Finally been diagnosed I know I am not going mad

[Latte]

Hi there

Newbie here

I am 38 years old and I live in North West England in the UK.

I am also an Aschkenazi Jew which I understand is important in the diagnosis of CD and I carry the Tay Sachs gene.

I currently have diagnosed endometriosis (3 laparoscopies and 1 removal so far) and PCOS (polycystic ovaries) and I have now also been diagnosed with Crohns disease.

I have suffered from what I now know to be unnatural stomach problems for years in fact the earliest 'urgent' incident me and my mum can remember was probably when I was 6 or 7.

My problem is due to my gynae problems as the stomach pain has got worse and the pain in my right hip and pelvic area increased the drs just assumed that it was the endometriosis returning.

However after my third laparoscopy they said that yes the endo had returned but it was in a different area and it was not causing my pain and they thought it was Pelvic Congestion Disorder but nope after a venogram that was negative as well so I was referred to a gastoentorologist.

I had blood tests, a barium small meal and a full colonoscopy where they took 20 biopsies, removed a polyp and found a few aptheous ulcers in my terminal ilieum.

I was then told it was CD and the senior pathologist had doubled checked the slides and agreed with the initial diagnosis.

This is despite my GP saying a few weeks before that there was no way I had it as although I do suffer from chronic diahorrea and have done for many many many years I never got blood in the bowl or mucous and I am certainly not underweight. In fact I struggle to lose weight and I tend to be in the over weight to very overweight category a lot of the time probably due to the PCOS.

I dont blame the drs as I never knew what happened to me wasnt normal and just thought I was sensitive to certain foods - I havent eaten meat since 1990 as it just goes straight through me and makes me feel so ill.

I was told that as I had always suffered with D and sometimes C and things hadnt got worse then it was normal for me and nothing to worry about. Even though I have to carry an 'emergency' kit with me and I have forgotten the number of times I havent made it in time as everything has turned to water. But I never discussed this properly as I honestly thought it was just IBS or a reaction to something.

I feel so angry at myself I never got it checked out sooner but with all the gynae issues I just blamed that.

I now know I am not going mad and I am not dirty for being unable to hold things in and there is a reason for all my unexplained joint pain, stomach pain, constant severe tiredness etc. (all things I blamed on the PCOS, endo or just me getting older)

I have been put on Entocort 3 tablets a day for 8 weeks
then 2 tablets for 4 weeks
then 1 tablet for 4 weeks
plus
calcium/vit D
and spatone a liquid iron supplement

I am apparently also going on auto immune suppressants I think.

I have my follow up appointment end of December to discuss my future.

I have also been told to go lacto free which means I am eating Vegan and supplementing my diet with eggs and a bit of fish - no shellfish for religious reasons.

I am really struggling with the weight gain at the moment and I am just feeling sorry for myself

I am lucky I have a very loving husband who has seen me through all my diagnoses for the PCOS. endo and now Crohns and he will do whatever he can to support me and help me but I do feel a burden sometimes

Work wise I have had to go down to 4 days a week as I just cant cope with a 5 day week anymore due to the pain and tiredness

I hope this explains a bit about me.

I am in total shock as I thought I would be told it was just IBS and lactose intolerant not another chronic condition to add to my list ((((((

thanks for listening

 

[Spooky1]

Welcome, latte.

Wow, you do have issues, but i'm pleased you are now diagnosed with crohns. they will sort that out for you hopefully. i wonder if they get that more under control whether other health issues might settle a bit. That would be good.

there are those on this site who are in the normal/healthily rounded shall we say. Not everyone is a skinny cow. probably the ovary probs add to weight too. Its not your fault.

There was also a thread on here about whether anyone had jewish connections (in relation to crohns), and most of us did not. But welcome to the forum anyway, there is so much here to advise you. I was so pleased to find this site because i'm pretty much housebound. I have a liquid feed through a tube through the abdomen which is pumped in slowly.

I also suffer extreme fatigue. I understand you needing to lighten the work load. Don't know how you manage it as i sleep a lot during the day, especially if i've been awake at night.

I hope they sort everything out for you soon and that the shock wears off. Its not a nice diagnosis, but many of us on here have it, or ulcerative colitis and even the undiagnosed forum.

We'll suffer with you latte. Just been reading on whether or not crohns sufferers drink coffee or not lol. Might have to cut those out. But we will sympathise.

great to have you with us.

 

[Latte]

I forgot to say I have lived with chronic diagnosed pain for years and tried all the NSAID under the sun.

None worked and I am now on Butrans transdermal patches which are a morphine derivative as I can't take codeine messes with my stomach so much.

The patches have been a god send not pain free but I have been so much better and now the steroids have also kicked in

Thank you for the welcome I posted at the same time.

It is difficult to know where the endo pain stops and the CD pain starts as the endo is only on my right side which is where all my CD inflammation is

 

[Earnellzwifey]

Hi Latte and welcome. Sorry to hear it was such a long journey to diagnosis. Like you will probably read on here many went I diagnosed or misdiagnosed for years. It took 6 for me.

I also have or we'll now post hysterectomy had a lot of female issues to. Sorry to say in my situation even after the hyster I still have more abdominal pain than I thought I would.

I too an in the over weight category also. Hope you find relief soon.

 

[afidz]

Hello and welcome!
you have been through so much! But it seems like you are doing a good job at staying positive. Now that you have the diagnosis you can do something about it. What are you going to take after Entocort? I hope you start getting relieved soon!

 

[Latte]

Just an update to say I finish the entocort/budesonide in two weeks time and I was put on methotrexate and folic acid about 6 weeks ago.

My bloods came back with the wrong type of enzymes for Plan A apparently so methotrexate is Plan B.

I take 6 tablets on a Sunday as I am now off Mondays since I can no longer cope with full time hours so it made sense as I get really bad nausea and sickness for about 24 hours.

I take folic acid on a Wednesday to counteract the effects.

My first set of blood tests after starting the methotrexate have indicated that my body can tolerate this drug. I have my next set of tests at the end of February.

I cannot believe the difference in my mental and physical health since being diagnosed and prescribed proper medication.

I dont even need my morphine patches anymore which I didnt think was possible.

I still have days I am in a lot of pain and I cant concentrate properly which is why I have reduced my working hours. But the good days are now out weighing the bad days which is amazing.

I was able to jog for 30 seconds on the treadmill for the first time in three years if not more which was a big milestone for me.

Dont get me wrong I am still in pain and I still have tummy troubles but compared to how I was the improvement is immense.

 

[Sybil Vane]

Hi Latte! I'm glad you're doing so much better! I had a similar experience to yours in that I didn't have typical Crohn's symptoms before I was diagnosed. I had ulcers throughout my jejunum that ended up causing a stricture which led to an obstruction. During that entire time, I never had diarrhea or abdominal pain until I developed the partial obstruction. When they told me I had moderate-to-severe Crohn's, I couldn't find anyone who had also been diagnosed but didn't have diarrhea. The diarrhea eventually came and I miss those diarrhea-free days.

I'm glad you're getting the care you need and are in a better mental place. That's always super important.

 

[nativesith]

Latte...I too know unexplained joint pain, stomach pain, constant severe tiredness etc. all too well. I am about the same age. I ave na been diagnosed with anything really.
You are na alone.