# My Story



## KellyJ (May 3, 2012)

Hello!I am new to this forum and just thought I would share my story with you all to let others know that they are not alone, to get support and maybe some advice from other people about managing my IBS and coping with living with it and also just to share what I have been through with people who will understand exactly how I am feeling.It all started last year in mid June, on my birthday actually. I had been feeling a bit off all day and when dinner time came i wasn't hungry (which is very unlike me). I managed to eat a little bit of food and then after dinner i was in severe pain. After a few hours of being in pain my mum took me to the hospital. The doctors were really no help at all, the best they could do was a heat pack on my stomach and then sent me home and told me to go and see my GP. So the next day I went and saw my GP and he decided to send me to a general surgeon to get some tests done (I had already had my appendix out and had also been testes for Coeliac disease as my mum has it. Tests came back negative however i get sick every time i eat wheat or gluten even in small amounts, so i just eat like a Coeliac now anyway). So off to the general surgeon I went. Much to my disgust he wanted me to have a colonoscopy and a gastroscopy. A few days after my tests I went back to the surgeon and he diagnosed me with Chrohn's disease, prescribed me some medication and sent me away. After 4 weeks on the meds i was not getting any better at all so we went back to see him. He simply said that these things take time so pretty much go home and wait it out. Well after another 2 weeks i still wasn't any better so mum took me back to the hospital. This time I got a really lovely doctor who put me on a drip gave me some pain meds and took me for an x-ray to make sure there was no blockage, which there wasn't. She also took some blood tests but they showed nothing. She eventually gave up and decided to call a physician and admitted me to hospital. The next day the physician came and saw me and discovered that I wasn't on steroids which is why i wasn't getting better because apparently to kick this thing in the head you need a good dose of steroids. I ended up being in hospital for 2 weeks on a high dose of steroids and on a drip and also pain medication. After the 2 weeks I was feeling a lot better so i got to go home YAY!! After another few weeks of being at home i started to go down hill. So I went to see my GP and he admitted me straight back into hospital. This time I was only on oral meds and everything that they were doing for me, i could have been doing at home. After a week of being in hospital the physician wanted to put me through another colonoscopy but i didn't want to do it because the first one was very traumatic and my parents couldn't see the reasoning behind it when he could have gone to other measures first like changing my medication and seeing if that worked. Also by this time I had lost quite a bit of weight, probably about 10-15kg. So after being so fed up my parents pushed for us to go and see a gastroenterologist (there is no gastroenterologist where i live so we had to travel to our nearest state capital city). We were booked in for 2 days time so i was discharged from hospital and went home to back my bags as we had a flight for the next day. Once we got to the gastroenterologist he took one look at my previous colonoscopy pictures and said no you do not have Crohn's disease, you bowel isn't inflamed enough for that. Unfortunately he had to do another colonoscopy to see what actually was the problem. He found that I had a bowel infection that had been going on for some time and also a very low immune system. So he prescribed antibiotics and told my GP to keep an eye on my immune levels and said if i didn't get better not to come back because he didn't have any answers.After being on the antibiotics for a while i felt great! I thought i was finally getting back to my old self (also at this point i had lost around 25kg in total, so i went from being 85kg to 60kg which is what i still am now). After a few months of checking and recording my immune levels they were no better so my GP decided to send me to an immunologist. The immunologist did some blood tests and some other allergy testing and told me to go and have a vaccine to prevent any lung infections and after the vaccine go and get a blood test. The blood test revealed that my levels had gone up substantially so i definitely didn't have an immune disorder he also checked for every possible disease and other thing that could be wrong with me and they all came back negative. So in the end he just told me that I have medically diagnosed irritable bowel syndrome.So now here I am really. I have mainly been battling with IBS-D but just this week i have had a bout of severe constipation. It has currently been 13 days since i have had a BM which is very unlike me. At this point I am starting to get very down about it all. I already suffer with depression and have IBS really isn't helping. I see the way that this whole ordeal has been a struggle for my family and i feel guilty for what i have put them through. I also feel like i am always letting my friends down by saying i will do things and then not turning up because i am too sick or too tired. I tried to hold down a job for a few months but i was calling in sick way too much and i was just so exhausted and i had no time for anything else and that is no way to live so i left my job. I have tried getting centrelink payments but i am not eligible. So right now i am a nearly 20 year old who still lives at home and is dependant on her parents for everything. It's not really my ideal way of living but i guess this is just how it's going to be for a while and i am just going to have to learn how to cope with living with this horrible disease.I would love to hear your comments, thoughts, advice, support or anything!


----------



## Dodai (Mar 30, 2012)

Hi Kelly,My heart goes out to you. My symptoms are different, but I too from the IBS have no social life and I'm too sick to work. Well, first of all it's been 13 days since you've had a bowel movement. I don't know the answer or any suggestions for that. Maybe someone here on this site could help you with that. I know there are laxatives, but I don't want to give you the wrong advice.When you are feeling better, I would suggest that if you can, try and go out with friends just for a little bit if you can. It might help you with your depression; which can help the IBS. Also have you tried any probiotics? Some people believe that after taking an antibiotic that you should take a probiotic after to keep everything balanced. And, probiotics have been useful for people with IBS.Keep a diary of what you eat. Everyone with IBS is different of what foods that we can tolerate Some foods can really help you, where certain foods can hurt you. Some doctors believe, I think through reasearch that an antidepressant actually helps people not only for depression, but actually improves what is going on with the intestinal problem. There are also meds like Bentyl, Hyomax and Belladonna with Phenobarbital that have helped some people.Also some herbal teas are good for some people like peppermint, chamomile, ginger and fennel tea are just a few. There are also natural remedies that are too long to list.With this illness we all have to be our own advocate and find what is right to help us. A lot of trial and error with food, meds and natural remedies. Just keep researching. You will be suprised to see what you find out. Don't ever give up trying. And, I think it's a good sign that at times through the year you have felt great. Always keep the hope that you will get this under control. Try thinking positive and reach out as much as you can for support. Hope I hear from you soon that you are feeling better!


----------



## KellyJ (May 3, 2012)

Thanks for your reply.I have tried probiotics but i have heard that for some people they help and for others they make it worse, so i was taking them but didn't notice a real difference while i was on them. So since there was no improvement i stopped taking them as i don't see the point in swallowing another pill just for the sake of it when it isn't doing anything. My mother takes one everyday and they really help her but they don't have the same effect for me. We have been keeping a diary of what i eat for some time now. I actually go and see a dietician regularly and she has me on the FODMAP diet. So far it has helped but i still have pain and quite a few bowel problems but it has made a little bit of difference. I am up to the stage of introducing foods and testing whether I have a reaction to them or not but unfortunately i haven't actually started yet as i have been waiting until i feel a bit better so i know whether my pain is from the new food that has been introduced or whether it is caused by something else. I am currently on endep for my depression and it also helps me get a full nights sleep which is really good because before that i would wake up multiple times through the night and it would take me hours to get to sleep. Now i go to sleep within half an hour of my head hitting the pillow. The next step will be if i am still feeling rather depressed my GP will up the dosage as i am on quite a small dose at the moment. I do drink peppermint tea quite a bit. I find sometimes it helps and sometimes it doesn't. So i always try it after i have tried everything else and nothing works.Oh and good news! I passed a BM last night and have passed some more today. So it's all slowly but surely coming out which is such a relief as i am going on a train tomorrow morning to go and visit my grandparents so i am very very glad about that.I must say i have been blessed with an incredible GP who will do just about anything he can to help me get better. If he is fully booked and I want an appointment i just have to get the receptionist to go and tell him that i need to see him and he always fits me in. He also admits when he doesn't know what to do and hands it over to someone who does. At the moment he is just working towards getting me settled as there is no known cure for IBS he has told me that we just have to deal with the symptoms as they come and that is exactly what he does. I am going back to see him today as i had an x-ray the other day to make sure there was no blockage so hopefully he will be happy with my progress!Thank you so much for replying. It's great having people out there willing to support you and give their advice and just generally be there for you. My friends and family do try really hard to understand but there is nothing like the support of people who are going through the exact same thing as you. I am so glad that i found the forum!


----------



## Dodai (Mar 30, 2012)

Hi Kelly, I'm so glad that you're feeling better. You have a great support system with your family, friends and Doctor. I feel that it's very important for people with IBS because most people don't realize the suffering that we go through with this illness. It's not peoples fault (except certain Doctors) because there really not much awareness about IBS and what the patients go through. So it's great to talk to people with this condition. I only talk to my close family and friends about it. Everyone else I know just think I'm not being social or watever because I just can't explain how debilitating this illness is to me to everyone. I even had some acquaintances say to me "You're still sick, how can you always be sick and why can't you get better". I just don't have it in me to explain this to every single person I know.I tried cheap probiotics and expensive ones and I'm not sure if it helped me. I do believe in them. I am going to a nutritionist this month so I am waiting to see what probiotic that he would suggest for me.I like the peppermint, chamomile and ginter tea's taste. Hate the fennell tea which is suppose to work the best for me, but I find it hard to drink. IBS, I find is a lonely illness because it's hard to talk to people who don't have it. I even seen people on TV make fun of this illness which is quite sad.Well, back to the positive. Once again I'm so glad that you're feeling better. So much better that your going to visit your grandparents, Yay! So happy for you and have a great time.


----------

