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beth

Joined
Mar 4, 2009
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Hi.

I've recently been diagnosed with Crohn's disease following a colonoscopy. I'm on the Elemental diet (day 8), and yet to see any real improvement in symptoms. If anything I feel worse on it than before. And I've got an op tomorrow to investigate and do something about a fistula in my bottom. And whilst this is all getting me down, from reading other stories on here, it looks like it could be a whole lot worse. What a horrible crappy disease. :eek:

Beth
(from Cambridge, UK)
 
Did you get any medications? For me it took the meds to kick me into remission before I really felt better for longer than a day or two. Now I take maintenance medication and still keep an eye on what I eat.
 
ooooh fistulas repair. It feels much better after that gets done...at least the stabbing pains go away. :) My drain they put in is all healed up...the internal ones hurt like a bugger, but the one that they "repaired" is coming along nicely. :)
 
Hiya Beth,

Good to see you found us! Nice to see someone close by too.

Are you at Addenbrookes? My Consultant is Dr Middleton.

I was diagnosed Xmas 06 with Crohns ileitis.Thankfully I have avoided surgery this far but have problems with ongoing inflammation.

I was on elemental from Xmas 06 til June/July 07. Then went onto LOFFLEX diet to reintroduce food.

Have to say I do feel much better once on it but its difficult to balance out when you have so much fluid to drink and then extra water too. Felt pretty tired the first couple of weeks.

Just PM me if I can help in any way ok?

Hope you get some relief soon. Thinking of you ((hugs))
 
Hello Soupdragon - thanks. Yeah, I'm seeing Stephen Middleton, well, not at Addy's, private - BUPA are paying some of it. Elemental for 6months... :eek: 8days is more than enough. I have been pretty tired of late. Which I've mostly put down to self-inflicted messing about in the Scottish mountains and trying not to fall off. Elemental really doesn't seem to help put any energy back into the system when you've exhausted it all.

No meds teeny5. The diet stuff is first call.

Funnily enough jamie, no pain. Well none since the abcesses went away.
Dont think I'll be pain free after tomorrow somehow.
 
An update: So I had my op in early March, but the surgeon couldn't find the fistula entrance. He didn't poke about aggressively in case of making things worse.

I came off the Elemental diet at about the 3 week point, having had help from Soup and Colin on sipping it s...l....o......w.......l...........y! Incredibly slowly in my case, else it went through without touching the side too well.
The LOFFLEX diet has been okay. Found out I dont tolerate potato, cauliflower or Japanese Miso soup/paste well. Adding other stuff back in gradually. Wheat has been okay for nearly a week now. Going to try yeast next so will be eating lots of home made bread, and marmite! Might even try oats this coming week.

Whilst I'm a lot better than I was, I'm still visiting the toilet about 3 -5 times a day for Number 2's as Hubby would say. Down from 5 - 10+ or more. So good progress but not 100%.

'Close but no banana' also sums up the surgery success. I have another abscess. So saw the surgeon chappy today. He wants another go at finding the causal fistula, which is currently scheduled for next thursday, the 2nd April. Something to look forward to eh! - he's going to be a lot more aggressive with it apparently. Ouch! And given the recurrence of the abscess and the not quite remission with just the diet, is suggesting we add Azathioprine to the regime. Cant say as I'm surprised. I'll phone the Gastoenterologist's secretary for an appointment to discuss further.
He's also suggesting I take Co-amoxiclav for a couple of weeks to really kill off the abscess bacteria - I'll need to make an appointment with my GP for more of that as I've only got a week in stock of that!

Other than the abscess I'm feeling pretty good. I'm putting on a little weight, and my strength has largely come back so I'm aiming to get some fitness training in to keep my weight in check - I still wouldn't mind if it dropped a little, and to ensure I'm fit enough for another wee trip to Scotland in a few weeks.

However, all through my troubles my hubby whilst trying to look after me and keep me on the straight an narrow, hasn't been well himself. Checking his diary of the last 23 days he's had 17 days with migraines, sometimes more than one a day or it's come back. I worry more about him than I do about myself now - I must be okay! His problems are caused by a brain hemorhage - aka a stroke, in 2002, so I guess he wins! :yrolleyes:
 
update

I got the results of some blood tests we did the other week... My CRP is down to 6 - that's normal. YES! it looks like I'm actually controlling it! not just mitigating the symptoms. Colonoscopy scheduled for next week to check.

Also showed that I'm slightly allergic to tomatoes.
 
yayy congratulations on normal bloods!
do you feel better as well?

good luck with your scope!
 
I felt a lot better for a few weeks now. Been doing some stuff round the house that had been left for years... like finish painting the bare plaster in the kitchen. However I do seem to get tired pretty quickly. So perhaps getting better, rather than 'totaly sorted'.

It seems to me I've been very very lucky and <touches wood> got off lightly.

Assuming the colonoscopy shows improvement, there's still the fistula to continue dealing with.
 
glad that youve felt a lot better :)

i think it would be normal to still be so tired. your body has been through one hell of a ride! all of ours do when we flare. it must take a long time for it to recover and regroup after something like that.
get lots of rests and sleepies and dont push too hard still!

hope it keeps goin well for ya
 
Thanks for that Kello, makes sense.

Hope things settle down for you too, you're one brave kid (yeah I know you dont have much choice so how can you be brave! lol) to put up with so much.
 
Well, I survived the colonoscopy this morning. The good news is that inflammation is down from what it was. But I still have "patches" of inflammation throughout the colon and into the small bowel. And it bloody hurt despite pethadin and happy drugs. The prep yesterday was bloody awful too.
Dont know what the plan is now, will have to wait for the biopsy results first.
 
How long do you have to wait for your biopsy results? I had a c-oscopy 2 weeks ago, and I don't find mine out til the middle of next week. Is it faster/slower in the UK? (I'm hoping faster for you!!)
 
So I saw my Gastroenterologist this afternoon, and as I was expecting he has said I should be on Azathioprine. So that's what we'll be arranging over the next couple of weeks.
Looking at the pictures taken during the colonoscopy there was inflammation in small patches throughout the colon and terminal illium together with some ulceration.
[crosses fingers that it doesn't take a dislike to me]
 
My doctor wants to start me on Azathioprine too. I haven't gone in for biopsy results or anything yet, but he already told me that a couple months ago, but haven't started yet. Hope it works for you! :)
 
So do I! Since historically I've been a 'allergic' sort of person (asthma hayfever/etc) I'm hoping the Aza will further damp down the other things as well.
 
So, time for a leeetle update:

Started Azathioprine on monday, and haven't dissolved into a splodge of green goo yet. So there's hope yet. Only on 50mg/day so far, but will bump it up to 150mg/day over the next couple of months.

Saw my surgeon this afternoon. And from the outside my fistula tract looks okay to poke it with fibrin glue and see if all goes away nicely. So op scheduled for late october - to give the aza time to do it's stuff as that'll help the glue.
 
Ha ha! that time is tomorrow. I'd forgotten what I'd written about here. lol to the Aza too.

So the plan tomorrow is a very leisurely day till mid afternoon, a quick dash the 3 miles to the local hospital and I'll be resigned to my fate :) Dontcha just love hospitals. Least this one is private - dont get that wrong, I love the NHS but for non-life threatening stuff BUPA beats the pants off the NHS.

I'll probably stay in overnight since its a late start and I seem to take an age to get the GA through my system. Just better remember to take a Bear with me tomorrow! - I haven't slept without a Bear in umm about 16 years, including the wildcamp nights!

And hopefully he'll take out the seton and fill the tract with fibrin glue or whatever it is they do with it.

So well minor, and nothing to worry about. Yeah right I always worry! I have temazepam for tonight to make sure I get a good night!
 
Hey Beth, I just got surgery on 10/8 and c-ton placement again on my fistula. This is the second time I get a c-ton, same fistula. The first time my doctor pulled it out too soon so it closed up with Humira and Flagyl but there was an area that still filled up with pus so it came back. This time the surgeon place it, it doesnt bother me at all, I dont feel it since he said he did a trick. It is there and he will removed it this time when it is ready. Good luck to you and keep me updatesd
 
Back. The surgeon said it looked pretty good for the fibrin to work, so he put a stitch in the internal opening and filled the tract with fibrin. So it's cross fingers and hope to hell it works as otherwise there aren't many options apparently - 50/50 chances apparently, at best.

The GA was better this time too. Only a little pukey feeling after I came round but that subsided pretty quickly, and so did the morphine/pethadine dry mouth. The anesthetists said he'd use all the anti-puke measures he could and the expensive anti-emetic.Seemed to do the trick as despite the very late start, didn't go down to theatre till 6:30 I'm back at home and about to sleep in my own bed. Wayhay!
 
Yay Beth - hope this time is a success! I have/had internal fistulas so no idea what they do with those. And no real idea if they are gone or not apart from the fact that I can't feel anything.
Sleep well :)
 
Thanks Shaz, Shantel, ic whoever you are, and IMC! Shaz, I certainly had ulcers that bled quite a bit, but I dont know they went anywhere other than the inter-sphincteric fistula, apparently a classic case of where they like to erupt!

Hmmm, should go to bed I suppose. Just revelling in the 'hey I had an operation less than 6 hours ago and back at home already' feeling! :)
 
Hey Shantel. I slept most of it. Got up for a couple of hours this morning but wasn't really over the anesthetic and stuff so went for a doze. Woke up 4 hours later!
Better for it tho. Just went and did a bit of shopping and took the dog for a walk round the park. So not bad at all.

I did take my little pink Adventure Bear. One of the nurses said something like 'cute toy'.... so I corrected her! :)
 
Phew. What a time. Last night had some really horrible strangeness happen. Went to bed okay and as I was dropping off to sleep my heart jumped a bit and did an extra heavy thump - usual palpatations thing everyone gets occasionally. Classically when you're dozing off or 'at rest'. Except a bit later my heart was still thumping and it went into race mode. I felt really odd, and not a little scared. It didn't last long so I other than trying to tell Paul about it, who just rolled over and fell asleep, I didn't do anything about it. Happened another couple of times over a period of an hour or so. At some point I must have fallen asleep.

So this morning I wake up in time to get an appointment with my GP. Feel a bit odd, my right side hearing is strange. Almost like it's being delayed.... or it's blocked because I laid on that side, or something. And my tinnitus which is usually pretty bad compared to what most people report, is at full volume. Hmmm. Me think this could be fun.

GP listens to my lungs, heart, and looks in my ears, and quizzes me quite thoroughly! And says I should have gone to A&E. Ooops. The surgery has an ECG machine so arranges for the nurse to hook me up. And he wants to see the results before I leave the building. And some more blood drawn for tests - different tests to monday's. Dammit. More holes in my arm. ECG print out was fine! - mega phew! or what! Blood test results tomorrow probably. I also have an appointment to see him again on friday morning to review how things are.

And I'm off methotrexate as this isn't the first bunch of funnies that have happened shortly after the dose on monday nights. Well, at least until Ive seen my GI consultant.
 
Ooooo how strange. Least the ECG was ok, and lets hope the bloods come back ok as well. I know my mum gets bad palpertations occasionally, but nothing in teh last year or so.
 
Gosh Beth you have been through it haven't you. Glad the ECG came out ok, but the doc was right, you MUST got to A&E while something like that is going on - get an ECG while it is happening... call an ambulance - they can do an ECG on the spot... and I'm not saying abuse the system, because that's what they are there for. I can say that with confidence coz my hubby is a paramedic and the most exciting job he had last night was someone with earache (I kid you not)...

I know it's scary, and the last thing you want is more tests and crap, but you must put yourself first... god I sound like I am preaching... it's the mum in me - can't help it.

Hope you feel much better very soon x

Lishyloo
 
Thanks guys. Feeling a bit better today. The Doc also gave me a script for some back pain relief patches. Nothing major in dose, just 5ug/h when the top wack is more like 20ug/h but I do believe it is kicking in already! :) Very nice to be feeling happy with not a care in the world...:ylol2: Hmm. I'm sure it'll get its payment one way or another.

I didn't go to A&E because it didn't last long each time.Dont think anyone would have got to me with an ECG whilst it was going on anyway. It did it again for a 10 - 20 seconds again yesterday when I was dozing, but only the one bout.

I'm hoping no news from my GP is good news. I'll find out tomorrow!

As to what happens if I dont go back onto MTX. I really dont know. Having down some more reading up I think I'll be prepared to go back on to a lower dose and maybe by injection so it doesn't mess up my stomach/guts as it usually does on tuesday. Which kind of brings me to my hypothesis.All previous weeks I've not been taking largish quantities of codeine or other opiates. So when it hit my slowed down system this week I suspect I got a much bigger absorbed dose than usual. Which maybe irritated/upset more things than usual. Who knows!

Haven't phoned my gastroenterologist today. I clean forgot about it!
 
Heart racing is scary Beth. I'm glad you got it checked out and although I'm sorry you're going to have more puncture wounds, maybe they'll figure something out.
 
The troponin and thyroid blood tests were normal. Which is a relief, especially the former! So no further action needed at the moment. Phew! Obviously if I get further 'attacks' of whatever this was it'll need to be investigated.

Appointment booked with my gastoenterologist week after next so that'll give me a wee bit of time to chill and see if these funnies are linked to the MTX or if they go away.

And my GP is happy to up the patch dose if I get on okay with them but need more pain relief.

Err, think that's it for now.
 
Great Beth, I hope you have no more 'attacks' as they sound scary!
Feeling rather unpleasantly weird myself and its not nice is it??
 
Hey beth, well I will assume it is the prednisone. I've felt worse ever since going down to 20. I have been tired for years but this is worse and now down at 10 started getting muscle pains and weakness and tingling and all-over out-of-it feelings. Feel like I can hardly stand up.
Did some reading and apparantly once you hit 20 is when the body starts to struggle a bit. Not exactly sure what they can do abiout it though? I'm sposed to be going down in 5mg lots but discussed with doc and changed to 2.5 but after the last drop and feeling so ill this week we may have to do 1mg which I hear a lot of people do?
Gosh it's been a nightmare aftre feeling so great at the higher doses. Good news is that my bowels are behaving nicely and continue to improve! :)
 
I saw my GI consultant this evening, and.... I'm off methotrexate. It's for lots of reasons: he was concerned about it exacerbating my asthma, the drop in my fitness - dog walks round the park were becoming a struggle, and the 'brain fog' apparently never goes away completely even after you get used to the drug - loosing on average 10 - 15% brain brightness. Since I'm paid, when I'm employed, to be a thinker that's just not on. As well as other quality of Life issues, like I've been so damn tired the 2 days following a dose I've slept much of it away. So bang goes another 'wonder drug'. Just how many of these things are there till we hit the buffers.

He said we have 3 options:

1) do nothing.
2) 5-asa - Pentasa/Asacol/mesalazine.
3) anti-TNF biologics - Humira/infliximab

So we discussed, and (1) really isn't viable as I had serious ulceration in my terminal ilium originally and were to some extent still active at my last scope in june. So not recommended. We need to do something. Which brings us on to (2), which is much less powerful than any of the drugs I've so far failed with. However it wouldn't be his first choice given where we are. Which brings us to the biologics like Humira and infliximab/Remicade. I had discounted it on the grounds I'm not pooing like a thing possessed so I wouldn't get NHS funding for it. I cant get it privately, cost as well as I dont think it's available privately anyway. So I'd need to see him at Addenbrooke's (NHS). Or rather get referred to him there, and he'll then pass me onto the IBD nurses to go through the screening and training program for humira. I don't know whether there is a bunch of funding applications that he'll need to do with the PCT - he thinks there wont be a problem as we have the evidence needed from my scopes.

I don't really know if I want to laugh or cry at the moment. I know this disease is serious, but that I'm doing very well with the diet and maybe because I'm asymptomatic, I kind of refuse to accept I've got it badly enough for these heavyweight drugs. I don't know... I just want it to go away.
 
Oh Beth, I hear you!

I don't think it has completely sunk in with me yet either! I've been tapering pred since mid-july and seem to have few bowel symptoms (lots of painless gurgling and very occasional twinges) even now I am at 10 mg, but it makes me a bit mental at times, especially for a week after I drop the dose - actually more than a bit mental in that I came very close to sending myself off to Emergency Psych Services a few days after the last drop, but ended up taking a valium and going to bed until it all passed.

And so, so tired. On wednesday i felt ok and so when I came home from work did about 45 minutes with the weedeater.

Thursday (yesterday) I felt AWFUL in general and had really sore hip, butt and arm muscles and felt tired at like a 9.5/10!

Feel like I am still recovering today.

When i last saw my doc to discuss options after steriods he agreed it was POSSIBLE for me to maintain things for a spell with no medication. He said it was a risk but it does happen. I am currently taking a LOT of natural remedies under a naturopath whom I have much respect for.

I was so uncomfortable to go on Imuran, I felt at this point it could do me more harm than good as I am a firm believer that your belief about a treatment will impact on its efficacy.

I still haven't accepted the disease, well not really. It seems so big and I just don;t want to deal with it - have enough troubles as it is!

I want it to go away too

((((HUGS))))
 
Thanks Shaz. Sounds like we should have a hug fest!

Having done a few things yesterday, bit of paperwork, run the vacuum around to pick up the dog hair! as well as the appt, I feel like someone has stolen all my energy this morning. It's just so bloody frustrating isn't it!

I think a shrink once told me if you are in a fit state to determine you should go to psychiatric/psychology type services you dont need to. The ones who do need to, just dont know it.

I'm rather glad I haven't been on steroids, yet. The Elemental stuff whilst horrible at the time did seem to do the initial trick of calming everything down, and keeping to a safe diet keeps me pretty asymptomatic. Although at some point eventually I'm sure I'll get bored of smoked salmon for lunch! - 3 times this week - I just try not to think of the environmental impact of cheap farmed salmon.
 
hi beth,
My bro sent me a link to Marillion covering Pink Floyd last night and I immediately thought of you.

It's strange to me you haven't tried ASA drugs yet. They usually are the first to try and have no side effects (unless like me you're allergic to them) so I'd give those a shot. Usually takes 2-3 weeks to see results. Just my 2 cents. I'd rather take baby steps before going the biologic route.
 
OH Beth you poor thing - I think you summed it up on one of the other threads - "Quality of Life".

It stinks doesn't it.

Not sure I can offer any useful guidance at all, but I am thinking of you.

Lishyloo
 
Fen, the GE said that we could, just it wasn't really going to do much to the ulceration in the terminal ilium, more effective drugs were needed to make sure that didn't come back, or get worse. My ESR/CRP are still high so there is still active inflammation somewhere and he really thought the best option was Azathioprine. However I really didn't tolerate that at all, or the alternatives. So it's very much a case of going up the scale rather than down.

Thanks Lishyloo. Hope you're not too bored in hospital!
 

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