Crohn's Disease

The_Conductor

LucyBliss wrote: »

smmcarrick, hope things went well during the transfusion.

Thanks. Back in the land of the living. Feel like I've been rolled over with a steam roller, but lots better after the transfusion. I really need to get bloods done a lot more regularly- and as they start to go down take action then, rather than ending up in A&E..... After the O+ last week to bring haemoglobin into a normal region (ok 10 is low, but its a hell of a lot better than it was)- I'm going to get a veinifer drip in a few weeks time- and will then go into hospital every 6 months or so in future to get a veinifer drip.......... Anyone else totally incapable of absorbing any dietary iron?

pinkyc

Hey guys, another update on my crohn's and the humira.

Long story short, I've been off the infliximab since July and since October, I've been on humira. I started to get worse once I was off the infliximab - from being sick with the crohn's to having extremely sore swollen legs, coughs, colds etc.

I thought I'd be okay once I started the humira but I've actually worsened. I was getting worse with the crohn's and it was manageable but I've been sick constantly since the 8th of December - missed college because of this (haven't been in since, it's not possible to go in with the way I am).

I've been to the clinic to see the specialist nearly every week this month, I've been through a CT scan, a colonoscopy, blood tests and now they've put me on steroids for 5 weeks and iron drips for 6 weeks (which hasn't made a difference so far, had the drip a few days now and still extremely low on energy). I've been on steroids two weeks now and there is no difference - I can barely eat now without being very sick for the night and following day.

I'm getting really fed up with it - I haven't been out since before Christmas, I've missed countless nights. I'm more or less housebound! I went out valentine's night with my boyfriend, we went to see d'Unbelievables in show but I was sick for nearly the whole second half of the show.

Every time I speak to a doctor/nurse/specialist, all they say is "just wait and see a little while longer with the humira" but I'm getting sick of this response.

The doctors say they can't put me back on the infliximab (which is the only thing that worked for me and my quality of life was great while on it) because it's been too long since I had it.


Has anybody any advice or help? I'm getting really fed up over this

HigginsJ

How are the results of the Colonoscopy and the CT showing? Do you have much inflation and sores or ulceration of bowel or intestine?

The 1st time i was on steroids i found great improvement but 2nd time back on them i didnt find any difference so not convinced what good they do. Have you had an Op to remove the infected area already. Personally i had my Op in October and i have been great since. Get tired easily particulairy if its been copule of weeks since my b-12 injection.

I can relate with the feeling of not being able to go out or about. The 1st 6-7 months of last year were a nightmare the pain was so bad on occasion.

pinkyc

They said the CT scan showed up fine, the colonoscopy they said that the disease was active but not as bad as before (even though I'm worse now than ever but they reckon the humira is covering it up).

I haven't had an operation, they want to try everything first as I'm only 19 (had it 6 years).

I was back today at the hospital and saw a doctor (not my specialist), he was a real b*stard. Didn't ask how I was feeling, but walked in, said to go on stronger steroids and to have the humira once a week (it was once every two). I was really upset and explained that the humira doesn't work and he replied "You have to try everything; what do you want me to do? Why are you crying?" and walked out, leaving me with the intern nurse who didn't know what to say and my mum. My mum asked what the prognosis was, he smartly replied "Crohn's disease".


I am really fed up and don't know what to do anymore

HigginsJ

you ever get to see shots from the colonoscopy? Did the doctor ever show you where the disease is mainly located. might help you to understand whats going on if they showed you the colonoscopy snap shots.

Hospital doctors really dont care. in and out quick as possible.

If your not happy with your specialist then maybe you shoudl look into getting a second opinion.... your more than entitled.

pinkyc

Yeah they gave me a copy. I am not sure where the crohn's is in the snapshots. We were going to look for a second opinion but I was told that the doctor we currently have is the best in Ireland with regards to crohn's? :S

I'm getting annoyed so I'm gonna look for a second opinion..

LucyBliss

pinkyc, my doctor was the same. I'd been getting Infliximab for nearly two years when I started getting these god awful pains in my side that would move to my stomach and have me up all night with my abdomen distended. I've never had kids but I imagine it's what labour must be like, only there was no let up at all. I'd also been running to the toilet a lot more than I had been when I started Infliximab and I said to my gastro doc. His reply: Give it more time. My bloods were coming up fine with no inflammation markers and I suspected that what was happening was that there was just so much scarring, my intestines were just screwed. (Turned out I was right).

Eventually, and it took me arriving at his clinic every week saying that it wasn't working and that I was in a lot of pain, he said, I'll put you on steroids for a while, taper you off and if it doesn't work, you're going to need surgery. He said in such a way that suggested I was going to burst into tears at the thought but I'd been crying so much in his office the previous visits that the notion I might be free of all that f-ery and pain, I nearly did a tap-dance on his desk. I knew the steroids wouldn't work long term - I wasn't being defeatist but they were always a stop gap for me, they masked the symptoms, they never 'cured' me. And the day I went back and said they weren't working and he put on the surgery list was one of the best of my life. Because it meant that I was going to get my life back!

My point is (and I do have one) is that you need an advocate, a strong one to go in there with you and fight your corner. You are not well, you are coping not only physically but mentally with some serious symptoms and when we have to deal with those, it's hard enough to get to the damn appointments, never mind finding the energy to fight some doctor who thinks by the textbook and doesn't see individuals. If it's seriously curbing your quality of life, then that's not good enough. We know ourselves what it's like when we feel great. Therefore we know only too well when something does not bring us back to 100%, when it's just keeping us going. So you and your advocate should go up there and tell him that you're not going until he gives you something that works. Or words to that effect.

Out of curiosity, why did they take you off the Infliximab to begin with if it was working?

The_Conductor

LucyBliss wrote: »

Out of curiosity, why did they take you off the Infliximab to begin with if it was working?

The problem with taking infliximab (and some other common Crohn's meds)- is that overtime- your reaction to it can change. Its unusual, but not uncommon, for white cell counts to crash- leaving the person, for all intents and purposes, without an immune system.

Crohn's is of course- an over-reactive immune response to a perceived threat (an inaccurate threat- but an over-reaction nonetheless). When we use means at our disposal to dampen our immune response- the Crohn's is very often controlled- which is why infliximab, humira, imuran and other meds- can be miracle drugs for us. There are side effects however- many people may never experience them, but some of us, unfortunately, do.

geor

Jeez, thats terrible - you deserve respect as a patient, I would make a complaint. You need a good GP and good consultant that helps and supports your decisions. It's your body, your health and your life.. you are entitled to be concerned and ask questions. These drugs they prescribe will never cure us, they just alleviate the symptoms to varying degrees of success and with various side-effects.

I'm on steroids myself at the moment, trying to get a flare under control.

Can I suggest reading Jini Patell's 'Listen to your gut' and the Specific Carb Diet, Crohns-boy's website.

They give you some other tools to try besides the drugs. Its worth giving everything a try in my opinion.

Anyhow - hope you feel better and stay positive, there's always hope and lots of things to try.

pinkyc wrote: »

They said the CT scan showed up fine, the colonoscopy they said that the disease was active but not as bad as before (even though I'm worse now than ever but they reckon the humira is covering it up).

I haven't had an operation, they want to try everything first as I'm only 19 (had it 6 years).

I was back today at the hospital and saw a doctor (not my specialist), he was a real b*stard. Didn't ask how I was feeling, but walked in, said to go on stronger steroids and to have the humira once a week (it was once every two). I was really upset and explained that the humira doesn't work and he replied "You have to try everything; what do you want me to do? Why are you crying?" and walked out, leaving me with the intern nurse who didn't know what to say and my mum. My mum asked what the prognosis was, he smartly replied "Crohn's disease".


I am really fed up and don't know what to do anymore

shawnee

pinkyc wrote: »

They said the CT scan showed up fine, the colonoscopy they said that the disease was active but not as bad as before (even though I'm worse now than ever but they reckon the humira is covering it up).

I haven't had an operation, they want to try everything first as I'm only 19 (had it 6 years).

I was back today at the hospital and saw a doctor (not my specialist), he was a real b*stard. Didn't ask how I was feeling, but walked in, said to go on stronger steroids and to have the humira once a week (it was once every two). I was really upset and explained that the humira doesn't work and he replied "You have to try everything; what do you want me to do? Why are you crying?" and walked out, leaving me with the intern nurse who didn't know what to say and my mum. My mum asked what the prognosis was, he smartly replied "Crohn's disease".


I am really fed up and don't know what to do anymore

It is really upsetting when you wait for an appointment with one of these consultants and they give you ten minutes and make little of your illness. Then you get the bill.
I was very ill with colitis around six weeks ago and the imuran that I was taking was making me physically sick. I stopped taking it and boiled up some free range chicken and used the soup for a week or two. It seems to have helped and I am now much better. In between I went to my specialist in Limerick (female robot). I waited two hours for my appointment, when I told her that I had severe joint pain, she suggested taking paracetemol and hardly raised her head. :eek::mad:

Hang in there and try something like the chicken soup and lots of rest and it should ease up. The forum is a great help and has lots of good advice.

HigginsJ

pinkyc wrote: »

Yeah they gave me a copy. I am not sure where the crohn's is in the snapshots. We were going to look for a second opinion but I was told that the doctor we currently have is the best in Ireland with regards to crohn's? :S

I'm getting annoyed so I'm gonna look for a second opinion..

I have heard the same thing about people being the best in Ireland. It depends on how happy you are. No harm in getting a second opinion. I agree with having a strong advocate going in with you. Im late 20's and wouldnt dare contradict or question a doctor.

You'll get sorted, just keep going

LucyBliss

Thanks for that, smcarrick. And thanks for reminding me of how lucky I've been over the years that my bloods have always come back good. Which was one of the problems when it came to getting the doctor to realise just how bad things were because they'd always go by the blood tests!

Good thoughts/prayers/vibes to everyone who needs them right now. Hope good health finds you all sooner rather than later.

pinkyc

Laterst update: kept going back to the doctor weekly and was given more steroids each time I went, until I went back and they told me I'd have to go to hospital for steroids because of my symptoms (diarrohea to constipation every day).

Just got out of hospital today after three days and I'm not a BIT happy. The nurses were lovely, but my doctor was the same guy I mentioned above (my normal doctor was away). Originally, I was to go in for a week of steroids, but when he came in yesterday he said I could be discharged today. My bloods are normal, the scan looks normal but I don't feel well at all.

He never once asked me my symptoms (found out through the nurses) and this morning he came in to me, asked how I was and I explained I was bloated. He told me it was normal with my constipation and asked me what I did at home. I told him I wait a few days and take senekot, and he said it was okay and to keep taking the senekot. If you look at the box for senekot, it'll say something about consulting your doctor if you need to use it continuously (not the exact words).

I texted my parents to let them know, long story short, my dad came in to see the doctor and the doctor arrived after a while. Shook my dad's hand (he didn't even look at my mom previously) and ignored me. Basically, he started saying that in HIS opinion, I have IBS alongside the Crohn's and the IBS is making me sick atm because of stress (there are no stressors in my life at the moment whatsoever). He said that normally people with Crohn's lose weight but I have put it on, to which I explained that I lost 2 stone and put it back on from steroids but he brushed it off. He ignored me and kept telling me to listen to him but he wasn't listening to me.

He also said I was depressed from the steroids and that's why I was crying and upset this morning. It's totally not the fact that he's made me feel terrible, he wouldn't listen to me and had this whole IBS theory out of the blue. I have at this point left my college course and have to defer it until September (no stress now) which is okay but if it WAS the IBS all along, I could've gone back to college. He just decided to say this when my dad wanted to talk to him (it was all his opinion).

The nurse came to take out my canuala and discharge me, and I had a chat with her and she agreed with me that he wasn't listening. I also explained to her how restricting my life is at the moment (I can't walk to my boyfriend's house 10 minutes away). She said that I should get back onto the doctor's office and ask to see the doctor that I like. My mom believes me in that I am sure I don't have IBS but my dad is convinced totally that the doctor is right.

We're gonna wait a week and get a second opinion. This sucks, I'm so angry right now - left hospital the same way I was when I was admitted. Sorry for blabbing but I had to say this to someone else!

caramel08

Hi Pinky C,

I went through the same experience as you when I was 20 in 1993. Doctor was crap (pardon the pun), would only talk to my parents, wouldn't listen to me and was the best guy in Ireland. (he is still on the news every so often talking about bowel screening in tallaght hospital but have to say wasn't worth a damn when I was his patient).
I dropped out half way through first year in college but went back even though they still didn't have clue what was wrong with me and I was suffering bad flare-ups. I managed to get to third year then the Crohn's flared up big time. At that stage, I told the GP that I wanted to go to someone else. I went to a new consultant and have been well ever since. That is no exaggeration. The new guy listened to me even though he said he couldn't promise anything but he would do his best. He put me on steriods until I did my final exams and then Imuran. The Imuran has worked for me but it's not for everyone. There can be bad side-effects but thankfully I haven't had any. Over the years he's tried a few different medications but I'm allergic to them all. Only the Imuran works for me but it took 3 months to kick in which is a long time when you've got full-on Crohn's disease.

You need to find a doctor who listens to you. The first guy I went to TOLD me what symptoms I had and dismissed anything I tried to explain!! You know what your symptoms are - you're living with them every day. Your parents are naturally worried and it's hard on everyone. Anyone telling you that steriods don't cause weight gain is a pile of sh*t (sorry pardon the pun again). I was on steriods a few times and each time, put on about a stone or a stone & a half and my face bloated, my appetite was huge and I felt on edge all the time.

Find a new doctor and above all, don't despair. I was the same age as you and I had to drop out of college too. There was no internet in 1993 so I couldn't even google my symptoms!! But I got through it and you will too. If you want me to PM you the name of the consultant I go to, just let me know.

Take care and I really hope you get sorted soon,

XXXXXXXX

caramel08

Ive just been reading all the posts on this thread and the recurrent theme is that people are afraid to question their doctors or get a second opinion.
I'm 35 and I was diagnosed with Crohn's disease when I was 19. After a lot of wasted money for 10 minute consultations, medication that didn't work, a couple of alternative health experiences, and sleepless nights for me and my entire family, I changed doctors. Changing doctors worked for me and it was the best decision I have ever made.

Even though you are all probably very young, you and only you know what your symptoms are. The majority of specialists and consultants are in their 40s or 50s and are trying to treat a young person's disease. Unless they have it themselves, no amount of research is going to solve it until they listen to their patients!

My advice is to find a doctor who listens and who then applies his knowledge and expertise to what he's been told. If you're not happy with your doctor, change if you can and hopefully you'll be on the road to recovery. Crohn's disease is a b*ll*cks of a disease to treat because it affects everyone differently. It can be treated though so please don't give up

HigginsJ

http://www.crohnscolitis.ie/

I recently stumbled across this site while online. Looks good and has some nice features and plenty of info. Im always trawling the web for new or alternative info on the disease so if you come across anything please post it up.

I have been very well since the Op in October. Only on purinethol at the moment and no pains thank god.

To any one struggling

http://lh5.ggpht.com/_OVpgGzy0wII/RqNud_PeJpI/AAAAAAAAAQ8/HzZfKlIfgic/Hold+On+Kitty.JPG

LucyBliss

caramel08 wrote: »

Even though you are all probably very young, you and only you know what your symptoms are. The majority of specialists and consultants are in their 40s or 50s and are trying to treat a young person's disease. Unless they have it themselves, no amount of research is going to solve it until they listen to their patients!

THIS! I completely agree because hey, no-one knows better than us when we're having a bad day or when we're not 100% or even 50% and all the well-meaning people and bad doctors in the world can't tell us different. But it's very hard to withstand someone telling you that you're wrong or you're just making it up or it's all in your head when it's taking everything you have just to get through your day.
That's why it's so important that we have someone with us who first of all believes us when we say we're not well and secondly will stand up and fight for us with doctors who'd like to fob us off.

pinkyc, don't ever feel like you have to apologise to us. We know what it's like and even if we can't actually do something to help you (like tell your doctor to cop himself on) we are here to listen and support. And you have every right to feel peeved and cross. I would absolutely refuse to deal with that doctor again. He didn't listen to you and dismissed you. The day is gone when people had to take that kind of attitude from someone just because they're a doctor. You go find yourself a doctor who takes you seriously and listens to you and treats your symptoms accordingly. You have a life to lead and you are entitled to a good quality of life.
I know how frustrating it can be when all you want is to just be able to leave the house without problems and yet nobody will do anything to bring that about. Never mind that yoke, you go get your health back!!

0lddog

http://www.breakingtheviciouscycle.info/news/obit_toronto_star.html

What is it that they say about standing on the shoulders of giants ?

Ush1

Hi folks,

Been doing grand for a while on the Imuran and Asacolon but the last few days I've been getting very uncomfortable trapped wind. The worst part is at night that I can't get to sleep at all. Can't exercise properly either. Anybody got any tips?

I tried getting Rennie deflatine but they seem pretty ineffective.

shawnee

A simple bit of meditation/breathing can be most helpful at a time like this. If you find a quite place , lie on the floor with you knees up and a cushion under your head and concentrate on breathing and relaxing for even ten minutes. A little music may help if there are distractions.:p Best of luck and you are not alone, the change of time/seasons throws many of us out

LucyBliss

I swear by peppermint tea, or ginger and lemon tea, both of which should be available in all good supermarkets! I went through a very bad phase where trapped wind just plagued me and I found the teas helped ease it considerably.

There is also a digestive aid you can get in the health food shops, it's got natural ingredients, it's capsules with peppermint oil as part of the ingredients, and for the life of me, I can't remember the name of it. I can see the box in my mind's eye but not the name! I'll see if my google-fu is any good and try and find it. It's one I found very effective because I tried all the Rennie's and they did nothing for me.

Success!! It's called Colpermin. It says it's for IBS but I was recommended it by the woman I go to for cranial sacral therapy and, like I said, found it very effective for trapped wind.

HigginsJ

LucyBliss wrote: »

I swear by peppermint tea, or ginger and lemon tea, both of which should be available in all good supermarkets! I went through a very bad phase where trapped wind just plagued me and I found the teas helped ease it considerably.

There is also a digestive aid you can get in the health food shops, it's got natural ingredients, it's capsules with peppermint oil as part of the ingredients, and for the life of me, I can't remember the name of it. I can see the box in my mind's eye but not the name! I'll see if my google-fu is any good and try and find it. It's one I found very effective because I tried all the Rennie's and they did nothing for me.

Success!! It's called Colpermin. It says it's for IBS but I was recommended it by the woman I go to for cranial sacral therapy and, like I said, found it very effective for trapped wind.

Colpermin was the very 1st thing i was prescribed when i had the symptoms before it was diagnosed as Crohns. It did actually give a tiny bit of relief.

Ush1

Thanks for the advice.

As you said I was given Colpermin at the start when they thought I had IBS. It actually had a worse effect on me!

But I tried one last night and I do think it helped somewhat. I'll take one before I go to bed tonight and see how I get on.

Thanks again.

The_Conductor

Personally I found ginger ale to be helpful.
Hope you feel better soon,

Shane

bigbadcon

Bit of a longshot here....

Myself and my wife are thinking of applying for an australian visa (skilled Migrant Visa 175) and im wondering has anyone by any chance had to do a medical for an australian visa and failed due to crohns disease?

I found one case online where someone said that they failed the medical but were on Infliximab which is quite expensive and they were guessing it was because of the price of medication that the aussie government refused the application.

Im currently on Imuran 150mg and entocort 6mg and have quite mild crohns disease.

Thanks in advance...

Berty

In August last year my Fiancee had a Large Bowel Resection to remove a large section of the small and large Intestines. She also had an Ileostomy as well. The girl across from her had a similar amount of her bowels resectioned although got away without a stoma.

On Monday she has a stomogram/gastrograph and it turns out her "joins" have healed and are in good shape to be resectioned.

I.e She will be having a reversal of her Ileostomy.

She is thrilled. 6-8 weeks away now. Bye bye Stoma(forever........................let's hope).

Unfortunately her sister also has Chrons and has all this ahead of her.

-Corkie-

Berty wrote: »

In August last year my Fiancee had a Large Bowel Resection to remove a large section of the small and large Intestines. She also had an Ileostomy as well. The girl across from her had a similar amount of her bowels resectioned although got away without a stoma.

On Monday she has a stomogram/gastrograph and it turns out her "joins" have healed and are in good shape to be resectioned.

I.e She will be having a reversal of her Ileostomy.

She is thrilled. 6-8 weeks away now. Bye bye Stoma(forever........................let's hope).

Unfortunately her sister also has Chrons and has all this ahead of her.

I am delighted Berty!!!!. I got a clean bill for 2 years last week so all going well!!!:)

LucyBliss

Bertie, I'm delighted for your fiancée. I know it can be very difficult to deal with a stoma when it's not something you want.
But can I also just throw it out there for anyone who might be reading and might be heading down the ileostomy road that it's not necessarily a bad thing and that I have found mine incredibly liberating and allows me to do so much more than I could when I had my intestine.

I'm not by any means trying to jump on someone's feelings about having one, but I just like to throw in some positivity about having it as well. Best of luck to you both in the future.

Well done Corkie! Here's to many more years of good health for you!

Berty

Lucy is speaking the truth. There were soo many nights I would find my missus curled up on the landing or stairs crying in pain. She could not travel very far either and needing to be near a toilet. She wouldn't eat certain foods as they wouldn't agree with her. Fair enough she was rather advanced with the disease to the point where they gave her 6 months if she hadnt begged for an MRI and discovered the damage.

We were told the Stoma would be there for around 3 months but honestly everybody is different. She only has it soo long because she had major complications following her surgery, near death was one, considerable infection was another.

There is a Stoma Nurse in the regional hospital in Limerick who is a really nice person. Even if you think you could possibly be having an operation just give her a ring and she will put your mind at ease.(Mary)

LucyBliss

Well, if the stoma nurse in Limerick is anything like the two stoma nurses (both also called Mary) in Galway, then she's fab because the two Mary's are the bees knees! They know everything and no question is too stupid or too small to be ringing them up. Plus, it is so good to know that if you're having a problem with the ostomy appliance at the start (because sometimes it can be a bit trial & error until you get the one that is right for you and that can be very frustrating when all you want is for the thing to work properly because it's new and you don't want to have to be fretting about it all the time because they told you that the surgery would fix everything so now why are you having issues with the appliance, nobody said that would happen OMG!! - Heh, I have been there!), then the stoma nurses are there to find you one that works no matter how many times you have to go back to them.