Another new diagnosis

Hi All, My name is Sarah and I live in Ireland. I've recently been diagnosed with Crohn's. I have been looking for the strenght to write something here for a few weeks always feeling like my story isn't worth telling but having had a really bad week I just needed to tell someone. Waiting on an MRI scan which i'll be waiting on until November (unless a mircle happens). I'm following my diet, taking my medication (Pentassa) but the pain is getting worse and worse. I'm discovering new levels of nausea, migranes, sleepless nights and the fatigue. My stomach aches, my body aches and I see no change except on a worsening basis.

In 2008 my aunt died after a very long (40 yr) battle with crohns so its difficult.

Hi SarahDub,
Welcome, I'm a fairly new Chronie as well (official diagnosis December/11). How long have you been taking the Pentasa? It's quite possible that the Pentasa isn't the proper drug for you and you may need somthing stronger to hit the disease and work on reducing the inflammation (steroids). Prednisone seems to be the one, sometimes Entocort is used as well. I wish you well and you will find a WEALTH of information here.
Michelle

Hello Sarah
Welcome to the forum.
I am sorry you have so much pain and feel there is more that could be done for you.
Have you been in touch with your GI specialist lately?
It may be a good idea to get in touch with them and let them know how badly you are feeling. Or else go to your local ER at the hospital.
You should not continue with all these symptoms you describe without some help.
Crohn's has a way of insidiously developing and getting worse on us
Call your doctors soon..
Hugs and best wishes
Trysha

Hello Sarah, I am sorry that you are feeling so bad at the moment. I agree that it sounds like the pentesa is no longer able to do the job for you and that you need to get onto your GI asap. Whilst steroids are not ideal they are good and getting inflammtion under control, also I would say you need to have your vitamin levels checked - B12, D and Folate. It is common for us to be deficient in these and if they are low this will explain a lot with your fatigue and even how you are feeling mentally. I am glad you have decided to join us, there is a lot of advice and support available and we are here for you :hug:

Let us know how you get on hun.

Hi Sarah, I'm glad you found the strength to post! And your story IS worth telling

I agree with Angrybird above about those vitamins. Especially the vitamin D; as soon as someone says, "body aches", that's where my mind goes first. And considering you live in Ireland AND have Crohn's Disease, I figure the chance that you're deficient in vitamin D is near 100%.

I wish you nothing but the best. Please keep us updated as to your progress.

Def request another appointment with your GI and get some advice my crohns developed very rapidly and I developed an abscess and had all the symptoms you describe and at that time I was only on pentasa. Once I got the abscess treated and put on pred I felt a lot better. Try to get ur GI to put u on the urgent list for an MRI, alternatively you can pay to have it done in Dublin if you are in the position to be able to do this. Good luck and as someone else suggests go to a&e if symptoms worsen.

Hi SaraDub. I think you need to get back to the Dr.'s office. If your symptoms are worsening, then it's important you find out why..

Also, I have been on several different medications without any measurable success.. It is quite possible that you will need more, and stronger medications than Pentasa. Fish oil, for me has been as effective as Pentasa, without the side effects. I am NOT recommending you stop your current medication, I am just suggesting an addition.

Is there anything you can do to expedite your visit to the Dr. for the scan? November is a long way off, and CD can get bad quickly.

Good luck to you!

Thank you, thats all really helpful. Since my last appoinment things seem to really have progressed quite quickly, my next appointment with the GI Specialist is on 29th March so i will speak to him then about my new symtoms and the severe pain. I have started taking Probiotics and will get some fish oil also to help in the mean time. I had all my bloods done in Dec and they came back all normal levels of B12/D and Calcium. I did mention to my doctor in January that my energy levels were at the lowest they've ever been. I will ask him to run my bloods again.

My crohn's is in the ileitus, and the MRI will hopefully be done sooner than November which I should know about in a few days. I do have private health insurance but unfortunatly they do not cover my scan so i can't realy afford to pay for it but i will if i have to get some answers.

Thank you all for your advice, I must say I do feel a bit stronger today knowing I can talk to someone who is going through this or been through this.

Sarah, do you know what your specific levels of B12 and D were? You can be "normal" but the very low end of normal and still have symptoms.

No I don't, I suppose should be asking these questions but I normally just freeze up and just nod when the doctor starts talking about everything.

Yep, start keeping track of this stuff. It's very important to take an active role in my opinion

SarahDub said:

No I don't, I suppose should be asking these questions but I normally just freeze up and just nod when the doctor starts talking about everything.

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It's a good idea to write down your questions before you go to the doc. That way, when you get to the doctor, if you freeze, you will still have the means to ask what you need to. My Uncle is dealing with symptoms of CD, and is going through the diagnosis process. I sent him an email with some questions to ask the Dr.. It was good for him on two counts. One, he is new to IBD, and is not sure what to ask the doctors, or what they should be looking for. Two, many doctors have limited experience with IBD in general, and may overlook some simple tests that can be done to get a more specific diagnosis.

When my Uncle had his followup, he said the doctor looked at the email, and stated that there were a couple tests that had not been done, that were actually a good idea to do... :ywow: Duh... He ended up being scheduled for a small bowel series, some bloodwork, and a fecal test...

Point being, be prepared. Advocate for yourself, and don't trust the doctor to know everything. They can sometimes benefit from some additional information.

I got my letter this morning giving me a date for my MRI, thankfully its not very far away and 6th April is the date. I've started to keep a journal, writing down my pain levels and bowel movements and its really helping. I also started on Vitamin D and Fish Oils, not a massive improvement but an improvement all the same.

I've also started to write down questions for the doctor when i am back there end of March.

Sarah,

When you say "not a massive improvement" do you mean it's an improvement that you're taking those or you're feeling a slight improvement in symptoms? How many IU of vitamin D are you on per day?

Hey Sarah, I'm from Dublin also! Once you get on the right medications you'll be back to normal, medicine has come a VERY LONG WAY in 40 years, don't fret, I suppose it can be overwhelming when first diagnosed, although in my case it was relief as I was suffering for months in silence because I myself thought I had bowl cancer, that was the only thing going through my mind when I was losing weight and passing blood, and I didn't want to face the reality but in the end I did and of course I found out it was Crohn's Colitis I was ecstatic in a very weird way, not sure how to explain it.

Anyway, good luck, comply with your doctors and you'll be fine!! Oh another thing, if you are a patient of St Vincent's University Hospital the IBD Nurses are great.

Feeling a slight improvement in symtoms, not feeling as bloated, and the pain level is now at 3/10(last two days), which previously was more between 5 and 7 out of 10. I am taking IU10 of D3 Vitamins, and 1000mg of fish oil. I don't know if it is Supplements or if its the meds finally kicking in (been on 4mg of Pentasa for 2 months).

Hmmmm. Are you sure 10IU of vitamin D? Do you know the brand you're taking and how many pills? I could look it up that way for you Did you find out what your vitamin D levels were or just start self-supplementing?

IAmTheWalrus said:

Hey Sarah, I'm from Dublin also! Once you get on the right medications you'll be back to normal, medicine has come a VERY LONG WAY in 40 years, don't fret, I suppose it can be overwhelming when first diagnosed, although in my case it was relief as I was suffering for months in silence because I myself thought I had bowl cancer, that was the only thing going through my mind when I was losing weight and passing blood, and I didn't want to face the reality but in the end I did and of course I found out it was Crohn's Colitis I was ecstatic in a very weird way, not sure how to explain it.

Anyway, good luck, comply with your doctors and you'll be fine!! Oh another thing, if you are a patient of St Vincent's University Hospital the IBD Nurses are great.

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Nice to meet a fellow dub on this.

I just kept praying it was IBS, with our family history of Crohns I didn't want to admit it was worse than it was (scared) and I still haven't told my extended family just immediate family, want to wait till after my MRI.

I am in the Mater Hospital, I used to work there so being very well looked after in there by everyone so really happy and I still work in Health so St Vincents Hospital staff are amazing too.

Thanks.

Just started to take them myself, went into the health store and bought them, my error in checking them there it would be 400iu. Bought them at Holland and Barrett.

I'd strongly suggest getting your levels tested. Taking that 400iu is fine but if you're really deficient, you'd probably need to take significantly higher amounts (please don't do this without getting tested).

David said:

I'd strongly suggest getting your levels tested. Taking that 400iu is fine but if you're really deficient, you'd probably need to take significantly higher amounts (please don't do this without getting tested).

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+1

It's not uncommon for chronies to have many vitamin deficiencies. I have problems with B, D, and Calcium. Even with supplements, I still have problems...

Good to hear you are on the mend!