Crohn's Disease

lip

God Richard,that sounds awful.Never heard of it til now.Your'e lucky by the sounds of it to still be here.Glad its resolved for you,must have been very frightening for you and your family.Hope your'e keeping well now.

Richard Dower

^ it's super duper rare, i was a medical guinea pig for the medical and surgical teams, they even had case conferences about my case. Had a Right Hemi Colectomy + various small bowel resections + surgery for the abcess. I also developed Renal Cholic (Kidney stones) due to the immuno suppresents, and i can't even go into a hospital without getting severe panic attacks....lol.

Lip, you're awaiting an OP?...hope that goes all well for you, don't judge my case as typical as i'm on the extreme end of typical Crohn's cases. :-)

kildareash

Hi Richard,

My OH has had numerous abscess this year. Had surgery ro remove large intestine in June, and ended up back in hospital first week in July with huge abscess and septicemia.
He was sedated for six days, but was ICU for about a month, had a second abscess.
Another abscess formed about a month ago, following surgery to remove fistulas from his small bowel.
Thankfully, this time it didn't require surgery and they were able to drain it.

He's having trouble at the minute with his potassium levels...they're very low and docs are baffled as to why he's not retaining it. They're getting a specialist in to advise them.
But has anyone here had any experience of this? From my own research I see that it is a side effect of chrons and steriods. But docs say he can't come home until they've sorted it out.

Richard Dower

^ that's the thing with Crohn's....the disease dosen't kill you....it's the complications!, i had primary and secondary complications, in addition to the psoas abcess which basically was a HUGE football sized abcess which stopped me from walking i also had a collapsed right lung which filled with fluid, at one stage i had a drain in my lung, one in my abcess, a catether, NG tube, two drips....lol!, i was like a Borg....

....i don't wanna scare folk, i've been reading about misdiagnosis and how doctors told people it was all in their head and sent to psychiatric hopspital/meds etc. - singing from the same sheet here!

Yup, had all that, all in your head Richard....if i didn't listen to my body i'd be dead now, and the doctors told me that. My psoas abcess was missed, a first year junior doctor saved my life!, he was the one who called an abcess....yet my oh soo wise consultant and his entire team missed it!

I'm still angry about it, i don't trust doctors much, they have to EARN my trust...when it comes to my treatment i take no prisoners now, alot of health professionals dislike me, why?....becuase i studied the disease, i educated myself to arm myself with knowledge, to not be afraid and utterly clueless.

If anyone has questions i'll do my best to answer.

Richard Dower

^ potassium, would that not be diet related?....if he's not absorbing minerals through the intestine....can they not give him supplements through IV or injection?

The_Conductor

Richard Dower wrote: »

^ potassium, would that not be diet related?....if he's not absorbing minerals through the intestine....can they not give him supplements through IV or injection?

Its not that unusual to suffer potassium deficiencies and other electrolyte imbalances, as a result of CD, malabsorption in the GI tract, and interactions with meds. I used have to have my electrolyte levels checked twice or three times a year, and take one of the sachets of salty blackcurrant stuff every morning......

You are right- supplements by IV or injection are probably the way to go.

Richard Dower

^ i take multi vitamins + B12 injection every month, get a blood test every 3 months because of the Imuran, how long have you guys been on Imuran?....i was told no more then 12-18 months tops because of the side effects.

The_Conductor

Richard Dower wrote: »

^ i take multi vitamins + B12 injection every month, get a blood test every 3 months because of the Imuran, how long have you guys been on Imuran?....i was told no more then 12-18 months tops because of the side effects.

I've been on Imuran 3 years so far (I've had the dosage changed 4 times- reflecting my plunging and recovering white cell counts). I give myself the monthly injections of Neocytamen- saves going to the GP- I was given an orange to practice on before they let me do it myself. I take multivits every morning too- along with silly amounts of coffee, which I know I shouldn't but just wouldn't function without.

Richard Dower

I've been on imuran since 2002, i was taking 150mg per day, but then the Renal Cholic had me in hospital countless times, anyone who has passed stones knows it's no joke pain wise, they usually just soup me up on Pethedine or some other hardcore substance before they let me go. I self medicate these days, as in i only take meds every so often or when i need it. Deltacortril/Imuran/Pentasa....i do take Patriet regulary though.

My tolerance for steroids ain't great, it sends me loopy...i suffer more psychological effects rather then the classic effects such as "moon face", when i first started taking steroids i got all the classic stuff, but it effects me different now.

lip

Hi,just in relation to Imuran,I have been on it since 1999.Doses have been changed over the years and I went off them while pregnant.I'm now only on 50mg pd.I was taking Potassium tablets for about 2 years after my first op but its been fine since I think.Been on that many tablets I forget what they some of them were for.
Richard,its great you have so much knowledge about CD.I have to admit I'm very ignorant about it.I know the basics and read up about it,but I was never very good at retaining information.I really should know more.I trust my consultant 100%,but his team I find just don't listen.Eg,while in hospital in August,members of his team kept trying to tell me it was the fistula that was causing my pain which I knew was total rubbish.I have had it for 6 years,yes its worsening but its not causing the pain,which I told them every time they mentioned it.One of them was saying it to me again in front of consultant,who put him straight.

Richard Dower

I've been labeled a "difficult" patient, i've had consultants and other staff call me an arrogant prick, no kidding....but i don't care what they personally think of me. I found the younger doctors to be more cool and appreciate i'm not an idiot, the old skool doctors are more ego driven, they don't appreciate patients asking them detailed medical questions and demanding answers.

Knowledge ISIN'T for everyone...why?, because it too can be a problem, as in it leads to obsessive/compulsive tendencies....which i admit to having. But it more about control, or the illusion of, you try to be the doctor and the patient...but there again i've had times when i broke down and just had to resign myself and let them take care of me, it's a balancing act.

It's great that you guys can talk and offer support though, sometimes it's easier to talk to strangers.

geor

Hi Liz,

I know its scary the thought of all the medication :eek:, but the most important thing is to minimise the flare ups and protect your bowel as much as possible from developing scar tissue.

Once you are stabilised there are many options worth trying. Get yourself a good consultant.

I am a colitis sufferer and have been on steroids, pentasa and imuran - I am now med free after going on a very strict diet called SCD. It may not work for you, but there are several things you can try once you have stabilised, for example, fish oil, probiotics etc. have all been shown to have a beneficial effect for crohn's and colitis:).

I have set-up a site here for Irish Corhn's and colitis sufferer's - you may find something useful

http://www.eat-right.ie

Best of luck

LucyBliss

Richard Dower wrote: »

My tolerance for steroids ain't great, it sends me loopy...i suffer more psychological effects rather then the classic effects such as "moon face", when i first started taking steroids i got all the classic stuff, but it effects me different now.

I was on a high dose of steroids for nearly nine months and I swelled up and went up three dress sizes, which was depressing enough but I put up with it because at least I wasn't in pain for a while. But they wrecked my head something terrible. My reactions to things were well over the top. I never got crazy or violent but I'd lose my head over something stupid like not being able to find something or a book in the wrong place. And I knew I was overreacting but I couldn't stop. I had to yell. And if I wasn't yelling, I was crying. I cried at every film I went to, dramas, comedies, Disney cartoons, the whole lot. Animal Planet would have me crying buckets. I was a mess. Then I tapered off them and my symptoms came rushing back and they decided surgery was my only option.
I'd been telling them that for a while but they wanted to try everything medicinally. If I've learned one thing from my experiences over the last four years, it's that should I ever get that bad again, I am going to stick to my guns and insist they change my medication when I say it's not working. I know what it's like to be in good health and no twinges or uncomfortable rumblings and I won't be letting it drag on for ages while the doctor says that I need to give it more time. Because we know when something isn't working well enough to give us our lives back.

geor, I tried the SCD diet in 2005 and 2006 but it didn't work for me. By then, I think my intestine was so badly damaged that it was beyond the help of SCD. It's an interesting way of thinking about food all right, though a very challenging diet especially at first when you're having to do everything from scratch, and certainly I have taken some bits of it to heart, like I limit my processed food and do make my own soups and sauces and things.
I could never stomach the almond bread though, no matter how much I tried!

Richard Dower

LucyBliss wrote: »

I was on a high dose of steroids for nearly nine months and I swelled up and went up three dress sizes, which was depressing enough but I put up with it because at least I wasn't in pain for a while. But they wrecked my head something terrible. My reactions to things were well over the top. I never got crazy or violent but I'd lose my head over something stupid like not being able to find something or a book in the wrong place. And I knew I was overreacting but I couldn't stop. I had to yell. And if I wasn't yelling, I was crying. I cried at every film I went to, dramas, comedies, Disney cartoons, the whole lot. Animal Planet would have me crying buckets. I was a mess. Then I tapered off them and my symptoms came rushing back and they decided surgery was my only option.
I'd been telling them that for a while but they wanted to try everything medicinally. If I've learned one thing from my experiences over the last four years, it's that should I ever get that bad again, I am going to stick to my guns and insist they change my medication when I say it's not working. I know what it's like to be in good health and no twinges or uncomfortable rumblings and I won't be letting it drag on for ages while the doctor says that I need to give it more time. Because we know when something isn't working well enough to give us our lives back.

Cortico steroids are horrible things, it has a cumlative and toxic effect on the body, it sent me manic, not only that but i suffered horrible insomnia....i was like a race train, whacked out on adrenalin, i could never sit down or be at ease. They had me on high doses of sleeping pills and valium....like water off a ducks back, nothing touched me.

As you say you're reactions to things are not normal, i got ultra paranoid, as you said...once i tapered off over time things got much better, i started sleeping more and more. I now insist they try different drugs rather than deltacortril or hydrocortisone injections....it's a nasty drug, but it does ease the symptoms of Crohn's very well.

But sometimes no amount of steroids help and it's surgery time....

The_Conductor

I tried all manner of diets and homeopathic remedies before I was diagnosed with Crohn's Disease. During the periods in which the disease was in remission- whatever the current thing I was on, was declared a success by my parents along with the practitioner who was pushing it- and when the relapses occurred, I was told I had to have done something to trigger the relapse. I must have tried every possible diet going down the years- including the specific carbohydrate diet- other than the initial phases when a lot of different foods were removed from my diet and my intestinal tract given a chance to rest for a while, nothing really worked.

Eventually (over the space of several years), I came to recognise what the trigger foods for a relapse for me were- really benign things really- packet soups, corn flakes (anything at all with Maize in it), and depending on the degree of activity spicy foods or alcohol. Even dried fruit could be poison- but what I could and could not eat was entirely dependent on how I felt on a particular day- it was not a static list (other than the maize and MSG).

With Crohn's Disease- it normally is the case that by the time you're diagnosed you've already developed significant scar tissue (perhaps that is improving these days?) When I first had surgery- at age 21, what was expected to be routine surgery, turned into 9 hours and 18 feet of small and large intestine with multiple resections. I bumped into the surgeon a few weeks ago on a different matter (Parnell Keeling) and he didn't recognise me

With prednisolone and deltacortil- I found the only way I could take them was by timing my doses so that I had the large morning dose really early (5-6AM) and then the second and third doses later- but never later than 3PM in the afternoon. I found it to be worse than caffeine- if I took it later- I'd be up all night (and often was). Wandering around the house in the wee hours of the morning became the norm for me........

I was on Pentasa for several years- despite the numerous flareups that occurred in that time. My consultant swore by it- and eventually only gave up on it when it was obvious it had no effect on me whatsoever. For the past 3 years I've been on Imuran- the dose varied according to my weight and my white cell counts. The Imuran has been very helpful- but going around with a constant cold, and being terrified of any communicable illness, is not fun.

A weird problem I've always had- is with seatbelts in cars. I've found the pressure it puts (which is minimal) on my abdomen, to cause excrutiating pain. When driving I've often had to pull in, take off the seat belt and put the chair back to recover for 15-20 minutes before continuing. The constant state of exhaustion from the Crohns has also made driving dangerous- when you're in pain, and tired, and trying to keep warm- its not a good idea to have to drive anywhere........

S.

geor

Hi Lucybliss,


Yep SCD is very tough to follow, I'll agree with you there. But what price can you put on being med free? Having some control and some hope other than medication.

SCD has been a struggle for me, but there are ways of introducing it gradually and seeing if it's making a difference, eliminating wheat and diary (except SCD yoghurt) can certainly improve things alot.

If you get positive results , less bloating, gas, solid movements - it may inspire you to go the strict SCD route...

It is a tricky diet and its as much about eating lots of veg and proper probiotics as eliminating the stuff that difficult to digest..

Anyhow, for me, the choice between steroids and even the very strict SCD is an easy one..

kildareash

Thanks guys, the potassium came back up a little bit, so he's off the drip and is just taking supplements now.

All going well, we are going to get the best Christmas Present ever...docs are planning to release him on Christmas Eve.
Fingers crossed the next few days go as smoothly as the last week.

He's going to be on steriods for a few months, and they're already playing havoc with sleeping patterns etc. They might settle down once he's home. I really do think that they have been the missing link.

The first time his fistulas reopened in September, the docs didn't listen to him. He had this unnatural gurgling and was literally bent over in two. I've never seen him in so much pain. Docs told him it was small communication between bowel and fistula.
The Stoma Nurse said she had never seen anything like it before, he literally just burst open.
The docs admitted that they should have listened to him, and in fairness they have ever since.

Richard Dower

If you can find alternatives to steroids..take it, i firmly belive steroids have long term psychological and physical effects that stay with you.

Does anyne suffer from lower back problems?

Richard Dower

Oh and anyone with loose bowel movements/constantly going to the loo....try Imodium, but be VERY careful with the dosage and how often you take it. It'll be trial and error, it does help and you do go to the loo less, but you don't want to get constipated or god forbid...an obstruction.

The_Conductor

Richard Dower wrote: »

If you can find alternatives to steroids..take it, i firmly belive steroids have long term psychological and physical effects that stay with you.

Does anyne suffer from lower back problems?

Osteopenia and arthritis in knees and wrists- at age 35 :mad::(

Steroids do have their place- to be perfectly honest, I very much doubt I'd still be alive without them- but the longterm side effects of protracted use are shocking. No-one ever explained to me what the implications were- and I blindly continued to use them when I probably should have been exploring alternates- but at the same time- often they were the only things that brought my symptoms under control. The Imuran I've been on for a the past few years has been a total godsend, and has decreased the relapses significantly to more manageable levels.

I'm not so sure that the SCD diet you're pushing is equally applicable to the different gastrointestinal conditions though- there have been several studies which show specific responses to diet other than SCD. While I'm not suggesting smoking is good for anyone- you will find several well established studies showing the benefits of smoking for those who suffer from Colitis and IBS- whereas a Crohn's sufferer would be in bits from the nicotene.... Likewise there are many similarities in Colitis sufferers- whereas Crohn's sufferers tend to be more unique in their specific responses to diet or medication. That said- we need further research- both in the human population, but also parallel research in cattle (Johnnes Disease) and other spp. to try to get a better understanding of our conditions and how to live a life less affected by the chronic pain and inconvenience they entail.

Richard Dower

^ i would NEVER advise anyone to stop taking the steroids, it's downright dangerous!....not only because the drug itself builds up in the blood and immune system, a cold stop to taking the meds would have a serious effect on the body, that's why you taper off over several weeks.

But also the positive effects of cortico-steroid use to effectively treat the symptoms of Crohn's....as much as i dislike steroids...the positives outweight the negatives. We need more research into Crohn's and drug treatments.

Imuran and immuno-suppresents have done great things for Crohn's....but again, you're suppressing the natural immune system, you open yourself open to attack and infection. In addition Imuran is a new drug, the long term side effects are NOT KNOWN!....which is why they say no more then 12-18 months.

This advice i got is a few years old, the advice may have changed, the aim is to be drug free, or the bare minimal daily dose, or every other day.

As for smoking in Crohn's....um, the ciggies kept me sane in hospital!....i've been advised many times to stop, not just for standard reasons but specific to Crohn's...but i do smoke, it's 100% stress related.

Richard Dower

OMG!...you mentioned Cattle, let me tell you how i think i got Crohn's...basically i was an idiot, tryna be "in the crowd", i hung with a group of so-called-friends, they wanted to try magic mushrooms, so they went to a field which had lots of cows and s*ite everywhere.

They cooked them up, the resin from the mushrooms to make a liquid, anyway i drank some and got a mild "trippy" effect. I asked them could i take some home....but i had NO CLUE about dosage or how dangerous it was. I took a big dose and basically ended up in hospital with my stomach pumped.

The week after i was sent home i was in bits with cramps, weakness and flu like symptoms....over the next 3-4 months i developed all the Crohn's symptoms. i 100% firmly belive the two are linked, i injested a bacterium that triggered Crohn's.

IMO there is a bacterium in all human intestine that triggers an auto immune response from the body, how this bacterium gets "triggered" or becomes active or why only certain people such as Crohn's patients are infected is the unknown. Something triggers an either naturally present bacterium or something gets introduced into the body.

In my case i belive either something new was introduced into the body or something in that magic mushroom liquid triggered something already present in my body.

The_Conductor

Yes- there is a correlation with the TB bacteria- and its identical in cattle. Rather shockingly- there has been signficantly more research on Johnnes Disease in Cattle- which is the bovine equivalent of Crohn's- as its seen to be of far more economic value to research this area, than humans.........

Some people are more susceptible to autoimmune diseases than others- paradoxically they are the people less likely to be ill beforehand- as their over active immune systems zonk anything that crosses their paths. Why the gastrointestinal tract, or the pancreas, or the lungs- are suddenly seen as foreign objects to be disposed of- is anyone's guess.

We do need a lot more research- its handy to group the autoimmune diseases under an umbrella- but in truth they have as many differences as they have commonalities. Along with research- we also need education- teachers in schools and employers should be made aware of how these illnesses can be limiting factors. We also need access to ongoing medical supervision and medication as and when required- it shouldn't be that people feel they have to make a choice between paying for their VHI and their meds, or postponing trips to the consultant because they feel they can't afford it.......

Even among those who suffer from the various conditions/illnesses/diseases- there is often a lack of understanding of what someone with a related condition is going through. An IBS sufferer I know often pontificates that Crohn's Disease is blown out of proportion- that greater resources should be put towards IBS. There are damn all resources put towards either- but we don't help our cases with in-fighting amongst ourselves (Crohn's patients for the most part not even having the energy to campaign for anything). It really is the case that nothing is going to be done for Crohn's Disease, Colitis, IBS (add any of a long and meandering list of diseases and conditions to this list) until such time as people get together in effective groups and lobby like hell. Women think breast cancer is the largest killer of women out there (it doesn't even factor in the top 5- cardiac disease being the top killer for both men and women). Why is it so prominent in the media? Because they do a damn good job of lobbying- thats why........

We really need to get our acts together.........

Richard Dower

^ yes!...i was NEVER sick one day before Crohn's....except for a yearly chest infection in the winter, i was always well!....never in hospital save for my apendix exploding and surgery, i was on holidays in Guernsey at the time.....lol!

I too was told "it could be TB" for months, it was only when the diseased piece of intestine was removed and sent to Histology that they finally confirmed Crohn's....my surgeon told the the foot of intestine they removed was the most badly diseased he had ever seen in his career, jezz...i never talk about Crohn's stuff with my family...lol!

Richard Dower

I also think Crohn's should a listed Long Term Illness and being able to access all the benefits from the LTI book.

LucyBliss

geor, I hope I didn't come across as being down on the SCD diet because that wasn't my intention at all. I would never intentionally diss something like that, especially as I know that it has brought great relief to so many people. But it didn't work for me and I'll be honest and say that while I have great respect for the people like yourself who stick to it honestly, it's just not a way of life I want to embrace right now.

We do need a lot more research- its handy to group the autoimmune diseases under an umbrella- but in truth they have as many differences as they have commonalities. Along with research- we also need education- teachers in schools and employers should be made aware of how these illnesses can be limiting factors. We also need access to ongoing medical supervision and medication as and when required- it shouldn't be that people feel they have to make a choice between paying for their VHI and their meds, or postponing trips to the consultant because they feel they can't afford it.......

Even among those who suffer from the various conditions/illnesses/diseases- there is often a lack of understanding of what someone with a related condition is going through. An IBS sufferer I know often pontificates that Crohn's Disease is blown out of proportion- that greater resources should be put towards IBS. There are damn all resources put towards either- but we don't help our cases with in-fighting amongst ourselves (Crohn's patients for the most part not even having the energy to campaign for anything). It really is the case that nothing is going to be done for Crohn's Disease, Colitis, IBS (add any of a long and meandering list of diseases and conditions to this list) until such time as people get together in effective groups and lobby like hell. Women think breast cancer is the largest killer of women out there (it doesn't even factor in the top 5- cardiac disease being the top killer for both men and women). Why is it so prominent in the media? Because they do a damn good job of lobbying- thats why........

We really need to get our acts together.........

That reminds me of something I read with regards to having a stoma. That there were cases where people with bowel cancer died because nobody talked about stomas or anything to do with the bowel, not just because of the embarassment factor but because it wasn't a 'sexy' disease like breast cancer, which for a long time was never discussed either. I mean absolutely no disrespect to anyone with cancer, I'm talking more about the public perception of it with the Pink campaigns for awareness and all that. But to sit and talk about Crohns means to talk about running to the toilet a lot of the time and that's not considered polite conversation (naturally). But yes, there should be more awareness, especially in this country. I get the UK Crohns association newsletter and you should see the difference in it compared to the Irish one, which I'm not disparaging. Clearly, there is a big difference in funding between the two organisations.
It's actually something I'd like to have a hand in changing, now that I'm in remission. No point in cribbing about it, if I'm not prepared to try and change it.

geor

Hi Lucybliss,

Not at all, I completely understand!

To be honest it is very vague and take alot of tweaking. I don't think it's a one stop fix for everyone. People react differently to different things.

What't important is to take the food you eat CAN have an effect on Crohns/Colitis and finding out what doesn't agree with you, Also I reckon probiotics and fish oil can have great benefits.

I am still learning but the most important thing is to never stop trying new things...people do go into long term remission.....so the dream is possible:)

lip

Kildareash,good luck for tomorrow,I hope your OH comes home,fingers crossed for ye.
Looked into SCD a while ago.Unfortunately it wouldn't suit me at all.I am a very fussy eater,plus I cannot tolerate fibre most of the time.It obviously works for a lot of people though.My cousin who was diagnosed a few years after me was med free for years,he cut out all dairy.Unfortunately last year he ended up having surgery and is now on meds but is hoping to be drug free again soon.
When I first took deltacortril,I too was constantly wound up and bloated.But I have found in the last maybe 3 years when on them I have had only bloatedness.And in the last year I haven't had any side effects at all from them,but they also didn't help my symptoms,and the same when they changed me onto entocort.Mind you,I do think I would have lost a lot more weight if I wasn't on them.
I was speaking to my surgeons secretary the other day and he has assured me that I will be going in for op straight after the new year.Maybe it will be 3rd time lucky and I will get a bed.
Have a lovely and well Christmas everyone.

Bonnie09

Hi guys

Hope everyone had a lovely Christmas Doing great since the surgery 6 months ago. Not on any medication at the moment, which will be reviewed at my next checkup in May. I am allergic to 6MP so as to what they can put me on to prevent my Crohns returning, I dont know! Bone scan came back clear also which was a surprise! Currently undergoing a study with UCC where I am taking 1 Calcichew a day and also a placebo/Vitamin K tablet. Hopefully this will help with the prospect of Vit K replacing Calcichew
Loving the eat-right.ie website. I need to start abiding by some diet rules again myself as I lost faith in trips to the dietican along time ago.

Hope everyone is keeping well and heres to a great year

geor

Hi Bonnie09,

Had a great Christmas thanks! Found out my wife is expecting, so thats was the best present ever!

I've started introducing some carbs like rice and stuff, going well so far....plus ordered some glutamine powder and Natren probiotics. Will keep yee posted on how I get on.

Crohn's boy - a guy i chat with in Canada, has managed to go into long term remission and is med free swears by them!

SNIP

Let me know if there is anything else you would like to see on there

Happy New Year:)