When will it get better

[jdo]

Hi

I have read so many of your stories so I decided I should share mine

I'm actually sitting in a hospital bed now, just have been through my 19th operation in 16 months on a perianal abscess which is now a fistula
, yes you heard right 19 operation and that's not the worst of it.

I'm now a 29 year old female
I have always had gut problems as a young girl
I remember mum taking me to multiple doctors to see what was wrong with me but I was never diagnosed with anything.
Years went on and I just dealt with it, constant bowl issues and a painful bloating stomach until I hit 23 things changed.
I started going to the bathroom up to 15 times a day bleeding so badly from my bowel diarrhoea constantly, I didn't want to talk about it because who would want to discuss that, I was embarrassed.
It got so bad that in one week I lost 10kg and my mum said to me what's wrong, I took her to the bathroom and showed her the toilet bowl full of blood, she took me to emergency,
Eventually after multiple admissions into emergency I was finally diagnosed with ulcerative colitis,
They started treating me with 6mp and iv steriods, it took a year being re-admitted and trying different drugs but eventually after 18 months I went into remission, there is alot more to stay in the years to come but the last 16 months to this day is the hardest part of my disease to date.

I fell pregnant 18 months ago, was not planned as I my partner and I have extremely busy lives and had alot on the horizon,
I was told in my case getting pregnant would be a struggle anyway, I was so shocked when the doctor told me, devastating in fact but my partner said we can do this and we made the decision to have a little family.
At this point I was the healthiest I has ever been super fit off all medication, full of energy, loving life and most importantly in remission.
It got to 14 weeks into the pregnancy and I started getting the emence pain in my bottom, I let in got on for a week til one day I couldn't even get out of my car and the pain was extreme.
I called my team of doctor's and was admitted into hospital.
The gave me so much pain relief , morphine, endone, among other things but nothing did numb the pain.
They started treating my for my UC , iv steriods, infliximab, I had a blood transfusion, iron infusion
All while pregnant.
After a week they told me I could go home, I hated being in hospital, I told them I still had a sore bottom but they sent me home on oral steriods and pain relief,
That night I had a fever exceeding 42'c I was shaking and sweating , I couldn't sleep.
The next day mum took me to the Gp and they rushed me by ambulance to the hospital again

I arrived and they dosed me with morphine, I was screaming in pain, it hit midnight and no amount of morphine could take the pain away so they decided to take me to theater, letting me know the risks while I was pregnant, I needed help someway, somehow.
After 4 hours I arrived back to my room, where they told me they found a abscess in my bottom and had drained 500mls of pus and blood from it
I spent 5 weeks in hospital then operation after operation with no sign of it getting any better.
I had lost 6kg while pregnant, I couldn't eat drink, I was so high on pain relief and I still was in so much pain everyday.
I started to give up
17weeks pregnant and I was told did I want to terminate my pregnancy, I was so sick it was so risky to the baby, there where lots that could go wrong and I could lose the baby anyway.

NO WAY
I had already made it through this
I knew I was strong and my baby would be.

Another 2 weeks went by surgery after surgery, by 19 weeks I was so off my face on drugs and I couldn't even go to the toilet without being jabbed with morphine to get through it.
It was truly horrific.

I went home.
I was still unwell but I lived on pain killers and tried to start eating as much as I could for my baby,
23 weeks pregnant I got myself off the pain killer cause I didn't want my baby to be addicted when born as I was told I could go into labour at any stage.
I had an amazing doctor who coached me the whole way, telling me we would try get the pregnancy as far through as we can before she would have to deliver as I would not be having a natural birth as I hoped.

I made it to 33.weeks and 4 days, then my little Evie was delivered.
After 16 operations a tonne of steriods, infliximab, morphine and other pain relief, she was coming into this world no matter what.
She is now almost 10months old and she is perfect.
Development is normal no problems or issues with her at all.

But my chronic illness still continues on, they now think I have Crohn's, I cant get rid of this fistula as I keep having recurring abscesses and it wont heal until my Crohn's gets into remission,
I am back on 6mp, having infliximab and have been through alot more operations.
I am going to the toilet up to 15 times a day with lots of blood and mucus, I am always in pain and its so hard cause no one understands what im going through.
They always say , but you looks so well.
I hate this, I avoid telling people because they dont understand but I thought someone here might.

I definitely have low days and think why me and is this ever going to get better, it ruins your life to a point and no one understands.

I cant go anywhere without there being a toilet as there are times I get no warning before my bowels bleed and then its everywhere.
How embarassing.
I constantly where pads for my drains and setons that run through cavities in my bottom.

I have so much more to say
Maybe I should write a book,

Love hearing that im not alone so I just thought I would share part of my story.

Thanks
JDO X

 

[Kevo]

Firstly, I am sorry to hear about all of your troubles, but very glad you made it through child birth!

How long have you been on the Remicade now? If it's not working, as that's sometimes the case on the second time around, you could try Humira. There are others on the market now as well, you should have a talk with your doctor about it.

Hang in there! I was in remission for 6 years, and now, I've been in constant flair/feeling terrible for 6 years. I'm waiting to feel better as well.

 

[jdo]

Hi Kevo

Thanks
6mp has worked for me in the past but doesn't seem to be at the moment with the fistula.
I will talk to the doctor's about that drug though
thanks

I am sorry to hear you are sick again
It's such a hard illness to have and go though

I am now looking at starting the scd diet as I have read success stories with that diet.

Has anyone else?

 

[fuzzy butterfly]

:welcome: aw you really have had a hard time there hun, i had tears in my eyes reading your story.. so glad your little girl is well,she is a real trouper just like her mum. i so hope you get into remission very very soon and start to feel so much better , sending my love and best wishes, remember we are here if you need us :ghug: :rosette2:

 

[Kevo]

jdo, yes, I've done the SCD diet. Although I had to tweak it, as some things on the list still made me feel bad. It was a process trying to figure out what I could/couldn't eat without me feeling bad, but the SCD diet definitely helped me figure it out. It's worth a try if nothing else is working, and figure out what works for you.

 

[justasgood]

You are the bravest person and should be so proud of yourself.
Congratulations on the birth of your beautiful daughter. She is already a very lucky little girl.

Everyone case is so different Im not sure what to offer but Humeira has worked better than Infliximab in my case. I only have very little intestine left after a lot of surgery and I leak abdominal fluid through vaginal fistulas and understand how much it hurts your sense of self and dignity at times. Some days its so much whole pads are saturated in seconds. I keep spare pants and pads with me always as Im working and maintaining from the outside a normal life. I have been told that my fertility is at 5% now due to all the scarring, surgery and implications. But I believe I will have children some day.

Your story is a reminder to appreciate the "now" while we are healthy and well and how quickly it can all change. For those of us who are out of hospital we can offer you support and the belief that you will look back on this someday as though it happened to someone else.
You are human and therefore sometimes need someone to be strong for you so we can be that person. Even if you post a lot everyday someone will always reply so you will know that you are definitely not alone.