I'm struggling with this

[canoes16]

Hello!

The story so far...

September & October 2016
Weekly visits to the GP, assumed upset tummy. Blood and stool tests = inconclusive. Referred to GI.

The moment when I shit on the living room floor was the point where I reached the end of my rope.

November 2016
CalProtectin came back as 236 so GP sent me to hospital, put on IV steroids and sat in bed for 4 days. Sent for a short scope = Inconclusive.
Entirely traumatised by this. I was given a sedative but it didn't take effect until 20 minutes AFTER the procedure. The drs don't listen to me when I say that I have a slow metabolism.

Sent home with steroids and Pentasa. Follow up appointment will be made with GI. Wait for MRI.

January 2016
Appointment with GI. Told me about Asathioprine. Scared.
Had MRI = Slight thickening of Large Colon, otherwise = Inconclusive

March 2016
Full colonoscopy scheduled. Prescribed 2mg Diazepam (with no instruction when to take it)

I am so frustrated that I do not know what is going on. There is so much information available and I'm drowning in it.

Should I be taking B12, vitamin D and calcium supplements? Or will this just give me kidney stones in the long run?

I travel (by air) every week for work - I've read I've got double the risk of blood clots, should I wear compression socks?
Should I take daily asprin?

Food - well, I haven't been able to pinpoint anything yet.
I had plain chicken in a gluten free wrap 2 nights in a row, one night - totally fine, next night - rapid transit.

I'm seriously concerned that I have now developed an eating disorder. I sit down to a plate of food and I cannot eat it. Every forkful is a battle.
I used to love food. I spoke to my GP about this (December 2016) and I was told to take it up with my GI at my next appointment (at the time this was not even scheduled) and to go home and enjoy Christmas...
I got the distinct impression that because I am overweight (not massively) it would do me no harm not to eat. Do I have to turn up as a skeleton before I'm taken seriously?

I'm in absolute denial about my mental well being. I'm constantly frustrated at having thoughts that are not rational and not my own.

The past couple of weeks I've been getting pins and needles in my legs constantly. I'm also struggling to stay warm. This is coming from a person who hates sunshine and is usually too hot.

What happens now? I think it's the colonoscopy and then Azathioprine. Who is going to help me with my other demons? I'm talking to the GP and the GI and the IBD Nurses (if they answer the phone) and I'm not being taken seriously. The old me would say 'stop feeling sorry for yourself and stop expecting someone to help you if you won't help yourself.'
Do I just need to get out of my funk and take charge of this situation? I'm finding it impossible to accept that this is my life now and you don't get better from this, but I can't live like this. I'm going to have a mental breakdown.

I'm hoping that writing this down here will help me face things.

In other news, it's been 52 days since I shit somewhere other than the toilet...

 

[valleysangel92]

Hello and welcome to the forum, I'm so sorry to hear of everything that you are going through but i'm really glad you've found us.

Are you meaning to say that your scope will be in March 2017? If so and you haven't been told when to take the diazepam then I would recommend calling the endoscopy department and asking them for advice.

In terms of the air travel, depending on the length of the journey, compression socks may be a good idea, i don't think they will do any harm at any rate. I wouldn't recommend taking aspirin though, especially not on a daily basis, as this is an NSAID and this type of medication can increase bleeding in the gut and cause ulcers in the stomach, both things you will already be at risk of if you have IBD.

Unfortunately loss of appetite is something a lot of us struggle with, I know i personally find this one of my most persistent symptoms. I will sometimes go for days without truly feeling hungry, and only eat because I know that I need to. There are times when I really struggle to eat a full meal, because even as I'm eating I'm starting to feel nauseated and getting cramps. I think its fairly common for patients to begin avoiding food because they know that after they eat they get pain or another symptom becoming worse, and therefore associate that symptom with eating.

The advice I have always been given is that I should eat small amounts but more often, and I should go for what I feel like I can eat. My doctors are not particularly concerned about the composition of my meals, but have told me that I should try to get as much protein rich food as I can. I have also been encouraged to go for higher calorie options but I am usually underweight or on the border of it.

In terms of accepting whats happening, I think it's important to remember that this is very early days for you, and so acceptance may take a little while longer to come. Anyone would feel daunted by the prospect of having an illness for the rest of their lives, but I promise you it wont always be quite like this. Over time, you will learn what works for you and what doesn't. You will get to know what foods you can eat without upsetting things, you will learn which medications suit you and you'll learn to recognise when you can push your body and do a little more and when you need to take a break and allow yourself to get some rest. This time of waiting for tests and medications is the worst, you have all sorts of questions running through your head and not very many answers and I know that's tough.

Azathioprine isn't as scary as it sounds, I was on it myself for a brief period and while it didn't suit me, it did help my symptoms. As long as you get regular blood tests and make sure you wear good sun cream, you shouldn't have any major problems. Remember we have to be told about side effects, but they are only a possibility and your doctor wouldn't recommend them if they didn't think that they were the best option for you.

What is it that makes you think your medical team aren't taking you seriously? I think sometimes they forget that this is all new for us, whereas its an every day thing for them and so what frightens us doesn't concern them and sometimes their lack of worry can come across as brushing us off.

Give yourself some time, be kind to yourself and remember that you are not alone. These moments can be so isolating, but all of us here have been through this at one time or another and we will always try to support you and answer questions to the best of our ability.

 

[Justanothercp]

Hi. I've copy/pasted you post to respond::

Should I be taking B12, vitamin D and calcium supplements? Or will this just give me kidney stones in the long run?** I'd hold off for now until things get under control for your blood work shows you need to supplement. Unless your doctor has advised otherwise

I travel (by air) every week for work - I've read I've got double the risk of blood clots, should I wear compression socks? ** I know people that do, couldn't hurt
Should I take daily aspirin? **talk to md about this one, recent studies show that you should not do this unless previous problem or Truly high risk

I'm seriously concerned that I have now developed an eating disorder. I sit down to a plate of food and I cannot eat it. Every forkful is a battle.
I used to love food. ** food, this is the big one. Very very difficult to figure out what works for you. Personally, the Paleo diet ended up being what worked for me. And I've had great success with a really good probiotic. I would suggest keeping a log and maybe try an elimination diet.

I'm in absolute denial about my mental well being. I'm constantly frustrated at having thoughts that are not rational and not my own.** counseling? I think this is pretty normal, I think most people who have our type of health issues go through something like this. Once you get things stabilized and regain some control, that should help as well.

Do I just need to get out of my funk and take charge of this situation? ***I think feeling like you have some control would help, do a lot of research. Start tracking your diet and maybe trying some different Crohn's related diet. And counseling. Maybe see if your insurance will pay for the nutrition consult. Hang in there

In other news, it's been 52 days since I shit somewhere other than the toilet... *** keeping a sense of humor certainly helps

 

[Sophabulous]

I can totally relate to everything you say. I was living on potatoes only for months, and even then I was forcing myself to eat only once a day.

I was very lucky not to have been considered to have an eating disorder before I was diagnosed. I think if I were a teen that's the road they would have gone down.

If this is IBD then you will likely be given steroids to reduce the inflammation. They will bring your appetite back and then some! All going smoothly if you are on azathioprine too you should continue to improve after the steroids are reduced and eventually stopped.

I've had steroids alone when I was first diagnosed and gained quite a bit of weight back, but lost it all again shortly after as they hadn't stopped the flare. I then did an 8 week liquid diet which I loved, of you really don't feel like eating at all then push for that, it made me feel loads better and actually wanting food again by the end of it.

I also had steroids again over Christmas with a bit of a hiccup and they have worked perfectly as I'm now on the azathioprine as well. That combination for me was perfect and I've been off the steroids for 3 weeks or so and still feeling pretty good.

Good luck and keep us informed!!

 

[Cat-a-Tonic]

Hi Canoes16, welcome to the forum. With regards to the mental toll that this is taking on you - personally, I feel like the mental aspect is at least as difficult, if not more difficult, than the physical. Dealing with an illness like this changes your whole life, and really you end up going through a grieving process. And that's normal, I think all of us here have gone though at least some of the aspects of grieving, and many of us grieve over and over as we have periods of flares and remission. You had a normal life and now everything has been turned upside down and your body has essentially betrayed you. Your life is completely different now and the future looks scary at the moment. Whatever emotions you have about that - sadness, depression, anger - it's all okay. It's okay to feel that way. You mentioned having thoughts that are not rational - I hope you're not considering suicide, but it's certainly okay to be depressed and to grieve. Give yourself permission to feel your feelings, even if you cry a lot or feel silly or weak, it's okay to feel those things. And of course please reach out for help if you are thinking of harming yourself.

If it helps, I had read somewhere recently that illnesses such as IBD tend to cause a big change in gut bacteria, and that changes in gut bacteria can also cause depression. (I didn't understand the science behind it as it was all very technical, but it was something to do with how the body and brain responds to serotonin - in a nutshell, there is a very strong brain-gut connection.) It's not just that you're sad because you're feeling ill, it's literally another symptom of the illness. I know that for me, it makes me feel better to think of the depression as a symptom, because then it doesn't feel like a personal failing or something that I can't seem to just snap out of, you know? (Not that depression is ever a personal failing, I don't mean to imply that, but it's more helpful to me to think of it as a symptom of my physical illness because otherwise it does sort of feel like a personal failing even though I know it's not.) It's another manifestation of the monster in my guts. It's the illness and not me. That's how I prefer to think of it anyway.

A lot of doctors don't even really acknowledge the mental toll that this sort of illness can take on a person. My GI usually just hands me a tissue and otherwise ignores me when I'm crying in his office - he only deals with the physical side of the illness, not the mental side, he's made that clear over the years. Honestly, here on the forum is where I get my mental support! Everyone here has been through similar things and knows just how I'm feeling and can relate and empathize when I need to vent or just need somebody to tell me I'm not crazy. So please do stick around the forum and chat with us, we're here to support you. If you feel like that isn't enough, I do encourage you to seek out a therapist or counselor too.

As for losing control of your bowels, most of us here have done that as well. I'm an adult, I'm 37 years old, but a little while back I ended up having an accident in my pants. I was at home, I got myself cleaned up right away, the only person who witnessed it was my husband, and even then I'm not sure that he actually knew what was happening. Even so, it was an extremely humiliating feeling and I just went into the shower and cried and cried. So I know how you're feeling. If it helps, just know that it happens to a lot of us on here. You're not alone.

 

[Sophabulous]

I'm really interested in the brain-gut connection. I've heard it anecdotally but are there any scholarly articles on it I could read up on?

I know in the months leading up to my diagnosis I was really struggling mentally. Everything was so difficult to do with the horrendous fatigue and brain fog. I had horrendous anxiety and get severe winter blues anyway. In the end I gave up and went and got a sick note and had 2 weeks off work. The GP wrote on the note it was as a result of my symptoms but that wasn't the case. I just couldn't cope anymore and I was ashamed to admit it and have management know how badly I was struggling.

To be fair in those few months my life was falling apart anyway regardless of being poorly so I can't blame it all on the Crohn's. I was diagnosed exactly 1 month later following a colonoscopy.

Then a weird thing happened....pred made me ecstatic! After reading the side effects I was expecting the complete opposite but both times I've taken it I'm like Mary Poppins on ecstasy. There's an image for you ;-)

The old feelings crept back in though, the pred never really got the inflammation under control and a few weeks later I did a liquid diet. Since then touchwood I've been much better both physically and mentally.

I had a smaller but very different flare just before Christmas and I was absolutely miserable again. Not just because I was suffering, I'm talking really doubting all of my life decisions and self worth. A week into pred it was all gone again and thankfully doesn't seem to be rearing its ugly head again.

I do feel somewhat robbed that for years I was feeling like that and there was a solution all along - if we do attribute my experience to the brain-gut connection that is! It could be one massive fluke but I don't think so.

I guess what I'm saying is hang in there. I know it's harder than you can put into words. One way or another it can and will get better. When you are at a low ebb we are all here. Always.

Take care x

 

[Cat-a-Tonic]

Soph, I couldn't find the same article I had read awhile back, but I googled "gut bacteria and depression" and came up with this:
https://psychcentral.com/blog/archi...ection-how-gut-bacteria-may-treat-depression/

I know just what you mean about feeling like Mary Poppins - when I first did a short trial run of pred 7ish years ago, I felt fantastic. "Euphoria" is a listed potential side effect of pred, and I think that's what it was. I felt like a million bucks, like I wanted to burst out into song and dance (I made myself not do that, because I can't actually sing nor dance, ha ha). Unfortunately, this time around I didn't get euphoria, and now I just want to be off of pred. To be honest, I've been pretty depressed lately myself, and I'm often finding it a challenge just to keep putting one foot in front of the other. This week has been particularly bad for some reason. My guts aren't great but they also aren't terrible and my life is going okay, I found out that I'm probably not going to be laid off from my job, so I feel a bit stupid being depressed for no real reason. If I'm really honest, a little part of me is sad that I'm not losing my job - like you, I kind of really just need a break right now. I of course need my job, I need both the income and the health insurance, but I also sort of need a break. So I guess I'm just feeling a little bit stuck at the moment.

Sorry to hijack your thread, Canoes. But if it helps, know that I'm right there with you in having some mental struggles right now. And as Soph said, we're all here for you.

 

[GI Jane]

That's so freakin funny you guys saying feeling like Mary Poppins, half the time I'm like that cleaning everything the other half I want to punch something. I was so excited that the prednisone worked that I wanted to take a picture of my poop first one normal in so long.....ok I was sleep deprived too so weird thoughts lol.....seems like years ago not months.....gosh I hope this surgery is the thing that works.

 

[Sophabulous]

That's so freakin funny you guys saying feeling like Mary Poppins, half the time I'm like that cleaning everything the other half I want to punch something. I was so excited that the prednisone worked that I wanted to take a picture of my poop first one normal in so long.....ok I was sleep deprived too so weird thoughts lol.....seems like years ago not months.....gosh I hope this surgery is the thing that works.

Hahaha, it does funny things to us! Honestly I was like the energiser bunny! I can totally relate to the manic cleaning, I was also doing late night cooking marathons and my freezer was fully stocked with batches of food for weeks :-D

 

[Hypocrohniac]

Canoes, I can't offer any better advice that the others have given, but I wanted you to know that I read every word of your story and I can feel your pain.
Mary Poppins - yes! Except being a lovely parent one minute and a shrieking monster the next. Or, cleaning the stove with a toothbrush one minute, and in a coma for the rest of the day!

 

[canoes16]

WOW!
To be honest I just signed up to this forum - said my piece - and felt better for letting it all out - I hadn't realised that so many people had replied!

THANK YOU!

The best part is not feeling like I'm alone.