Back again :)

[Claire617]

Well I'm back again! And I'm bringing my friend crohns with me er yayy? I was up with a fever last night so thought I'd check the site out and forgot how much humour people have here despite everything. Anyway as I'd disappeared thought I'd post here, surgery gave me some time off but tests shows severe inflammation in the join and large colon. However I'm gaining weight have no pain and no blood I have a bit of fatigue but that's because I work so much so I'm like huh?
Anyway hope to get more first hand views on stem cell treatment as I have decided this is my next option. My consultant is totally against it and wants me to have a colostomy, his reason is it's a new treatment which you don't know what will happen 10 yrs down the line. Well if no one tried these things, how are we going to know and it's not like they know what could happen with infliximab or humira.
Hope everyones as well as can be

 

[Cat-a-Tonic]

Welcome back, Claire! Sorry to hear the inflammation is back. Have you read through Mr. Ziggy's stem cell thread? I read the entire thread in one go recently and wow! It's inspiring! I'm sure your doctor has to try to dissuade you from trying new and "unproven" therapies such as that, but it sure seems to hold a lot of promise. And, if as your doctor says, you have a recurrence 10 years down the line, you could always do the colostomy then, right? Why cut things out now when there's a chance you could heal things instead? I say go for it, and let us know how it goes! I'm not diagnosed yet so stem cell isn't an available treatment for me, but I sure get inspired reading others talking about their stem cell experiences. Gives me hope for the future. Anyways, wishing you all the luck in the world with it! Keep us updated on things!

 

[Claire617]

Hey cat, I was reading your thread about your partner showing symptoms and then you said you haven't yet been diagnosed, I was like what?! But you've been on this site for a while and I'm assuming you've still been suffering from symptoms, that's horrible! Yeah I was on the site when ziggy went through his treatment and have spoken to Rob about his upcoming transplant, also looked at another thread from Aiden? who has recently undergone treatment and again another positive read

 

[Cat-a-Tonic]

Yeah, unfortunately I'm still undiagnosed. But I'm doing pretty well these days in spite of that - my GI put me on Entocort and it's been working pretty well, so I'll be on that for another 3 months and then I'll start undergoing more tests again to try to get diagnosed. My husband has been having symptoms lately too but I'm really hoping he's just got a virus or bacterial infection or something that isn't IBD.

Sorry to hijack your thread there. I'm excited for you about the stem cell treatment! Where do you go to have the treatment done? You're in the UK, right? I'm assuming you can stay in the UK to have the treatment done?

 

[Ian]

Good luck with the stem cell venture Claire!

You're from the UK, right? Where would you be having it done if it all goes ahead? I'm quite interested in it myself if other treatments don't go to plan.

 

[Claire617]

Haha no worries Cat, see I've been out the loop so long that I've forgotten the uk name for entocort?? Yeah the most likely place will be in Nottingham so a fair trek from where I live, one consultant Ive met at my local hospital is directly involved with the trial so it makes life easier!
Thanks Ian, yeah I live in Cornwall at the mo, I told my consultant life or death situation I'll have a colostomy but hell I'm going to try every other avenue first!

 

[Ian]

Lol just noticed Cat already asked my questions before I did haha.

I assumed it would be Nottingham - lucky for me that's pretty close should I ever pursue it, I live in the Midlands. Let us know how you go about getting involved if you do it! I'd feel the same about a colostomy at this age.

 

[Cat-a-Tonic]

Claire, I think that Entocort also goes by the name of Budesonide. It's a steroid but it's not systemic like pred, it only works on the intestines. (Since it's not systemic, fortunately it doesn't come with the side effects of pred!) I've been on it since October and am doing pretty well on it.

I'm not familiar with UK geography (when you say Nottingham I think of Robin Hood! but I don't know where it is). How far of a trek is it for you? I know there's a stem cell program going on in Chicago (where Mr. Ziggy had his treatment done) and that's like a 3 hour drive from where I live. So if stem cell treatment ever became an option for me, it wouldn't be too bad of a drive to get there. And maybe by the time I get a diagnosis, stem cell treatment will be more mainstream.

Do you have an appointment set up yet to start the treatment?

 

[Claire617]

Haha isn't it sad I don't know how long it would take erm approx 8 hours ish yeah I will keep an update because I can see my pain thresh hold not being as strong as people like Ziggy. Yep got an appointment march 24th so fingers crossed!

 

[Ian]

So you were considered potentially eligible even though surgery is an option for you? I saw one of the criteria was that you had to have symptoms that couldn't be treated with surgery.

I might be facing the removal of about 1/4 of my colon soon as we can't seem to get this flare under control and I'm on maximum drug therapy now. Obviously I don't want this to happen, but since it would serve to immediately treat my symptoms I might not be a suitable candidate for the trial... although where in my colon the inflammation occurs varies with each flare so I KNOW it will come back soon after surgery and just start attacking the healthy colon that is left...

I'm seriously considering bringing this up at my GI appointment next Friday but not sure I'm what the trial is looking for.

 

[Claire617]

Well it's worth a shot asking, I gave the number for the astic trial a ring (it's on their web page). So march's app will simply meeting two other consultants and I imagine mine will try to steer me away from it, and then they do all the paperwork to apply.

It is true I am eligible to have a colostomy but they also weigh in the lifestyle, the fact I'm young bla bla makes it a reason to try this before I go for a life changing op at a young age.

Yeah about a year ago I had the right hemi colectomy, which was the best thing I did because it totally gave me my life back, like loads of people I was so ill and thin before. I did consider the astic trial back then but was far too ill to do it, I kinda needed a quick fix solution. And my consultant said after the op we'll keep you off drugs to let your body rest, I was a bit /:-/ about because yes I'd had surgery so no more pain buuuuttt my crohns is still active, isn't it??

 

[Ian]

Oh ok that's good to know, glad to hear they take lifestyle etc into consideration!

I'm pleased to hear you had good results with the hemi colectomy. Did it have a big impact on your number of visitis to the bathroom etc? My concern is ending up with constant D post-surgery - I'm only going about 3 times a day at the moment while flaring! Yeah no drugs at all doesn't sound like the best plan, it ALWAYS comes back with a vengeance! How are you doing now then? I take it this colectomy he wants you to have isn't too urgent which hopefully means you're not suffering too much

 

[Claire617]

Well everyone reacts differently to surgery but after mine, I was a pretty slow mover, as I had zip stomach muscles to help me get up, so I wasn't getting anywhere fast if I needed to lol I did have D and had to go a few times a day but it wasn't the totally urgent kind, which was a conselation. It does settle down though so its not a permanent.

Yeah my consultant says he thinks like this a colostomy is going to be down the road at some point, but not right now. But I'm going to try everything else first lol

I'm back on methatrexate which I've done well with in the past. But yeah it doesn't affect my job as a teaching assistant or the training which is good, so I'm thinking 'how the frik do I have inflammation!' some of the youngs girls say I wish I was thin like you, I'm like noo you don't lol

How about you? Your flare must be bad for surgery to be considered?

 

[Ian]

Cool, your results after surgery are quite reassuring! Especially as I'd be having the last quarter or so removed, so it would be the left side of the colon (largely the sigmoid I think) and the right side is where most water absorption from waste occurs - hopefully I wouldn't see a huge change once everything was healed and had adjusted.

Oddly I'm not all that symptomatic with this flare, it's really strange! I've got no pain, no gas, no nausea, have only lost a few pounds (probably more muscle loss than anything as I've come home from Uni for rest and just sit around all day! appetite is fine and I'm eating normally i.e. LOADS lol). I'm not anaemic because I'm taking iron, I don't have much energy but then I'm not sleeping well on the Pred. And I'm only going to the toilet around 3 times a day too (only ONCE yesterday!). The problem is I'm passing bloody mucas with every b/m - have been for a couple of months now and despite being on Pred, 6MP and weekly Humira shots. Blood test showed CRP was normal but I had a flexi-sig anyway and it turns out I have a patch of really bad inflammation that drugs just don't seem to be able to kick right now. I don't feel like it's making me ill but I can't keep passing blood forever... so if I don't respond to meds they are going to want to take it out. They said surgery was the 'worst case scenario' but the only things we haven't tried are IV steroids (they failed me last time as soon as I made the switch back to oral ones) and Infliximab which rescued me last time but might not work a second time if I've developed the antibodies. So I'm preparing myself mentally for the surgery now lol. It would only be a resection but I’m worried about the cutting beginning at a young age, as you never know when it’s going to stop.

I've never tried Methotrexate actually, how're you finding it? I've heard a lot of complaints about side effects but I tend to be quite lucky on that front. My GI has never suggested I try it though. I’m glad you’re still able to get on with your life for the time being – even if people think your figure is amazing for all the wrong reasons haha. I told my coursemate I’d probs be handing my Dissertation in months late because of this flare – she jokingly said ‘God, I wish I had Crohn’s…’ and quickly retracted her comment when she saw the look on my face lol.

 

[Claire617]

Haha yeah my sister once said 'can I have your crohns so I can lose weight? Then once I have, you can have it back' erm like I'd miss it?lol

Well I was on methatrexate for 3 years (15-18) and they were the best years ever! They only took me off it because i was doing so well then 3 months after i started to get really bad again. So I'm just hoping this helps in any way.

I know your worries about infliximab that's what happened to me during the second infusion, I had a hard time breathing when they started it.

Yeah I was worried about that with my resection plus mine was open so you might be lucky and be able to have it done laproscopically. Wow you've been pretty lucky with the symptoms then in consideration, hope you don't get any other symptoms! ah I remember when I had to move back home from uni because I was flaring, day time television is a killer!lol

 

[monkey]

Ian, your symptoms sound exactly like mine. IV steroids did work, till about a week after I had them. You've been given some other drugs tho . . . . It annoys me how different consultants do different things. Mine just looked at me and said, 'all your tests are normal'. Like I was making the bleeding/mucus up!!
Claire, I have no idea how you've gone through so much incl surgeries and stuff at such a young age and still sound so bright and positive. It's refreshing!! Hope you're still doing well!

 

[Ian]

Ah did you have a break between Infliximab infusions? I don't even know if they'll suggest it again since I'm on Humira - but I'd argue that lots of people respond to one and not the other and I responded to Infliximab last time. But yeah, second time around could be a different story!

Symptoms-wise I've been lucky this time, the flare I had a year ago had me in so much pain sometimes, gave me horrible gas, often got nausea and I kept getting a fever. Had to be hospitalised etc. This time my flare is looking to have more serious consequences and yet I have none of that, don't feel ill and am not making many trips to the bathroom? It's so weird! They could try IV steroids again but honestly they might think I was wasting a hospital bed! I don't know how I'll manage if/when I go back to Uni if things don't improve though - could start to feel bad once I stop getting looked after lol.

monkey, sorry to hear you weren't well treated. My bloods were normal but my GI requested I have a flexible sigmoidoscopy and that sure found the problem lol... so are you just suffering with the symptoms for now or is there a plan to do something?

 

[Claire617]

Well I try to stay positive but only able to do it because I'm not in pain otherwise I'd be a different story lol being in hospital has made me grateful because there's others here who suffer so much more.
Ah unlike you Monkey, Iv steroids are like a high for me, full of energy eating everything in sight, no pain and the beautiful moon face! But when I was weaned off them I'd get too sick, my body started relying on them.
There was a week or 2 week break between my first and second infusion, first one went fine. I reacted well with humira but I was on a high dose of steroids as well so I don't know if it helped.
Good for you being able to do uni when you're flaring, I couldn't cope when I was an had to drop out of uni back in 09 Ian are you thinking of meeting with a surgeon?or in talks with you gi about it atm?

 

[Ian]

Ah, see I did a 3-infusion course to treat acute symptoms last year and didn't have a reaction to any of them - so hopefully if we try it again I won't. But again, the year break may have allowed me to build up a resistence to it, meaning it might just not do ANYTHING

Well technically I'm not doing Uni right now, I came home nearly 2 weeks ago because I'm in a flare, and while I'm not very symptomatic but feel that might be because I'm doing sweet F A all day and getting lots of motherly love lol. So I fear that if I go back to Uni before things improve (which they possibly won't without surgery) then I'll start to feel the flare more. It's easy not to be exhausted and to only be going to the toilet 2 or 3 times a day when you barely get off the sofa! Sorry to hear you had to drop out

I've been given 2 weeks til my next appointment to see if I improve on my meds at home, but I'm already a week into those 2 weeks and so far don't think I've really noticed a change. I was told 'worst case scenario' would be a surgery to removed the inflamed section of the colon, but I wasn't told what (if anything) could be tried before we resort to that. I guess if things haven't improved in a week's time, that's the conversation I'll be having with my GI. As far as I know, all they could try is IV steroids or Infliximab again (no one has ever mentioned Metho to me). So yeah just in talks at the moment, I'm getting ahead of myself. I just don't see them resolving it with meds this time though.

 

[Dallies]

Hiya Claire, I'm so sorry to hear the inflamation is back. Will be thinking of you when you have your appointment in a few weeks. Loads of love xxxxx

PS Meg is doing great! It's already been six months since her op and her A levels are going great xxxx

 

[Claire617]

Hey dallies, I saw your name had popped up in a few posts! Ah so good to know that about megs, time really does fly once it isn't interrupted by crohns doesn't it!! Aw thanks, hope you're doing good as well m'dear!xxxx

 

[Dexky]

Welcome back Emma!! Good luck with the consult!!

 

[ameslouise]

Hi and welcome back!

Sorry you're feeing poorly and inflammation is back. Good luck with the stem cell stuff- keep us posted!

-Amy

 

[Astra]

Hi Emma

good to see you again, altho not so good circumstances!
sorry you're going thro a bad un, hope your consult goes well, fingers crossed for you, hope they let you try the stem cell trial. Might all depend on whether they've got the dosh to do it tho! Postcode lottery again?
good luck
xxx