Crohn's Disease

geor

I'm following a less strict SCD, I was on it strict for about a year and less strict for the last year... It has definitely made a difference, even though i did lose a lot of weight, had a colonoscopy last week and my bowel was virtually normal with only a very mild inflamation...good news.:)

oil of oregano and good probiotics are essential.....i found Jini Patells book, listen to your gut excellent and would recommend this to anyone!

CathyMoran

My husband has peritonitis - he only told me. Worried about him. He has a tear.

LucyBliss

CathyMoran wrote: »

My husband has peritonitis - he only told me. Worried about him. He has a tear.

Oh lord, he is really going through the ringer these days. I hope he'll be okay. Sending good thoughts and prayers to the three of you.

CathyMoran

LucyBliss wrote: »

Oh lord, he is really going through the ringer these days. I hope he'll be okay. Sending good thoughts and prayers to the three of you.

We are expecting again - I may have addisons myself. Daddy Shane will be a day patient next week. Thanks.

LucyBliss

Boo to the Addisons disease, hooray for expecting again! When are you due? That's if you don't mind my asking.

Everything always seems to happen at once though, doesn't it? It's like the universe just waits for one big thing to happen and then piles more on.

CathyMoran

LucyBliss wrote: »

Boo to the Addisons disease, hooray for expecting again! When are you due? That's if you don't mind my asking.

Everything always seems to happen at once though, doesn't it? It's like the universe just waits for one big thing to happen and then piles more on.

Well I had the Graves as a kid and am type 1 diabetic so they are linked. I will be sorted with that, just have to be careful. My husband's mummy is seriously ill too. We are both thrilled with our son so having another one makes me want to pinch myself. Is a June baby, date is a bit changeable at the moment.

My in laws gave out to me for not looking after their son - then she appologised - have to relax thought the addisons explains most of my symptoms. Sorry for the stress rant - I don't like being tough on my husband and illness is one of the most things that we have in common. I just want all of my family to be OK.

Corruptedmorals

Berty wrote: »

Im actually quite interested in reading about that. I just wikipedia'd it and it sounds less "intrusive" that a traditional "poke".

I imagine though the lack of control, i.e the way it points would be an issue.

Lets say the Surgeon/Doctor wants to look at one spot and get a better look and the fecking thing moves off down the intestine. They can hardly push on your abdomen to move it back.

We are off to meet the Surgeon again in November so I will ensure "herself" asks him as Im out of the country.

Im very intrigued.

They told my missus that she will have to be injected with some dye and if she leaks she is not ready for a laparotomy reversal and if she doesnt leak she is ready.

The Capsule could be helpful also. Thanks.

Well it's very different to a normal endoscopy in that you're not really around a doctor much. I waited 10 weeks for the appintment in Tallaght, it's a small office seperate from the gastroenterology dayward and seems to be run by 2 people. The fast involves no klean prep The downside to that is dehydration- no liquids for approx. 12 hours, which made me quite sick though I'm underweight anyway. At the appointment everything was explained and was told the capsule would pass naturally the next day. 8 or 9 sensors are placed on the torso then they put a strap around your neck with a pocket at the waist for the data recorder- it's a bit fatter and heavier than an old walkman. The capsule is in a plastic covering, once it's out of the covering a blue light flashes on the date recorder and you have to keep checking it's flashing. The capsule is about the size of a vitamin capsule, it's fat rather than long so very easy to swallow, felt like i was swallowing a toy part because I could see the camera blinking. My appointment was at half 8, at half 10 I was allowed drink water/other clear fluids and at half 12 a light snack. Here's the strange part- you basically leave the office once you';re all hooked up and come back in 8 hours, so you can go home if you want. I don't live near enough and was too weak to get 2 busses so spent the day sitting around the square centre. I've no idea if the direction/speed of the camera would hinder anything- in my case it was to rule out Crohn's in the small intestine- it is almost certainly just IBS so it's not an extreme case.

sjodonoghue

geor wrote: »

I'm following a less strict SCD, I was on it strict for about a year and less strict for the last year... It has definitely made a difference, even though i did lose a lot of weight, had a colonoscopy last week and my bowel was virtually normal with only a very mild inflamation...good news.:)

oil of oregano and good probiotics are essential.....i found Jini Patells book, listen to your gut excellent and would recommend this to anyone!

Hi Geor,
Thank for reply and the advise and that great news that you bowel has only a little amount of inflammation:), As you know thw Specific Carbohydrate Diet is so strict, and when you do not reap the rewards months after month you start to question it, I am currently checking out the "listen to your gut", Does this mean, nice things like Bread, Cereals, and the nice foods could be back.
How lond would you recommend it as a trial, I will purchase the book anyway
Steve

HigginsJ

had terminal ilieum removed 10 days ago and got staples out of tummy today. fairly sore still guess be few weeks before see the benefit (fingers crossed)

The_Conductor

HigginsJ wrote: »

had terminal ilieum removed 10 days ago and got staples out of tummy today. fairly sore still guess be few weeks before see the benefit (fingers crossed)

Take things easy. I suppose the expression is- don't run before you can walk. Good food at this stage would be fresh soups and low residue foods, take things easy though!

Well done.

Shane

HigginsJ

On plenty of soup ok. Forgive my ignorance but what is classed as low residue food?

The_Conductor

HigginsJ wrote: »

On plenty of soup ok. Forgive my ignorance but what is classed as low residue food?

Low fibre, easily digestible carbohydrates and proteins.
If you have the opportunity- book yourself an appointment with the dietician attached to your gastroenterologist- it would be well worth while.

Ps- now that you've had your terminal ileum removed- you will need to have your B12 checked frequently, as you'll not be able to absorb it from food.

Shane

sjodonoghue

Best of luck Higgins and I wish you a speedy recovery and I really hope your operation makes a difference for you. Rest us and take it easy a while.

Melis

HigginsJ wrote: »

On plenty of soup ok. Forgive my ignorance but what is classed as low residue food?

Yes keep to th soap etc as I had bowel op on 15 Oct and was let out 3 days later that nite I was rushed back in throught a and e with an obstruction on my bowel.

Hope ur getting better. I had staples too there sore but it gets easier.

best of luck

HigginsJ

Thanks Melis. Hope your feeling better.

How you feeling appetite wise. Still dont have much of an appetite myself.

Ush1

Just checkin back in folks. Been on the immuran a few months now and have to say, feeling really good.

Just taking asacolon, calci chew and immuran. Most of the immuran side effects seem to have eased off, only thing is I still get terrible hangovers!:o

Nothing like a solid dump though!:D

The_Conductor

Ush1 wrote: »

Just checkin back in folks. Been on the immuran a few months now and have to say, feeling really good.

Just taking asacolon, calci chew and immuran. Most of the immuran side effects seem to have eased off, only thing is I still get terrible hangovers!:o

Nothing like a solid dump though!:D

Whatever about terrible hangovers (to be honest- my capacity to drink isn't very high)- I found I was getting the most awful migraines on Imuran. I was prescribed Zomig to help with them. I'm off the Imuran altogether now, as my white cell count crashed- and since coming off, I haven't had a single migraine......?

nerdysal

Shane- just interested to know what way do you suffer with your migraines? I get the aura, paralysis on my left side, vomiting, tingling in my tongue and obviously the absolutely banging headache. I got migraines before I started imuran but the above symptoms started after.

The_Conductor

nerdysal wrote: »

Shane- just interested to know what way do you suffer with your migraines? I get the aura, paralysis on my left side, vomiting, tingling in my tongue and obviously the absolutely banging headache. I got migraines before I started imuran but the above symptoms started after.

Absolutely awful headache, chronic vertigo- couldn't even get down the stairs to the kitchen without falling, vomitting, inability to concentrate on anything at all (couldn't listen to the radio/tv), couldn't even keep water down. Curiously enough- light didn't seem to have any effect/impact on me-with normal migraine light is a factor, it didn't bother me one way or the other........

Abdominal shots of stemetil, alongside the zomig (which melts in your mouth), and not trying to move for 12-18 hours, normally allowed it to wear off, and you'd be fine again- exhausted, but ok.

kildare lad

hi all..im new here..i've crohns for the last 6 years n ive a pain in my fxxking arse with this disease...anyone fancy getting a meet up going sumtime and talk about stuff, its jus hard to meet people that understand what its like and how much it effects your life...thanks

Ush1

smccarrick wrote: »

Whatever about terrible hangovers (to be honest- my capacity to drink isn't very high)- I found I was getting the most awful migraines on Imuran. I was prescribed Zomig to help with them. I'm off the Imuran altogether now, as my white cell count crashed- and since coming off, I haven't had a single migraine......?

I actually did get a few severe migraines aswell and I thought I might have to come off them. They took lots of bloods and advised me to stick with it for a while and the headaches have stopped now. Feel grand.

wild_swan

Hi!! I'm trying to organise an informal support group/social group for people with IBD in the Midlands.

The Facebook page is very originally entitled 'I have IBD Support Group'
:rolleyes: so come 'Like' the page @ http://www.facebook.com/pages/I-Have-IBD-Support-Group/176402912375016?v=wall

Hoping to organise a meet-up, just something informal (tea, coffee, whatever takes your fancy!!) after x-mas & take it from there. So anyone with IBD who is in the Midlands is more than welcome to attend & bring friends & family if you like!! Though we won't be regionalist - If anyone else wants to travel to us you're also welcome, the more the merrier!!!:D

HigginsJ

hi how is everyone.

have meeting with surgeon on monday. 1st meeting since the Op so not sure what to expect or what they will be checking.

HigginsJ

hi. just wondering if anyone has had to have vitamin b12 injections after operation. if so how are they?

The_Conductor

HigginsJ wrote: »

hi. just wondering if anyone has had to have vitamin b12 injections after operation. if so how are they?

Its normal for Crohn's Disease to start in the terminal ileum and spread elsewhere- so it would be quite unusual to have surgery and not have the terminal ileum removed. The terminal ileum also happens to be where you absorb B12- so as a generalisation- if you have surgery for Crohn's you will need to take B12 injections afterwards, as you will be unable to absorb B12 from your diet.

The injections themselves are fine- sort of like taking insulin- only its a deep intramuscular injection, rather than a subcutaneous one. I was taught by my consultant how to take it myself- gave me an orange to practice on, and let me off. Occasionally you will hit a nerve which hurts like hell, or a blood vessel- and have a battle with plasters, but generally, its worked out quite well for me.

An issue at the moment is the non-availability of cytamen and neocytamen in local pharmacies. I've gotten my current supply in Belfast (thankfully it has a long shelf life)- but I've been informed its still not available. There was a note from the IPU about a generic being available- not sure if this is the case yet?

Shane

LucyBliss

I get regular B12 injections now. My GP does them. He says I don't have to make an appointment, I just call in when I need one and he fits me in. The injections take less than a minute. I can always tell when I really need one because I feel really sluggish and just want to hibernate. I let it go too far this summer and thought the tiredness was just reaction to my grandmother's death and stuff, until I got a blood test and they said my B12 was low.
To be honest, if needing those injections is the trade-off for being able to eat food and feel like I'm a human being again, then I'm fine with it.

Shane, I hadn't heard about it not being available. Thanks for that heads-up. I must check when my next B12 prescription needs to be filled.

LegacyUser

Hi guys,

Im thinking about having my terminal ileum removed, things have settled down a lot with infliximab for me but everything only really ever works in the short term with me, humira worked for about a year and now infliximab is working quite well but the operation is also an option. Im not sure what to do as I have three months off this summer, the longest time i'll probably ever have off, and I was thinking I might have it then. I know I will eventually have to have the diseased part removed as its quite narrowed and scarred, but should I do it now when I dont have to take time off even though things are ok?
Im just really wondering if its worth it!Things are manageable with infliximab but obviously still a long way from normal! I dont know how anyone else's experience with this operation has been and im just not sure if it would be worth it(obviously no way to tell for sure as it could come straight back elsewhere!)

The_Conductor

sheesy wrote: »

Hi guys,

Im thinking about having my terminal ileum removed, things have settled down a lot with infliximab for me but everything only really ever works in the short term with me, humira worked for about a year and now infliximab is working quite well but the operation is also an option. Im not sure what to do as I have three months off this summer, the longest time i'll probably ever have off, and I was thinking I might have it then. I know I will eventually have to have the diseased part removed as its quite narrowed and scarred, but should I do it now when I dont have to take time off even though things are ok?
Im just really wondering if its worth it!Things are manageable with infliximab but obviously still a long way from normal! I dont know how anyone else's experience with this operation has been and im just not sure if it would be worth it(obviously no way to tell for sure as it could come straight back elsewhere!)

Obviously surgery should be viewed as a last resort- and if your Crohn's is under control with Infliximab, or by other methods, I very much doubt that your consultant would be in favour of surgical intervention.

At the end of the day- it is a decision you have to make, in conjunction with the best advice you can get from your consultant.

From my own perspective- I've now had surgery 6 times, and my Crohn's is pretty ok with minimal medication (though I do have a big problem with bleeding, as I'm on warfarin because of persistent recurrent DVTs and clots- which apparently is not unusual with Crohns). The first time I had surgery it was a lot more major than anticipated (they thought it was just the illeum, but once surgery started it became apparent that it was far more extensive and I ended up with 12 or 13 separate resections. This would be far from normal though- my consultant at the time reckoned I had Crohn's for over 10 years without ever receiving appropriate treatment. It took me a long time to recover from the initial surgery- but I was in an awful condition going into surgery- just over 6.5 stone, surviving on IV hydrocortisone.

That was 16 years ago for me- and things have definitely improved for the better, with far better diagnosis techniques and far better treatments available. I've had to have surgery several times since- however my recovery from the most recent surgical interventions has been very rapid- to the extent I was allowed home after 4 days from St. Vincents, just going back to the clinic and then again to get the staples out. This is not normal though!!!

Surgery is not a magic wand- and unfortunately with Crohn's (unlike UC) is not curative. You can remove the diseased part of the intestinal tract, however it would be far from unusual for the disease to recur, often at the surgical joins, but potentially literally anywhere in the GI tract (and it can also manifest itself externally).

I know its rich coming from someone whose had surgery 6 times- but I genuinely would not recommend it, unless you have exhausted all other options available to you- and it is something that you need to discuss in detail with your consultant.

Pet

Uuugh. I probably shouldn't have started on this thread...I'm sort of terrified now!

I'm newly-diagnosed as of last week. It's all a bit of a shock - I knew something was wrong all along (and have been waiting 18 months to find out what!), so on one hand, I'm glad to finally have a diagnosis...but I was still surprised to find out it was Crohn's. Shiiiiiit.

Starting on mesalazine soon, and getting a capsule endoscopy done in the New Year (which I'm nerdishly excited about).

How do I go about getting B12 injections? I don't think I've been tested in a while but I'm permanently wrecked so it might be a good idea.

HigginsJ

Hi Pet,

dont be overly concerned. Once you start getting on some meds you will notice a big difference. your appetite will pick up and you will get some energy.

I was struggling to get out of bed at one stage so know how you feel.