Not happy with treatment, need advice

[PandaChance]

Hi folks, this is my first time on this forum and I'm looking for advice (preferably from someone from the UK who's familiar with how the NHS works but all advice is gratefully received).

I was diagnosed with proctitis about two years ago after months of pain, being told it was IBS, pretty much the same as everyone else's story! I've never been satisfied with this diagnosis because I can feel I have pain further up my bowel than this and my symptoms are worse than the usual for proctitis. I was prescribed Mesalazine for every day use, which made absolutely no difference whatsoever. I told this to my specialist, who ignored me completely, and eventually I got in touch with the local IBD nurse. She prescribed the maximum dose of Mesalazine orally, as well as a suppository every morning. My symptoms then got so bad, I was convinced I was having a flare, so all the usual tests were run but they found that it was actually the Mesalazine causing the symptoms. I asked my GP for a second opinion referral, because at this point I was completely fed up, it has completely taken over my life. I got sent to the same bloody specialist!

This time however, he seemed much more understanding, finally agreed that mesalazine doesn't work for everyone, and in some cases, as I had experienced, made the symptoms worse. He agreed to do another scope (which was about 3 weeks ago now) so he could "justify the next step up in medication". However, his report says I've to try Pentasa (a different formulation of mesalazine) since I told him suppositories make the symptoms worse, especially the steroid ones. He's acting like I'm being a difficult patient because I've tried everything at this level and I'm unwilling to go through it again. He says my symptoms don't need anything else other than a drug he's told me doesn't work for everyone. I'm completely at my wits end. My pain has been about 10x worse than it was before my scope, and it's all been for nothing.

Has anyone else been in this position? What do I do next? My life has been completely enveloped by this disease and I'm fed up. Thanks if you've read all of this!

 

[eleanor_rigby]

Hi,

I'm in the UK as well. I have a diagnosis of Crohn's which was obtained from a colonoscopy - for me they could see I have inflammation in my ileum. What are your symptoms that makes you feel the disease could be higher up? A colonoscopy is able to see all of the colon and some of the ileum in the small bowel so it is very useful with diagnoses.

Is there a different medication in particular you would prefer to try? My dad has distal ulcerative colitis and has done exceptionally well on asacol. This is at the same level as the pentasa etc. It would be great if you could get into remission on those drugs as they do not pose any of the significant risks associated with the stronger drugs like immuneosuppressive drugs and the biologics. I can tell you now, there is pretty much zero chance of you getting on the biologics on the NHS in your situation. My bowel perforated in 2011 and I am still not allowed them because of the costs. You could potentially get azathioprine or 6mp if you wanted to go down that road as these are cheap drugs. However, they take 6 months to work + and come with an increased risk of cancer.

Personally if I was in your situation I would request asacol and see if you can get relief from that.

 

[PandaChance]

Hi,
Asacol was the drug that I was on, it did me absolutely no good and at full dose made me worse. My thinking now is that there must be something else going on, because he says that internally what he sees doesn't match my symptoms, but doesn't offer any other options or routes of investigation. If I'm completely honest I have no faith in this specialist from my own experience, and that of my Dad who sees him for Diverticular disease, hence why I requested a second opinion. I saw him last December and reported that since all this began in early 2014, I hadn't had a single day without symptoms, and he wrote a report to my GP that I reported no symptoms and stopped 2 of my medications .

 

[valleysangel92]

Hello, welcome to the forum,

Firstly, you can ask for a second opinion at the hospital, if you tell the nurses you want to see a different consultant they will tell you how to go about it, so if you still feel you would like to see someone else then try that.

Secondly, there are lots of different formulations of mesalazine and each is specifically designed to be used for a particular area, asacol is a good one for the colon, so perhaps trying this isnt such a bad idea if you can get them to agree, there isn't any real reason for them not to unless they think you have inflammation elsewhere, in which case Pentasa makes sense as it works in the small bowel too.

Unfortunately its often a bit of a slow process getting to the correct medications as things are different for everyone and there isn't a one size fits all. Usually the next step is an immunosuppressant like azathioprine, they are a little more risky than the mesalazines, but those risks are fairly small compared to the risks of undermanaged IBD. The previous poster mentions a risk of cancer, but this is very slight, and with careful monitoring is usually caught very early if it does happen. Undertreated IBD can result in very serious complications, so while side effects are a consideration, they need to be weighed up against what happens if you don't manage things.

Some doctors will recommend using a combination of medications, so you may find that they keep you on a mesalazine and then introduce another medication in addition.

You mention that you feel your pain is too severe for the type of inflammation you have, but despite what doctors say, inflammation can be seriously painful. The pain levels you describe are possible with this sort of thing, but they should still be addressed, they should be helping you with pain management. My IBD nurse requested my GP give me morphine on prescription because my crohns pain was clearly severe, so I really don't understand medics who don't offer help with pain management. If things keep getting worse then please don't be shy of going to A&E, especially if you stop passing stool or get any vomiting.

As for the biologic medications, the guidelines are that they are used for people who have severe inflammation that would otherwise require surgery, or persistent inflammation that has not responded to other medications. It doesn't necessarily mean that you have to have severe inflammation to get them, but you do have to jump through some hoops and go through the other options first. Most doctors will use them if they feel they are needed and will do what they can to get around the red tape. My IBD team were great and fought for a year to get them for me. It is not always because of the doctors that these treatments are withheld, a lot of it is down to the health boards. I would say though that if your condition can be controlled with medications that are lower down the scale then it will serve you well in the future, the lower down the scale you can stay the more options you will have if/when that medication stops being effective.

I have just started a medication called vedolizumab, it is a type of biologic that only targets the gut, its very specialist and very expensive and not really used much in the UK yet, but the science used in it is very promising and could really make a difference in the future. New medications and developments are coming out all the time, so please don't give up hope.

Also, don't be afraid to stand up for yourself, you know your body better than anyone so if you want to try a different treatment then tell them, they may not agree, but you can ask them about the options and ask them to explain why they have chosen the treatments they have. They may have a good, sound reasoning and it may actually make sense, but if not you will have the option of asking to see someone else. You can even change hospitals if you want to.

 

[PandaChance]

Wow, thanks so much for such an in-depth reply! Lots of useful information in there! The main reason I think it's not just proctitis is that I have very targeted pain in my sigmoid colon which my specialist has even noted there was active disease & abscesses in that area when he did the scope last time. Since I had my scope around 3 weeks ago I have pain in my ascending colon which I've never had before. I assumed it was just because they took LOADS of biopsies but 3 weeks later the pain is only getting worse and I've already been through A&E with it, where they agreed that's what was causing it. My GP originally thought they had perforated my bowel doing the scope because I was so off colour and in so much pain. My plan at the moment is to see my GP at the end of this week when my biopsy results should be back, and ask to try Pentasa - if this doesn't work I will definitely be seeking a second opinion. I just feel like I've been through a lot with getting the scope done, the ever-delightful prep, and the pain since, to be in the same position I was beforehand. My employer also offers private healthcare with they heavily subsidise so I'll be looking into that. Thank you so much for your reply, I'll be sure to refer back to it when needed.

Good luck with the new medication, my mum mentioned it to me last week because she'd heard of it, hopefully it works for you!

 

[valleysangel92]

It sounds like you have inflammation in more than one area then, which would mean pentasa may be a little more effective, but unfortunately its not that easy to tell. Did they do anything about the abscesses or did they resolve on their own? I always have horrible pain after my scopes, I feel like I've been run over, sometimes for a month or more. They sometimes have to put quite a lot of pressure to get around the more tricky bends. My Crohns is in my terminal ileum, but my colon is always on fire after scopes. So, it could be that its simply the normal after affects of the scope, but if it doesn't settle it should be mentioned again.

I hope you get some answers when you see the GP, be sure to ask about symptom management, you should not be left in that much pain! It is a hard slog especially in the beginning, sometimes the doctors forget that.

Thankyou, at the moment its reserved for when other meds have been tried and not worked, but hopefully in the future it will be much more accessible.

 

[PandaChance]

I'll definitely give the Pentasa a go then, I has been prescribed the suppsitories before which were just horrendous, I ended up in more pain than what I was taking them for, plus feeling like I have to run to the loo every couple of minutes. Not fun. Hopefully the tablets work better. I had also been prescribed buscopan and paracetamol which were relatively good for managing the day-to-day usual aches and pains, but when he completely messed up the last meeting we had, these were the two he stopped, so I'll be asking my GP to try these again. Thanks again for your advice, you've made me feel a bit more optimistic about the new medication

 

[valleysangel92]

You're very welcome . If you don't find the buscopan helps very much then you could ask about alverine citrate, it's a similar medication but slightly better for our type of spasms. My IBD nurse switched me to it. If you have any other questions or need any other support please ask us.

 

[PandaChance]

I'll be sure to ask about that actually, I had IBS most of my life before the IBD and I remember the audmonal forte being a godsend!

 

[FrozenGirl]

What about some oral prednisone? It might help quell the inflammation to lessen the pain and maybe give some time for a different mesalamine to kick in.

 

[EmmaLou]

I'm also in the UK.

It's odd how inflammation in one area seems to cause pain in others. I had it in the terminal ileum and during an admission in July they were convinced I had a stomach ulcer because of pains in that area when eating, but the endoscopy came back clear. When my TI was removed in August the stabbing pain in my stomach went with it.

I've found that going through the IBD nurses is the best way to get results. When dealing with the consultants, either at appointments or when admitted, it feels that they don't isten and then when you read their notes about your meetings it reads like they're talking about someone else! The nurses, on the other hand, I've found to be much more empathetic, and they seem to actually listen. They've even answered all of my questions about why I can or can't use certain drugs, even if it means checking with the consultant before translating it into real person language for me.

When I've spoken to my GP about Crohn's specific problems he said that they don't deal with IBD in the surgeries much after diagnosis because it's handled by the hospitals and IBD nurses, so to direct IBD stuff at the nurses first.

I hope you're getting somewhere. Sometimes it feels like we're banging heads against increasingly thick walls!

 

[Tealtulip16]

i was diagnosed earlier this year by NHS. my inflammation is in the terminal ileum. i have chronic and recurring pain in my right side (similar to a description of appendicitis ) horrible nausea after eating. i have phoned my IBD nurse a few times she is lovely and offers advice over the phone etc. my GP however is another story , he literally couldn't care and basically tells me paracetmol and get on with it.

I am on azathioprine , to begin with i felt fantastic , started to get my life back again. a few months in and everything is just awful to be honest . i don't see the consultant until late november which is annoying so i literally go between IBD nurse and my useless GP. i think the IBD nurse is the best way forward. i get so embarrassed calling her up and i don't want her to think I'm whining on but she is always reassuring and kind and sometimes when your an emotional mess and don't feel like anyone understands, thats exactly what you need!

 

[ronroush7]

i was diagnosed earlier this year by NHS. my inflammation is in the terminal ileum. i have chronic and recurring pain in my right side (similar to a description of appendicitis ) horrible nausea after eating. i have phoned my IBD nurse a few times she is lovely and offers advice over the phone etc. my GP however is another story , he literally couldn't care and basically tells me paracetmol and get on with it.

I am on azathioprine , to begin with i felt fantastic , started to get my life back again. a few months in and everything is just awful to be honest . i don't see the consultant until late november which is annoying so i literally go between IBD nurse and my useless GP. i think the IBD nurse is the best way forward. i get so embarrassed calling her up and i don't want her to think I'm whining on but she is always reassuring and kind and sometimes when your an emotional mess and don't feel like anyone understands, thats exactly what you need!

You might want to get another gp.

 

[Tommy21bn]

Hi All

Just a quick piece of advice but if you have chronic pain caused by IBD make sure you're referred to the Pain Team at your treating hospital. I was left in increasingly large amounts of Oromorph by my GP which caused me to become addicted. Once I was admitted to hospital as the Oromorph had become ineffective I was referred to the Pain Team who immediately began to vary the types of painkillers that I was on and the doses. This has made a massive difference to my life and I can now go for a period of days without being in pain.

If you're in chronic pain ensure that you have a specialist managing your pain.After all you wouldn't want a GP to manage your IBD.

 

[Blu's Tale]

Hi,



I'm in the UK as well. I have a diagnosis of Crohn's which was obtained from a colonoscopy - for me they could see I have inflammation in my ileum. What are your symptoms that makes you feel the disease could be higher up? A colonoscopy is able to see all of the colon and some of the ileum in the small bowel so it is very useful with diagnoses.



Is there a different medication in particular you would prefer to try? My dad has distal ulcerative colitis and has done exceptionally well on asacol. This is at the same level as the pentasa etc. It would be great if you could get into remission on those drugs as they do not pose any of the significant risks associated with the stronger drugs like immuneosuppressive drugs and the biologics. I can tell you now, there is pretty much zero chance of you getting on the biologics on the NHS in your situation. My bowel perforated in 2011 and I am still not allowed them because of the costs. You could potentially get azathioprine or 6mp if you wanted to go down that road as these are cheap drugs. However, they take 6 months to work + and come with an increased risk of cancer.



Personally if I was in your situation I would request asacol and see if you can get relief from that.

Hi Elenor can I ask was the diagnosis made on the fact you had inflammation in you ileum or was there more.
I only ask because I'm in the uk had a colonoscopy which showed inflammation and an ulcer and my consultant is not convinced it's Crohns

 

[EmmaLou]

Depending on where the inflammation and ulcer are, they might suspect ulcerative colitis rather than Crohn's. Did the consultant give any idea of what they thought might be going on?

 

[eleanor_rigby]

Depending on where the inflammation and ulcer are, they might suspect ulcerative colitis rather than Crohn's. Did the consultant give any idea of what they thought might be going on?

Yes I had ulcers in my terminal ileum, which is consistent with Crohn's. Why is your GI not convinced? My pathology did come back suggesting it wasn't Crohn's (I'm not clear exactly why) but my GI overruled this and diagnosed me based on my history - years of symptoms and a perforation 4 years before along with my colonoscopy results. Prior to my colonoscopy my GI said the presence of ulcers would be key in diagnosing me with Crohn's which is what she saw.

 

[EmmaLou]

Mine was largely in the TI, too, as well as a little inflammation in the colon.

My understanding is that UC only affects the large intestine, so if the inflammation and ulcers are there they might suspect that.

 

[eleanor_rigby]

Yes that's right.

 

[Blu's Tale]

Mine was largely in the TI, too, as well as a little inflammation in the colon.

My understanding is that UC only affects the large intestine, so if the inflammation and ulcers are there they might suspect that.

The inflammation and ulcer was in the TI at the moment he thinks it's more IBS but is still doing tests. Just had a small bowel MRI and a feacal something test.. waiting to see what they show before I go back to consultant

 

[eleanor_rigby]

The inflammation and ulcer was in the TI at the moment he thinks it's more IBS but is still doing tests. Just had a small bowel MRI and a feacal something test.. waiting to see what they show before I go back to consultant

My MRI was normal and fecal calproctectin was in the 60s. In my case the colonoscopy was the most useful for my diagnosis. Irritable bowel syndrome does not present with ulcers

 

[EmmaLou]

I'm with Eleanor_Rigby on this. I've always been told that IBS does not cause physical scarring or inflammation. On the other hand, I'm not a GI.

If you're not happy with what this GI is saying get another opinion.

 

[Blu's Tale]

I'm with Eleanor_Rigby on this. I've always been told that IBS does not cause physical scarring or inflammation. On the other hand, I'm not a GI.

If you're not happy with what this GI is saying get another opinion.

I'm going to see what he says after these tests and then see where I go from there