Desperate For Help

[utisbug]

Hi all.

I'm new her but was diagnosed with Crohns 4 years ago.

When I was first diagnosed it was due to a continued loss of blood that doctors initially said was haemorrhoids.

My condition has continued to progress to the point where I am desperate for help.

I live in the Uk and although I see a Gastro Dr it is once every 6 months and being frank they do not help.

Since being diagnosed I have had issues with muscles, bones, my skin is terrible now, my hair has just steadily fallen out and continues to do so, my vision has become worse and I often see flashes of light etc. I've had lung problems, kidney problems, liver problems and continue to just get worse and worse.I have had vascular issues and lose feelings in toes, fingers. My limbs shake, I type a lot and over the last 2 years I have began to lose co-ordination when writing, I also drop things and lose grip without notice. Of course as we all know the stomach is never ok, just constant pain and soreness.

I have completely altered my diet and got it to the best refinement I could and when I may have had to stay in bed for 2 weeks a year ago it will only be a few days now, still a good day is just feeling incredibly rotten and incredibly exhausted.

I have been passed from Dr to Dr to Dr and as much as I try and remain patient my health has deteriorated to the point I couldn't dream of running around or going out with friends etc. Each specialist I see only governs their particular specialism and because I have so many issues nobody can help.

Each Dr whether they be Urology, Neurology, Gastro, Dermo, General Medicine or whatever accepts that my "Crohns" is incredibly complicated and can cause all manner of issues but nobody can say with certainty this is whats causing this and this is why this is happening. Everything is a stab in the dark method wise and after 2 years of trial and error and continuing to get worse I'm beyond depressed and losing my mind. It has completely halted my life and each Dr I see although expressing their sympathy can do absolutely nothing for me.

I'm at the point where the next referral Dr's want to give me is to Chronic Pain where people with conditions that's underlying cause cannot be identified are sent just to get help with the pain. That is not what I want or need! I've thrown every ounce of energy I have at trying to get better and I've just got worse and the scariest thing for me is there is literally no light at the end of the tunnel. I don't have a shred of positive news from Dr's or even an idea on how to go about tackling this.

The truth is, all the people I've seen nobody has a clue what's happening. I am absolutely desperate for just something to hold onto and work towards. I cannot continue like this.

I'm just hoping there is someone out there with maybe similar experiences that had results? Or somebody that maybe has a suggestion on where maybe I should seek help Anyone in the Uk with similar issues regarding having a specialist that is actually dedicated to trying to find out what is wrong with you rather than a bunch of people ticking off their particular field?

I'm sorry to sound so negative as a first post. I'm just at the point where stumbling around in the dark with Dr's aimlessly suggesting things is not good enough. My health and strength have all but gone. I'm in bed for most of my life and Dr's have nothing to add.

 

[ronroush7]

I am sorry for what you are dealing with. Prayers and support .

 

[eleanor_rigby]

Hi, I'm sorry to read what you are going through. What Crohn's medication are you currently taking and which medications have you been prescribed in the past for your Crohn's?

 

[utisbug]

Hi, I've been through a number of medications in the past but have found my best results have come from zero medication, and just dietary changes.

 

[eleanor_rigby]

Hi do you know which ones? The UK tends to be very conservative with prescribing medication for Crohn's due to the expense. It might be that if you can get your Crohn's under control it may help the other issues somewhat.

 

[utisbug]

I've used Pentasa, Colofac, Mebeverine, Omeprazole amongst others..

 

[eleanor_rigby]

Have you used:
Azathioprine
6-MP
methotrexate
Infliximab (remicade)
Adalimumab (humira)
vedolizumab (Entyvio)
ustekinumab (Stelara)

 

[utisbug]

I've not been prescribed any of these. Thank you for taking the time to reply to my thread and bringing my attention to these. Have you any recommendations or advice regarding any of those medications?

 

[my little penguin]

Yes any or all of those meds work far better than the 5-asa they prescribed you
5-asa are NOT. recommended as a monotherpy for Crohns at all
Only to be used with other meds such as immunosuppressants
Like mtx or imuran
Wow
Just wow


Ds has been on humira plus mtx for over 5 years
No issues and clean scopes

 

[utisbug]

Thank you so much, incredibly helpful.

Are you saying I should never have been prescribed my medications without other medications to be taken with them?

 

[eleanor_rigby]

Hi, OK I would be wondering whether you need to be referred to a new hospital entirely. You say you have seen several specialists so I am quite horrified not one has mentioned these medications to you. Are they all at the same hospital? Where abouts in the UK are you? (I'm UK based as well).

Pentasa and the 5-ASA drugs you have been prescribed are much more suitable for ulcerative colitis because how they work is to coat the first layer of the bowel to heal ulcers there. But Crohn's is transmural and inflammation and ulcers can penetrate all layers of the bowel and through the bowel wall. Therefore pentasa is not going to do a lot of good, except in a small minority of cases who have very mild superficial inflammation. Most GIs do not prescribe these medications anymore because it has been shown in many research studies that they have very limited benefit and do not prevent Crohn's related complications.

I was never prescribed those medications and went straight to azathioprine, which has healed my bowel ulcers. This is a cheap medication so there should be no problem at all getting prescribed this on the NHS but it is not without risks. These risks sound scary but it is important to remember they are very rare and risks from untreated Crohn's is very common. Many people also feel the small risks are worth getting their quality of life back.
6-MP and methotrexate are similar drugs to azathioprine.

The other drugs I mentioned (remicade, humira, entyvio and stelara) have much better success rates of getting people into really good remission, however they are very expensive and so it's hard to get prescribed them in the UK. We usually have to fail the above drugs first. In countries like the USA these drugs are the first ones that will get prescribed when a person is diagnosed with Crohn's.

 

[utisbug]

Thanks for your time.

I live in Manchester.

I have been to several different hospitals to see different specialists.

None though, I hasten to add have suggested the medications you have listed.

 

[eleanor_rigby]

Ah gosh have you been to Manchester Royal Infirmary? They are meant to be leading experts in Crohn's! When was the last time you had some testing such as a colonoscopy, MRI or fecal calproctectin test done?

 

[my little penguin]

For example we tried pebtasa (5-asa ) with Ds at age 7
One because he was 7 and it was worth a shot
But the GI was quick to tell us if he didn't improve within 30 days to move on
Which what we did and he was placed on 6-mp at that point
So some try it but not for long if it isn't effective

 

[utisbug]

Yes, MRI is where I'm at. It is a joke.

I am currently on the waiting list for a colonoscopy and had a video endoscopy last year.

The last time I was supposed to have a colonoscopy booked I went in to pick up the bowell prep (and hadn't been given the date of the actual colonoscopy at this point) and was told the procedure was in fact booked for the very next day and since I had eaten that day (obviously) they couldn't put me forward for it as there wasn't time to ready my system.

The time before that they told me the wrong time to attend the hospital (written on both confirmation text message and letter I received), showed up for the colonoscopy, was told I was 6 hours late...was told it was human error somewhere along the line.

A time prior to that I hadn't received any confirmation whatsoever so I went in to the hospital by person to check I actually had a procedure booked because I did not want to take the moviprep needlessly. Was told by endoscopy unit I in fact didn't have a procedure booked. Unwilling to accept this I endeavoured to find out what was going on and eventually found a nurse who gained access to the locked office of the secretary of my Gastro Dr, proceeded to go through the computer system...nothing on me, went through a load of papers on the desk and I kid you not pulled a piece of paper out with my name and date/time of procedure scribbled on it. The MRI. Zero record of my procedure other than on a scrap piece of paper written by a secretary.

It is beyond a joke and is negligence. It's disgusting.

 

[eleanor_rigby]

Have you seen any of these gastro specialists at Manchester Royal Infirmary:
Our gastroenterology consultants who specialise in IBD are:
Dr. Richard Hammonds, Dr. Scott Levison, Dr. Marie McMahon, Dr. Alistair Makin, Dr. John Mason, Dr. Jo Puleston, Prof. Chris Summerton & Dr. Robert Willert.

http://www.cmft.nhs.uk/royal-infirm...ogy-and-hepatology/inflammatory-bowel-disease

If not, this is where you need to be referred. If yes, you need to be considering a PALS complaint for medical neglect

 

[utisbug]

Alistair Makin diagnosed my condition and I have been under his care since, although I have never seen him since and have seen other members of the GI team each time I have been in, much to my frustration.

 

[utisbug]

I've held back from PALS but really should contact them regarding this treatment.

 

[Scipio]

Are you saying I should never have been prescribed my medications without other medications to be taken with them?

Of the drugs you listed only Pentasa is a treatment for Crohn's, and it's among the weakest of all Crohn's drugs. Some research indicates that it works no better than placebo.

The other drugs you listed are for treating irritable bowel syndrome or heartburn. With the trouble you've had, most GIs would have long ago moved you on to try some of the stronger Crohn's drugs that eleanor rigby has listed.

 

[eleanor_rigby]

So when exactly was the last time you had a colonoscopy? That's really bad that you have been passed around like this. I think you should contact PALS and in particular quote this: http://www.nhs.uk/Conditions/Crohns-disease/Pages/Treatment.aspx

In particular: If your symptoms flare up twice or more during 12 months, or return when your steroid dose is reduced, further treatment may be necessary.
In these cases, medicines to suppress your immune system (immunosuppressants) may be combined with your initial medication. Medicines called azathioprine or mercaptopurine are most commonly used.

You are struggling unnecessarily and I would consider presenting to A&E, repeatedly if necessary until you are listened to.

 

[utisbug]

The last colonoscopy was over a year ago.

Initially (around 3 years ago) since I was getting no help I would go to A&E constantly.

I went 18 times in 1 calendar year.

They did what they could each time but of course told me the issue had to be resolved by GI's.

Thank you all for your replies.

My frustration is borne out of the lack of treatment I have received. I will be contacting Pals and bringing up the points you have made with my Dr.

I must stress I have not taken any of this lying down and have made it clear to all involved my utter annoyance at the treatment I've had. I've got to the point of begging specialists for help which makes the points you have made today all the more illuminating.