Crohns / ulcerative colitis sufferers

[ColdAsIce]

Potentially good news if this trial is a success

Possible Vaccine

So many of us usually have similar issues as children with Dairy products so this news doesn't really surprise me.

Fingers crossed things go well with the trial in London.

 

[ColdAsIce]

Guys... those of you with confirmed UC or Crohns, can I ask what the 'determining' factor was in your actual diagnosis of this?

i.e. Was it from blood test results, or from a colonoscopy or what?

Reason I ask is I've been suffering for the last 2+ years from unknown lower abdominal disorder of some kind, ranging from pains, to severe constipation, tiredness, lethargy, depression etc - I've had a whole load of tests done, but nothing has come back with any actual diagnosis.

Which in itself can lead into a vicious circle of depression of not knowing what's wrong, and therefore having no treatment. December and January were a lot better, but the last couple of weeks seem to have gone backwards.

Don't give your GP any rest bite until you get a diagnosis. Have you gone for a colonoscopy etc yet?

 

[ColdAsIce]

Cheers fellas, I've long since given up on GP, I've had a private consultant appointment, and NHS consultant appointments, and I've got a 'new' consultant booked in for April, but I'm not hopeful.

I've had a colonoscopy, as well as a CT scan, but nothing was found. (Obviously looking primarily for cancer etc)

Thankfully it's not a 'life-spoiling' condition, but it certainly has effects and knock-on effects, and probably the frustration of it more than anything, as well as not really knowing how best to tackle it, if it's gone, if it's recurring or what - just gets me down after a while.

I remember a time before I was diagnosed, describing much of what you have above. Along with rapid loss of weight, constant pain, fatigue, sickness etc. Doing my best to go to work everyday. So exhausted after work I would sleep when I got home at 5:30pm, pretty much all the way through to the next morning to repeat it all again.

The useless GP didn't have a clue, thankfully someone at the Hospital suspected it could be Crohns and got me a bunch of tests that would confirm it. It was extremely hard not knowing what the hell it was. It definitely gives you some mental rest when you at least get a diagnosis.

 

[ColdAsIce]

Prednisolone, **** that drug. Had a terrible time on it. Moonface, big huge rash on my back. Was constantly hungry and the drug stopped any notion of being full.

Was at a hotel and had something like 8 or 9 slices of toast, only stopped because I knew it was wrong. I could have thrown another 10 down easily Thankfully got off it shortly after.

 

[ColdAsIce]

Has anyone with UC had blood tests done that showed abnormal Liver Function Tests?

With Crohns, yes.

I was once put on a drug cannot remember name of the top of my head unfortunately that very quickly messed up my liver function tests.

Even once I came off the drug, it literally took months and months before I got back to normal levels.

Liver function is always tested when I get asked for bloods.

 

[ColdAsIce]

Specialist in Edinburgh mentioned there are a couple of products are are maybe 2 years away from the market in the UK that will give further options for treating Crohns. I think in very specialist cases they can even use it now.

I've never found steroids to be the answer to treatment but i'm glad to hear it's working for some on here.

 

[ColdAsIce]

I found they worked for me (Prednisolone) really well. However, I couldn't sleep / struggled to sleep when taking them at full strength.

After my bad reaction to be Azathioprine, i'm being placed on methotrexate which I am just waiting on my blood test results before starting.

Yea I had a terrible reaction to Azathioprine, absolutely awful stuff and it's been a number of years now but I they then moved me onto methotrexate also. My problem was the scar tissue was already so severe that the steroids did little to nothing to repair any damage that was already made. So in end I had to go through surgery.

 

[ColdAsIce]

If you don't mind me asking :

- What was it like?
- Are you glad you had it?
- How're you doing now?

The choice was well and truly taking out of my hands. I started deteriorating pretty fast. I basically stopped eating due to the pain having anything in my system would bring. A surgeon came to see me in the Hospital, said he could operate on me within a day or two and explained what would happen. So I agreed to a re-section. Taking your first steps after surgery is a whole new level of pain too Think I was a week in Hospital before I could leave. It seems drastic but there is no way I would be able to function longterm by remaining on the cocktail of pills and steroids they had me on.

 

[ColdAsIce]

Was this your large intestine or parts of your small intestine? How long was it until you were able to exercise etc.. ? Did you have to wear a pouch?

I've unfortunately been through surgery twice. I think it was my small bowel that had to go through a re-section. The 2nd time was quite strange. I started limping at work, had a terrible pain down my right side, around the hip area for days. I couldn't shift it. Stupid GP referred me to the nurse to take a look at my leg despite knowing I have a history of Crohns. The nurse thought I had an infection and gave me antibiotics. The pain wouldn't shift. I returned to the GP complaining that the pain remains. This whole time I continued to work full days in pain, barely able to walk lol. GP directed me to orthopedic department at the Hospital. They took x-rays of the leg but couldn't find anything. Thankfully he took a look at my medical history and saw alarm bells with the history of Crohns. Think I got an MRI scan in which they found an abscess and a hole in my bowel. So yeah, another emergency surgery had to be performed because the fear that this abscess could rupture at anytime.

Once again lucky if I had a day to process this information before going into surgery. I just remember begging the Surgeon not to give me a pouch. He had told me I most likely would have to because I had gone through surgery before. Said he would do his best and thankfully when I woke up he made the decision not to go ahead with the pouch after all. I take b12 injections every 3 months, have trouble absorbing vitamins. I'll probably never have another solid poo in my life but it is controllable.

Between the 1st and 2nd Surgery I wasn't on any medication. It was thought the Crohns was in remission and looks like I suffered more from complications after the 1st surgery. Currently on Humira injections once a week and touch wood have been ok for a about 5 years now.

 

[ColdAsIce]

cause and effect anyone?
eat bad food body reacts to it, don't need a dietitian to tell me that and who are probably eating the same bad food.
people don't like to hear about there bad habits.
i was only putting something different out there..

I look forward to you educating all the Specialists that have spent years of their lives studying these diseases and letting them know that a simple diet change will fix everything for those suffering. Nice one Pooley, you legend.

 

[ColdAsIce]

It seems the steroids have now stopped working even at 40mg. I’m now awaiting a call back from the ibd team to be admitted today for surgery. Things over the weekend have gone a bit crazy with lots of bleeding and constant trips to toilet.

Tbh I have had enough now and need something doing. I do not want any more steroids as they are making a mess of the rest of my body and mind.

I felt the same when they had me on all sorts of steroids. I really hope surgery will be a big success Moogleys. I've kind of been lucky in the sense that i've had surgery twice at very short notice. So didn't have time to really digest or overthink the surgery. There definitely still appears to be a conflict between surgeons and other health professionals. Before my first surgery I was down to something stupid like 8 stone maybe less in weight. Nothing but skin and bone. One Doctor was adamant that I wasn't "ill" enough for surgery and that they should continue with the steroids. That day in Hospital a surgeon came to see me and said he would operate on me tomorrow if this is what I want. Ran through the risks with me etc. I agreed and literally within 24 hours was having surgery.

 

[ColdAsIce]

Guys leave the injection out of the fridge for 15/20 mins and it won’t sting so bad. Also I go for the upper thighs as the injection point.

 

[ColdAsIce]

Biologics are my next course of treatment.

Its terrible at time isn't it mate. If you need to vent I think were all here for you.

I've spent the last 12 months in the spare room as it has an ensuite that I can just about get too if I have a middle of the night episode.. Struggling with any erm.. Special time with the Mrs, as I feel like I'm gonna fart mucous etc at any point.

Just waiting for funding to be approved for biologics.....
Anyone know how much it actually costs...

I take it you are not living in the UK?

 

[ColdAsIce]

No, I'm in the UK.

My point about costs was that I'd pay to get the treatment now rather than wait for them to approve the funding.

Sorry, this must be a thing in England? If there is a treatment that they can try then you should be placed on it. Are you sure the specialists are not ruling out non biological treatments first?

 

[ColdAsIce]

I think we've exhausted the Non Biologicals now, They are looking at Bio's as AZA doens't seem to be working after 3-4 years.

Because they are so expensive they have to apply for funding from the local Authority on an individual basis, Apparently its taking 6+ weeks for approval. I've had all the pre bio blood tests (HIV etc) They took about 12 vials last time i was there.

This some crazy post code lottery hell you are describing. I'm not sure I understand how the NHS cannot provide the drugs you need.

 

[ColdAsIce]

Has anyone had a resection? I've got two or three strictures to come out and I was just wondering what the recovery is like.

Two resections here but the last one was a few years back. Recovery time was 2-3 weeks in hospital plus more time at home just resting. My cousin basically has keyhole last year and was out in days. So things might have improved? There wasn’t even any drugs like humira that existed in the market place when I had my last surgery. Also agree with you, the liquid diet is just to give your system a rest. It’s not a fix.

 

[ColdAsIce]

Yea I definitely had surgery before it moved to part key-hole. I've got a massive scar going across my stomach and a 2nd one going straight up and down from the belly button for the 2nd