Thanks hun. I just wish my pain meds would work. I clearly need something else but when I try they just bundle me off to hospital. I'm going to have to try tomorrow though, I've not been able to sit straight all day.
Hello everyone, apologies for the absence lately.
After my scan showed inflammation my consultant and IBD nurse said they felt that my crohns is definitely active and that biologics are my only real treatment option. With this in mind, they gave me some information leaflets and told me to see which one I preferred. They referred my case back to the MDT meeting, but this seemed to be a mere formality since last time we were asked to provide proof of a flare and now we had..surely they couldnt have a problem this time right?
Well guess what. I was wrong.
I got an email yesterday from my IBD nurse saying that they now want me to have another scope with biopsies.. I emailed back and said that this has upset me a little since my last one was really painful and it didnt even pick anything up. She responded saying that they need to get tissue biopsies this time (dont know the difference between these and the ones they usually take?) and that she will arrange for my consultant to do it at their center. Dont worry she says, they will sort it.
Now dont get me wrong I love my IBD nurse, she's been amazing through out this whole thing and always supported me and believed me when i tell her something isnt right. My consultant has also been great, hes a no messing kind of guy. If the patient says they dont feel well then he takes notice and does everything in his power. He has always said that if I'm in pain it means they need to change what they're doing.
So I have no worries about them. I respect them and I trust that they are and will continue to do everything possible to help.
However, I must admit that i am more that just a little upset. My team keep pushing to get me treatment, and the mdt meeting said show us the inflammation.. so we have.. but thats still not been good enough. I am unsure yet if we will have to go back to them after this scope. I am hoping that if they find the inflammation in the biopsies then I will be granted biologics with no further problems. But if they do have to go back to the MDT then I am concerned that they will still say no. Which would be crushing.
I have been in an increasing amount of pain lately. The other week, my boyfriend was staying with me while my parents were away. He was sleeping in the spare room ( I had a single bed and hes 6ft ) and I had to phone him and get him up at 7 am because I'd been crying in pain for nearly four hours and couldnt take it any more. He wanted to phone me an ambulance but I refused and self medicated etc.. I like to think I handle pain pretty well, but that was beyond. Ever since that my stomach hasnt really settled properly, the pain goes a little but then comes right back, and I don't know if i can deal with that another 3 months.
I have tried to be patient, i know these things take time and they have to make sure they check everything, but surely after everything I've been through they should have enough information to do something.
The waiting lists for urgent scopes are around 3 months. 3 more months of horrible pain that makes it impossible to function normally. Surely that's not right? My IBD nurse says my GP should help me with pain management, but they either act like i'm looking for drugs or they panic and send me into hospital. I'm also pretty sure I've been bleeding a little. As I've been seeing small amounts of blood in my underwear. I originally assumed it was periods starting but then nothing came. I'm not 100% sure on where it came from but I have seen blood come out before so im reasonably confident.
Apart from all that, the thought of another load of prep when the last one made me violently sick and I had to be put on fluids plus another scope so soon after the one that went wrong really makes me nervous. I have always found scopes very painful, and I certainly wasnt sedated very well the last time. I know my nurse says she'll get it with my consultant this time but I don't know if she can 100% garuntee that as it was meant to be with him last time and i ended up with someone else. I will be asking if i can get a different prep at the very least and maybe more sedation if thats possible.
I know all this is just a part of IBD and I know I should be used to it, but right now I really feel like I need a break. I'm so sore, barely sleeping and my appetites all over the place and its been like this for the majority of this year if not longer.
I don't really know where I'm going with all this. I just needed to get it out to people who understand. I have an appointment with my nurse next week and have lots of questions to ask. Most of all i just want some relief from this pain. I really dont see that as being too much to expect.
I'm going to try and make a doctor's appointment tomorrow to sort out some pain relief. I just hope they don't send me to the hospital again -_-.
Since your GI isn't concerned, but you still are, what does your primary care doctor say about your elevated test results?I am so sorry to hear of all that you are going through. I don't understand why they want to put you through another scope( as it is invasive) when they already know you have inflammation. Why not just treat you?
Sounds like they want to make money on unnecessary tests. Colonoscopies are hard on the body as it is, especially with the prep. Every time you drink the prep it wipes out lots of beneficial flora in the gut. I just do not understand these doctors. I would understand if you had not had a scope in years, but they know you have Crohn's and they know you have pain. They should just treat you and see if you get some relief.
I have almost but given up on western medicine. I am not even diagnosed as of yet. I have been having intestinal issues for over three years now. Tests I had were negative( my last colonoscopy was 2 years ago). However, just in the last three months I have felt just awful. I had my primary care doctor do a stool test and it showed elevated Calprotectin level( 384). My GI doc just blew it off and said it was likely IBS related( he said since my scope was clear two years ago he is no overly concerned). Well I went ahead and ordered a comprehensive stool test myself ( DNA PCR stool test) and it showed also elevated Calprotectin levels, High SIgA levels and positive for Candida overgrowth). Also higher amount of fats found in my stool as well. I also asked my primary care doc to do a C-reactive protein blood test on me and that was elevated ( normal is less than .80) I was at 1.55
This is ridiculous that I am having to do all the leg work and investigating myself. I have other chronic health issues as well( IC of the bladder) and chronic fatigue issues. I know from experience that doctors really are clueless when it comes to ANY kind of chronic illness.
Anyhow, sorry to have gone off an a rant there. I hope you can get some help soon so you can start to feel better. I just do not think they should be making you go through another scope this soon when they already know you have Crohns. They should be focused on treating you instead. Hang in there. Big hugs to you.
Hi, I actually did EEN for almost 8 weeks, and felt sick pretty much all the time on it. I do adapt my diet, I know what sets me off and I avoid it but unfortunately that isn't enough to control things for me. I am a coeliac as well, so I'm used to strict diet control. Even with all my diet changes and watching the amount of fibre etc I still get severe pain and sickness etc. I know diet is very helpful for some but for me it just isn't enough.Hello valleysangel,
Haven't you tried to adapt your food to the symptoms. I think it dépends on each individual but I made my own food list and I can say that it made a difference for me when associated with corticosteroids.
My GI and IBD nurse are trying to get me treatment. We've already tried immunosuppressants which haven't worked for me. They agree that my only real option is biologics. But it's not just up to them if I get them.I am so sorry to hear of all that you are going through. I don't understand why they want to put you through another scope( as it is invasive) when they already know you have inflammation. Why not just treat you?
Sounds like they want to make money on unnecessary tests. Colonoscopies are hard on the body as it is, especially with the prep. Every time you drink the prep it wipes out lots of beneficial flora in the gut. I just do not understand these doctors. I would understand if you had not had a scope in years, but they know you have Crohn's and they know you have pain. They should just treat you and see if you get some relief.
Anyhow, sorry to have gone off an a rant there. I hope you can get some help soon so you can start to feel better. I just do not think they should be making you go through another scope this soon when they already know you have Crohns. They should be focused on treating you instead. Hang in there. Big hugs to you.
Here you can get straight on biologics if you're very severe and the only other option is surgery (although you still have to go to the mdt) otherwise we have to show that other treatments aren't viable. For me immunosuppressants caused bone marrow suppression so I qualify that part easily. It's just a case of getting them to accept I'm flaring now.Big hugs
Ds started biologics about 4 months prior to the new rule has to fail all other drugs and prove its needed here. Otherwise I know the process would have been extremely drawn out.
Ds also has tramadol for his arthritis pain.
Just know it is classified as addicting here in the U.S.
It can als make you feel spacey .
Have only given it to Ds once
He broke out in hives /rash so we were advised to only try it again if absolutely necessary .
I've had the standard release ones before but always found they wore off very quickly. So the Dr suggested trying a higher dose but on extended release to see if that's any better. I've been on it for a few days so far and I'm definitely feeling some relief. I slept last night for the first time in 2-3 weeks.My younger daughter has been using Tramadol for quite a while now - it definitely does make her feel sleepy and sort of out of it but it also does help with pain. I don't think she would be functioning at all without it. She found that the extended release didn't work as well for her as the immediate release Tramadol, but of course, everyone is different.
My older daughter has also used it on and off and had absolutely no trouble weaning off it when the disease was brought under control.
Good luck with the biologics - really hope things improve soon and they can figure out a treatment plan for you!!
I've been told to drink more milk because my phosphate is low, sorry I should of made that clearer in the original post. I know thats counterproductive in terms of iron but my IBD nurse seems to think my phosphate level is more of a concern at the moment as my hb is just about stable. To be honest I'm usually told to be careful with milk due to high calcium but it's ok in short bursts.If your trying increase your iron try to avoid milk either side of your iron rich meals as milk makes the iron less available.
I am hoping the best for you. Keep us updated.Hello everyone,
Finally have a little progress, my follow up has been confirmed for the 11th November, and I finally have a date for my colonoscopy. I've just booked it in for the 24th November. I know that isn't within the 6 weeks I was originally put down for but the lovely lady on the phone said it's on the system for it to be my consultant performing it and that I will be having picolax not moviprep (which makes me very sick).
I am still getting a high amount of pain but the morphine is helping considerably and I think I may even have put a small amount of weight on!
I am feeling rather nervous today as I have an assessment tomorrow to see if i will keep getting employment support allowance, I dont know what your equivelant is but its an allowance for people who have illnesses that prevent them from working or make access difficult. Until now I have just been sending in sick notes from my doctor but they only allow that for the first few months now. If I can't convince the assessor that I'm not well enough to work then they will be stopping my payments. There are many stories of people not being believed in these assessments, and getting their money stopped unfairly. I am just hoping I get someone fair.
Wish you the best.It's prep day tomorrow, I have to start at 8am and will be on liquid only all day, which is unusual as my appointment is at 3pm the next day. Usually with an afternoon appointment in the uk you'd be allowed to eat lunch and then start the prep in the afternoon. This is going to seriously mess up my meds and I really don't do well without food but needs must. Hopefully the whole thing goes quickly and we'll finally have the results we need to get things moving
It's quite unusual in the uk, I know it's popular in the US though so maybe we're just catching up with you guys.Good luck
They tend to do that type of prep for kids
Glad you might finally have a diagnosis.Hello all, colonoscopy was a success, I still had quite a lot of pain in places but my consultant managed to help it along with gentle presses on my tummy which helped.
They got into my terminal ileum and found some ulcers and inflammation. He says it's not severe but that we should take into account that I am taking medication already (budesonide and pentasa). My GI said that they will look at the biopsies with the microscope but from what he could see it looks like crohns. I told him that this is actually a relief as we finally have something to show.
I'll be seen by my ibd nurse in 2 weeks and have just emailed to remind her I've had the scope like she asked so hopefully things can get set up now.
Yes.I am so sorry, ValleysAngel, I sincerely hope that the water service is restored. And I understand about the cold, it is so cold in the UK. May you get a little physical comfort - our very best wishes.
It's quite difficult to get GPs to do an mri, they'll usually do an xray and then if they think you'll need more than that they get a specialist involved (because the person who refers you to the scan is the one whos department funds it).I wonder if your GP could order an MRI of your worst joints. If that showed inflammation, that would get you to a rheumatologist wouldn't it?
I really don't know much about the system in the UK, so I'm just throwing out ideas. The fact is, Inflectra should help with some sort of SpA, so hopefully once you get on it, you'll feel better.
The thing is that sometimes with arthritis, you need a combination of meds and then you'd need to see a rheumatologist. My older daughter needs an NSAID, Humira weekly and MTX to keep her AS under control. My younger one is getting a high dose of Simponi and Arava and an NSAID (which was approved by her GI). Of course, if you're planning to have kids soon, both Arava and MTX are out.
Hopefully, the Inflectra will work. I'd ask for a rheumatology referral because you don't know if things will get worse or better. In 6 months, if the Inflectra hasn't helped, then you'll be very glad of it.
Sending hugs and thinking of you!
Hi Cat, I've actually got a b12 deficiency, I have b12 injections every 12 weeks to treat it, I hadn't realised this was one of the symptoms but it makes a lot of sense. I'll have to ask my ibd nurse what my current levels are like. I know my doctors will sometimes move the injections closer if needed so that's an option.Valleysangel, you mentioned that your lips are peeling and swelling. I had the same thing happen, and for me it turned out to be a B vitamin deficiency. I now supplement with B6 and B12, and my lips have gone back to normal. Have you had your vitamin levels checked lately? If not, you might want to have some bloodwork done. Like you said, various lip glosses weren't helping me at all either, what you're experiencing with your lips sounds very similar to what I went through. Fortunately though it was an easy fix, so hopefully it is for you as well. Hang in there, it sounds like you have a lot going on right now! I wish there was an easy fix for all of your pains and symptoms, but hopefully I can at least help with the lips issue.
Yes.To be honest we've known I was flaring for a good while, we've just not been able to pinpoint the inflammation which was why the mdt meeting kept saying no. But now we have definitive proof of where it's active and there are no more bariers . It's good to know why I've been feeling so rough for definite and have a treatment plan in place.
Since inflectras so new I'm thinking about doing a diary, starting with getting things set up, so you can all see how it works in comparison to infliximab, do you think people would be interested in that?