New to Crohn's and the forum

[Shelbylou]

Hi everyone.

I'm a 32 newbie from the :uk_flag:

I'm new to both Crohn's and the forums so you'll have to excuse any mistakes etc. :biggrin: :sign0144:

Well, where to start? It all came to a head at the end of march when I had my appendix taken out. Within 3 days of it happening I started with the worst stomach cramping and diarreah that still hasn't gone completely now. I suffered through for 3 weeks after being given antibiotics from my GP etc, but got to the point where I couldn't take it any longer and went to A&E (ER to my US friends). They admitted me and I was kept in for a whole myriad of tests, scans etc, which eventually showed a thickening in my bowel and a need for the dreaded colonoscopy.

I had the procedure a couple of weeks ago, and was diagnosed with crohns and have just had the appointment through for a barium meal xray. As yet, i'm on pain meds, and keep a food diary but have no idea what's going to happen because I need to be referred to a GI once the other tests have been done.

My other problem which started a couple of days ago, is abdominal pain (sharp and stabbing in my left hand quadrant and then the cramps...fun (Not!). This has come hand in hand with the difficulty to have a bowel movement and truthfully, I don't feel like I want to go at all. I just feel bloated and bleugh and the laxatives I have taken have little effect. I did go this morning but it was so painful and left me on the verge of tears trying.

Okay, enough of my winging. This is me...Shelbylou aka Michelle :heart:

 

[muppet]

It seems really odd that an appendectomy would exacerbate and "unmask" a latent and until then, dormant Crohn's Disease. I'd look for a second and possibly a third opinion, personally. It sounds much more likely to be infection/gastritis, with the big, flaming caveat that I AM NOT A DOCTOR.

 

[Shelbylou]

Hi Muppet

It's just been a weird situation from march to be honest. I started with pain in my left quadrant, and they said my appendix was inflamed, but everything flared a couple of days after so not unless it was a flare in the waiting, I don't know. The pain moved all the way round from the left quadrant upwards to the top of my large bowel and they looked at the opening to my small bowel with the colonoscopy and it looks like there's scar tissue there too which suggests it's in my small bowel.

All I know is that i've got crohn's (it's been diagnosed with a whole myriad of tests) and that the symptoms that i've had over the years that my GP kept telling me was IBS, was actually crohn's because there's scar tissue there to suggest i've had it for years but never had a major flare (the odd cramps and bleeding from the bum, but nothing like what i've had the past few months)...what can I say, my GP was crappy so I changed to a different practice.

Like I said, i'm new to this all and i'm not blaming the appendectomy, but my consultant said the initial infection may have inflamed the area just above the appendix etc. I dunno...of course, there's always the possibility that crohn's was actually mistaken for appendicitis, but that's not something I want to get into.

Thanks anyway. I appreciate your answer.

What I do know, is that it IS definitely crohns. Not infection, not gastritis because they got vetoed early on.

I'm no doc either, so I can only go off what i've been told by my consultant who has been looking into everything and diagnosed me definitevely after the colonoscopy.

trust me, i'd rather not have a cronic condition at all, but I have to work with what I have right now and it took me ages to actually get on here and introduce myself because i've spent time in denial.

 

[David]

Hi Michelle and welcome to the forum. It sounds like you're having a tough time My heart goes out to you and I pray you start to improve soon. You deserve to feel well! Various things:

1. Am I correct that you're currently not on any medication? Did someone prescribe you the laxatives?

2. You may want to look into enteral nutrition. It may help calm things down until you can get in to see your GI. It's also an outstanding treatment option so the sooner you learn about it, the better.

3. When you get in to see your GI, if they haven't already, ask to have your vitamin D, B12, and folate levels tested at the very least. People with CD are commonly deficient in those.

4. Any idea when you get to see the GI?

I wish you all the best. We're here for you!

 

[Shelbylou]

Hi David

Thank you so much for your kind message! it really was heartwarming and the offer of support is very much appreciated.

I really am having a hard time at the moment. I saw my GP this morning, and was told that if the pain gets worse, then I need to go to hospital (Something I'm actually considering because my symptoms are keeping me awake). I've bought my lappy upstairs to try and take my mind of stuff, but it's difficult because the pain meds and anti-spasmodics are having little effect.

As far as the points you outlined, Here goes.

1. Am I correct that you're currently not on any medication? Did someone prescribe you the laxatives?

The only medication that I take at the moment is Buscopan, co-codamol (codeine and Paracetamol), antiemetics and anti-acid capsules. My GP told me this morning that he was wary of giving me anything else in case it was wrong because he's not a GI and would rather I wait for the regular meds from my consultant or GI doctor when I get referred. The NHS doesn't do anything quickly unfortunately, so as it stands I'll have to wait. I will be contacting my consultant on Monday because he's not available this weekend, but if I end up deciding on going to A&E on advice of my GP, it might be quicker and they might be able to give me medication that can help.

The Laxatives I have are prescription but can be bought over the counter.The hospital prescribed it when I had my appendix out because they said people are at risk of being constipated afterwards...of course I went the other way

I contacted my consultant when I started having the issues with the constipation and explained that I was given Lactulose and Senna at the time, and wanted to know if they were safe to use with Crohn's. He said the lactulose will be fine, but the Senna is a big no no because rather than soften stools, it sends your bowel into a mild spasm to try and urge the stool through. (Sorry, I think that was a wee bit graphic there...)

2. You may want to look into enteral nutrition. It may help calm things down until you can get in to see your GI. It's also an outstanding treatment option so the sooner you learn about it, the better.

Thank you! I will definitely look into that because right now i'd do anything to make the pain stop. This flare as my consultant called it has been going on for a couple of months and everytime it calms down, something jumps up and knocks me back again. I really appreciate your advice. It's nice to have someone suggest something that I can do myself because right now, i'm at the elimination stages with food and have managed to eliminate some out of my diet thanks to the food diary I keep.

3. When you get in to see your GI, if they haven't already, ask to have your vitamin D, B12, and folate levels tested at the very least. People with CD are commonly deficient in those.

I'll definitely ask. I do take a multivitamin every day and have done for years as well as drink Emergen-c which gives me a high dose of vit c. I started with those years ago because I have always had problems with catching colds and infections in one way shape or form. I'll speak to my GI when I get referred.

4. Any idea when you get to see the GI?

Unfortunately not. My consultant is the same surgeon who did my appendectomy and he said he wants to do some more investigation by way of the barium xray which I have on the 23 June. He said he wants to how far into my small bowel the disease is before followup.

David, thank you so so much. Your message really has lifted my spirits and I really appreciate that. It's nice to have the support there somewhere because I'm the only sufferer in my family and I don't think they fully understand what i've been through the past few months (as supportive as they have been, it's been difficult and at times, debilitating.)

:hug:

Michelle x

 

[David]

Hi Michelle,

Awwww, that's terrible that you're having a tough time of it tonight That makes me so sad.

With those meds your body probably doesn't know what to do. Codeine will often give people with Crohn's Disease issues, especially since it can cause constipation. And then of course the laxatives do what laxatives do and you're stuck in the terrible feedback loop of your poor intestines wondering what the heck you want them to do. "Do you want me to poop or not?!" It's not my place to tell you not to take those meds but my bet is your GI will change you up at least somewhat.

Part of the problem with multivitamins is they lull people into a false sense of security. If you're deficient in certain vitamins or minerals due to CD, a multivitamin will almost assuredly not provide enough of what you need. For example, you mention problems catching colds and such. People with CD are commonly deficient in vitamin D which is EXTREMELY important when it comes to the immune system. A multivitamin will usually have 400 or maybe 800iu if you're lucky. Whereas to get to ideal levels you'd likely need 4000+iu per day.

Anyway, you're in for a long learning curve. But we're going to help you every step of the way.

*hugs*

 

[Shelbylou]

Hi David.

Oh no! It sounds like carrying on with the meds they gave me when I was in hospital last time is a bad idea. I've abused my poor old bowels and confused them I think I need to treat them to some TLC...Hmm, wonder if I can use that as an excuse for a spa getaway for a weekend he he.

I know codeine can constipate you which is okay when you're constantly running to the loo, but now it's not even touching the pain. I'm actually longing for the good stuff they gave me when I was in hospital last. That managed to numb the pain enough to let me sleep at least. I'm exhausted and strangely enough, sitting up in bed with my laptop is a bit more comfortable than actually laying down.

I think the sooner I see the GI the better. It's 3.18am and i'm seriously considering the hospital right now because sleep is elusive and the pain medication is having no effect at all. I'll get through it though, I'm quite strong willed like that. It's just a shame that it's all coming to a head once again. I definitely need more advice. Unfortunately, the NHS is very very slow, and any appointments seem to take an age to come through. At least if I go now, or tomorrow they might get things going a little bit quicker, though the thought of another hospital stay is daunting to say the least.

Oh no...sorry, I didn't mean to winge on with myself. I'm just exhausted, feeling bleugh and it's good to be able to get stuff like this off my chest. I'll definitely discuss the vitamins with the doctor though because if there's a deficiency there, then it'll be good to get the suppliments to deal with that (and living in the good ole UK means vitamin d from sunshine is wishful thinking lol.)

big hugs x

 

[David]

Michelle, if you're in so much pain that the pain meds aren't doing anything, go to the A&E. Get the ball rolling faster and let them make sure nothing too serious is going on. You deserve it.

 

[Astra]

Hiya Michelle
and welcome, not so far from me!

so sorry you're going thro this, hope you find comfort here with us!
Yeah get to A&E, post surgery infections are common, and it might need a bit of Scooby Dooin!
At least you'll get some decent pain meds, via IV.
Or, get your GP to phone the surgical ward ahead, thus avoiding A&E and the 8 hour wait, and get yourself there, not by ambulance.
Co-codamol is ok short term, it took me a LONG time to wean off them, I was totally addicted.
Good luck and keep us updated
lotsa luv
Joan xxx

 

[Shelbylou]

Hiya Michelle
and welcome, not so far from me!

so sorry you're going thro this, hope you find comfort here with us!
Yeah get to A&E, post surgery infections are common, and it might need a bit of Scooby Dooin!
At least you'll get some decent pain meds, via IV.
Or, get your GP to phone the surgical ward ahead, thus avoiding A&E and the 8 hour wait, and get yourself there, not by ambulance.
Co-codamol is ok short term, it took me a LONG time to wean off them, I was totally addicted.
Good luck and keep us updated
lotsa luv
Joan xxx

Hi Joan.

Sorry for not replying sooner, but I literally just got discharged from hospital. I've been on IV antibiotics since early Sunday morning and started with steroid injections once daily.

I've got my meds now from the GI, but will admit that the prednisolone scares me a bit. I've got antiobiotics, anti-inflammatories that target the inflammation in my bowels and tramadol because the pain is still bad.

I've always been a big girl and really don't want to have to deal with the weight gain that comes with the steroids and after reading up about them, I think i've managed to scare myself even more. I really can't afford to put weight on at all

They've started me up on 60mg for the first 21 days and then I have to taper it down by 5mg a week until i'm on the lowest doseage and can stop. I know it sounds vain to worry about the weight, but it's my biggest fear right now as well as the need for suppliments and extra potassium. I've been told that if I start throwing up or bleeding when I have BM, to go back and as soon as I get home, I bleed. Typical! I'll give the GI a ring tomorrow and will discuss it with him then.

Thanks for your lovely message! You really aren't too far away from me at all! Just an hour away.

I wish it was as simple as a post operative infection, but unfortunately, the surgery site is clear and it's my bowels that are suffering (my ileum and large bowels as well as some thickening of my small bowels now...grrsss)

Lotsa luv to you too xx

 

[Shelbylou]

Michelle, if you're in so much pain that the pain meds aren't doing anything, go to the A&E. Get the ball rolling faster and let them make sure nothing too serious is going on. You deserve it.

Hi David.

Thank you for your advice and the push in the right direction. It turned out my white blood count was sky high and my inflammation count soared with it.

Unfortunately, i'm on predanisone now and I really really don't want to take it. It scares me no end and i'm not looking forward to the weight gain (I'm a big girl already... )

Thanks again. You were a great help and your advice was very much appreciated x

 

[David]

I can understand your concerns We do have a prednisone support forum if you want to connect with others on it, ask questions, etc.

*hugs*

 

[Catattack]

Hi Shelbylou,

I just thought I'd chip into this thread when I saw how concerned you were about taking Prednisolone. I just wanted to say I've been on it for nearly three weeks (30mg a day) and I have never felt better in my life. It has taken away all symptoms and given me extra energy/zest for life. As a consequence I've got a load more energy to exercise which is helping to combat weight gain. Yes I have gained a bit of weight ( about half a stone in three weeks)but I am totally convinced that is because of the following reasons:

1. I'm eating loads more because I enjoy eating again as I'm not in pain from the Crohns
2. Every time I go to eat something 'naughty' I can hear myself saying in my head 'well I'm on steroids so I will gain weight anyway so I might swell have this massive bit of cake!'

So overall I'm pretty convinced that the weight gain so far is my own doing and that If I have a bit more self control then I don't think it would be that bad.

Overall I think you will find you will feel so well (hopefully) on the Pred that the potential weight gain will not bother you too much.

I do hope you feel well soon.
Take care xx

 

[Shelbylou]

Hey Catattack (Nice name! I had to laugh because as I opened your message, my little bombay kitty attacked my feet and started trying to steal my sock!)

The problem is, i currently weight 20st 3lbs and I lost a lot of weight when I started with this in a very very short space of time. it was the only good thing because I like being a little bit slimmer and was hoping to lose more weight the healthy way.

I think at this point, i'll take them but damn, I've got the will power of a gnat LOL. My excuse will be "Yes I've put weight on, but i'm on steroids so there" he he

thanks for your lovely message. Everyone on here is just wonderful and your support is so appreciated. I'm new to this and the only one in my family with the condition so it's difficult to talk to them about it but you've all been there and know exactly what it's like.

Big hugs!

PS...Oooooh cake! Now that's going to be a hard one to deny. A nice lemon drizzle, or lemon and poppyseed muffin is my vice when i'm healthy

 

[Shelbylou]

Help!

:sign0085:

Guys, i'm really sorry and I know it sounds like i'm just winging about this, but I really need to understand this a little bit more.

Last night, the pain was bad and got worse, so the hospital gave me oral morphine which helped. I took it this morning as well.

The GI came round, and basically told me that if I bleed when having a BM or throw up, then to go back in.

Well, nub of it is, I started to bleed. I've just had a BM oo:....TMI I know, sorry, and that smilie was just far too tempting sitting there on the porceline god LOL

Well, there was a lot of blood which explains why the pain increased to the degree it did and is still bad now. I'm just waiting for the tramadol to kick in so I can go and try to sleep. It's sods law that it's after I got discharged, but why would I need to go back? There was blood there last week but that stopped but the pain started pretty bad. now, it's back...dun dun duuuuun

I'm going to ring my GI tomorrow and let him know, so we'll see what he says but I was just wondering what the possible reasons are behind going back in because i've heard it's a symptom of crohn's anyway.

Thanks again and I promise, i'll stop being a pain in the bum. I just never ask the questions at the time (bad habit), and am left wondering when it happens.

Hugs to you all

Michelle x

 

[Shelbylou]

I can understand your concerns We do have a prednisone support forum if you want to connect with others on it, ask questions, etc.

*hugs*

Ooh PERFECT! Thanks David. I'll go and take a look over there. It might help alleviate my tension about the dreaded steroids

Hugs xx