Crohn's Disease

Tony H

camroc76 wrote: »

My gastro guy has me taking both as a prep for a full scope every time....pico in the morning and Klean prep in the evening.

Delightful stuff !!

I have a colonoscopy next wednesday and I'm on the same one dose of picolax 4mp one at 6pm and 2 lts of kleanprep at 8pm :eek: , cant handle the klean prep at all its vile and makes me throw up , i think we might have the same gastro/sadist ,
I'm in a major flare up at the moment so I'm running on empty as is , hopefully I wont need the kleanprep after the pico .

patnor1011

Hmmm. I am kind of spared of kleanprep and its wonders as I have bag and there is no point of taking it. My last 2 or 3 colonoscopy were without taking anything prior.

princess-lala

RockLady wrote: »

a result of costochondritis,

I have this too my gp thought I was having a heart attack the first time I went with it. Straight to a&e and ut was diagnosed a few hours later.

RockLady wrote: »

When talking about IBS, he mentioned diet and even brought up FODMAPs. From what I've heard, a lot of doctors go "wha'?" when you ask about that!

RL.

I'm back with my dietician Wednesday week and this is probably what she's gonna try me on

The_Conductor

patnor1011 wrote: »

Hmmm. I am kind of spared of kleanprep and its wonders as I have bag and there is no point of taking it. My last 2 or 3 colonoscopy were without taking anything prior.

I don't have a bag- but I've had so much surgery- that skipping my imodium the previous day (I take 8 a day) is the equivalent of kleenprep for me...........

princess-lala

fml!!

They're back to another few possible different diseases along with the auld crohns.

As if I didn't have enough shīte going on -pardon the pun

CathyMoran

princess-lala wrote: »

fml!!

They're back to another few possible different diseases along with the auld crohns.

As if I didn't have enough shīte going on -pardon the pun

I have seen that that people tend to have a few illneses together - my husband and I both have multiple illnesses.

OUTDOORLASS

Yep, I would agree with you Cathy.......

princess-lala

I have loads but christ its like a new one appearing monthly.

Im fooking sick of it

OUTDOORLASS

And, like, they are very real illness....It gets to a stage where sometimes, u say, I cant go to the Doctor again, will
he/she say to herself....what is it today......but these are very real problems....and not in your head.
I think, once you have some kind of disease that hits the immune system, and it turns on itself......it can hit
multible organs.....causing lots of problems.....

princess-lala

I'm starting to think I've no heart cause it seems to be the only organ not involved

Tony H

Well I had my colonoscopy yesterday and I'm in bed feeling sorry for myself all aches and pains , the prep went well , I took a split dose of picolax (did not take the kleenprep) and was all clean inside , brought into the theatre , was given the anaesthetic and o2 , waited to drift off to happy land ,

@:mad: and was just told it wont be much longer and they continued ,
Is this normal , it happened to me before and I was given more sedation but this time I was just to tired and sick to stop them and had to endure ,
should I complain or just let it go ,
as it is im not too happy with my GI , until recently I have never had a bone density scan , I was sent for one by my new gp who is great and really proactive and after the scan I was told my bone density was very low and that i should have been sent for a scan years ago ,apparently the GI in CUH sends all his crohns/colitis patients for one every two years,

ok rant over

thanks for reading

Tony

patnor1011

She need all the support she can get, I wonder if we can somehow join her:

http://www.independent.ie/irish-news/courts/crohns-disease-sufferer-asks-high-court-to-quash-governments-decision-to-set-up-irish-water-30627166.html

HowPedantic

Hi everyone, just thought I would throw in my diagnosis story to the pile,
Around the winter of 2012, I started getting bad pains in my knees, which we had just assumed was damage I had done due to sport, and as it wasn't constant or anything, we let it go and forgot all about it. Then, last summer, which was 2013 it came back again, and I went for blood tests as my GP thought that it might be arthritis, blood tests came back negative. In the September of 2013 I started to get really bad mouth ulcers, and tonsillitis that occurred every three weeks or so for months at a time, I was extremely tired and seemed to just lose interest in everything. Over Christmas 2013, I started having loose bowel movements with lovely mucus, which then transitioned to bloody diahoerra from about February 2014, kept going for blood tests with the GP which kept coming back all clear, and then in May 2014, I finally fessed up about my bowel movements, and my GP had said "Crohn's" straight away! She referred me to the hospital for an appointment, but I started to get really bad, I lost nearly three stone, was going to the bathroom up to every twenty minutes - day and night, I was so tired and couldn't move, so my mam brought me to A&E in July, and I was admitted for a week, they did a colonoscopy and diagnosed me with Ulcerative Colitis "which may be Crohn's" and discharged me on Prednisolone and Pentasa, after three weeks I still hadn't improved and we went back to see the consultant, who changed my medication from Pentasa to something else, I don't really remember! Over that next week, it's kind of hazy, I was in so much constant pain, I couldn't sleep, I couldn't even go to the bathroom, my mam had to carry me because I was so weak and I was getting such muscle cramps in my legs that I couldn't even bend my legs to sit on the toilet! One morning, mam had enough so she brought me back to A&E and as soon as they took my blood pressure, I was hooked up to a ECG and had chest X-Rays done as my heart was basically giving up. My haemoglobin was so low that I needed a blood transition, (needed one - didn't get one). After a couple of hours, it calmed down once I got the IV steroids, and they started looking for other treatment. At that time, they sent me to Beaumont to see Prof. Patchett (anyone seeing him too?) and he prescribed me to start Infliximab! I've had two infusions already and I'm doing much better!

That's my long winded story - apologies!!

camroc76

Tony H wrote: »

I have a colonoscopy next wednesday and I'm on the same one dose of picolax 4mp one at 6pm and 2 lts of kleanprep at 8pm :eek: , cant handle the klean prep at all its vile and makes me throw up , i think we might have the same gastro/sadist ,
I'm in a major flare up at the moment so I'm running on empty as is , hopefully I wont need the kleanprep after the pico .

Perhaps Tony !!!..Nothing to "Crowe" about

On another front, I was diagnosed with "Carcinoma Insitu" of the colon and rectum and therefore am having an ileostomy next month....bit of shocker:eek: but nothing I can do about it now..acceptance is the key now i guess !.

Meeting the stoma nurse on Thursday next and then we await the big day:eek::)

Gael23

http://www.independent.ie/irish-news/courts/crohns-disease-sufferer-asks-high-court-to-quash-governments-decision-to-set-up-irish-water-30627166.html

Might be of interest to some people here.

OUTDOORLASS

Took my shot of Humira last night. Noooo energy today....and major case of the munchies....All I.m doing is going
from press to fridge trying to get energy from something. Just as well I have circuit training tonight. I might work off
some of the calories I have eaten....Happy W.end to all....

The_Conductor

I'm the same on cortisone- eating rings around me here........
Its almost funny how we go hunting out food when we're on meds........

OUTDOORLASS

Mmmmmm..Mr Conductor....if you are on cortisone that means things are not good in your camp. Hope you get on top of it soon.....

The_Conductor

OUTDOORLASS wrote: »

Mmmmmm..Mr Conductor....if you are on cortisone that means things are not good in your camp. Hope you get on top of it soon.....

Thanks- doing my best here.

Northern Monkey

OUTDOORLASS wrote: »

Took my shot of Humira last night. Noooo energy today....and major case of the munchies....All I.m doing is going
from press to fridge trying to get energy from something. Just as well I have circuit training tonight. I might work off
some of the calories I have eaten....Happy W.end to all....

When I first started on humira I had to spend the whole of the next day on the sofa it wiped me out so badly. Thankfully that died off after about 2 months use.

OUTDOORLASS

Morning...I.m on it with about 2 years, and I find the following day after a shot to be fairly tough, energy wise.
My GP.s daughter is on it for something else, and she has said to me that she can tell when the daughter has taken it, because of the look of the grey look on her face. I am gone back to circuit training trying to make a bit of energy.
The experts say you have to use energy to make energy, so I.m trying to make a bit more for myself !!!!!

patnor1011

Humira. What to say. I was on it for about a year and few months. What I can say for sure, I got some side effects and cant get rid of it even that it is about 2 years since I stopped Humira shots. It is like some not painful wounds on my head, like crust and when I scratch it it just come off along with a lot of hair. At some point in taking it I had a bald spots on few places on my head. Hair started grow there again but spots are still there, some days bigger some days smaller. Also a lot of tiny tiny particles of skin or I believe it is like dandruff is coming off my hair no matter how many times I wash them, tried many different shampoo even expensive organic ones but nothing seems to work.

One more thing, I had to have my wife to shoot me with Humira, I simply could not do it myself. At one point I was getting 4 injections at once. If I remember correctly it was 4/4/2/2 and then 1 every 2 weeks.

The_Conductor

Its not necessarily the Humira- you can get Crohn's externally and often it presents on the scalp like this. I had a very interesting discussion with my GI about it over a decade ago (he told me alopecia areata was an external manifestation of the Crohns). Mine died down over time- it recurred a few years later and died down again (eventually). Its not an issue at all for me now (and hopefully it stays that way!!!!).

Talk to your GI- its actually quite common in Crohns. If your GI is any good at all, they'll be well aware of it, and probably have some suggestions for you.

princess-lala

Is it too much to ask for to have a normal body?? Fűck this stupid disease :mad:

The_Conductor

princess-lala wrote: »

Is it too much to ask for to have a normal body?? Fűck this stupid disease :mad:

What I keep telling myself- is life isn't fair- and while I wish I could transplant my brain into the body of a fit and healthy person- I will not let this disease define or defeat me........ We have good days and we have bad days- and on the good days lets live life to the max- and on the bad days- lets look forward to our next good days........

Its very easy to just get depressed and fed-up over everything- its far harder to try and get on with things (especially when you're feeling like crap- and just want to curl up in a ball and wait for the pain to subside).

I know 'think happy thoughts' isn't exactly rocket science- and isn't the most helpful- but I genuinely think that the only way to live with Crohn's is to and not let it beat you- and to take joy and happiness in the little things.

Hugs.

princess-lala

In fairness I shouldn't complain because I have more good days than bad but im up all night with the pain.

Three diseases all give pain! Feck it

Tomorrow is a new day

The_Conductor

princess-lala wrote: »

In fairness I shouldn't complain because I have more good days than bad but im up all night with the pain.

Three diseases all give pain! Feck it

Tomorrow is a new day

It isn't fair- and when you're tired from being up all night- everything seems worse because you're knackered, ontop of everything else....... Hugs.

Marzipan85

Have people here tried the GAPS or Specific carbohydrate diets? I've been reading up about them. I suffer from an anxiety disorder, so after one day of trying to not eat complex carbohydrates I was so stressed out I decided it wasn't worth it. I've heard these diets can almost be a cure for Crohn's. Is this true in anyone's experience Here? [I don't have Crohn's, but get sort of a feeling of inflammation when I eat processed breads and other starches]

The_Conductor

The thing is- what works for one person with Crohn's- won't necessarily work for another person. We have different trigger foods- and treatments- and what may be a miracle for one person may as well be a placebo for another.

Personally- through trial and error- I have found foods with maize (think cornflakes, various breads etc)- to be a massive issue for me. Similarly- some common food ingredients- like carrageen which is often used as a setting agent in yoghurt or icecream- is a killer for me.

By avoiding these 'trigger foods'- I can, by and large, have an unconstricted diet. However- if/when I'm having a flareup- I then have to really take a cull to my diet- during remission, I have a much more varied diet.

I investigated the SCD with the intent of following it- but there are too many foods included in it that are serious triggers for me- e.g. it says you can eat

• Vegetables (except canned) - this is a load of bollox for someone with Crohns
  
• Legumes - some are ok- some aren't
  
• Unprocessed meats, poultry, fish, and eggs - nonsense for Crohns- red meat is a serious issue for many of us
  
• Natural cheeses - can be a trigger food
  
• Homemade yogurt fermented at least 24 hours - can be a trigger food
  
• Most fruits and juices without additives - nope, not on your nelly.
  
• Nuts, peanuts in the shell, natural peanut butter - nuts tend to be ok
  
• Oils: olive, coconut, soybean, and corn - corn oil is a specific no-no for Crohns- so this could be dangerous for you
  
  
• Weak tea and coffee - unless its a trigger food- it doesn't tend to be an issue
  
• Unflavored gelatin - hmmm- flavoured jelly is fine too?
  
• Mustard and vinegar - depends- if you're in a flareup, these could be lethal
  
• Saccharin - probably the biggest no-no of all........

So- if you were to blindly follow the SCD diet- I'd be quite surprised if you didn't hospitalise yourself within a week or two.........

The_Conductor

Here's a link to one of the websites that is promoting the specific carbohydrate diet to Crohn's sufferers: http://www.webmd.com/digestive-disorders/features/specific-carbohydrate-diet-review

I would just like to reiterate- in my opinion its a heap of nonsense- and if I followed it- I know I'd be in hospital before the end of the week.

The best course of action in my opinion- is to get to know your trigger foods, and your body- and recognise when you're at risk of a flare-up (high stress situations etc)- and when you're in a risk period, curtail your diet and take appropriate precautions (including getting as much rest as possible- and trying to minimise your stress levels).

I'm sure some people probably think the SCD is a miracle- and indeed, it may be for them- but we are all different- and what works for one person, may kill another person...........