A long road to diagnosis

[C_Barbie]

My story is one that has taken me a long time to make sense of.

I started showing signs of digestive issues years ago. Over the last two years I've lost weight on and off. I have usually been a thin girl but in October of 2011 I was down to 102 lbs. I was eating all the time. I found out I had mono around November and quit my nannying job so I could try to keep up with school. My body just wasn't functioning. It became harder to concentrate. My energy level was down to nothing nearly every day no matter what I would eat or drink. Over the next few months I was constantly in pain all over my body. Everything seemed to be going wrong. I eventually went to the ER in the spring of 12. I had intense pain which we thought was my appendix. They tested me for that but found it was functioning just fine. They decided to keep me in observation and on dilaudid. I wasn't allowed to eat but the pain persisted. They then had a gi consult come in for a colonoscopy. I was scared shitless (literally) but when I woke up the doctor said nothing was wrong. He then told my mother I should be in a psych unit because this was probably anxiety. UMMM EXCUSE ME. You had a conversation with my ass to determine this?
....
Anyway, this guy sent me home with a script for dilaudid. I kept trying to eat and still the pain would never go away. Sometimes it would fade. But as the time went on the pain started spreading.
I was still searching for a reason for the pain and went to a surgical consult with my OB/GYN when she said, "Oh your biopsy results from your colonoscopy were positive. Guess you don't need me!" I was stunned. The GI Doc hadn't even called. He had just written me off as an anxious 20 year old. So I went to the GI practice and saw another doc there who said that whatever I had was probably just me overreacting/being too sensitive to pain so again they gave me more dialudid. I was furious. Nothing was helping and if anything I felt worse.
Finally I spoke with my primary doctor who said I needed to go to MGH. So I went to Mass General GI Associates. I met Dr. Yajnik. He and his staff were completely different to the old doctors. They actually cared and wanted to find the answer to what was going on. As we went through my medical history he said my symptoms are crohns like and that I should have another colonoscopy.

A few days later I went in for the colonoscopy. I wasn't that nervous as I had already had one. However, I woke up part way through this one and felt like my insides were on fire/being stabbed. I begged them to stop.

When I woke up they said it was for sure crohns and that the other doctor was crazy because it was everywhere.
I was so angry, hurt, confused, and at the same time relieved to know it wasn't in my head.

Then the long road of treatment started.
I'm currently on entocort 3x daily, cipro 500 x 2, bentyl, zofran, remicade and prednisone. It's not easy but it's getting easier to cope with.
It's been two months since I started treatment and during these last two months I've finally had a break from my depression. I think my body just needs to reset itself and try to get back into a healthy state.

 

[Angrybird]

Hello and welcome to the forum.

I am sorry you had to experience such poor medical 'care' from the prevous doc I am glad though that you were able to finally get to a good team and get a diagnosis. Is the tum now settling on these meds? Have you had any of your vitamin levels checked at all? If not it may be worth asking your to get these done - it is common for people with crohn's to have deficiences in this area.

There is a lot of helpful info and support here so do have a good look around

AB
xx

 

[Astra]

Hiya C Barbie
and welcome

You poor thing! But, been there, done that! I was nearly carted off to the Loony Bin too.
finally a diagnosis, and a good meds regime, you'll soon be feeling champion!
We're all here for you, so any questions, just shout!
lotsa luv
Joan xxx

 

[David]

Hi there and welcome

Wow, I'm so sorry to hear what you've been going through. You poor thing! I can't believe how those doctors treated you but thank goodness for your new ones!

Have your new doctors by chance tested you for vitamin D and vitamin B12 deficiencies? They are quite common in people with Crohn's disease and can lead to feelings of depression. Of course, I'd feel quite depressed if I went through what you did. Regardless, getting those vitamin levels tested is a good idea.

All my best to you!

 

[C_Barbie]

Hi everyone. Thank you for the responses! I have had some vitamin levels checked and I was low on B vitamins and D. I should probably have them checked again when I go in for my next remicade appointment this week.

 

[David]

Have you been supplementing them? And yes, get them rechecked. The more data you get the sooner you'll be able to determine if your supplements are a sufficient dose or if you need to change the delivery mechanism. You can also correlate it with symptoms which can be really useful.

 

[C_Barbie]

I've just been taking a b vitamin complex with D. I'm waiting to go back in and for some other lab results to come back. All of my meds seem to be giving me side effects.