law. If she is 13-15, the boy could go to prison for two years.If she is under 13 he could be sentenced to life imprisonment. A girl age 16 or over who has sex with a boy under 16 can be prosecuted for indecent assault. Ovbiously those are maximum sentances and not everyone would get that. There is also something called the 'sex offenders list', im not sure about exactly how that works but you dont want to end up on it lol, it is classed as a criminal record, so you have to declare it to employers if you go for a job with their firm. Its all a bit confusing, but many people don't get caught if you have sex below the age, it tends to not get reported unless someone gets assulted or there is a seriously over protective parent who finds out lol!!
 
I do think the law is seriously flawed, you can move out at 16, but you must continue to go to school and cannot claim benefits. you also can very rarely rent.... so in actual fact you cant move out.

In other news I have an interview tomorrow for my first nurses job. Bit nervous but excited too.
 
Good luck with the interview, Akiva! Fingers crossed for you! And thanks for the info - wow, that is kind of different from the system we have here in the US. Legal age of consent for sex/marriage seems to be different in each state (I think?). You're legally an adult at 18 but you can drive at 16, can smoke & vote & join the army at 18, but can't drink until age 21 for some weird reason (when my parents were young, the drinking age was 18 back then). Oh, and you can't rent a car until age 25 which is very strange to me - you can drive at 16 and buy a car, but you can't rent one until 9 years later?? :p

Rose, maybe you could get a pro bono (free) lawyer to help you get away from your family. Sometimes lawyers will do that although I don't know much about it as I've never had to hire a lawyer. It couldn't hurt to ask a lawyer though?

Stevi, I hope your appointment went well! Please update us when you are able to.

I wonder how Cindy is settling in after her move? Cindy, if you see this, please update us when you can. Thinking about you!

How's everybody else today? I'm okay-ish. I got a migraine on Monday evening, it became horribly painful and I couldn't sleep at all Monday night due to the pain - I think it was the most painful migraine I've ever had. Tuesday it slowly started to ease up and yesterday I felt okay. Today it's a bit worse again but not as bad as it was, I'm still functional. I don't understand why my migraines are lasting so long. I think it's a side effect of Entocort but sheesh, it really sucks. My last migraine, which was a few weeks ago, lasted about 5 days. This one is on track to do the same. Bleh!
 
Sorry about your migraine cat.. i hate them :( hope it cuts it out!
Our sex laws go by state...but yeah 18 to do most things and 21 to drink...like cat said...
My appointment went well, the doctor knows what shes talking about... she said i have a possible hemorrhoid or fissure and I am getting a colonoscopy set up, She wants me to try the fodmap diet, take fiber, and start actually treating my gerd. She said there's enough to indicate ibs or crohns... But i finally feel like im in hands i can trust!
 
Well i was obv previously undiagnosed but finally the new GI doc which I like very much has diagnosed me based on 1999 operative report, pathology report and discharge summary! Now she needs a few more tests to determine what meds to prescribe for me! So crohns of the small bowel it is! She wants to do a small bowel MRI and possibly a new colonoscopy and upper endoscope depending on what the MRI shows! What is your thought on what meds she may recommend for small bowel disease? I would appreciate your input thanks!!!:eek2:
 
Stevi - I am glad that you are with a good doctor and getting somewhere with diagnosis and treatment. There is nothing more frustrating then getting nowhere with your doctor.:)
 
Problem is with my family Cat, i still have to live with them no matter what right now. So there is no point me doing anything because i havent got anywhere else to live and wont be able to afford somewhere for a long time yet. So its all a bit pointless going to any lawyer as i would be homeless, and thats the last thing i need.

I've been really rough the last few days :( i've got college today but im really struggling, urgh! Painful :(
 
I actually just want to scream right now!!!!!!!!!!
Just received a phone call from Worcester Royal Hospital (40 minutes away from where I live) saying they want me to go in this afternoon for a sigmoidoscopy. One problem, they phone me 2 minutes after my sister who was driving to Worcester to go to college had left and my mum is on holiday so I can't even get her to as an emergency. So guess what, no money and no transport means no rose at the hospital! Why can't they phone first thing, so like 8am, if they want you to go in on the same day! I've had to get them to cancel and reschedule which is all I need for the NHS as that means i'll get nowhere any time sooner, if I had the money to pay a taxi I'd have done it, but right now my bank account reads £1.56, that wouldn't even get me a taxi to the end of my drive. SOOOOOOO IRRITATED!!!!!!!!!!!!!!! Better still, why couldn't they let me know last night? They spoke to me lunch time. Urgh, now going to have to wait to reschedule this I think. Its irritating as hell for me right now!

Soooo, rant over! How is everyone? :)
 
Im sorry rosanna :( maybe they will let you schedule one?? Today I feel really strange... I dont feel sick today, haven;t ate yet though so things can still go south... but I normally have the worst mornings ever! Today it wasnt too bad :)
 
They found a parasite in my blood, so they wanted to check my stool. But my stool was normal..
Anyone an idea what it is?

Still waiting for the letter from hospital about the appointment..
 
They wanted it before my appt on the 14th so the biopsies would be back from the lab, so god knows if they are going to be able to reschedule before the appointment. Knowing the NHS i have no chance. Not much i could do if they dont give me any time to get transport! Grrrr! Angry rose!!
 
Guys i need some advice... i've started getting a horrible burning sensation in my lower abdomen, under where your knicker line is. Has anyone experienced it, i feel very dizzy and this burning hurts badly. Has anyone got an experience of this?
 
hows everyone doing? I am on day three of taking metamucil... it makes me have to bathroom less so thats nice :)
 
Roseanna - have you applied/got help with healthcare costs certificate? If you are not eligible, you can get a cert that covers your drugs for months/years for a set payment - it means having the money at once, but is much much cheaper than lots of prescriptions.
Chuckmya - glad to hear you have a diagnosis! There are various drugs they might try for you, including prednisolone if you are having an acute flare. Other common drugs for small bowel inflammation include azathioprine or mecaptopurine (both immunosupressants - if you google them don't scare yourself with the side effects, they are used in different doses for GI problems, and whilst there are side effects, they are rare), also mesalazine, probably pentasa, for small bowel (lotsof different types of mesalazine, and unlike most drugs, the different brands work in different ways, so once you are set on one, you will need the same one). Other possible drugs include buscopan (hyoscine butylbromide)m anti-emetics, pain killers, drugs for reducing acid (such as omeprazole/lansoprazole), certain anti-depressants (used at lower doses for GI pain), amongst others depending upon your symptoms and reaction to treatment. Often nutritional supplements or course of vitamins also required. Hope you get a regime that suits you and get sorted soon :)
 
They found a parasite in my blood, so they wanted to check my stool. But my stool was normal..
Anyone an idea what it is?

Still waiting for the letter from hospital about the appointment..


Hello Leanne
Could it be that evidence of a parasite infection has been found in your blood?
Or were you told it is a parasite, If so which kind.?
Your blood picture can change with a parasitic infection, did your doctors go over it with you.
It really needs a minimum of three stool specimens taken on three successive days if possible to try finding a parasite.
Have you been to the tropics lately?
Is treatment being planned for this infection?
Feel better soon
Hugs and best wishes
Trysha
 
:):)Madmouse thanks for the info! I'm currently talking vit D3 5000mg, calcium, probiotics, and magnesium. I'm also supposed to be taking iron supplement but due to the constipation side effect I've been trying to get my iron up by diet. I go see my GP again this week so I'll ask him to check my iron again and my vit D. I've had B12 checked and that's fine.....anything else I should have the GP do for blood work?? Much appreciated!!!
 
Cat-a-tonic I get migraines as well and have for over 20 years! I take the generic for imitrex called sumatriptan!!! Usually within 30 min it's gone! I don't know what I'd do without it! I can even finish my days work if I get one while I'm there! My life would be hell without it!! You should ask your doc if that would be ok for you! Obv it's prescription. M:eek2::eek2:
 
Hi all!
I've not been active on here for three years but I'm back :)
Obviously still undiagnosed.
In the last three years, while I have had some symptoms, I would not say I've had any flares since that first one - until now, that is!
I'm currently in Russia for ballet, there's nothing really I can do about it until I go home in June so I'm just patiently waiting, haha.
Although the more I eat the worse I feel and the less I eat the better I feel so if I can't do anything else meanwhile, at least I can just be cautious of my eating (and if this makes me lose weight then at least something good will come out of it, lol).
Well anyway just wanted to say hi and soon I'll catch up with how you all are doing!
 
Madmouse, i have looked at it... but its so much paperwork and asks questions i can't answer. They ask to know your household income and my stepdad wont tell me his, without him cooperating i cant do the forms :/ so i've given up trying. I also don't have the money to pay upfront, so just struggling through!
 
Chuckmya - I have tried sumatriptan, but unfortunately it doesn't work for me. It stops the initial migraine, but then causes a rebound migraine (I usually get migraines in the right side of my head, and the rebound migraines occur in the left side). So it's no good for me as it stops one migraine but starts another. :(

Happyballerina!! I remember you and I'm sorry to hear that things have flared up again. Are you not able to see a doctor at all while you're in Russia? If that's the case, then I hope things stay reasonably manageable until you can return home. And I presume you plan to see a doctor when you do get back home? Oh, and as for your signature - on the top of the screen, click on "Settings" and then there will be menus to the left, click on "Edit Signature." :)

Rose, for the household income on the forms, can you just use your best guess? Maybe google whatever his profession is and use the average salary for that line of work?
 
I cant use a best guess when it comes to forms with such legal attachments... they ask for exact figures which is irritating! Plus because hes been there for 30 years he'd be on much more than averate so i have no clue :(
 
Hello Leanne
Could it be that evidence of a parasite infection has been found in your blood?
Or were you told it is a parasite, If so which kind.?
Your blood picture can change with a parasitic infection, did your doctors go over it with you.
It really needs a minimum of three stool specimens taken on three successive days if possible to try finding a parasite.
Have you been to the tropics lately?
Is treatment being planned for this infection?
Feel better soon
Hugs and best wishes
Trysha

Hello,
My gp phoned me one wednesday the 23rd and he said they found a parasite in my blood, and he wanted me to have my stool checked. I send my stool to the hospital on tuesday the 29th of april. And i got the results back last friday 2nd of may.
My gp only said it was a parasite, but he still wanted me to go to a specialist, i had to see this as a preperation. And on friday it was the gp's assistent who phoned me so she didn't know, she only said that they didn't find anything.

I wish I had been to the tropics, but I haven't, and no nothing planned, still waiting for the letter from hospital to see a specialist.

Btw, when i had my stool checked summer 2012 they also said there was a parasite/ bactaria and that it will go away in a few days, few weeks later i had a stool test again and it was there still.

Thankyou!
 
So, got to go for a flex sigmoidoscopy tomorrow now... i feel like a bloody guinea pig being prodded and poked to find nothing. In a way i just want to say stop!! i've got to have an enema at the hospital, which i dont want, i would much rather just take laxatives the night before than be stuck in a hospital toilet for got knows how long with my stomach, i spend 40 minutes on the toilet every morning so i don't want to be stuck in there... at least its only 10 mins from home not 40. I'm sick of it, if i felt for one minute having another test would help me i wouldn't question it, but lets face it, its almost definately going to come back with nothing as usual. Just feeling like crap now and i have had enough of crappy tests!!! Urgh!!
 
Happyballerina!! I remember you and I'm sorry to hear that things have flared up again. Are you not able to see a doctor at all while you're in Russia? If that's the case, then I hope things stay reasonably manageable until you can return home. And I presume you plan to see a doctor when you do get back home? Oh, and as for your signature - on the top of the screen, click on "Settings" and then there will be menus to the left, click on "Edit Signature." :)

Thank you! And also thank you for the help with changing my siggy :)

Re: seeing a doctor here in Russia - it's not that I'm not able to see a doctor; we have our school doctor/nurse. I could and "should" tell her, in which case she would take me to the hospital in the city (I'm almost sure of it - because it's not something she has the means to diagnose/treat within the limits of the clinic at school). I want to say that my mom/parents and I decided it would be best to wait until I get home, but now that I think of it, it's actually only me that decided that, haha. It's just that I assumed my mom would rather me not start investigating here, I figured she would prefer to do it at home. However sometime last week she told me "[she doesn't] even know if I should treat it [here] and not wait" since it's obviously something quite concerning. So I don't think she would be "mad" if I told them here.

I'm mostly concerned about insurance...technically the insurance I have from home applies here too from what I understood, but I don't know how to deal with that sort of stuff and what to do with it. That sounds stupid writing it out now because if I needed to, my parents would help me of course. And the biggest reason I'm hesitating to tell them here is that I go back home on June 10 - 5 weeks from today! - and it would be a shame to spend them in the hospital. So, so far I've been dodging the school doctor's questions on the really bad days when I can't go to class (she comes to our rooms every day). I just say I have a stomach ache and when she asks why and what I ate I say I didn't eat anything weird and I don't know. I leave it at that and just say "it's fine, I guess I just get stomach aches a lot" and smile and she usually raises her eyebrow on the way out the door but seems satisfied enough with that to not pursue the issue further, hahaha.

I think the plan right now is good, though - my mom will try to speak with my doctor at home to get her opinion on the matter, and I suppose we'll have a better sense of direction for where to go from there. I mean, if she says "get to a hospital NOW" then of course I will go to our doctor and tell her what's been going on :p The only reason my mom is not freaking out is because it's happened before (albeit, if memory serves me right, it wasn't quite as bad as this time) and they didn't find anything and she knows I'm not dying! She said if this was completely new and never had it before she would either be on a plane on the way here already or have me on a plane home immediately. :lol:
 
Happyballerina, just a thought - perhaps you could explain a little more about your symptoms to the nurse and ask for some medication for symptom relief (Zofran for nausea, Lomotil for diarrhea, etc). At least then you'd be a bit more comfortable until you can get back to the US and pursue a diagnosis and you likely wouldn't end up in the hospital. Obviously meds like that will only take care of symptoms and not the underlying illness itself, but hopefully something like that would be enough to get you through the next few weeks. I'm glad to hear your mother is so supportive and is contacting your doctor at home about this. I hope the next few weeks aren't too awful and that you can get things figured out quickly once you get home!

Rose, refresh my memory, have you already had a colonoscopy? Flexi-sig is not a useless test, but colonoscopy is much more thorough. The benefit of flexi-sig is that, as you said, they can do it right there in the office. But it doesn't go in nearly as far as colonoscopy does so they won't see as much. If you haven't yet had a colonoscopy, particularly if the flexi-sig doesn't find anything, I would definitely ask them to schedule a colonoscopy as well.

Leanne, I wish I could answer your questions, but I don't know much about parasites. And without knowing the name of the parasite, I can't even google it for you. I think you need to call your doctor and ask a lot of questions, like what is the name of the parasite, why would it stay in your body for so long, what symptoms can it cause (is it likely causing your current symptoms), what is the treatment for it, etc.

How's everybody doing today? I'm kind of bleh. I had a good day yesterday, but today it feels like yet another migraine may be starting and I am also feeling a bit nauseous. I'm so sick of having chronic migraines! It's a side effect of the Entocort that I'm currently taking, so I need my guts to hurry and heal so that I can get off the Entocort and stop having so many migraines. Ugh.
 
Cat, sorry to hear about the migraine and nausea (is the nausea something you get with your migraines? I know some people get that as a "bonus"). I don't think I've ever had a real migraine, so I don't have any advice, but I do hope you feel better soon! And that you get off the Entocort soon! :) I had a kind of blah day today too but part of it wasn't really to do with GI stuff. Something interesting though...my appetite seems to be decreasing, which I can hardly believe (I always have a big appetite! Ha!). Not complaining, would be nice to lose weight and get *something* good out of this. I got a mouth sore (canker sore?) tonight. I get them occasionally but not often. I got a few recently and only now realized they were all since this flare started. I don't want to start self-diagnosing here and get caught up in every little thing that might be related/a symptom, but...you know...it fits...

That's a really good suggestion Cat (re: asking for some symptom relief meds). I didn't think of that. Here in Russia they are heavy on the alternative medicine :p They obviously have and use Western medicine, too, but they use a lot more natural remedies than in the US. Not sure what she'll give me but it's worth asking if I get really desperate.

And oh gosh yes my mother is wonderful. I don't know how she puts up with me. I wish I were better at actually showing her how much I appreciate her...I feels like too often I somehow end up showing the opposite instead. Aw :-/

---

Rose, good luck tomorrow with the flex sig! Here's to hoping you get some answers. I 100% know how you feel, though. That's probably my biggest fear for when I get home...finally getting to the doctors and them not finding anything at all. Crohn's is a sucky diagnosis but I'll take that over no diagnosis any day. It's difficult. I'll be keeping my fingers and toes crossed for you [and hey, my intestines too, since they feel crossed and twisted anyway]! LOL.
 
Happyballerina, just a thought - perhaps you could explain a little more about your symptoms to the nurse and ask for some medication for symptom relief (Zofran for nausea, Lomotil for diarrhea, etc). At least then you'd be a bit more comfortable until you can get back to the US and pursue a diagnosis and you likely wouldn't end up in the hospital. Obviously meds like that will only take care of symptoms and not the underlying illness itself, but hopefully something like that would be enough to get you through the next few weeks. I'm glad to hear your mother is so supportive and is contacting your doctor at home about this. I hope the next few weeks aren't too awful and that you can get things figured out quickly once you get home!

Rose, refresh my memory, have you already had a colonoscopy? Flexi-sig is not a useless test, but colonoscopy is much more thorough. The benefit of flexi-sig is that, as you said, they can do it right there in the office. But it doesn't go in nearly as far as colonoscopy does so they won't see as much. If you haven't yet had a colonoscopy, particularly if the flexi-sig doesn't find anything, I would definitely ask them to schedule a colonoscopy as well.

Leanne, I wish I could answer your questions, but I don't know much about parasites. And without knowing the name of the parasite, I can't even google it for you. I think you need to call your doctor and ask a lot of questions, like what is the name of the parasite, why would it stay in your body for so long, what symptoms can it cause (is it likely causing your current symptoms), what is the treatment for it, etc.

How's everybody doing today? I'm kind of bleh. I had a good day yesterday, but today it feels like yet another migraine may be starting and I am also feeling a bit nauseous. I'm so sick of having chronic migraines! It's a side effect of the Entocort that I'm currently taking, so I need my guts to hurry and heal so that I can get off the Entocort and stop having so many migraines. Ugh.

Yeah I was just overwhelmed, I will phone the gp and hospital tomorrow, because I still don't have a letter from hospital. But if the parasite is causing my symptoms, then he has been in my body for nearly 2 years...
But thank you!
 
Blegh. So I started taking Metamucil on the 1st i think..and the next day i woke up only had to go two times...and it didn't cause any bowel pain..later that day i ate and I got the pains again... but i normally have terrible pains in the morning while going to the bathroom also before i go and after... Since its been getting progressively worse and today id say I'm back to normal.... I don't feel sharp and I haven't even ate. Im just really wondering if My body got used to the metamucil or if the metamucil backed my up and made me not go as much the other days... does this make sense? I was so happy not having the many bowel movements a day stop for like 2-3 days.
 
Thanks guys but i already had a colonoscopy... so this test is pretty much useless, its not going to show anything because the colonoscopy would have done, its just a waste of time from a new GI who probably couldnt be bothered to read my notes so is making me undergo this when i really struggle with these tests with pain and it makes me very crampy and puts me in 10x as much pain from the air they pump into you -_- i cant take it anymore :( i've got to go to work in the morning aswell which is fabulous -_- i just cant do this anymore :(
 
Rose, often times new doctors like to re-do tests that you previously had done by a different doctor. It's not totally useless - it's good to get a new set of eyes on your case, maybe they can see something that was missed the first time around. But yeah, flexi-sig does seem rather worthless if you've already recently had a colonoscopy. Can you talk to the doctor about your pain & symptoms that arise from having these tests? Maybe they can pump in less air or be more gentle with you. Ugh. Well, I hope the flexi-sig finds something because you really need some answers! :(

Stevi, I take psyllium husks. Psyllium is the main ingredient that's in Metamucil. However, Metamucil contains other ingredients too that can sometimes cause cramping, so that may be the cause of your current symptoms. Also, if I'm remembering correctly, it took me a few weeks at least for my body to get used to psyllium, I did have some cramps for the first few weeks or so. And if you take too much then it can cause cramping, gas, pain, etc. How much metamucil are you taking? My psyllium container says to take 2 tablespoons each day, but that'd be way too much for me - that much fiber in one day would hurt! So I take 1 tablespoon per day (I had started at 1 teaspoon and worked my way up to 1 tablespoon). So, my advice is to think about switching from Metamucil to an organic 100% psyllium (they sell it at Whole Foods or you can get it online or in other health food stores) as that should make you cramp less, and also try lowering the amount you're taking to start off with. Hopefully that will help.

Leanne, let us know what your doctor says about the parasite. I'll be interested to know what it is. I hope there's a good treatment available for it, too. Good luck!

Happyballerina, sometimes I get nausea with my migraines and sometimes not. I get nausea fairly regularly anyway so I always keep Zofran on hand for it. If you can only easily get natural remedies over there, then things like peppermint and ginger are good for nausea. Ginger can help a little bit with diarrhea too although it's not going to do a whole lot. Oh, and peppermint should be avoided if you have GERD/acid reflux (it "relaxes" the entirety of the digestive tract, which sounds good, except that it relaxes the valve between stomach & esophagus, which allows more acid to come up the esophagus). You can drink peppermint or ginger as teas, or you can get them in capsules - so those might be things to try if you can't get "Western" medicines easily.
 
hey guys I got my test results. I do NOT have HIV. I think the uni has got off lightly with this whole thing. Im still really angry that someone could work there for 8 years and put us all at risk of nasty things. The uni have got out of it by saying she was a contractor, so they weren't liable for her training, which sounds fishy but nevermind.

In other news im back at the consultants in June. I also have my last day of uni on Thursday. then I have a reading week, then 12 weeks of placement, then Ill be a qualified nurse! Scary times lol.

Rose, sometimes when they do a flexi they see more cos they have more time to look at less bowel if that makes sense?

Leanne, this parasite thing sounds really interesting, although im sure its not so fun for you, if you can find out anything from the docs let us know, we may be able to find info or may know stuff about it.

Happyballerina - whats Russia like?

Cat - Hope your migraines go away, or you get off the entocort soon
 
Thanks Cat ... Im not taking too much ... but I ended up going to the bathroom like 9 times so far today...So i think thats the main cause for my pain... just going to much... I will switch over to organic... i prefer that anyways.
 
Thanks for the support guys :) just feeling like nothings going to come from any of this and thst it'll end up being another test with no answers :/ also, anyone know how long an enema takes? I'm having a real struggle going to the toilet last 2 days because it feels like something is blocking it coming out and is causing SO much pain but when it finally does come out its still D. I'm not sure what it is but its making every trip to the toilet almighty painful! :(
 
Rose, it's possible to have a partial blockage where it's like a hard poo plug and diarrhea flows around it. Particularly with the terrible pain you mentioned, I would suspect a partial blockage. Ask your doctors about it ASAP or get to a hospital to get it checked out - I know A&E is not always helpful with chronic illness-type stuff, but they should be able to help with an acute issue like a partial blockage. Good luck hun, I hope it clears up soon so you can feel somewhat better! Let us know how you're doing and how the flexi sig goes.

Akiva, I'm glad you're in the clear on the HIV thing, and I agree, it does sound like the hospital is making excuses to get off lightly. Good luck with your placement, I'm happy to hear that you're almost at the finish line and are about to become a nurse! :) I promise not to bombard you with too many medical questions when you're a nurse, ha ha.

Stevi, yeah, organic psyllium husks are supposedly a lot better for you than non-organic. Apparently they use a lot of pesticides on the non-organic, plus like I said Metamucil has other stuff in it too besides psyllium and who knows what's in all that filler stuff. 100% organic psyllium husks, I think I pay about $11 for a big container that lasts quite awhile, so it's not too bad at all. Hopefully it'll work better for you than metamucil.

How's everybody doing today? I'm a bit better than yesterday, still feel like I'm on the verge of a migraine but I'm not so nauseous today and I have a bit more energy. I'm not great but I'm not bad either.
 
lol you can ask me as much as you like, I can access a lot of research papers and journals at the moment so I can usually find answers.

I had a bad day sunday, but been having a good few days now. Just got back from driving lesson, it was a mock test, and I would have passed :) So quite a happy bunny.

Hows everyone else?
 
Well just got back from the flex sig, inflammation in my rectum but everything else looked 'ok' got to go ask my GP for 'mesalazin supposotory'? I dunno, she tried to explain it but i was in so much pain i couldnt concertrate. I am in the worst pain ever, i feel so poorly! I didnt even need the enema i had to do, it just came out as the fluid -_- fabulous, an unnessary enema that made me cramp like hell! God help me. Hopefully the biopsies will show something because that pain was a killer and it still kills now. Urgh :(
 
Roseanna - mesalazine is an anti-inflammatory that is similar to aspirin, but is specifically for GI inflammation. It comes in many different forms under different trade names and you need to get the one specific for your problem and stick to that. So, if you have rectal or lower large bowel inflammation you tend to use suppositories/enaema and or foam. Small intestinal inflammation uses a different one, and general inflammation a different one again. I take 'Pentasa' which works throughout the GI system and is great for small intestinal inflammation - its a pain but it should help you. Also, I know it has been said, but get them to make sure you don't have a blockage/constipation - you can get what is called overflow diahorrea (so you dont realise its actually a constipation issue) and is causes horrific pain (and if it becomes total blockage then can be life threatening). Also - have you rung the help with healthcosts people and explained your problem to them? They helped me when I had probs getting the right info for the cert a couple of years ago. Don't give up :)
 
Here is my story. I am sixteen years old, and ever since I was around eleven years old, I have had Crohn's Disease symptoms. My mom took me to the gastroenterologist years ago. They didn't give me medication, a diagnosis, or any testing. Fast forward a few years... my fourteen year old brother just got diagnosed with Crohn's in the summer of 2013. He never complains and after he got random, frequent fevers, and stomach issues, my mom got worried. Lately, my symptoms have been horrible. Diarrhea most of the time, sometimes constipation, burping, nausea, low immunity, mucus in my stools, stomach pains, bloating, and mouth ulcers. In February, mom took me to a new gastroenterologist. With my brother's diagnosis and my symptoms, he wanted me to have a colonoscopy and upper endoscopy. On Monday, May 5, 2014, I had the procedure done. My GI said everything looked good except one area of slight inflammation. He took a couple biopsies, and I am currently anxiously awaiting results. If everything comes back negative, I am going to request the pill cam. A lot of people in my family think it's just IBS, as I suffer from bad anxiety and a debilitating phobia. I don't think it is IBS because when I first started developing symptoms, I don't recall being too anxious. Also, my symptoms don't go away when i'm not anxious. When I am more anxious than usual, my symptoms do not exacerbate. Also, my CRP was a bit elevated. I am very nervous.
 
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