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Not to complain or feel sorry for myself but I feel like if I write this here you guys will know what I'm talking about..
I'm getting ready to go out with some of my friends and I'm putting on make up (it's been a while lol) and while I'm doing it I find I have so much to cover up... Like I look tired and I feel like I just look sick. I definitely never used to look like that 😒 meh sorry to complain just felt like I needed to share that with someone
 
Ok, i need some advice from anyone in the UK, how have you managed to get appointment waiting times down? I have just recieved a letter with my appointment date, 2nd July!!!! I cannot wait that long as there is no chance of me getting back to work full time until i've been given help and i am in so much pain and there is nothing the GP will give me now. I cant cope until July, its just not possible, its hard enough as it is! Urgh i HATE the NHS waiting times!
 
I havent got the direct secetary as i dont know who im even seeing, on my letter they have put Dr L Gasteroneterologist.... thats useful! I only have the appts line, they wont care, i've tried them before. Bit stuck with knowing what to do.
 
I know and it makes it irritating as i have no contact, i think i'm going to ring the hospital and get a number for any of the GI secretarys and hope they will help. If they wont i'll almost 100% lose my job as they wont have me working part time for that long!
 
I guess I don't realize how lucky we are here in the US! I called to get an appt with a new GI @ Mass General Hospital and got an appt in less than a month!! Hafta scurry to get all my 20+ years of records!!! Hopefully all get there in time.. As the GI doc wanted time to review all of my records! May take em a week to do so!!! Lol anyways.... I was lucky enough to get scheduled with the chief doc who has been in the forefront of the new study they did with the research done on microbes present in the gut of Crohn's disease patients!! Hopefully I WILL get answers this time!! With my very first surgery in 1999 I was diagnosed with a yersinia bacterial infection which is in the family of microbes found in Crohn's disease!!! New hope for me for a diagnosis!!!
:rof:
 
akiva said:
I've been crap :( I had an exam tuesday, driving lesson Wednesday and I had to take a lot of immodium to make sure I definitely dont have an accident. Anyway thursday was not fun due to that. Had painful night. Been upwards of 15 times. Not fun. Feeling really rotten and im supposed to be going for a meal tomorrow. Ordinarily id cancel, but I cant, some have come specially from miles away, and its my birthday meal, cos its my 23rd birthday tomorrow. Not happy today.
Hows everyone else?
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Happy Birthday!!!!!! May cramps and D never come your way.:)
 
Rosannakate if you go back to your GP and they assess you as being unwell they will call and get appt pushed forward.
 
Well i don't half feel rough today, had a really bad night and day. I ended up having a fit in the middle of the night and was completely alone which was pretty scary. Been exahuasted all day too as was so scared to go back to sleep. Think i need to go back to the GP, probably should have gone to A&E last night but i couldnt get there and didnt want to phone for an ambulance really. I'm a bit like unless im on my death bed i wont make a fuss, but i'm really having a tough time and its getting harder. Wish i was getting a bit better :(
 
RosannaKate said:
Ok, i need some advice from anyone in the UK, how have you managed to get appointment waiting times down? I have just recieved a letter with my appointment date, 2nd July!!!! I cannot wait that long as there is no chance of me getting back to work full time until i've been given help and i am in so much pain and there is nothing the GP will give me now. I cant cope until July, its just not possible, its hard enough as it is! Urgh i HATE the NHS waiting times!
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I'd there an ibd nurse connected to your hospital, if there is try calling them as they can speak to drs on your behalf who may then decide to see you earlier or sort medication out for you, it's worth a try. Hope you get some relief very soon.

Hello everyone, I haven't been around (i explain in the case givers thread) and it's been really difficult trying to keep up but please know you are in my thoughts and I wish you all better times. Take care and I hope to be back soon I miss the support and friendship from you all.

Got my mri result on 26th Feb, no scarring found so no surgery required which was not what I was told to expect, instead I've done a feacal calprotectin and find out what that shows on the 7th Apr then more than likely will start on a trial of methotrexate, which I should have started 5 months ago but didn't cos a Dr told me I had scarring, it's so frustrating I could have screamed.

On a happy note I'm looking forward to going to Paris at the end of Apr to celebrate my silver wedding anniversary :).
 
Rose, you said you had a "fit" - I'm not quite sure what that means, are you saying you had a seizure or convulsions? If so, you really need to get to A&E. With everything else you've had going on, this really needs to be checked out! Call your doctor, tell them what happened, and ask if they can contact A&E to let them know that you're coming and what's going on and that you may need to be admitted. Hopefully that will circumvent the long wait time. This sounds like a new symptom, and my GI says new symptoms should always be taken seriously and checked out - please, please get yourself to A&E as soon as you can! Worried about you! Please update us later to let us know if you went, and what the result was.

Lizbeth, I read your recent post in the caregivers thread - poor thing, that sounds horrendous. Please try to take care of yourself in this difficult time. Good luck with the methotrexate, I hope it works wonders for you.

Akiva, I hope your birthday meal went okay? Hope you were able to have a good birthday!

Cindy, good luck at Mayo tomorrow!! Please update us here or on your caringbridge page if you're able to.

Chuckmya, getting an appt in less than a month is really good even for the US. My GI isn't a top rated anything and it takes about 3-4 months to get a normal appointment with him (if I'm in need of being seen ASAP then he can usually work something out to squeeze me in within a few days or a week, but that's only if I'm flaring terribly and need help right away). My worthless rheumatologist was the same, about 4 months for an appointment. I can usually see my primary care doc within a few days or a week, maybe 2-3 weeks maximum if he's pretty booked up.

Paches, I don't wear makeup but I know what you mean, the illness definitely shows itself on my face. In a flare, my face will often go totally pale. Like there's no blood in my face at all, white as a sheet. I've scared myself in a flare in the past when I walk past a mirror and see a frightening totally white face... and then I realize it's me! I get huge dark circles under my eyes too. And when I'm on certain meds or anytime I switch meds, I break out in acne (I'm 34, I should not be breaking out in acne like I'm a teenager!). They call things like IBD "invisible illnesses" but with the weight loss and the face paleness, I've always thought it was obvious from my physical appearance that I am sick. It doesn't seem so invisible to me.

How's everybody doing today? I'm okay, I'm recovered from my minor food poisoning incident. It's supposed to snow tonight so my bad hip is acting up a little bit yet again. I'm still considering going back to physical therapy for it, I just don't know. The tummy is okay for the moment so all in all it's a good day. My financial situation may get slightly better soon, too. Hubby finally has it in his head that he does indeed need to look for a job, any job. He's mentioned that he's going to apply for a job at "somewhere like Home Depot" so that's a good thing. He may still be able to find a job in his field (art & animation), he still has one long-shot prospect there, but he's agreed to get a "regular" job for the time being. Phew! I've only been begging him to get a job for the past like 3 years now, it's finally happening! It's been rough being ill and being the primary breadwinner. Him making some money will take a big burden off of my shoulders. I'll still work of course but I won't have to worry about bills & finances quite so much.
 
Hey, i was uncontrollable shaking and struggling to breath... i can't get to a&e and its not emergency so no point in me calling an ambulance out. I spoke to my GP earlier and hes going to run more tests tomorrow, its all a bit difficult with no support because getting to a hospital 40 minuted away isn't an option for me. I cant do anything but speak to GP, and even then i struggle to get to the surgery. I have no options right now, i'm in pain and there isnt anything they can give me. The chest pains i'm getting are getting worse but i guess whatever tests he does tomorrow might outline something and i'd say its more likely to be my heart than stomach with fit like symptoms, although beggining to wonder if all might be linked as all my immune system seems very low right now. I guess it's just pushing on right now

Had a bad day today, feeling yucky and have a huge headache :(
 
:ybatty:cat you definitely said it perfectly... for a while i thought maybe i just needed a little extra sun.. then again some warmth would probably be nice anyways ;)

today was okay, i had classes and i'm studying now at home. its kind of hard to focus on anything though because my colonoscopy is this sat. and i'm super anxious to get it over with and hopefully have some answers. until then i'll be convincing myself i'm not going nuts
 
Paches, sunlight can actually help, in terms of getting vitamin D anyway. I wouldn't recommend tanning your face though! But yes, warmth would be nice. It's snowing for like the ten thousandth time this winter, ugh ugh ugh so sick of it! We'll have one day where it's almost spring-like but then it goes right back to being winter again. :p

Good luck with your colonoscopy! What prep will you be doing? I presume this is your first colonoscopy? Make sure the doctor knows to take LOTS of biopsies! I'm sure I've said this before, but some things can ONLY be diagnosed via biopsy (such as microscopic colitis). Good luck, and let us know if you have any questions or if you just want to vent about prep. Prep isn't fun, for most of us it tends to be the worst part (inducing diarrhea when you're already having diarrhea seems so wrong!) - for the scope itself it just feels like you've had a nice nap, you wake up feeling refreshed and should have no memory of the scope, so that part is easy peasy. Anyway, I'm rambling, but good luck! I hope it gets you some answers! Oh, and you are not going nuts, I promise!

Rose, shaking uncontrollably and having a hard time breathing sure sounds like an ambulance-worthy emergency to me. If it happens again, please call for help? That's so scary that you went through that, and how terrible that you're this poorly but your family is still unsupportive. :( I'm glad you're having more tests done tomorrow, and obviously make sure to tell the doctor about the shaking and breathing thing if you haven't already. Good luck tomorrow, I really hope they figure something out to get you on the mend!
 
i believe i'll be doing suprep, because i told my doctor that there is nooooo way that i can drink that whole gallon jug of water haha. i work in a pharmacy and every time i dispense it it's just mind boggling that you have to drink that much in that little of a time...
but yeah i'm definitely looking forward to the nap (i know that probably makes me seem a little deranged) and yeah, prep will probably be a pain in the butt (LOL) and honestly it seems kind of cynical that i have to prep for it... AS IF i don't have enough D :eek:utahere:
anyways, is anyone else supposed to get SNOW tomorrow?!?! for the thousandth time this winter?!?!?
 
My dilemma is, unless im on my death bed you have to drag me kicking and screaming to hospitals. I hate those places big time! I'm just being ignored by my family now, useful! My GP had a bit of a rant telling me not to leave it all so long. Although no luck on getting him to help push consultant forwatd. Work have come up with a plan to get the occupational health manager to write to them and try to push it! Had no luck with the hospital myself -_- grrrr!! Hope the heart isnt too serious though :(
 
RosannaKate,

ring your local hospital switchboard and ask to speak to the secretary of the dr named on your hospital letter - might get you somewhere. Otherwise, unfortunately it sounds like a trip to A/E. I know this is not what you want to hear, and I agree, unless it is an emergency then A/E is not the place, but you don't want it to get to being an emergency and you seem to have explored all your other avenues. I ended up in A/E a few times for I got to see gastro team (partly because I was ill at work and A/E is part of my workplace and colleagues booked me in), but it literally saved my life as on the last A/E admission I was found to be dangerously dehydrated - had I not gone to A/E then I would have continued to deteriorate to the point of complete collapse (and my hamster isnt great at calling for help). I don't want to scare you, and I am definatly with you on going via GP etc...but if you have no where else to turn, please consider A/E. :)
 
Hi Madmouse, glad to see you've found this thread! We're all in the same boat here. :)

Rose, even though you said you don't want to go to A&E unless it is a dire emergency, it sounds like it's well on its way to becoming a dire emergency. Not being able to breathe properly could become life-threatening very quickly! I agree with what Madmouse has said, you need to find a way to get to A&E. If that means calling an ambulance the next time your symptoms get bad like that, then so be it. Perhaps your family will be a bit more sympathetic too if they see you being taken to the hospital in such a dramatic way? Or hopefully they'd be more open to taking you to A&E in the future if they saw that you were pushed to have to call an ambulance?

Paches, it's not weird to look forward to the colonoscopy "nap" - you have to have something to look forward to, especially when you have to go through the nastiness of prep! It is nice that at least the worst part (prep) is over with first, then you get the nice nap and then you can eat again. :D

How's everybody doing today? I'm okay. It snowed this morning and I was miserable then, but then it stopped and the sun came out. My arthritis seriously cannot deal with this weather anymore, if it snows one more time I'm going to move to the equator. :p Maybe not but I'm so sick of it! My guts are okay-ish right now but the arthritis is just not dealing with this never-ending winter.
 
today wasn't too shabby! we didn't get the snow that was supposed to come, and i found out i got a b+ on my med chem final :) (i was expecting a much worse grade so i was super happy.) other than that, my lower back has been pretty achy lately and my heartburn seems a little worse, but nothing too bad in the whole spectrum of things. trying to study a lot this week because i think i'll let myself rest this weekend..

rose - i'm sort of under the impression that going to the doctor is slightly different in the UK? my gastro is so good with seeing me on a limited schedule and my schedule is always limited because i'm at school. wish i knew more about things over there so i could help :/ or at least kick a few doctors in the butt for making y'all wait.
 
My problem is i dont even know who im seeing so i dont have a way to call a secretary as i dont know who for. It a bit annoying.
Cat, i think even if i phoned an ambulance my family would just tell me im over exaggerating -_- i'm sick of being told its in my head and im fine, i dont need medical help quickly. Its annoying. So i just know my mum would tell me im wasting their time.
Thanks for all the support guys :)

I've had a bad few days, so feeling rough. Only got 2 weeks part time left at work so dont know what to do :( take it.as it comes i guess!
 
RosannaKate said:
My problem is i dont even know who im seeing so i dont have a way to call a secretary as i dont know who for. It a bit annoying.
Cat, i think even if i phoned an ambulance my family would just tell me im over exaggerating -_- i'm sick of being told its in my head and im fine, i dont need medical help quickly. Its annoying. So i just know my mum would tell me im wasting their time.
Thanks for all the support guys :)

I've had a bad few days, so feeling rough. Only got 2 weeks part time left at work so dont know what to do :( take it.as it comes i guess!
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I don't know if I've said this to you before but try out of hours, preferably in the early hours of the morning. I have been admitted to hospital bypassing A&E entirely based on pain/vital signs alone.

In my experience A&E are pants at pain control etc or getting anything done. They're really there if your life is in danger. Out of hours you are seen by a GP who has a lot of time for you and can administer pain relief. I have been a few times over the years and have always been treated really well.

I'm having a mini flare. First sign of blood in about 6 months :( And I'm having a lymphoma scare... again! I don't feel really ill or anything, I'm not in a lot of pain, I'm just so damned sleepy and have had night sweats all this week, yuck.

Cat I'm glad your hubby has agreed to finally get a job! Perhaps taking some of the pressure off you will improve your health further. I know stress doesn't cause what we have, but it damn sure doesn't help!
 
Hi guys,
I just wondered if anyone has any ideas for pain relief or can point me in the direction of a more appropriate thread? I am having issues with abdo pain, and following my most recent hospital admission (turned out to be severe constipation rather than a worsening flare) I have been taken off tramadol, leaving me with paracetamol only. I have been put on amitriptyline, which isnt yet helping with pain, but is allowing me to sleep, which is great! However, pain is still an issue, and now I dont have anything to fall back on. I asked the Dr and was told 'be patient' - helpful, thanks!
 
Madmouse, generally speaking, I have heard that GPs are much more likely to dispense pain meds than GIs are. But as you're discovering, a lot of doctors don't like to dispense pain meds to someone with chronic illness because of the risk of dependency/addiction. Many doctors feel that pain meds are for acute illness/injury for a short-term basis only. I can tell you that in the 4+ years I've been ill, the only time I've been offered pain meds was when I was in a minor car accident and had whiplash - nobody's ever given me pain meds for my gut issues nor for my arthritis pain. I realize that's not very helpful, but my point is, it may be difficult for you to convince a doctor to put you on medication for chronic pain unfortunately. Your best bet may be to ask your doctor to refer you to a pain management clinic. I've heard mixed things about pain management doctors, but they may be slightly more helpful. It's something to look into anyway.

lsgs, yes, I'm still kind of in disbelief that hubby's actually finally going to get a "regular" job! He said that's what he's going to do today, he's going to go to various places and put in job applications. The funny part is, his boss at the costume shop finally got back from travelling, and she offered to hubby that he could start working 2 days per week instead of one and she even offered to pay him a little more (total coincidence too as he hasn't told her yet that he's looking for a different job). But 2 days a week is still not enough and he's going to go look for full-time work elsewhere anyway. I really hope he finds something quickly. Our finances are not great (particularly with all my doctor bills, prescription costs, etc) so him working full-time hours at any job would be a major help!

Oh, lsgs, a lymphoma scare sounds horrible! :( I hope it's nothing or just a mini-flare or whatever and that it isn't lymphoma. Hang in there and I hope you feel better soon.

How's everyone else today? I had kind of a rough night, I ate a safe dinner but my guts didn't like it for whatever reason and I ended up having a lot of d and some cramping. I nearly overslept this morning and I just feel kind of bleh. My arthritis pain has eased up for the moment but it's supposed to rain all day tomorrow so I'm expecting a lot of pain then. So yeah, just kind of a meh day today.

Oh, has anyone heard from Cindy? She should be at Mayo having tests & seeing doctors by now. I haven't seen any updates from her on here nor on her blog nor on facebook, so I'm slightly anxious for her, but hopefully she's just busy having tests done and hasn't had a chance to update us. Cindy, if you see this - thinking of you, thinking happy thoughts for you, fingers crossed that you get some proper answers, and sending a big virtual hug your way!
 
RosannaKate - there is private care in the UK if you really cant wait til july. it is not as expensive as some costs ive heard of in the US.

the reason there is no name of a particular gastro doc is because it is a clinic day, there is a main consultant who has many gastro docs in his/her team. you should be able to call the gastro dept at the hospital and check for cancelled/earlier appointments. I was able to do this at mine.

i must point out.. that yes the 1st appointment normally takes a while. but once you have been seen, it wont be as long a wait for follow ups. i really hope you can get seen sooner, as it is rubbish the waiting times. sending you big hugs! :hug:
 
lsgs - sending you big hugs too :hug: what are they doing about the lymphoma scare? :(

cat - how are you lately? im off sick today.. fever all night last night. ugh. i have just started on the wards at work.. guess i should have predicted that being more susceptible to illness and being on gastro and surgical wards aren't going to end well haha!
 
Hey everyone. I'm here!
It's been kind of crazy lately. I spent last week trying to get med records together, fighting with long-term disability, and all that kind of stuff. I'm in Rochester, MN now, settled into my hotel. Yesterday I had appointments from 7 in the morning until 4:30 in the afternoon and was just exhausted. So after one appt this morning, here I am!
I've missed you all, and sorry for my extended absence. I'm hoping to get answers to both my belly problems and the memory/cognitive stuff I've had going on.
I have a barium CT series this afternoon. This GI seems really good, he spent a long time yesterday really listening to me, asking lots of questions. I have an EGD this Friday. The lab drew 11 vials of blood yesterday too. I met with a dietician yesterday too.

I really felt pretty horrible when meeting with him because Sunday like an idiot I decided to eat some popcorn! which I know is not good for me, I was in terrible pain from then til yesterday.
With all these tests and such I can't eat half the time this week . So I imagine I will lose weight again. The doc wasn't too worried about my current weight but said don't lose anymore, which was why he wanted me to see the dietician. My diet is too low in fats, but they give me diarrhea and pain, so she wants me to add in a tsp of olive or canola oil per meal 3 times per day to see if I can add in calories that way, plus a hard boiled egg each afternoon. we'll see how that goes. She wants me to shoot for 2000 calories per day. Plus she, the GI, and my brain doc all told me to start back on my elliptical (I had stopped for a week cuz of the weight loss) because they said the exercise is really important for both my belly and my brain. So I'll have to eat back those calories too.
I've missed you guys!

rose, I'm so sorry to hear you have to wait so long to see someone. maybe if you call everyday and harass the docs, they'll move it up?
 
Hey Bozzylozzy, this isn't my first appt unfortunately, i was seen within 3 months originally, ever since its 5 or 6 months! So getting very annoyed! I am only 17 and couldnt afford any private healthcare if i tried, i have no support from family and have no money left at the end of the month as it is, so no chance of using the private healthcare offered in the UK! :( Thanks though hun!

Cindy! Good to hear from you! I hope your doing well with the tests and this week isnt too harsh on you! Good luck and i hope you get some help with it all! I am trying with the hospitals but its a long process, hopefully someone will help me soon!
 
Oh no! :(
When you say no help from family.. does that include your mum and dad? I havent been on here for long time.. so sorry if you've said it all before, but have the gastro team even offered a colonoscopy? X
 
Cindy, thanks for the update! I hope it all goes well. Is the barium test a barium enema or barium swallow or both? I haven't had either but I hope whatever test you have is not too yucky. Are they going to do scopes and/or any other tests too? I'm glad to hear you've been given the green light to go back to exercising, I know it's something you enjoy doing and it sounds like the pros outweigh the cons. Are you doing squats and lunges in your hotel room? ;)

Hi Bozzy, nice to see you around the forum again - sorry to hear you're sick today, but hopefully it's just a virus that will go away quickly without making anything flare up. I'm doing so-so lately. I'm back on Entocort but just the lowest dose (3 mg daily) to try to get my mild-ish ongoing symptoms under control. I am still having good and bad days, although I think the Entocort is helping as it's been nearly 2 months now since I've passed any blood, and I'm not having as much d. My bad hip has been crazy painful this winter though, it aches anytime it snows or is bitterly cold, and we've had a very snowy & horribly cold winter. So that's been pretty bad and I'm thinking of going back to physical therapy for it - not sure if that'll help, as I've still been exercising as often as possible, so I don't know what more PT could do for me, but I'm trying to keep an open mind and I don't really have other options left for my hip (steroid injections made it sort of better for a little while, but the injections also gave me awful side effects and I don't want to go that route again). So yeah, that's me in a nutshell. Fighting the good fight every day. How are you besides being ill and working in a hospital? Classes still going okay? How are your guts and your joints doing? Your little girl is adorable BTW, I always say "awww" when I see her pictures on your facebook (it still doesn't make me want kids of my own though, ha ha).
 
Yeah pretty sure its a virus. Ive been steady on sulfasalazine.. im only on 3tabs per day 1.5g.. which is lower than standard treatment. This is because I had pains I my upper bowel with it. I might ask to go up to 2g per day again.. but spaced more evenly, breakfast, lunch,, dinner and bed time.. rather than 2 in the morn and 2 at night. I want to go up because I keep getting breakthrough joint pain.. but bowels are calmish.

glad the bleeding has eased up cat but im sorry to hear that your hip is still so bad! Maybe something like sulfasalazine would be gold for you?

Classes are going well getting merits and distinctions in my assignments! I hate not spending as much time with my little girl though :( by the time I qualify.. she will be starting school!! Cant believe it. Time is going so fast x
 
Bozzylozzy, i have had endoscopys, scans, blood tests, pill camera... everything they could throw at me. Can't find a diagnosis, all i have to go off is that i have 'slight inflammation'. I do mean my parents yes hun, my dad left years ago so have nothing to do with him and my mum is no support, she just tells me she wants me out because shes sick of me being ill and stuck in the bathroom when she wants to use it, even though i cant help it. I have no financial or mental/physical support and am completely alone in my own home, which i pay to live in!! I want to move out, but i can't afford it, which is hard. Not much i can do right now though! :)
 
Hey guys,
my hips are agony, my right one was so painful on Monday night, I got stuck on the sofa and couldn't get off for 4 hours. I eventually managed cos I got *that* feeling and I knew if I didn't move sharpish I was gonna be in a real mess. got to the loo in tears cos of the pain, then got stuck there for an hour or so. Took several cocodamol, which helped.
Anyway aside from all of that ive got my next hospital visit tomorrow. Im apparently going to finally meet the consultant

Please can u lot give me things to say/bring up?
I've got;
- list my symptoms
- Frequency
- Blood/Mucus
- Diarrhoea
- Hip pain
- Rashes
- Pain, left lower, right lower and just above belly button
- Night sweats
- Wake in the night wih diarrhoea
- why I think its not IBS
- pretty much state the above, plus why did I respond to steroids, why didn't mebeverine work?
- pills I am on
- immodium
- femodene (pill)
- tramadol
- cocodamol


Is there anything you can see ive missed?
Also is there anything I should ask for? tests or treatment?

(ive had colonoscopy and calproctin tests but I was on steroids for the poop test, and only a week and a half off steroids when I had the colonoscopy)
 
RosannaKate, I know its a bit extreme, but try and get yourself on the council housing lists. At least then you might get a chance of a flat etc. (youll be waiting a while, but worth a shot) also any landlords that would accept housing benefit you might be ok, I don't know.
Im lucky as my family on the whole are supportive
 
Bozzy, that's something for me to think about, possibly trying sulfasalazine. I might ask my GP about it the next time I see him. I don't think the Entocort is helping my hip at all - if anything, I think the hip got a bit worse when I started back up on Entocort. And my hip pain initially started back when I was on Entocort the first time, and my GI said that sometimes corticosteroids can induce arthritis, so yeah. I'm not sure if there's actually a connection between my arthritis and Entocort or if it's just coincidence, but it's not helping my hip at any rate. Once I get the guts under a little bit better control, well the weather should be warmer by then and maybe the hip will be feeling better just because it's not snowing every 5 minutes. :p

Rose, you should come to the US and maybe Cindy will adopt you. ;) Kidding of course, but sheesh, your home environment sounds so toxic and stressful. :( Is there any kind of government assistance you can get for disability or for low-income type housing, anything like that? Anybody else in the UK, can you help her out - have I heard of something called a "citizen's advice bureau" and could they possibly help her?
 
Akiva, thanks, you gave Rose housing advice just as I was typing my message asking people in the UK to help Rose with housing advice! :p You're good, you knew what I was going to ask before I asked it!
 
I actually work for my district council and have spoken to the benefits team as i'm friends with some of them as one has crohns, so she helps me with pain stuff alot, its fab when im at work doubled up in pain. However, as i am in full time employment i can't get on the council house list and the only thing i could get os single persons allowance, which is about £56 a week, even woth that i couldnt afford to leave home. I also struggle because im not 18 and no private landlord will take me. I have tried everything an come to the realisation that there is not a chance i will be able to move out in the next 18 months. Not good!
 
I agree with akiva and speak to your local council. The citizens advice bureau can help too.. they give advice on certain situations and what you may be entitled to.

that sounds awful what your mum is saying! And that you are paying rent too at 17! If you are college/6th form.. there might be ways to seek help there too. I had to pay for myself at your age, just food, school travel costs and clothes etc.. not rent. But still on part time wages, I found it hard and my college paid for bus passes to get me free travel.

let me know how you get on x
 
I am only at college 1 day a week, so they wont give me help, their councillor doesnt work friday so i get nothing. I can't afford everything i have to buy at the moment. Its all way too expensive for me. Need some help but i've looked at all options :(
 
Besides GasEx, rolling on the floor on your tummy, massaging your tummy and back, drinking ginger ale or seven up and sticking your bum in the air any suggestions to get rid of gas? My stomach is very distended and it's coming in painful waves. Almost like my very first pain when I went into the hospital. I almost prefer the cramps because it's consistant. These are a doozy!
 
Melibean, maybe try taking a short walk? Sometimes making my body move will get things moving through me. And personally, I would avoid things like ginger ale & 7up because the carbonation seems to just fill my guts with painful gas (the sugar in those kind of drinks doesn't do me any favors either). I hope you feel better soon, trapped gas pains can be really awful!

Rose, even with you being off of work right now you still can't get any kind of benefit like what Bozzy and Akiva mentioned? Could you switch permanently to part-time hours and then get some kind of benefit? I don't know how things work over there so I'm sorry that I'm not able to come up with better ideas. I wish there was some kind of good answer for your awful situation. :(
 
The issue is cat.. a lot of benefits in the UK are based on total income of a household. Because rose is living at home.. it will look at her mum's income. I have never had any benefit from the government except statutory maternity and statutory sick pay. So im not 100% sure on how it all works

Rose - Is there any friend you can stay with and offer to pay rent there instead? Or have you explained to your mum how you feel when she says things about your illness?
 
Melibean.. that is exactly how I felt before my hospital admission. The doctors said that was an attack of appendicitis (obviously not acute appendicitis).

If it is definitely bad gas.. then I got told its best to lay on your left side?
 
bozzy, yeah i heard it's best to lay on your left side because it helps move things through. idk if its a wives tale but i do it out of habit. who knows if it helps. good luck.. those kind of pains are the worst :(
yeah, i wish i knew more about the UK health system to help ya rose. come visit the states ;)
 
Rosanna - I'm really sorry to hear you are having such a tough time. It is incredibly hard when those around you are not supportive - have you been able to talk to your mum about this? I know its easy for us to say speak to her, but she may not realise how she is making you feel. We have all been there, feeling unsupported by those we thought would be there, but fear not - you are not on your own.
I know trying to get benefits/support is tough - I had a similar problem because I have no sick pay left, but was unable to get benefits as I had a full time job - I'm not quite sure how they expect me to pay rent and bills! Try Citizens Advice, make an appointment with your pastoral tutor at college and see if they can think of anything else.
And don't forget - rant away on here - we are not going anywhere :)
 
hi guys
massive hugs needed right now
went to the hospital put on amitriptyline, 25mg not bothered about that
my cat that lives with my mum isn't very well, hes not eating hes thin, hes sleeping all the time, hes just not right. mum took him to the vets tonight and they think its cancer, they've done some tests, but if it is they said its kindest to put him down. I know it is, but hes my baby, hes 14 this year, I thought I had more time with him. I cant stop crying.
 
akiva said:
hi guys
massive hugs needed right now
went to the hospital put on amitriptyline, 25mg not bothered about that
my cat that lives with my mum isn't very well, hes not eating hes thin, hes sleeping all the time, hes just not right. mum took him to the vets tonight and they think its cancer, they've done some tests, but if it is they said its kindest to put him down. I know it is, but hes my baby, hes 14 this year, I thought I had more time with him. I cant stop crying.
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Aww poor kitty. :(
 
Oh Akiva, I'm so sorry to hear about your kitty. That is heartbreaking. I hope it's not cancer. As you know I'm biased towards black cats too (my Lydia kittya is going to be 11 soon) and I don't know what I would do without my little black kitty. Sending you a big virtual hug from across the pond. I'm so sorry hun.
 
Hey guys,
Cat - It wouldn't make any difference to them if I was working part time, the only time they would help me is if I wasn't in any form of employment. They will give me single persons allowance in any case at the moment because of what I earn, but I don't have the rest of the money to put towards it and still couldn't go on the government housing system. I have explored every possibility with housing but there is just no way.

Bozzylozzy - I don't have any friends to go to. They all left when I got ill so I have no one to talk to right now other than you guys on here, which is useful! My mum is so unsupportive and doesn't listen when I try talking to her. So there isn't much point as she just makes me feel worse.

Madmouse - My mum won't listen no matter what I try. College won't help me until my mum phones them and says I need their help, which she wont even talk to me so fat chance of that. I have also tried citizens advice and been failed by all of them. Citizens advice just got to the same conclusion as me, I can't afford to do it in any way at the moment and I only earn £7500 a year which wouldn't go anywhere. They advised me to get a new job. That's just what I want to do, throw the apprenticeship and training down the drain and leave me with nothing. Fantastic.

I am caught in a loop hole and there isn't any help I can get except single persons allowance of £56 a week. So it isn't possible for me to live with what I'm on and the fact im on sick leave a lot at the moment means I'm not on my full salary as it is. So I just have to ride it out at the moment, even though its making me so much worse. There is absolutely nothing I can do.

So how is everyone today? I feel like my insides are being ripped out, ouchie! Painnnnn! So not at college which is irritating as I only went back last week. I need a new body, cant cope with this one anymore! The chest pains I get are horrendous and I'm struggling with the Beta Blockers they have put me on for my heart as they are making me really sluggish and tired. I don't think I can keep taking them if they continue to do this to me.

I have had no luck getting my GI appointment pushed forward, so right now I'm fighting a losing battle and really having the worst time with it.
 
Rose, you need a new stroke of luck!!! Sending plenty of good vibes your way today <3 <3 I'm sorry if I can't say much I just really really wish I could help.. But I have no idea how :/
Here it is, PREP DAAAAAAY! I was a little bit of a nervous wreck yesterday for sort of no reason at all, but thankfully I'm a little less crazy today haha. The anticipation really got to me.
Thankfully one of my very close friends from school lives 10 minutes from my home in New Jersey and happens to be going home today also, so I'll be able to hitch a ride with her instead of taking the train. Thank god because I was pretty nervous about getting dizzy on the subway since it's always packed and I wouldn't be able to eat. Other than that I'm excited to see my family.. My dad's birthday is tomorrow and my moms was Sunday so I have their presents and hopefully they like them. I'm actually looking forward to being home. Then again well see how I feel later on in the day. Haha.
Hoping everyone has a wonderful day!! I'll definitely be bored out of my mind an keeping in touch today!
 
Paches, good luck with prep! If I understood your post correctly, you're going to school this morning and doing the liquid diet thing, and then when you get home you're drinking the prep itself? I'm just making sure, because you do NOT want to be far away from your toilet when you start drinking that stuff! Sometimes it takes a little while to kick in, but when it does kick in, holy cow - you don't want to be more than like 20 feet away from your bathroom!

Since you'll be out and about before prepping, make sure you've got proper supplies - if you haven't already, get yourself some nice bum cream (I prefer Calmoseptine, they carry it at Walgreens behind the pharmacy counter) and wet flushable wipes. You may get pretty sore back there so wipes and cream will go a long way in helping you feel comfortable. Last time I did prep, I was all about making myself comfy. I got some scented candles, I had my ipod on a dock in the bathroom playing nice music, I had a nice bath in between potty trips, etc. Prep isn't fun, but it can be a good excuse to pamper yourself a bit since you're going to be in the bathroom a lot anyway! Oh, and don't watch TV (stick to DVDs/Netflix) - when you haven't eaten all day, seeing commercials for food/restaurants is like a special kind of torture. I don't even like Red Lobster, but their commercials make the food look amazing, and I swear those commercials are on constantly whenever I prep! :p

Rose, I wish there was some way for you to get out of this awful situation. I remember Astra saying once that she needed medical help and wasn't getting it, and she went to A&E and ended up throwing herself on the ground and just screamed until someone helped her! So I guess that's always an option, if you feel like your doctors aren't doing enough, just scream until they help you! I don't know if that'd work on your mother but maybe it'd open her eyes to the fact that you're not okay. I wish I could think of a better idea other than just "scream until someone helps" but sadly it sounds like you're at that point. :(

How is everyone else today? I'm having a bad day. My guts are NOT happy (still no blood, but a lot of angry, crampy, explosive d) and my hip is achey and I'm just plain exhausted today. I even had a dream last night that I was exhausted! In my dream, hubby and I were at Disney World, and we went on a few rides but then we got so tired that we just went home in the middle of the day. Then I woke up and felt seriously exhausted. I'm kind of chilled, too - I get chills in a flare, so I'm not sure if this is a mini-flare or what. I felt pretty good yesterday and had a good workout, but then I ate dinner after the gym and that didn't sit well at all, and I've felt crappy ever since, so hopefully I'm just paying for that dinner and it's not a flare. I mostly just want to sleep but I can't. Really, really looking forward to the weekend and I'm planning to rest a lot. I hope everyone else has a nice, restful, relaxing weekend too.
 
Cat-a-Tonic said:
How is everyone else today? ...

...I get chills in a flare, so I'm not sure if this is a mini-flare or what.
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I'm recovering after my encounter with "THE GF BROWNIE OF DEATH" :bat: It sure was yummy though, it wasn't worth this agony. Past three nights I've woken up every two hours to BM, but it was mostly urgency and no actual BM or just a little gas. I hate that. I'm glad I can get back to sleep. I took up video game playing back when I couldn't get back to sleep because, really what else do you do when everyone else is asleep and you can't make any noise and you're too miserable to read (not distracting enough)?

Luckily, I was able to get back to sleep so I didn't need my videogame crutch... yet. But if this continues, I might get my circadian rhythm disturbed enough... and back on the wheel of being awake all night I go..

I get the fever/chills thing too. I used to wonder what that was all about, but it's pretty clear now. Bad rumbly tummy leads to chills/fever for me. It actually started when I had the blood clots, and never left. I wonder if the real disease was the Crohn's and it was missed because everyone freaked over the blood clots.

I also tested the GF menu at Cheescake Factory... they seem to be making an effort finally, though they still don't separate their kitchen. Few places do. I had a make your own omlette with tomatoes on the side, and an appetizer of green beans (they were happy to serve a side dish as an app). The green beans were oily, but tasty. The tomatoes could use some sunshine versus gassing... but overall the experience was good. They even discussed the option of having milkshakes for dessert but I declined not wanting to add more risk to my list.

My eating out rules:

1. Tip well and they'll bend over backward for you.
2. Use the GF menu, but ask about things that logically would be grain free like shrimp scampi.
3. Always get an appetizer because you will have a long wait before food arrives and you can't munch on bread anymore.
4. Chat with the waitperson. They're usually bored to death and like a nice chat, and they will help you more if they like you.

I realize that last statement is kind of Ayn Rand... but I honestly enjoy just chatting with random strangers... which is why I get on forums.
 
Cat I constantly want to scream. It's just useless if no one hears though. We're having an extension done on our house at the minute and I worked out that in the back of the shell they have put up there is a gap that I can get through in the bathroom to get to the bit that's out of action atm. It's nice to just sit in there and have some space, if it wasn't so cold I'd possibly sleep in here! Shame I can't, I'm wrapped in 2 duvet covers and a blanket just sitting in here with my laptop. But its quiet, and that's lush!!!

Hope your all well!
 
Sounds like you have a great place to eat there - although sad that the brownie was a disaster - it does make you wonder if it was GF?
In the UK there are a few great places for GF (I am assuming we are talking gluten free) menus. I was on a low FODMAP diet for 6 months (virtually nothing you can eat, meaning everything has to be from scratch) and this made eating in, let alone eating, out a nightmare! However, I found Zizzi's were great - I told them what I could eat, and they made it for me :) There are others who do GF menus too - many of the large italien restaurants will have GF pasta or pizza base (and some do both).
Sorry to hear you guys are not having a good time of it at the mo. I often get sweats -esp at night. I am ok - currently recovering from a hosp admission (found an impaction -probably drug induced - rather than inflammation), trying to get a balance of symptoms which is tough without decent painkillers. However, my TENS machine arrived today, and seems to be helping with the lower cramping pain - and at the very least, I can put on to help me relax - anyone else tried TENS for their pain?
 
Talking of GF in the UK madmouse, when I trialled it I was addicted to pizza hut's gluten free pizza! I say addicted because I had one daily (I did work there, didn't just randomly go daily)!!! Although working there was my problem, because I had 50% off, so it made it affordable to eat it daily!!
 
Yes I use TENS when my back aches due to my losing control of the bowel situation. Took me forever to get the connection that my back hurt because my bowels were inflamed, but I finally made it. The TENS quiets it down. But the prevention is worth every penny of cure. I make guacamole like this:

1 mashed avocado
bit of salt
1/2 tsp dried onion, soaked in a bit of hot water
sprinkle of paprika or chili pwd
cilantro or parsley pesto (not just chopped, too rough for me)
after mixing it up, I add 1 T fish oil, lemon flavor (straight liquid)

Good for what ails me.

That GF brownie was definitely GF. I just can't digest tapioca (or any) starch at this time. I had a yeast infection within 24 hours in both bowels and the usual target area. Not wanting to get chemicaled by the doc, I decided to flush it out and ride it out. Laxatives followed... (my bowels obstruct rather than produce D, most of the time... not always). I'm almost better today.
 
Hey sorry I didn't respond earlier! I go to St. John's university in queens ny where I have an apartment with a classmate of mine. I am originally from New Jersey and it's about 1.5-2 hours away! I come home every now and then and my GI is here. I'm in the midst of prep. I've never tasted anything more disgusting in my life.

I've stopped going to the bathroom though. It was suprep and I was going for a while, maybe an hour an a half, but I don't really have any urgency to go anymore? Is that normal? I drink the second thing tomorrow.
Is it okay if it takes me a little more than an hour to drink the thing? I keep gagging and it's hard to keep it down so it takes a while :/
 
Hey, each of one of my preps i did took me 1.5 hrs to drink. I was fine as it still clears you out!! You can get bursts of it and then be off for a little while, everyone is different with when it starts and how long it goes on for. I took the both of mine in one night and was on and off the toilet for hours, it just depends on what you have to wash out and how quick its doing it. Best of luck for the scope my love, the nessasary evil to get a dx is what i refer to it as! You'll feel better for it long term!
 
Okay good!! I was under the impression that I would be going all night long but I guess not. I've officially decided to make it my life goal to improve the taste of these things. Spent most of my time thinking of ideas LOL
 
I thought that, i took both drinks and was done by 11:30pm by this time it was just water coming out. There are nicer laxatives out there, theres one called Picolax here in the UK, i cant remember what its called in America, but Cat could tell you! That stuff actually tastes nice! But does make you very nausious, so dont take if you feel sick in the first place! The sicky feeling is so much better than gagging to every mouthful! Believe me!

Anyway, i'm going to have to love you and leave you as its quarter to 3 in the morning here.in the UK, nocturnal D again keeping me awake but feeling tired! Good time to sleep i think! Best of luck with the other half of prep tomorrow and with the scope! Night! x
 
Hope you were able to get some rest!! I'm up now finishing the second half of the prep. If there's a next time I'm definitely going to look into that other one.

I hope everyone has a great day! Hopefully next time I post I'll have some new news. We shall seeeee
 
Ugh.. I am not envious about you going through bowel prep!

My first scope prep was klean prep (4 sachets!) And I only managed one and a bit.. and docs said the prep worked fine.

rose - ive had that picolax one and it is the best.. doesn't taste nasty and it was just 2 small cups. Much easier to do and less bloating and pain.

im on my way to hospital right now to see my grandad. He is not well at all :-( xx
 
RosannaKate said:
There are nicer laxatives out there, theres one called Picolax here in the UK, i cant remember what its called in America, but Cat could tell you! That stuff actually tastes nice! But does make you very nausious, so dont take if you feel sick in the first place! The sicky feeling is so much better than gagging to every mouthful! Believe me!
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It's called Prepopik in the US (and it's called Picolax in the UK and Pico Salax in Canada - not sure why the different names in different countries, but it's all the same product). You drink just 2 small cups of the stuff and it doesn't taste bad at all - but yes, for some people (myself included) it can cause absolutely wicked nausea, and it made me really dizzy too. It's easy to get down but the nausea was awful, I fortunately had a lot of Zofran on hand which took the edge off of that within about 20 mins or so. So yes, you may not even get the nausea side effect, and it tastes okay and is very easy to drink. (You do have to drink a bunch of other clear liquid of your choice to stay hydrated.) It's been around in Canada and the UK for awhile but was just approved by the FDA here in the US within the past year or so, so hardly any doctors/pharmacies know about it. I had to specifically ask my GI for it back in August, and then my pharmacy had to special order it as it's not something they normally carry. I'm rambling, but yes, there does exist a prep which tastes nice and you only have to drink a small amount of it - the nausea is the only real caveat.
 
In Australia it is sold as PicoPrep.

As they are all Sodium Picosulfate the name changes in accordance with regional trademark, brand identification and language considerations.
 
Picolax is the best prep I've used. No nausea, no cramping or pain, works very quickly.

When I used Kleen Prep it took over 6 hours to get started and for me the abdominal pain was horrible. I was going all night :S
 
I agree with you lsgs - especially about the no cramping.

well thankfully my grandad went home last night, he was stable enough to go. But they want him back in soon to seal off his nose. Which means he can only breathe through his mouth and will lose sense of smell and taste (I think that's what they said).
He bleeds a lot from his nose and internally aswell. Needs a blood transfusion every week and is incredibly anaemic. Its awful :(

Happy mothers day to all the mums on here :) my daughter got me a cookie monster t shirt.. she and my husband knkw me too well haha x
 
Can anyone weigh in on what I should expect at a physiotherapy appointment? Going on Wednesday and it's totally new to me!
 
First appointment takes longer than normal.. they will ask you to stand in certain ways to check posture and assess your joints by moving them and see what your strength is. Then will determine what type of exercises you should do.

my private physio used to do this ultrasound thing on my knees.. I cant describe it haha.
which joints are your worst?

come to think about it I have an appointment on wednesday too. Its an NHS one.. and she is rheumatology specific physio.. I was referred due to my hypermobility and arthritis (they aggravate each other!)
 
I think I must have had Picolax for my flexi-sig, and I sure know it was Klean Prep for the colonoscopy.

No way in hell would I ever have that vile, disgusting, inhumane Klean prep again!
 
bozzy- sorry if i missed this before because the last few days i've obviously been a little out of it.. but what exactly is wrong with your granddad? his nose bleeds a lot? has he had it cauterized before? i used to have bad nosebleeds too and it made me anemic. for some reason nosebleeds can be so dangerous for some people!! hope he's doing better though.
 
StarGirrrrl, it may not have been klean lrep for your colonoscopy, it might have bwen moviprep, they are both equally as vile (i've had both). Moviprep is what the NHS tend to give first because they also use klean prep in mri scans because they made me drink that when i got to the hospital, all the other paitients wernt impressed with my gagging and being sick, thats for sure!
 
It was Klean Prep I had for my Colonoscopy, i'm quite sure, the flexi-sig was 8 years ago and very gentle so not memorable as to what it was.

But for the colonoscopy however I remember vividly in technicolour that was it was KP!
 
Haha the joys! Moviprep is just as bad, they say you can out cordial in it to make it taste better, but if you put cordial in it, the powder and water separate. I wont ever touch that stuff again after that horrible evening! It was truly vile! When they started telling me thats what they were giving me for the pill cam, i was like NO WAY!!! So got Picolax, but that made me so nauseaus i threw up, cant win with any prep!
 
Hi paches.. no ive not said before. He has something called hereditary haemorrhagic telangiectasia (I had to google the spelling! ) - he isn't my biological grandad so I dont have to worry about it being hereditary.

Basically he was diagnosed aged about 40.. he has multiple AVMs in his lungs. Affects all the mucous membranes from mouth to anus. But his nose is the worst. He has had his nose cauterised several times.. so next step is sealing off his nose completely.. I think he said it was some chemo-type drug that they'll inject into his nose but im not sure. :(

Its awful.. but the last 3yrs he has gone rapidly down hill (he struggled to make it to my wedding.. but he did) I am so close to my grandad.. best in the world. But he has been so ill and depressed with it.. I dont know what to do.

Xx
 
Hey star, how have you been lately? I had a flexi sig when I had he bleed. I didnt have a prep.. but the nurse gave me an enema :/ not fun.. but better than prep.

our pharmacy stocks both moviprep and klean prep.. I dont know why.. I wouldn't choose either haha
 
Hi Bozy, You know how it is muddling along. In one of my bad spells at the moment fatigue wise, no cause and i'm doing little and taking it slow but not much improvement yet :( The joys of having a chronic illness!

Annoyed this morning as been waiting since December for specialist Physio, I cancelled the first appointment due to illness and they have now cancelled the second which was supposed to happen today. Wonder how long I will be waiting for the third...

No sign either of my new Dr & Hospital appointment, only been 6 weeks though, i'd rather get an appointment for 2 months time now than keep having to wait to hear.
 
So sorry bozzy :( I lost my grandfather a few years ago and it was the worst. We were partners in crime and I miss him a lot.. It's definitely hard to see people struggle.
The scope was good and bad.. I don't have the pathology results yet, but overall my gi said everything looked good. There was inflammation in my small intestines which I guess he doesn't think is important so he's not doing anything about it. The only thing he did was change my bentyl to hyoscyamine which is a load of bull. I was pretty mad about it. I find it very hard to believe that my symptoms are coming out of nowhere. But I am also glad that it's nothing too serious. I plan on speaking with him today about getting the inflammation down seeing as I don't plan on living like this forever 😒
 
lsgs, what Bozzy said about physical therapy was pretty much my experience too. My physical therapist took down my health history and my symptoms, then she assessed my whole body (not just my bad hip, she looked at all my joints, which kind of surprised me) - she had me sit, stand, kneel, squat, walk, etc so that she could see how my body moved and how strong/weak my joints were, etc. She had this belt contraption thingy that she would use to manipulate my hip as my joint was "tight" so she loosened it up. That part felt nice, it wasn't painful. She also gave me a few exercises to start with - really simple, basic stuff that was meant to help strengthen not only my hip but the muscles around it too (glutes, quads, lower back, abs, etc). Every subsequent time I saw her, she'd watch me do my exercises, and if I was doing okay and my form was correct and I could do an adequate number of reps at a time, then she'd either increase the difficulty or add in more exercises, or she'd have me do the same thing but with a resistance band or a yoga ball, etc.

One piece of advice about going to PT - wear workout clothes! You may not get sweaty, you probably won't, but you'll need to move around and also you'll need to be comfortable. I saw so many people going to PT in stuff like jeans, and there's just no way that would be comfortable and it would be hard to do some of the exercises in jeans.

And of course, I'm sure this goes without saying, but when you are given exercises to do, make sure to actually do them! So many people go to PT but then don't put in the work at home too. I gave myself a goal when I started PT, that I would try to do 15 reps of each exercise that I was assigned, and I'd do my exercises every day (twice a day if I was really feeling ambitious). I bought myself a mirror so that I could watch my form while exercising and make sure I was doing things correctly. My physical therapist gave me some resistance bands and she also printed out the descriptions with pictures of all of my exercises, so that I could refer to the pictures to see what the proper form looked like. I was really conscientious about it. That's when I first started getting into exercise - my physical therapist actually made me feel ashamed and shocked at my first appointment, because she told me bluntly that pretty much all of my joints were weak and that I had very little muscle mass - I knew it was bad, but to hear someone else tell you matter-of-factly that it is indeed very bad, it just sort of shocked me into action. When I started doing the exercises she assigned me, it felt good and I felt like I wanted to do more, so I started going to the gym and lifting light weights a few times a week in addition to my PT exercises. That felt so good, my body responded very positively, and I've been working out regularly ever since.

Sorry that was such a ramble, but my point is, you'll get out of physical therapy what you put into it. Do the exercises you're given and do them every day, and if you can do more exercise on top of that, even better. Now that you're on LDN and are doing somewhat better, your body should hopefully do well with increased exercise. Good luck!
 
hey guys

Who has been on amitriptyline? Consultant put me on it, 25mg. So far im struggling with it, very tired etc, wondering whether to keep on with it or not, its affecting me quite negatively atm.
 
Akiva, I'm on 25 mg Amitriptyline too, I've been on it for about 3.5 years now (since Oct 2010). At first it did make me very tired too, but that wore off for me pretty quickly. How long have you been on Amitriptyline? I would give it a couple weeks at least. It can help some people with "calming" (my GI's word) the gut, and it can also help a bit with chronic pain. It doesn't seem to have those effects for me unfortunately. I was put on it for chronic headaches & migraines, and it does a very good job of preventing my migraines, so I'm happy to stay on it. It helps me sleep at night too. I've heard that for most people, the morning grogginess wears off after a few weeks, so I would say stay on it for now if you can and hopefully that side effect will wear off soon as your body adjusts.

Are you taking it right at bedtime? I like to take it about an hour before I go to bed, as that way it is kicking in right as I go to bed, and any residual grogginess wears off by the time I wake up. So maybe try that if you aren't already, taking it an hour before you go to bed. Good luck, I hope the side effects go away soon.
 
yeah im taking it about an hour before. Its not doing much for my bowels or hip pain, and I cant sleep, im so knackered, but I cant sleep its annoying.
I went to town the other day, and I was LOST. I couldn't remember where I had to go in order to get the bus to go home. I sat in the square for a bit and then I thought to use my phone, once I did that my mind worked again, ive also got postural hypotension :( keep blacking out if I stand up, I started Thursday.
 
akiva -sorry to hear that you are having a difficult time at the moment. I have recently started amitriptyline 10mg - having no effect for me on pain, but some days are letting me sleep more - hope u get some more joy soon. Unfortunately, they can take 6-8 weeks for full effect and if you want to stop them, dont do it without speaking to ur dr first, as can make u really unwell if stopped suddenly :) x
 
I'm trista I have been Undiagnosed for about 6 years is when it all really started I have had stomach issues my whole life but 6 yrs ago it started the horrible pain the weird bm's either have to go now or basically not at all I have been to the doc twice for bein really backed up I can't take laxatives they don't work for me I have a ulcer I believe but when I got to the hospital for my tummy the think I crazy not me it fing hurts and the not goin then having to go so bad it hurts isn't fun and frankly embarrassing at a store or restaurant but I'm figure this out one day Ill be glad to do I have crohns idk is it ibs also Idk but I just wish I knew so I could fix it to where I'm less hurting and more happy


Live Love Laugh
 
Hello Trista, sorry to hear your having a bad time. Have you had any tests to check for IBD? It's a difficult thing to diagnose sometimes and many of us on this forum know that. It's a bit of a battle trying to get through each day with bowel problems as you never know when your going to need to find a toilet. It can ruin your life when it's not under control. If you haven't had tests like a colonoscopy I suggest going to your GP and asking to be referred to a Gastroenterologist who can do these sort of tests to determine whether its IBD or something else causing your problems.
Hopefully that could give you some answers :)
 
I have had any tests done the doctors around here are well stupid they like to do pee tests maybe blood and that's it I was once so backed up it was push my organs up and they sent me home with with laxatives and said good luck but I'm thinking about talking to her but with no insurance it's impossible to get anything done I know I have a severely pinced nerve in my neck from a wreck and I can't get them to do anything about it other then referral for places that don't take medicad they won't do a MRI so I'm dealing with lots of pain and very frustrated so but I will check in with my gp and see if there are any low budget tummy doctors thanks


Live Love Laugh
 
Hi Rosanna,

I'm in the uk and your right the waiting lists are out of control, although i only waited 2 months for colonoscopy and 2 months for MRI. Communication is awful though. No one is talking to me, just sending letters and there out of the blue. No idea I was going for an MRI or why. I had that on Friday, immediate issue with the contrast drink they gave me. I was in the machine and the cramps and pain was so bad that when it was finished the radiologist came through and and said she could see my SB cramping on the scans. When I didn't know what was going on I rang the appointment desk at the hospital and they were really understanding and asked if things had got worse and brought the appointment forward. Might be worth a try!
 
Well guys, I tell you what, I don't think I've had a day this bad in a long time and its only 10:30am! I can't get off the loo! Which is pretty awkward when I have builders working as I'm scared they might need to use the loo, it's so embarrassing! I'm in so much pain too and nothing will touch it! I'm trying to get hold of work to let them know I'm not able to come in and I can't get hold of anyone, I've managed to leave a voicemail with my line manager but other than that, I don't know if she's heard it or not. That's a bit of a struggle as I'm having to phone between toilet stops, which are very frequent and I haven't got much time between to speak to them. Sometimes I really wish I wasn't me as this is so hard.
Had a pretty bad weekend too, fights with mum due to housing once our extension is finished, I told her I would like my own room so I can have some space to myself, but she doesn't care, as long as her little boy has his own room her older kids who need more space can be shoved together in a tiny room which we can't breath in! I'm really struggling and need out but there is just no way. She didn't like that though and just had a massive go at me for trying to express how I felt. I'm not even going to attempt the illness talk with her about what next and that sort of thing, because she even admitted she doesn't care whatever it is yesterday.
I'm in horrendous pain and my GP just doesn't have anything he will give me. I have no idea what to do because this pain is so intense and tight that I constantly feel sick and I can't live normally. I just want my old life back, before being ill hit. I'd do anything to be without this, but whatever I eat, whatever I drink, whatever I do... I am still in the same position. In horrible pain and not coping. Mentally not coping either anymore, but no one will even look towards that.
How is everyone else today? :)
 
Jinglebob28 said:
Hi Rosanna,

I'm in the uk and your right the waiting lists are out of control, although i only waited 2 months for colonoscopy and 2 months for MRI. Communication is awful though. No one is talking to me, just sending letters and there out of the blue. No idea I was going for an MRI or why. I had that on Friday, immediate issue with the contrast drink they gave me. I was in the machine and the cramps and pain was so bad that when it was finished the radiologist came through and and said she could see my SB cramping on the scans. When I didn't know what was going on I rang the appointment desk at the hospital and they were really understanding and asked if things had got worse and brought the appointment forward. Might be worth a try!
Click to expand...

Thanks! I think I might try that, because the secretary's aren't talking to me, they wont answer or move it forward. The NHS don't do communication, they just make everything 5 times as difficult as it already was! Oh well, guess the appts desk is worth a shot!
 
If you ever get a fever or seizure, make sure you get to the docs or ARU, they will then do the tests immediately. I kept ignoring all my fevers and that's why I'm in this state now. Things can get pretty bad pretty quickly so look after number one and be demanding with your GP. Every little detail, I kept getting these red lumps on my forearms and ignored them until a GP spotted them and asked if I had Crohn's disease and she said it was erythema nodosum.
 
Thanks bozzy and cat for the input about physic. Currently I don't have any sore joints - yay! Just my back is still sore but not NEARLY as bad as before LDN.

My GP has referred me for problems I'm having when exercising but I hope they will address by back too. I get this horrible sharp pain under my right rib cage when I exert myself even slightly which I personally don't think a physio will be able to help but I need to go with the flow anyway. I can't stand up straight when it comes on.

Cat I've been exercising on my turbo trainer about 20 minutes 3 times a week in addition to walking the dog 4 days a week for at least an hour. It's amazing how much better it makes you feel psychologically. I like to do things and my body cooperates and lets me. I don't have the confidence to go cycling myself outdoors yet because of this rib issue, but I'm doing really well with the indoor training. I'm getting some mean leg muscles already!

My sister also gave me a Fitbit fitness tracker and they are SO GOOD. I couldn't lose weight before but now it's dropping off me when I can monitor how active I am and how much I'm eating. Steroid weight is difficult to shift!

Akiva I was on amitriptyline admittedly about 10 years ago and found it a pretty awful drug. It did not agree with me and did not help my pain. Stick it out for a couple of weeks, maybe take it before bed, but for some they are not nice drugs to be on and the benefits have to outweigh the negatives.
 

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