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Newly Diagnosed and Feeling alone

Hi my name is Eleanor or Ellie and I was diagnosed with Crohn's last week. My story is a bit of a long one so I apologise now.

In February 2015, 2 days before I was due to go on holiday to New York, I came down with what I thought was a stomach bug. 2 weeks and a ruined holiday later I went to the doctor to get some help. She said it was a gut infection, sent me off with tablets and that was it. But I continued to visit the toilet several times a day.

In March I visited again. She said it was temporary lactose intolerance and to cut it out for a while, if it hadn't cleared up in a month I was to return. Not wanting to be a pain I continued to struggle through daily life (I'm a teacher and regular bathroom breaks aren't really available!).

In April I returned again and she suggested it may be a gluten intolerance and she sent off samples of blood and faeces. I received a phone call saying they had missed some tests and they needed doing again. Cue another month of waiting.

In May she said she was referring me to the hospital for a colonoscopy and in June I was given an appointment for September. And then I went and got a job in Spain...

I had previously lived in Spain for a year and when last there they diagnosed me with gall stones and operated immediately. At this point, whilst I was having to run to the toilet 10 times a day that was my only symptom and I figured the Nhs had taken so long to even get to this point I might as well get sorted in Spain.... but when I moved my symptoms changed. Blook appeared in my stool and I had severe cramps but I was in Spain now and had cancelled the test in England... Stupid I know.

My Spanish is ok but it was difficult and I couldn't get to a doctor until October. When I told him of my symptoms he immediately referred me urgently and I had an appointment with the specialist in November.

I saw the specialist who said it sounded like ulcerative colitis and was sending me for a colonoscopy. I got the choice of sedation and said yes. This meant the waiting time was more than doubled.

Fast forward past Christmas and my boyfriend becoming increasingly frustrated that when we went out I constantly needed the toilet and my sex drive was gone.

In January I hit rock bottom. I was in a constant state of pain. The blood was now a daily problem and I forgot what a normal bowel movement was like. I was fighting fevers regularly and I eventually admitted to my employer that I wasn't well.

On Friday 22nd January I went to the emergency room and was rushed through and immediately put on a drip and monitors. They did an ultrasound and found a great amount of inflammation. I was admitted and the week after I had test after test. Cat scans, ultrasounds, rectoscopy, colonoscopy, biopsies and blood tests. I was on constant tablets to take away the inflammation and I was put on prednisone. A week later they told me they had found nothing and I was devastated. Certain I was going to suffer like this the rest of my life with no answer. They put me on prednisone and metronidazole for after the hospital and I got better.

For 2 months I lived in bliss and then it started again. A parent at my school was a doctor at the hospital and contacted my doctor. He saw me in May and put me down for an urgent capsule endoscopy. I had it at the end of May and I spent the day wearing this contraption praying they found something...

And last week I was called in and they showed me all the ulcers in my small intestine and told me I had Crohn's disease. Like I said my Spanish is good but I didn't understand a lot of what was said and I was shocked that they had found something and happy and upset at the same time. All I know is they've taken blood the last two weeks and my life is now a mixture of doctors appointments and tablets.

Currently I am on pentasa 3 times a day, intestifalk or I think it's known as budenofalk 3 times a day and I'm on a calcium tablet once a day. This Tuesday they are taking more blood, setting up a vaccination timetable and doing allergy tests.

I see my consultant again in July.

So I've joined for several reasons. One I'm hoping people might be able to help why I'm on these tablets and why they're doing all these tests. They mentioned my immune system I'm guessing it's to do with that. But any help would be appreciated.

I have my boyfriend in spain and friends but that's it. He's struggling. Saying how unfair it is for him and saying he doesn't know how to cope with it for life and I'm struggling to support him as I feel completely lost.

I must hear... "at least you know what it is" or "at least it's not worse" 10 times a day or more and I am struggling to tune out these people. I get I'm lucky but I don't feel it right now...

My diet had suffered for months. I associate food with needing the toilet so I currently eat twice a day in the hopes I can get to a toilet after. And now being told I need to eat small meals, 5 times a day I'm struggling.

I'm so scared to go out. I'm scared there will be no toilet or my Spanish will fail and I won't get to one in time because I can't explain my condition to them.

I guess most of all I need a friend. Someone who gets it and who has been through it and I know it's a big ask. I get that other people around the world are dealing with much worse things right now and that makes me feel so guilty that I just push my feelings down and pretend life is great.... but I don't feel it is. I don't understand how one day I was a healthy person and the next I have this life long problem.

Sorry to ramble and rant and thank you in advance.
 
Welcome Ellie, I am sorry to hear what you are going through. There are lots of people here to help support you and any questions you may have. Please don't push your feelings down, crohns is not easy to deal with but it also won't go away. I was diagnosed in February 16 and the disease definitely affects my mental health immensely. Sometimes I have to take time off work and I feel like a fraud but you have to remember this is more than just a tummy ache or diarreha as some people might try to tell you. You definitely have to be your own advocate when you are ill as it is an invisible illness and people find it hard to understand. I would recommend looking at the crohns and colitis org website they have many booklets that helped me to understand my feelings are valid, they also have leaflets you can show your friends/ family and employers if you wish which can help them to understand. Also if you join the organisation you can get a can't wait card which can help you to explain that you need to find a bathroom urgently and people can allow you to use non public bathrooms such as at a gas station or something. They also come in different languages. I hope that the medicine helps you, I am on prednisone, pentasa and azathioprine. With the prednisone they might tell you to reduce the dosage gradually. Don't be afraid to tell them if your symptoms come back when you go lower. I have tried coming off them several times and the symptoms just get worse. Honestly I could ramble on for hours but every persons disease is different. I'm glad you have found these forums as there are thousands of examples and answers for all the questions you can ask.
 
Welcome. I sorry for all you have been through. It is probably Budesonide is one of the pills you are on. All of the pills together are to get you in remission. Once the disease is in better control,they will slowly wean you off Budesonide. You will need to stay on some regiment of medicines for the rest of your life because there is no cure for it. You have stumbled upon a great support group. Don't ever hesitate to come in here to ask questions,get support or just vent. Keep us informed on how you are doing.
 
Dont feel the need to say you are lucky. Sure there are much worse illnesses but most people have none, and ibd tends to turn up in the prime of life. You aren't lucky, but you are you and we all just have to get used to hand we've been dealt.

I cant give any help with the boyfriend situation, but i dont think you should feel any guilt, his strain cant compare to your daily experience and uncertain future. I too live with my partner and feel bad that this past year I've become tired, neurotic over food, talk constantly about illness, cant go out and have fun, no sex drive and really uncharacteristically irritable. It is a hard thing on relationships, no-one dreams of dating a diseased bore so its hard for them too. But just wait until the meds work and the issues will dissipate - im now out and about for the most part and if the person is worth it they will have stuck with you during it.

In terms of the vaccines they do tests there in case you ever need immunosuppressants, because these can remove vaccine protection and leave you open to infections. Nothing to really worry about compared to the crohns.

Id also say sorry you had such a long run of it, it seems part of the course that diagnosis can take easily over a year. There are so many similar presenting illnesses.

Budenofalk, pentasa and adcal'3 seem to be the main first treatment, i got the same and it worked very well for me. You should feel great in a month or so. Im nearly off it and though i dont think im in remission, its helped a lot.

Keep your head up, you have no idea if you might be lucky with your version yet!

Ps see if you can get budesonide over budenofalk, you only have to take the pills in the morning, it works just as well and doesnt contain lactose, which can cause discomfort in some.
 

Lady Organic

Moderator
Staff member
Hi Ellie,
and welcome to the forum.
The medication you are on are first line treatment for crohn's disease. If you reach remission on this mix, in a little while the dr will most likey remove the budesonide (cortico-steroids that help reduce the inflammation) and then will propose to remain on the other tablets to maintain the remission (healthy status). If you return into a flare (sick), other medication (stronger) do exist as well.

You mention: '' I have my boyfriend in spain. He's struggling. Saying how unfair it is for him and saying he doesn't know how to cope with it for life and I'm struggling to support him as I feel completely lost.''

This is no good, I must say. he is not supportive of your situation and adds stress on your shoulders. You should get support in difficult time from your loved ones, not that kind of attitude... A lot of people are loving and comprehensive in difficult times... This is what I wish for you :)

I am hoping you will find some support in the forum and feel less alone.

Good luck to you and let us know how it goes :)
 
You mention: '' I have my boyfriend in spain. He's struggling. Saying how unfair it is for him and saying he doesn't know how to cope with it for life and I'm struggling to support him as I feel completely lost.''

This is no good, I must say. he is not supportive of your situation and adds stress on your shoulders. You should get support in difficult time from your loved ones, not that kind of attitude... A lot of people are loving and comprehensive in difficult times... This is what I wish for you :)
I'm glad to hear you are making progress. Once you're able to find that right cocktail of medications, things will improve drastically. As Ron said, this will be a lifelong battle. However, huge strides have been made in the recent past that make treatment much better.

In regards to the portion of Lady Organic's post I have quoted; I completely agree with her. As someone halfway around the world, I obviously don't know everything about your boyfriend and your relationship. However, based on what you've said, I'd personally have to tell him bye. You don't need the stress of his attitude compiled with what you're already having to deal with through your disease. You deserve someone that will love and support you regardless of your health. I've been incredibly blessed through the support of my wife, and it truly is a game changer.
 
I'm glad to hear you are making progress. Once you're able to find that right cocktail of medications, things will improve drastically. As Ron said, this will be a lifelong battle. However, huge strides have been made in the recent past that make treatment much better.

In regards to the portion of Lady Organic's post I have quoted; I completely agree with her. As someone halfway around the world, I obviously don't know everything about your boyfriend and your relationship. However, based on what you've said, I'd personally have to tell him bye. You don't need the stress of his attitude compiled with what you're already having to deal with through your disease. You deserve someone that will love and support you regardless of your health. I've been incredibly blessed through the support of my wife, and it truly is a game changer.
Agree
 
Im going to disagree a bit, this can be very hard on your partner and they may say things that hurt and they wish they hadn't. Its a life change you both have to face in your own ways, if he doesn't come around then that's something, but as of now give him some time. You could also do without the stress of a breakup for the flare itself.

I just personally dont feel it right for people who dont know you or your relationship to give such drastic advice....
 
Welcome Ellie. I'm new here as well. I also have Crohn's disease of the small bowel. Mine was found using the pill camera too. Amazing we have technology to help us. Sounds like we're on similar meds too.
I hate to admit it but I've bought depend type underwear after messing my pants 4 times in a day. My husband was amazing though when he found me sobbing in the bathroom my own mess all down my legs. He convinced me that I was still the gorgeous 35 year old woman I am (his words) whether my underpants were Victoria's Secret or purple diapers. And you know what? After I got done laughing at myself the first time I wore one I realized how freeing it was to not have to knock folks over trying to get to a bathroom in time. You're beautiful and I bet your man will come around. Hugs,
 
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