Can I avoid the bag?

[Shane]

Hi, I'm Nearly 30 years old with Crohn's disease and this is my story so far. Sorry for the length.

Towards the end of 2006 I noticed that I was feeling more and more tired after a working day and noticed changes around my finger nails (flatning). Then around Christmas I started getting really bad mouth ulcers which wouldn't heal.

At the start of 2007 I started getting awful intermitent cramping abdominal pains and diarrhoea. The pain gradually got worse, then came the nausea and vomiting after eating. By the start of March I could hardly beare to eat and one night I had to go to the toilet no less than 10 times. Each of which to my horror the pan was completely full of blood!

A trip to the G.P followed who suspected IBD. A week later I was so Ill that I was admitted to hospital. I couldn't even keep water down. Within 24 hours and after lots of tests I was diagnosed with Crohn's. Put straight on Prednisolone and Pentasa.

Found Pred to be good for me, only bad side effects to start with. Each time I came of it I would get really bad again. As I couldn't keep going back on it I started Azathioprine which gave me Pancreatitis. That wasn't nice at all.

I've been told now that my options are a collectomy and stoma bag or to try Methotrexate injections and Infliximab Infusions. (Remicade)

I've decided to try the drugs but I know little about them. Can anyone tell me their experiences of these drugs. Will I end up having to have the bag eventually anyway? Disease is very severe in virtually the whole of my colon. I'm a little nervous. :confused2:

Thanks for taking the time to read this.

 

[Cara Fusinato]

No one can be sure exactly how fast your illness will progress or how much they will have to remove. However, there are plenty of us who have not had to have removal (yet). Give the meds a bit of time and see how it goes. This illness requires a lot of patience, time, and sensing out what works or doesn't work for you individually.

 

[Kev]

Hi Shane .. Welcome to the forum. I'm sure you'll get a lot of feedback on this site. I wouldn't worry about the length, no one on here can hold a candle to how long I go on for. I commisserate with pancreatitis, been there, done that, you're right, it isn't fun. Pred is only a stop gap due to the long term side effects. I too had problems with Imuran/Azathioprine. I'm surprised that you weren't placed on a 5ASA family of drugs.. ASACOL, PENTASA, SALOFALK.. Those are only anti-inflamatories, but it is a commonly prescribed treatment, unless one has a history of troubles with plain ASA. Anyway, metho by injection, or remicade/humira by infusion are remaining traditional treatments. I'm looking at metho in the future IF I can't convince my GI to try LDN (Low dose naltrexone) an as yet to be approved treatment. Of course, there are the surgical options.. my personal jury is still out on that.. Like yourself, the idea of a colostomy bag is hard to cope with.
Then, in my case, they aren't quite sure if I have Ulcerative colitis, Crohn's colitis, or Crohn's disease. If what I have is colitis, then removal of my remaining colon (I already lost 1 1/2 feet) SHOULD render me completey symptom free. They also are not able to guarrantee that I won't end up with a bag, either temporary or fulltime

Anyway, enuff about me. Just wanted you to know that you aren't alone in this, a lot of us are toiling with the same decisions, the same options, the same worries.
I don't know if you are on a restricted diet; if not, that is something to explore. and I would look at some of the other options some of us here are pursuing. They aren't for everyone; we aren't medically trained so we can't offer medical advice.. I look at this site as more of a sharing of collective experiences and anecdotal info.

Like, there's a ton of our personal folklore on keeping a diary, diet considerations, supplements, vitamins, enzymes, exercise, the list goes on & on (as I just did). so i'll end now with a repeat of the welcome, IBD membership has its privileges too.

 

[Cog]

Welcome

As Kev says there are many treatments available now before surgery and even then with surgery you can still avoid the pouch. I repeat what Kev suggests about a food diary and vitamins. Good luck

 

[Shane]

Thanks for the advice everyone. Has been taken on-board.

 

[soupdragon69]

Hi Shane,

I am on remicade, azathioprine and pentasa. Was diagnosed xmas 06. Have been through the elemental diet regime and now on reintroducing foods as part of an elimination diet plan with a basic regime to start with.

I have to say the remicade has made the world of difference to me, skin and guts have vastly improved, pain has eased, loo trips too and exhaustion is improving.

I am still not into remission yet - and that is what they aim for - and my GI has increased my aza over the last 2 weeks again so we will see what happens.

The pentasa we think is impacting on my asthma so we are stopping it today for a period of weeks to see how I go as I ended up in hospital last friday week ago, discharged last tues and almost readmitted thurs again! We are looking for possible triggers and my GP thinks it may be pentasa so we will see on that front too!

It is possible that many of us will go on to have surgery at some point but most medics prefer to manage things drugs wise as surgery only provides relief for a period of time and they have no idea how long for with each of us and has the potential to come back in the same area again never mind elsewhere.

Give the meds time to kick in Shane if you can cope. Keep in mind side effects of the drugs can make you feel rotten too and will need to go with the flow on that.

Thinking of you and hope you get some relief soon.

 

[Shane]

Thanks Jan.

I'm feeling alot better about it now than when I submitted the original post. It's a great comfort to have contact with people in the same boat. Like you say, all I can really do is go with the flow. I will update thread after first Remicade infusion. Unsure when I'm starting it although I have my first Methotrexate injection on Wednesday.

Azathioprine gave me Pancreatitis. I find Pentasa quite ineffective, although keep taking 2g daily as I'm not 100% sure it isn't helping if only marginally. Prednisolone is the only thing so far that seems to work well with me (currently on 30mg daily). Shame it can't be used long term.

Hope things improve with you.

Shane

 

[soupdragon69]

Hope the Metho and remicade go well Shane. Keep us posted good days or bad, we will always listen!

I will be fine - its the stubborn leprechaun coming out in me now that will get me there and that drives my docs mad ;-)

Thinking of you - at least you are this side of the pond too! lol

 

[Kev]

Hey Shane.. About your pentasa, have you told your doctor you don't think its doing much good? He/she may want to up your dosage. I take twice the amount you are, but then; I'm probably more than twice your size. I'm not sure if there is any direct correlation, as I once heard/read that the ileum, if dissected and spread out, taking out all of the wrinkles, furrows, etc., would 'surface' cover 3 full sized tennis courts!!

 

[Christina]

HI,
Remicade has made a world of difference to me. It helps with the pain and bleeding. My doctor swears by using Remicade. The only thing he can't figure out is what other meds to use with it. So far the Remicade works wonders for me and I hope it will also do the same for you.

Good Luck
Christina

 

[Shane]

First Infliximab Infusion

Hi all

I had my first Infliximab (Remicade) infusion today, all went well.

The Consultant has told me I'll have another one in two weeks time. After that he wants to do a Colonoscopy to see if it has reduced the inflammation in my bowel.
If it hasn't then, he said he'll stop it and I'll face losing my Colon and having a permenant stoma bag. After only TWO infusions!! Is this right? I was under the impression that sometimes it can take three or four to start working.

Any views on this would be great.

 

[lamor32twigs]

Shane,

I would see if the doc would give it more than two infusion to work. I have had crohns for over 20 years and was on remicade for about 5 of those years. Currently I am using Humira and imuran. I also have had a bowel resection, and like you would love to prevent any more surgery.

Remicade sometimes takes a while to work....the induction is 3 infusions, which takes 6 weeks. I would at least ask for that long, if not longer. Does your doc think at sometime they would be able to reconnect your colon and get rid of the bag?

I would seek a second opinion if he is won't give you more time.
Hang in there.

 

[Shane]

Thanks, I will talk to him about that.

He's saying he would have to remove my colon as it is severe the whole way around. Would be no turning back.

 

[Kev]

My colon is completely inflamed except right at the scar site of my last resection. I have been offered total resection of my colon, but my GI is a GI, not a GI surgeon, so it wasn't impossible to convince her that I was prepared to fully explore EVERY other option, despite the pain and misery that would involve. Think the problem is that people who have had the operation swear by it, most wondering out loud why they held off for so long. As for myself, I'm just not at the point where I am comfortable taking that step. That may be the thing the doc/cons/surgeon is thinking.. that you'll find life post op much better

 

[Shane]

You're probably right Kev. I think it will be the only way to sort it properly.

But, like you I don't know if I'm ready to take such a step yet. I'm only 30, and as we all know, it may return in small bowel anyway.

Just hope the Infliximab works. Can't say I've noticed much from it so far. Early days though.

 

[Stevo]

Hey

Dont no wen u got infliximab but all al say is tat it worked wonders for me so give it time hope all is well.

 

[Jvstin]

I've been threatened with the bag twice now, and luckily avoided it both times.
my advice for this is eat as best as possible and run to the doc anytime you think you are nearing a flare.
be as paranoid as possible, that's what I do and that is why I take Ativan.

 

[Shane]

Thanks for the advice.

Trouble is, when I'm off the Prednisolone I don't want to eat anything at all. Appetite starts dropping off around the 15mg a day mark. So, by the time I'm totally off them food is very much off the menu. The only thing i've found to help my appetite is cannabis.

As for going straight to the Doc if I'm nearing a flair.... Local G.P isn't much help with Crohn's and by the time I've managed to track down my hospital consultant I'm already well into the flair. Each time I do have one I'm just put back onto 40mg per day of Pred. So, a couple of months later I'm back to square one.

I found out on Wednesday whilst having my weekly Methotrexate injection that the next two Infliximab infusions have been prescribed for me so at least I'm getting the first three of them. Will have to see what happens after colonoscopy to see if it's working. Just hope and prey it does work.

Mentioned LDN to Consultant and he said he'd never heard of it. Doesn't fill me with confidence. He hasn't ever properly explained the risks of my medication either. Feel as though he want's me to have the bag just to get rid of some of his workload, i.e me, for a while at least. His words were "if the Infliximab doesn't work then we have to look at the bag, or just plod along with the symptoms for a while and see what happens". WHAT!!! I didn't say anything at the time (wish I did now) Just plod along with the symptoms indeed. The very symptoms that rob me of any life and keep me bedridden and unable to eat or drink without it coming back up. Not to mention the pain and D.

Reading posts on here and other research has shown me many other possibilities and if the Infliximab isn't working then no way am I letting him fob me off with the 'no other option line'.

Sorry for the rant. Had to get it off my chest. :depressed:

 

[Jvstin]

to be honest, it sounds to me that your doc kinda sucks. I've been there though, currently I still don't have an official G.I. my docs are E.R. docs, but I've been through all of this so much, I pretty much tell them what I need and they write it out.
my tradition is I show up, they give me my normal mix shot of Delotted and Phenergren mix (even before my bloodwork comes back, do my CT and look it over, come back in the room to tell me how good/bad it all is and asks me what I want. this past time I requested Pred cause hydrocort wasn't doing a damn thing.
sometimes you just gotta tell them what you need or think you need. I *think* you need to get a second opinion by another G.I. cause you need a doc you can get to asap with this.

 

[Kev]

As for your g/i cons not having heard of LDN, that really isn't all that surprising. It was only one very small study (17 patients), and was only published in the Amer. Journal of Gastroenterology... Anyone can pop online and see a brief synopsis, but to see the detailed report, (in A.J.G.I) one has to subscribe, at $700 US a yr. I mean, there are plenty of links after the fact, and I think you can find the univers. study link.... but it (LDN) is really only a small GI footnote