No Treatment So Far :(

[bensif]

Hello everyone,

This is my first post and to be honest I am at a bit of a loss with what to do now. I am 25 and live in the UK. I was officially diagnosed with Crohn's disease following a colonoscopy and gastrosocopy in July (paid for privately due to lack of help on NHS). It showed inflammation and ulceration in my ileum and biopsies confirmed Crohn's Disease.

I recently had a capsule endoscopy to check the extent of the disease in the small intestine. I have ulceration in the duodeum and have suffered an eroded esophogus. I have been badly flared since March and off work since July.

Thus far I have only been given oral medications none of which have worked to control the symptons. Prednisolone reduced the inflammation enough to have a fairly normal bowel routine but I suffered significant side effects on the drug.

I am currently using Asacol 6x per day, omeprazole, mebeverine, tramadol for pain management, adcol (vit d + calcium) and cyclizine for nausea. For the last month I struggle to go to the toilet due to the level of inflammation and my food intake has once again decreased.

I am trying a herbal supplement routine which has helped but does nothing for the inflammation. I have been begging for a biological medication for months but keep getting turned down. I don't know what to do and I am hoping someone here can advise!

Prior to being diagnosed I was a competitor in Men's physique and had qualified for a national level show. This disease truely ruined that and destroyed alot of hard work. My focus now is to achieve remission and get my life back but for 8 months I haven't gotten any closer

Thanks

 

[Clash]

It really sounds as if Asacol is not properly controlling your CD. There has been several studies that show that 5ASAs like asacol are work for UC but aren't that effective for CD.

I know things are different in each country, and treatment regimens differ. If they are turning you down for a biologic maybe you could move to an immunosuppressant like Imuran(azathioprine) or 6MP or methotrexate.

Keep pushing there is no reason if you aren't seeing results with your meds that they shouldn't switch things up for you.

I hope you get to feeling better soon.

 

[bensif]

Thanks for your reply I appreciate it. I didn't really want to increase my asacol dose as I just don't feel it's beneficial as you said, I don't think it's working for me.

Iv started eating plantain and added digestive enzymes in the last day and I'm able to have BM again but I'm still bloating and producing huge amounts of gas. This destroys my appetite and makes me feel dreadful.

I just pray they agree to treat me next week!

 

[CTB86]

I agree that Asacol hardly does the job, especially for those whose Crohns is worse. I tried pentasa along with prednisone, but they didn't do the work. My doctor later on put me on Remicade which works perfectly for me. I raaaaaarely get flares! I love it!! The side effects are not the greatest, but what medications don't. I am off prednisone, thankfully!! Because of prednisone I got avascular necrosis on my left hip and due to that I had to get a hip replacement. I live in the US, so I don't know if the UK provides remicade (infliximab). The website to remicade is below, I also called them to ask if they provided it in the UK and they gave me another website where you can contact them. I have never paid out of pocket because I had insurance, my insurance ended and was denied when I applied for it because of my pre-existing condition. I freaked out because remicade is expensive, but thankfully I qualified for a different health program because I wasn't working at the time. I was told that remicade actually helps those with low income and does not charge you for the medicine for a year. Don't quote my words though, I never really looked into because I qualified for the free healthcare for a year. The great part of remicade is that you receive intravenously about every 8 weeks, so no pills!! I convinced my doctor every 10wks because my body can go that long without it and the less medication in my system the better=) Good luck! Hopefully they find the right medication for you so you can live a normal life.

It doesn't let me paste the actual link cause of "spammers"

Remicade website - remicade.com

Contact Janssen for questions - janssen-emea.com ... click > about us> contact us

 

[UnXmas]

I can't comment on specific medications, but don't give up on the NHS. Waiting times for tests and appointments are often long if you're not an emergency, but they will get to you eventually - phoning consultants' secretaries, hospital appointments lines, or getting your GP to chase things up for you can help speed things along.

What is your relationship with your consultant like? Treatments often come down to a doctor's discretion. You're always entitled to a second opinion on the NHS, so if your consultant isn't willing to try the treatments you want, it may be worth asking your GP to refer you to a different consultant (you'll probably have several weeks wait, but it will be worth it if it gets you further forward). If the second opinion isn't helpful either, you're entitled to ask to see another consultant if you develop new symptoms or if your symptoms significantly worsen - in this case it comes down to the GP's discretion as to whether they think your disease justifies another referral.

 

[bensif]

CTB86 thank you very much for that information and for taking the time to find and post it. I greatly appreciate it.

I ended up in hospital Wednesday evening did to severe abdominal pain which I already knew was from very bad constipation. I was told to go for an X-ray as I had a video capsule endoscopy 3 weeks ago and the pain started around 10 days after so they were concerned the capsule was stuck.

The X-ray confirmed it wasn't thankfully but it did show that I was VERY badly constipated. I already know this is dangerous for people with crohns but the hospital didn't seem bothered and sent me home. Tramadol isn't an option when I'm constipated as it constipates me further and I have difficult urinating on it. It also dehydrates me massively.

After calling the hospital constantly on Thursday I eventually got through to a GI consultant. After being told to be more patient and that the NHS isn't here just for me (I laughed) he prescribed me budesonide. I have a follow up appointment with my actual consultant on Tuesday. Prednisolone didn't work for me so I doubt this will. I will be asking for Infliximab on the basis I haven't been able to work for 4 months now and shortly fall into 50% salary sickness pay which will prevent me paying my mortgage. Not only that but I just want my life back!!!

 

[bensif]

Just saw my consultant and had some interesting news! It would appear that I was NOT applicable for the video capsule endoscopy as X-rays showed the dummy capsule had actually gotten stuck in the lower part of the small intestine. Unbelievably I had this done on 9th September and my X-ray wasn't checked until 30th October some 12 days after I had the video capsule done.

My consultant was shocked and said this is probably why I have been in so much pain since I had it done. I had X-days done at A&E last week following severe abdominal pain and was told they were fine but I'm not skeptical as is my consultant. I need to have another X-ray and provided it is clear an MRI.

He has put me on Asathioprine starting at 100mg tapering up to 150mg. Budesonide just isn't working for me. He has also given me laxatives to deal with the severe constipation from the narrowing of he small bowel.

I am actually quite concerned now as I knew something was right as this is the worst I have felt since my diagnosis. The good news is that my consultant is a genuinely nice man and is doing all he can within the confines of the nhs to help me. He said he will hunt for my capsule results this afternoon and ring me with the results. He did however say it is quite probable that the test won't show much as the capsule most probably didn't travel far enough

I have been told the AZA can take 4-6 weeks to kick in but prednisolone is not an option for me due to side effects. Has anyone had similar experiences? When can I expect to feel a difference?

 

[bensif]

Ok... If anyone can help this would be greatly appreciated.

After a week in hospital when my flare really worsened things have taken a turn in the wrong direction. Whilst admitted they retested my thyroid and officially diagnosed me with hyperthyroidism (which I already knew). My thyroid doesn't bother me; I can eat a great deal of food and not really gain any fat and it aids protein synthesis. The trouble is my thyroid exasperates my crohns symptoms because I can't eat, I lose weight much faster.

My consultant has done a complete 180 on me and is now convinced he miss diagnosed and I infact am suffering from thyrotoxicosis. A rather rather form of this can bring on some GI issues similar to crohns, but only a few.

Now he's my problem. A recent MRI whilst on Azathiprine, budesonide and ciprofloxacin showered very low volume ulceration in the terminal ileum and no inflammation / stricture. They immediately took me off all medication to treat my thyroid instead. Since doing so my symptoms have worsened again. I'm on the toilet 8-10 times a day although my main issue is constipation / bloating / impacted faeses which leads to total fullness, acid reflux and no appetite.

My original colonoscopy / gastroscopy showed grade B esophagitis, ulceration in the terminal ileum, inflammation in the TI and biopsies confirmed chronic active ileitis. I have the original images and pathology report. My consultant is now disregarding this and I am at a loss with what to do?!? He has told me sometimes those findings are normal; can anyone confirm this?

All the research I have done suggests that a large majority of patients diagnosed with chronic active ileitis (early CD) develop CD within a 2 year period. It has been 6 months since my colonoscopy and I have been suffering this flare for 9 months.

Any advice would be greatly appreciated. Thank you.

 

[bensif]

Bump for desperate help

 

[CTB86]

Hi, I just logged in after not being on here for quite a long time. Just wondering how you've been?