AD | Hello my lovelies! If you follow me on my Tumblr account then you may remember a little while ago I asked you all to send in your embarrassing questions that you're not brave enough to ask your nurse or doctros so I could ask my gastrologist nurse for you to feature in an article - well, here they are all answered!
| I've just been diagnosed with Crohns Disease, Ulcerative Colitis or another IBD. What Happens Next? | The first thing that happens is you'll be sent for some blood tests, they're a really important thing to have, especially when you've got an IBD illness as they keep track of how you're doing even when you're feeling okay, and you also need to do a poo sample to make sure there are no infections in your body at all. You won't always need to have a colonoscopy camera done right away but it is advised that you have a colonoscopy camera done as soon as possible as the doctors, nurses and yourself know how your condition is in- you will need these a couple of times every few years, but not just throughout the year but throughout your life in general to make sure everything is going ok. Some people are put on to steroids right away but, not all people as it depends on how far your flare-up is going and whether you're ina flare up at all. However you will be put on a treatment that is right for you - the treatment will depend on how you're doing and anything that you're allergic to. You will get information on whatever illness you have got and you will be given contact details for your IBD team. If you are not given information about it make sure you ask your local hospital about it. Also, make sure you do your own research and don't just go off leaflets the doctors give you. Don't just Google everything right away, browse around and talk to other sufferers rather than Google because a lot of stuff on Google is from people who are not sufferers they are people who have just learned about it. So doing your own research is a very important thing.
| Will I need to change my diet or what's the best diet for me? | I was a really, really, really big meat eater for years. I was diagnosed with Ulcerative Colitis when I was twelve years old but I had been suffering from eight years old and I constantly ate meat. However, four years ago I decided to become a vegetarian and then a vegan. That was a process that happened really over four years and you should never drastically change diet because that can be not good, not just for your gut but for your whole body so changing your diet is something that you really need to talk to your doctor about. If you do change your diet, cutting things out like dairy, meat or fish is sometimes one of the best things for you because of your gut kind of heals itself. I know a lot of people drink celery juice or just fresh juices in general if they can't stomach fruit or water. I have really bad trouble drinking plain water from a tap or even bottled water as it really gives me an upset stomach. So I like fresh-cut fruit in water that I put in a jug in the fridge and that really helps me stay hydrated personally. However, it all depends on you and you need to speak to your IBD nurse or your doctor.
| What is the best treatment for me? | The best treatment really depends on each person. I have been on a number of treatments personally over the years and thankfully two years ago I decided I was going to come off treatment altogether. I was on daily chemotherapy which was called Mercaptopurine for sixteen or seventeen years and the long term side effects of Mercaptopurine because its a cancer drug is you get leukaemia, and because I was on it for so long I didn't want to be on it anymore. I was put on that after trying a number of other drugs because nothing was working for me and the side effects were really bad. So I was then put on Mercaptopurine and it was the best treatment for me at the time but long term it wasn't. Personally now I am on CBD and THC oil which I buy myself, however, I have seen sent some items to try in the past from different brands. Although my doctors know that I am on it and know everything about it and have seen it in the bottle, it's not something that they can pay for on the NHS. It cant be from the NHS its got to be paid for with my own money. Here is a list of the CBD treatments I have been on HERE and HERE.
| I've had an "accident" in the clinic. What happens? |
When I was talking to my IBD nurse and actually brought up this question. He actually said he doesn't know what would happen - which really scared me. Being in a flare-up and being at a clinic appointment anyway can be really, really scary in case, well bluntly and too much information but in case you do poo yourself in front of people because that's not something that you want to happen. He said that he didn't know which worries me so I am going to look into that more and I'm going to bring that up at the next NHS meeting that I go to, to see if anyone has had that problem or even worries about that. You can check out this link which is all about what to carry in an emergency flare-up kit bag that you can put together yourself at home for really cheap.
| Will I need an ostomy bag or will I need treatment? | It all depends on the person. People don't get thrown on the bags. A lot of sufferers that have just been diagnosed think that because of things that they have read online that they just get thrown on the bag to get them out of treatment. Thats not always the case. You can have treatment, you can be given a number of treatments. It really depends on you and your doctor and IBD nurse, and the local hospital that you are under will work with you.
| I'm due to have my first smear test, will it hurt? | I personally and my nurse who I was speaking to, to work with on this article can't stress enough how important having a smear test is especially when you're a sufferer. It won't hurt, it's over within a few seconds and it's really really easy. I know that its really scary but I'm going to leave Zoella's link here that you can watch on Youtube on her page that kind of explains everything about a smear test. A smear test whether you're a sufferer or not is kind of the same, it won't change in any way. You can still have treatment if you're going to have a smear test, you don't need to stop treatment at all. You don't need to take anything to have a smear test. All you need to do is a book in. You can have a smear test if you have a bag, if you're a smoker, if you're on treatment, anything like that. You can be referred by an IBD nurse, you just need to phone up your local IBD nurse and say 'you're due for a smear test and where can you go for one?' because they do have a clinic at the hospital where you can have your smear test rather than have it at your doctors if that's what you prefer. I personally have my smear test in my doctors because of its closer and its easier for me. However, I am thinking of changing that and going to my local hospital for my next smear test when I am due it because that clinic itself my own mother works in so its kind of having that comfort there. I have had a couple of smear tests now in my life and they are over within seconds. They are really easy but Zoellas video kind of goes into more detail about that. So I think its really important that any women no matter what age go for a smear test or even men too so that you know how to support your partners or your sisters or anyone like that.
| I'm a virgin but I want to have sex with my partner, am I able to do so? | Yes. Thats the straight-up simple answer yes you can. I wouldn't suggest having sex when you're on a flare up because, well you don't really want to be intimate when you're in pain and your partner should respect that. If they don't respect that then don't be with them, plain and simple. You shouldn't change your sex life because you've now been diagnosed. You should talk to your nurse about your sex life. I personally am open about my sex life with my doctors and nurses because it makes things easier. You don't have to be. You can keep things private. You can make an appointment and just say that you want an extended appointment instead of just a five or ten-minute appointment. They can give you half an hour to forty-five minutes, even hour appointments where you can just go in and explain any worries that you've got. But no you don't need to change your sex life at all and sex will not hurt.
| I've been diagnosed and I'm a gay man. Does this mean that I can't have sex anymore? | No. You do need however to tell your IBD nurse and your doctor and even my IBD nurse have said to tell them. They will understand, they won't judge you. You know they've seen worse than you going in and saying "I'm gay and I've got a partner and I want to be intimate with him". Thats not going to change in any way. They will just advise you on different things really. You know, don't be intimate when you're in a flare up as I said. But they can really explain it more and I'm not a gay man myself obviously so I don't really know how to go about that.
| Will my mental health be affected? | This is a really really tricky question because the short answer is yes. Your mental health will suffer now that you have been diagnosed. It's not always a bad thing. It just means that when you are in a flare-up or when you are a bit fed up, you will have bad days really and you'll probably have worse days than other people. That doesn't mean that it's going to be a big mental health issue for you, It just means that your mental health is going to suffer a little bit rather than what it was in the past. I think for me my mental health suffered more before I was diagnosed because I was in this flare-up that I was in for going on four or five years and I didn't know what was happening to me. I was scared. I was told that it was just a phase. They thought that I was anorexic. They thought I was bulimic. They went through a lot of things before they diagnosed me and I just thought "what is wrong with me?". That's all I wanted to know, What is wrong with me? and that affected my mental health more than anything. As soon as i got diagnosed and I knew what was happening to me and my body, then it was great. I knew what was going to happen, I know my bad days, I know my good days. I think it is good to keep a tracker of your bad and good days. I know I have really down mental health days when I'm due on a period but I think that is just a woman thing. I think a lot of women do get that. But the short answer is yes. Your mental health is going to be affected, but it doesn't mean that you're going to be depressed or anxious all of the time. It just means that when you are suffering you need the support of the people around you rather than suffering in silence because when you are on a flare-up it can be a really, really low time.
| I've found out I'm pregnant! Do I need to stop my treatment? | You don't need to stop your treatment right away. If you've found out that you are pregnant or you think you're pregnant then you need to book an appointment with your IBD nurse or your doctor. Preferably your nurse more because they can refer you quicker. You'll get an appointment quicker with an IBD nurse than you will with your doctor with the way the NHS is at the moment. As for treatment, you don't need to stop it but you would need to stop it from the second trimester onwards. However, that really depends on what treatment you are on. Some people can stay on treatment right the way through. I know personally myself I'm not going to get pregnant again in the future but that's in other posts and things. But people like myself who don't take anything medical and are just on CBD or THC, my nurse has said he would recommend cutting down on it but not stopping it completely because once your body is used to taking that and it helping you, you don't want to stop it in case you end up in a flare-up. Because I'm going to guess that being in a flare-up while pregnant is not going to be fun. But again talk to your IBD Nurse. Get an appointment and just get in there and tell them. They will also arrange things for you, like they will get you into a referral clinic a lot quicker which is usually at the same hospital or their sister hospital. I know in Liverpool there is a hospital called The Women's Hospital that really tackles anything with labour for women. So we have our own separate hospital for that. However, in the hospital that I am under, they have a labour ward and a pregnancy ward and everything like that. The hospital that I am under now is actually the hospital i was born in and that my brother was born in. So its great that some hospitals do have that all in the one hospital and you don't need to go far for it or across a city or a town. But again talk with your IBD nurse. You don't need to stop any treatment drastically, but eventually, they will probably stop your treatment. But don't take my advice on that talk to your IDB nurse.
| I'm pregnant! Am I able to have a natural labour? Am I able to have a hypnobirthing labour? | Yes to both. Crohns and Colitis or any other IBD doesnt really affect your pregnancy really. It really depends on if you have a colostomy bag or what your treatment is how your pregnancy will go. Again you really need to talk to your IBD nurse and other people you have been referred to at the hospital. You really just need to have a birth plan in place so that you know what's going to happen and you have no stress.
With love, Alisha Valerie. x