Please help, feel like I'm going mad

[Racoon2000]

Hi everyone.
I was diagnosed with moderate-severe extensive Crohn's in Jan 2013 by colonoscopy and biopsy after 2 years of symptoms my GP put down to physical manifestations of post-natal depression.
After diagnosis I pushed for Infliximab instead of steroids as psychologically I didn't feel strong enough to cope with any possible side effects of steroids.
Been on Infliximab infusions every 8 weeks since and also 75mg of Mercaptopurine. Have never felt physically 'well' or symptom free since starting this treatment.
Recently underwent another colonoscopy and enteroscopy as my calprotectin tests came back high and also been having a lot of rectal bleeding, abdominal pain, horrendous fatigue, complete loss of appetite, joint and muscular pain, skin rashes as well as so many other extra-intestinal symptoms. Things have been getting worse since end of October. Have been off work for weeks now as I am in agony every day. I am a mum to 2 young children and feel like i'm not able to do 'mum' things, I struggle to even take my son to school and pick him up. My husband has to help out and my mum too. GP has prescribed tramadol and more recently Dihydrocodeine for my pain which has helped, but worried about taking these too often. Blood work has been coming back borderline anaemia and WBC has been slightly low but stable for other tests.
Scopes were horrendously painful even with sedation. Consultant said everything looks good and he couldn't see active disease but a lot of scarring at cecum. He also said I have 2 sinuses outside my anus. I asked about rectal bleeding and pain and where it was coming from. He said maybe a fissure that has now closed over caused the bleeding and that perhaps I have IBS and that's why my scopes were so painful. He made me feel like a bit of a timewaster to be honest. He is now referring me to a Dietician for FODMAPPING (has anyone done/heard of this?). He also suggested coming off mercaptopurine for a month as a 'suck it and see' approach to see if my symptoms are being caused as side effects of the medication. I have been off it for 10 days now and it's not helping things.
I feel so confused, frustrated and absolutely exhausted with all of this. In so much pain everyday throughout my body and can't seem to eat anything. Living on snacks as it's all I can manage. It's good that the Crohn's is being controlled with the Infliximab but at the same time I don't understand why I am still in so much pain and having so many symptoms. Is this all down to IBS? I really don't think that it could be. Can you still experience symptoms if Crohn's is being 'controlled'.
I'm still relatively new to all this so I have no idea what's going on. Should I go back to my GP and see if it's all being caused by something else? I'm worried they will say it's all in my head and i'm depressed again. I do feel low but I think anyone living with severe pain everyday would be feeling low.
I'm sorry for such a long post and I don't mean to moan, I know there are so many others here with lots more issues than me.
Can anyone help me or give some advice? Is this how my life is going to be from now on?
Thanks x

 

[carolhew]

Hi Racoon2000,
I'm so sorry to hear what you are going through right now! I can somewhat relate, I am in a similar situation.
I have been on Remicade since July and have continued to have symptoms, mainly abdominal pain and chronic diarrhea and/or constipation.
I had my follow up colonoscopy and EGD today and no inflammation was found, this is a first since being diagnosed in June of 2011! The Dr said my symptoms could be related to IBS, I wanted to cry! I was told I had IBS for close to 20 yrs before being diagnosed with Crohn's! I don't believe it is all in our heads, I refuse to believe it! There are too many of us with symptoms and no active disease and too many with active disease with no symptoms. I think "IBS" is used when the Dr does not have an answer. I just wish they would say they don't know. I personally am not going back to the belief that it is all in my head, I use to believe that it was.
I'm sorry that I don't have any suggestions or answers, I just wanted you to know you are not alone!
For the record, I wish I had passed on the prednisone. It was the worst 6 months of my life!
My GI has prescribed a low dose of elavil to help with the pain. Even though he did mention IBS, he still seems concerned with getting me some relief. I am grateful!
By the way, my Crohn's was severe in the TI and mild in the colon.
Carol

 

[AJC - Australia]

it is quite common for a GP to tell you 'its all in your head'…….very common thing for them to say because they have no bloody idea what they are dealing with. I would suggest ask around and find a really good gastroenterolgist that you like and get a good vibe off and slowly rebuild your intestinal health. good luck.

 

[24601]

First thing, you are not going mad. Second thing, whatever the doctor may say I don't think your Crohn's is under control if you are still feeling so unwell and I think you have proof of that in that your calprotectin is elevated. That's what that test tells them! It's not good enough for them to throw their hands in the air and give up because they feel like what they have tried is good enough. If you are having symptoms their work is not done. They should not take the easy way out and wave their hands around and throw out ideas like IBS. You have a diagnosis of Crohn's, the symptoms you have fit that so I say work with that! I second the opinion that it's time to find a new gastro, one who takes your view of your symptoms seriously and who wants something better for you than this.

With so much of what you've said I have been there and done that and FELT that. No one should make you feel like a timewaster. You have real symptoms that are significantly and measurably affecting your life in a negative way. A good doctor would take you seriously. We don't have time or bowel enough to waste on doctors who aren't good.

There are two other red flags that hit close to home for me - relying on pain killers and eating very little. It's never been good for me or the course of my disease when I have fallen back on those things. I feel like those are the Crohn's equivalents of being on the retreat and generally speaking those of us with severe disease must always be on the attack medically. But I hear that you are exhausted by this...I know that feeling. I call it Crohn's fatigue. I feel like it's a very real relation of battle fatigue because Crohn's so often feels like a battle we must fight everyday. The irony is that we usually have to fight hardest when we are at our sickest and least able to fight, and somehow we have to find the energy from somewhere. I'm really new to this forum but I think from your post that you are in the UK and if that's the case and there is a way to chat or message privately I am happy to share my experience if it would help you find better treatment. I have been doing this for a while and if I can at least help someone avoid the experiences I wish I had avoided then at least it will all have had some purpose!

Finally GAAAAAAAAAAAHHHHHHHHHHHHHH when will doctors stop fobbing off our symptoms and dismissing them as "in our heads"...my first diagnosis was "stress", only problem was I wasn't stressed...oh and I actually had Crohn's.

 

[Glenn]

Doctors, unfortunately, go through as much trial-and-error process as any of us. They apply best educated guess. Every person is unique and just because one person reacts positively to one type of drug doesn't mean that another would have the same experience. It seems that Infliximab doesn't work for you. How about trying out Entocort instead? Yes, it is a steroid, buy has some of the mildest side effects of any drug, and certainly much much less than prednisone. With me (I've been on and off it for 8 years), it has so far had zero side effects. Recently I had a very serious flare-up where it didn't do so well, but typically it helps. Also, try to take probiotics on a regular basis. It changes the ratio of good bacteria-bad bacteria in your gut in favor of the good guys.

 

[Racoon2000]

Thank you so much for your replies, it means so much and helps to comfort me to know that I am not alone in how I am feeling right now, but also so very sad that so many of us are in the same frustrating position. I used to be so active and positive - it all feels like its being slowly stripped away to the point where I am struggling to recognise myself, both physically and emotionally. I am so very worried about being labelled a depressive and overly emotional by my doctors. I have a background in nursing and psychology and this insight seems to have become my enemy right now. I understand how their systems and processes work but when you are the patient it is enormously frustrating when they need more clinical evidence to make a decision. Feels like my body is fighting against me and then behaving itself on the days I have tests done.
24601 - I don't know how this forum thing works so well but your support and words have really helped me out today and I would be interested in messaging you for further advice, just don't know how to. Thank you. Yes I am in the UK. My hospital is the only main one in my NHS Board area. Another opinion would have to come from a different hospital in a different NHS Trust area so the likelihood of requesting this is unlikely unless I opt for private treatment which also involves travelling a long distance, as well as the financial implications. The consultant who did my scopes is meant to be the IBD man (in the words of my IBD nurse) and I have a feeling his words and opinions are gospel. My named consultant, who I have only met once, is off until the New Year - I usually see the IBD nurse - he was the person I saw to give me my diagnosis. I fear now that they won't take me seriously now I have the potential 'IBS' label. Frustrates me that not everyone can see outside their own opinion or know when to say 'I don't know'.
I decided to make an appointment with my GP for Monday. He has been quite supportive over the past few months and seems to see the bigger picture. I just hope that they don't shut the door on me now that the results of the scopes show it's technically under control. I am relieved to hear someone else say that it obviously isn't and I hope the GP will think this too when I go with my arm long list of problems and symptoms.
I am worried about my lack of food intake and also the drugs too. I am VERY aware of the potential to become reliant upon these and so I limit my usage and feel guilty when I do need to take them. When I do though they work and I do feel better. It's like someone lifted the pain and I feel like I used to pre-Crohn's. Is this being addicted, or just that they work to alleviate my pain and I feel better for a little while. I know I can't go on like this and I know that something is going to give soon. Also, am I right in thinking that even though the scopes were clear that it doesn't mean it's all healed and fixed? It could come back - this worries me about coming off the Mercaptopurine as a 'wait and see' temporary measure.
I feel like I am questioning everything - this disease and all the baggage that comes with it has really altered my sense of objective reality and my normal goalposts are moving on shifting sands, so to speak.
It's exhausting, frustrating, terrifying and agonising to be in a place where you feel so unwell and ill and like nobody wants to help.
Thank you all again for all your words and stories. This forum and other internet support pages have been like a life line for me. Family and friends try their best but it's only other IBD'ers that can understand or relate to how I feel, the journeys we go through and the everyday battles we must face just to get through the day.x
P.s - is there a quick low down on how all these extra bits and pieces work on here for adding things, messaging etc?

 

[Trysha]

Hi Raccoon
Welcome to the forum.
You will find lots of helpful information in these pages .
At the top of this page you will see headings that lead to any information you are seeking.Just click on the heading appropriate to your needs.

Just a thought----codeine has been implicated in causing abdominal pain.
It can be quite severe and having experienced this to the point of fainting with the pain, it is possible it happens to others.
I was also on Remicade which worked well for me till I started reacting to it.
Once the codeine was stopped most of the bad pains went away at that time.
This reaction is documented in medical journals and worth your consideration.
There are some studies reported that suggest IBS is a stage of IBD but obviously this needs more work.
It is too bad that it become a convenient catch all ., and one that none of us like.
I have IBS as well as crohn's/
It is good if your crohn's is showing a remission but maybe there needs to be further investigation if your symptoms continue.
I have found heating pads and hot water bottles help my pains, and since drug reactions have occurred I am afraid of taking anything.When I have to it's two regular strength
Tylenol (Paracetamol) which I find helps. Can be desperate though sometimes, so I can appreciate how you feel
especially with a young family to care for.
It sounds as if you have good rapport with your GP, most important because he can do so much for you and find another GI if necessary.
Feel better soon
Hugs and best wishes
Trysha

 

[24601]

I sent you a private message. I hope you can read it! I think you will see a box in the top right hand corner with a link to private messages when you are logged in, as well as of course, I hope, getting sent an email notification!