Some rather interesting questions and I hope it helped them understand a little bit more about what life with crohn's is like for me and how it affects me and others with the condition. I'm amazed no one asked about Scopes - considering the amount of time I've put that word in previous messages!!! I hope others may benefit from some of these answers as well as just my close friends!
- (Question 1) what would you say is the part of it that you suffer worst from and how it affects every day things.
- Thanks - good question - in Relation to the I.B.D (crohn's) I'd say it has to be the fatigue without a doubt... I feel tired 24/7. If I try and have a normal day (I mean as if I was healthy) then I can guarantee that the following day or two I'll probably be stuck in bed! If I do too much I suffer the consequences. Doctors keep saying to me to pace myself, but pacing myself would mean not doing much in a normal day, I'd rather have one full day and pay for it rather then lots of small meaningfulness days! --- in non relation to the ibd, it'd be the fact I'm under 24/7 supervision - makes it hard to do what I want, eg -seeing my friends!
- (Question 2) What has helped you cope with this illness?
- Having others with the same condition as myself to talk to on face book - I've just got to get my physical support group up and running so that I can meet more locals who have the same condition! My hand made items which I sell in aid of the charity have also helped me loads as they give me something to focus on and something to do. The charity have helped me so much - now it's my turn to return the favour! Oh and of course who could forget my lovely dog!
- (Question 3) ha ha, ok, erm. Is there at least some medication for some of the symptoms you have. Are there any tests you can take part in for the medication? Have you thought about alternative medication/healing? x
- There are loads of medications... steroids - well they help during flare ups, but I think we all know how bad steroids are for the body! They make you eat like a pig, they increase risk of cancer - so they don't keep people on it for longer then needed, very bad night sweats, nausea and the list goes on... I'm on an immune-suppressant (infliximab myself) most crohnies and collies are on some form of immune-suppressant. Infliximab - an infusion every 8 weeks for 6 hours which cuts out the immune system, makes me feel flu like for several days after having it... and has side effects of it's own. Every medication to treat the symptoms of I.B.D has side effects, and often you're given more medication to eliminate the side effects of the original medication!!! There are no medications that work very effectively - and not one drug that works for everyone, what works for some, may not work for others. Hope this answers your question. Oh and alternative medicine, I tried AloeVera and also Coconut water, which I still use, not sure what impact they have if any though! I've also tried Reiki, but am unsure about trying other alternative healing.
- (Questions 5) No questions, but a thought. To me, no matter what your condition, in my mind - my heart - you inspired me to become more, to believe in my dreams. You are the wolf that cried out into the darkness, became friends and then didn't let go. Your inginiuty has been remarkable, reaching out to so many, using your skills to be so much more. I am proud to be your friend xxxActually, do have some questions:
1. How often do you have to use your chair?
2. Do you find the way people look at you changes when you use it, even neighbours?
3. Is your strength inconsistant - sometimes you feel you can walk miles or othertimes just can't go anywhere, or is it stable all the time?
4. How often do you need to go into hosptial?- Answer 1 ---I use my wheelchair on the days when I am unable to stand, but well enough to be out of bed. Crohn's is a disease that can vary from day to day, week to week even month to month. I've been known to have weeks where i've had to use my wheelchair non stop, and other times when I can go up to a month without using my wheelchair! It can be due to pain caused by crohns, joint issues, or any other infection/illness that pushes my health over the balance setting off my POTS (Postural orthostatic tachycardia syncope) attacks.
- Answer 2 - My neighbours all know about my condition - to be honest living at this end of the village, everyone is either elderly or has some illness themselves. I do find that some people are surprised though at other locations to see that I am in my chair and wonder why. In supermarkets I make fun of being in the wheelchair and do "little Britain acts". I say - "I want that one" then stand up and get whatever it is off the shelf! You get a lot of people looking then and laughing - I often wonder if some people think they are on hidden camera when I do that!
- Answer 3 - Yes my strength is inconsistent, some days I can run, walk 12 miles with no issues. Other days I can be bedridden! If I have a good day where I'm able to do lots, I can guarantee I'll pay the price the following day! I wish it was a bit more predictable at times - for example, I have a charity stall on the 26th of this month where i'm raising money for Crohn's and Colitis UK. I can't predict how my health is going to be. Am I going to be up to walking around the fete grounds to gather the names for my name the bear? Am I going to be able to manage the full day? Am I going to be ill at all? Am I even going to be able to get out of bed on that day? You really can't predict a bad day, not even a day in advance - I never know what the day holds until the morning of that day!
- Answer 4 - I have regular hospital trips. My infusions require hospital visits once every 8 weeks. On top of that, I have appointments with my gastroenterologist - every 2 months. (A gastroenterologist is the name of a doctor who deals with the digestive system). I have cardiology appointments every 6 months. I have neurology appointments. Physio appointments (up to weekly during a bad patch). This is not to mention all of the tests - endoscopes (cameras up the backside/down the throat) MRI's, Barium meal xrays, CAT scans, blood tests (monthly)... then there are the random hospital visits when things go wrong and I end up carted off in the ambulance - luckily these are a lot rarer then they used to be. It used to be twice a month, now I'm lucky enough that 4 times a year is about enough!
- (Question 6) What is the difference between IBS and IBD?
- I'm very glad you have asked this question. I.B.S stands for Irritable Bowel Syndrome. I.B.D stands for Inflammatory Bowel Disease. I.B.D is a term to describe both Crohn's and Colitis; so to make it clear which I'm talking about I'll type in crohn's and colitis and leave IBS as IBS! I'm amazed how many people get these 2 conditions mixed up! They are VERY different! IBS is extremely common affecting 1 in 5 people - Crohn's and colitis aren't as common affecting approx 1 in 300. IBS does NOT cause inflammation, ulcers or any other damage to the digestive system; whereas Crohn's and colitis do (which is why the pain is so extreme in cases of crohn's or colitis). SOME of the symptoms are the same... but there are huge differences! With I.B.S the digestive system looks totally normal, it just doesn't work as it should. With Crohn's and colitis the white blood cells attack the digestive system causing severe ulceration and inflammation, and as a result of the digestive system being under attack, it doesn't work properly. People with Crohn's or colitis (more often then not) require life changing surgery and may end up needing a colostomy bag. Things that crohn's and colitis can cause which aren't present in cases of I.B.S include -- Loss of Appetite, Rectal bleeding, Fistulas, Strictures, delayed growth, delayed sexual maturity, eye irritations, fever, skin irritations, weight loss, arthritis, liver complications, osteoporosis and colon cancer.... Irritable bowel Syndrome (IBS is a functional disorder) how the body functions. Crohn's and colitis are a disease rather then a syndrome! In many respects IBS is a less serious condition in that it doesn't actually attack the digestive tract. I.B.S doesn't result in permanent harm to the digestive system nor does it cause intestinal bleeding. Some of the symptoms in common that both illnesses have are - food triggers, diarrhoea, constipation, cramps and anaemia. The treatment for IBS is usually food management, but can also include psychotherapy, anti-depressents, stress management, laxatives, antimotilities (the opposite of laxatives), and anti-spasmotics. The treatment for Crohn's and colitis include :- Surgery, anti-TNF drugs (immunosuppresants), steroids, colostomy bags, drip feeds (through the nose, or directly in through the stomach), in my case - I'm often on liquid feeds (no real food what so ever, but a meal substitute which is sort of like a milkshake). Extreme pain medications (Tramadol, Codine, Morphene - to name a few), and Iron infusions, B12 infusions.... oh and did I mention that a fair majority of the pain medications used for crohn's and colitis cause hallucination. Most of the medicines used in treatment of crohn's and colitis have nasty side effects including a hightened risk of developing cancer! If on immunosuppresents (Which nearly ALL crohn's and colitis fighters are on) we are told to avoid direct sunlight!
- (Question 7) I have a question, but is an uncomfortable one for me to ask. Whilst individual differences can vary, what average life expectency can one expect with Crohns - or does it vary and depend upon the severity and / or operations?
- Good news - in general Crohn's / Colitis itself is said to only reduce your life by 3-5 years! HOWEVER ---- A lot of people do die young after having lost the battle, and yet others make it to a very good age! Crohn's and Colitis come in all different degrees of severity; also some people are born with the disease - whilst others can develop it pretty late in life! The younger you are, generally the worse it is and it can develop over time! It is mostly a case of getting the crohn's (or colitis) under control with the right medical combination, but medications are a hit and miss as what works for some, won't work for others. If they can limit the spread of the disease (although no cure) they can effectively put people into remission. Then there is the fact that sadly many people an estimated 82% (based on a recent study) are misdiagnosed and therefore the condition has had time to become severe before treatment started. In my case, I was only diagnosed as it became severe and I was no longer able to eat anything without bringing it up, no longer able to stand and my weight plummeted by nearly 5 stone!!! If the correct diagnosis and treatment wasn't found for me, then the outcome may have been a different story! What is more likely to pose a risk to your life is the surgery, side effect illnesses caused by IBD and the medications. Surgery never comes without a high risk of implications; although some keyhole surgery is done on people with IBD, it is often not the case and major surgery is required. People with IBD have an increased chance of colonic cancer, with the risk increasing the longer you have the disease (this is a disease with no cure, so as you get older your risk increases)! I did read somewhere in a medical study that per every year you live since developing IBD you can increase the risk of developing colonic cancer by up to 1.5% Can't remember where I read that though. The medications can cause many side affects including increased risk of cancer (yes cancer again) I know most immunosuppresents cause a heightened risk of developing skin cancer, so we are told to Avoid direct sunlight!!! Crohn's and colitis can cause many side effect illnesses, in my case I have enough different illnesses going on, which may or may not be linked - further studies and investigations show that there is more of a chance of my conditions being linked then previously thought!!! It can cause liver issues, eye issues, joint issues, malnutrition - the list is endless. Remember too that due to severe destruction caused to the entire digestive tract, that food absorption will be caused - many with IBD require B12 and Iron infusions as a result. SO does it alter your life expectancy - no, not really as a condition in it's own rights... but it can alter everything else and everything which stems from having this illness can possibly alter life expectancy.
- (Question 8) Another question: what causes the stomach to swell?
- Most commonly it is caused by severe bloating which is pretty common with IBD - it is also common with IBS too... (just one of a few symptoms we share in common)... in my case, you can also sometimes blame the stricture... due to my Stricture substance doesn't tend to pass through properly; therefore resulting in swelling and/or constipation.... . Some people if they have one area where it is damage in the intestine, only that part of the stomach will swell which looks a bit odd, with me it's the whole belly that swells, to the point I like like I'm 6 months gone!!!
- (Question 9) would it stop u having children if u ever wanted any ? or would carrying a baby cause problems or irritate the I b d ? or would sex hurt or be uncomfortable ?
- Yes, IBD can affect the sex life! For some women it can cause pain or discomfort during sex. The following is from a website of why there may be issues caused by IBD during sex.
pain in the area between the vagina and rectum (perineal area)
rectal pain
feeling like they have to have a bowel movement
embarrassment because of having a stoma
fear of passing gas or stool- The probability of passing IBD on if only one parent has IBD is 10% and 35% if both parents have IBD... I have heard a lot of people say that their symptoms of IBD became much worse after giving birth and some have said that it can put their IBD into remission...
- (Question 10) What's your fave flavoured milkshake u have? (if any) x
- I assume you mean the Liquidfeeds? 1500 calories in a bottle! Not exactly milkshake, it's a meal substitute - hard to explain what they are like though without using the words "like a milkshake" I'm liking the orange one - now that's a flavour you don't get milkshake in!!!
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