Does this sound like Crohn's?

[MyBeloved]

History of IBS.
Erratic bowel movements.
Loose stools with some pus (sorry) for almost 2 weeks now, going between 5 and 8 times per day.
Fissure with a sore ulcer slightly above the fissure also.
Exhausted.
Forgetful.
Nausea but no vomiting.
Pain in lower right hand side of abdomen.
Rectal pain is so bad I am off work.
Weight loss in past month without trying.

I am waiting for results from samples.

Thanks in advance.

[tryingtobebetterallthetime]

Hi,

I am not a doctor but have had ulcerative colitis for over 35 years. What you describe could be Crohn's but really the only way to know is to get checked. You need to see a gastroenterologist who knows inflammatory bowel disease.

I waited months and months feeling embarrassed about my symptoms and afraid to ask for help. By that time I was barely coping with life and work. The strain of being physically ill and trying to work in a demanding professional job was almost unbearable. I remember a lunch with clients where I decided that if I wanted to get through the afternoon I could only have broth. I didn't get through that afternoon without dashing to the loo over and over. Heaven only knows how weird they thought I was, But, hell would have frozen over before I told them why I was rushing out of the room.

Having IBD is never a walk in the park, but today there are medications that can really help and allow you to live your life without the worst of the symptoms. I get an infusion of Entyvio now and it has made a big difference, and I no longer take the dreaded prednisone.

I really wish I had not been so shy and scared. There is something to be said about naming the beast and knowing what you are up against.

Try not to be afraid to get help. Yes, there are embarrassing tests and such, but they are really a flash in the pan when you realize knowledge is power over the disease.

Good luck and best wishes!

[fessmess]

Hi, sounds awful what you're going through. I also have UC and you could be describing my symptoms over the last 20 years. Only a doctor can diagnose though. Even though no-one wants IBD it is treatable and manageable. I go years in between flares and I learn all the time about how best to manage it. On the plus I feel I live a healthier life as a result.

[tryingtobebetterallthetime]

Sorry I should have mentioned this. There is a symptom called tenesmus which (sorry) is very distressing, at least to me. It is rectal pain and spasm and indicates inflammation in that area. It makes bathroom trips very unpleasant. I have found that luckily it is one of the first things to improve with treatment.

Don't face these types of symptoms alone. There are lots of people out there raising awareness. It is inspiring to an IBD veteran like me.

[MyBeloved]

Thank you both.

In terms of working, how has it been for you? I work in a fast paced, professional role and have to attend meetings every day. These symptoms, particularly the rectal pain, are debilitating and I can't see how I can work through them.

I am wairing to see a gastroenterologist and colo rectal surgeon. Joy.

I'm tired of feeling like this. It is interfering with so many things in my life now.

Sorry for being so "woe is me"!

[tryingtobebetterallthetime]

You are not "woe is me." You are experiencing some difficult to cope with and scary symptoms. Believe me, I have had many a despairing moment. But there are good times, too.

As far as work, I also had a professional and challenging job. I am now semi-retired. I have been fortunate to have work where there are always washrooms available, and where I can usually drop everything when nature calls. My employers have also been understanding, mostly. I have found that educating at least one person with a key HR role to be worth it. Some people will say don't tell them, but my experience is that it actually helps them to understand and to be accommodating.

Once in awhile I have had to explain very clearly that if I request a break it is because I really need it. I have worked in an area where I represent clients at mediation/arbitration hearings and once I had to take the arbitrator out in the hall to explain as he kept saying we could go for another 1/2 hour then break. He was understanding after I explained.

When in a flare I get very tired. I also have some pain. I have definitely missed more work than someone without colitis, but have been able overall to work and progress. I have been able to work at home quite a lot when flared. I have avoided long commutes as they simply add anxiety. Many of us with colitis find mornings the worst, with the "I can't wait" subsiding a bit in the afternoon.

No question really though that I would not make, for example, a reliable surgeon!

I live in Canada. I do know the UK has a good Crohn's and colitis society where you can get help and resources.

At this point, you really need to be kind to yourself, get the cause of your symptoms diagnosed, and then go from there. One last thing -- don't automatically assume this is your fault for eating badly or doing something else.

People are often quick to "blame the victim." I have been told thousands of time to try eating this, that or the other. A very kind person suggested when I retired that perhaps I could take better care of myself now. She meant well but it stung. If eating sawdust would cure IBD I would do it!

When in remission I eat most things. In a flare I have to eat quite a bland, low residue diet. Eggs etc.

Hope this all helps. You are not alone although I know it feels that way sometimes.

Hang in there!

[DecomposingComposers]

Working can be hard. I've been off sick for a couple of months now and due to go back next and I'm scared. I don't have easy access to the toilet and I'm starting to feel like I can't cope now.

That being said I was diagnosed 20 years ago so I have been managing. It's just getting worse now.

[MissConductUS]

It's perfectly okay to be "woe is me". It's an awful set of symptoms to deal with. And it could easily be Crohn's or UC. You'll likely need a colonoscopy to determine exactly what is going on.

I've had UC for 16 years and have been in full remission since starting Entyvio almost two years ago. The good news OP is that the treatments available today are far superior to what they used to be.

[octonoughtcake3]

Just another perspective. My DH was diagnosed with Crohns 7 years ago. The first medication he was on had horrible side effects on his joints but he changed to something else that his consultant said would work for 3 to 4 years. Now 7 years on he is still on this second medication, he has long uncomfortable bathroom trips but no urgency, he gets bloating and discomfort mostly on an evening, he does get more tired than the average person and although it does impact his life it’s doeAnt have a significant impact nor does it stop him from doing anything.

[MyBeloved]

Thank you both.
trying, it sounds as though you have managed well with your worklife. I am fortunate in that I can work from home a lot, but I also travel around to meetings, meaning no access to toilets. This worries me.

decompose, I absolutely hear you. I'm currently off work for at least another 10 days. It is disconcerting. Will you be as ble to soeak with occupational healtg upon your return?

Have just had my 5th bath of the day and starting to relax a little.

All I can manage food wise currently is toast and pasta. I normslly eat so healthily, this feeks so strange, but the thought of fruit or vegetables is turning my stomach.

[DecomposingComposers]

MyBeloved

I've spoken to OH many times. Their view is that they've done all they can and this is the nature of the job. I don't know what I will do. It might be that after this flare I'll be ok for a good while and I need to work. I can't afford to just give up. The problem is very few people actually understand what IBD is and how it can affect you. My joints are also affected now.

That being said I've had only maybe 5 flares in the 20 years since diagnosis to so don't think it isn't possible to live perfectly well with it.

[tryingtobebetterallthetime]

Traveling for meetings etc. is very hard, I agree. I too have had success with Entyvio but have to have infusions every 4 instead of every 8 weeks. When I became ill in the 1980s there were fewer treatments. Don't get me wrong, managing work is hard and there have been many times I have wanted to just pack it in. Going on some sort of disability is an option many have to take. IBD is different for everyone. No judgment here. If work is too much, cut yourself some slack. IBD is WAY more than a tummy ache!

I agree you probably need a colonoscopy. They are not that bad. I agree with most people the prep is the hard part.

I did wonder about one thing. When I finally told my GP about my symptoms, she prescribed one of the first line medications, called mesalamine. It can be had in suppositories that target the lower down inflammation. That could help with the rectal pain issue. I was able to get a bit of relief much sooner while I waited to see a GI. I don't know if that is possible in your system.

If you do have IBD you will eventually be more expert than your GP. Managing it is a team sport and you are the captain.

I never experienced any side effects with mesalamine. My disease progressed and I needed different meds.

We have quite long wait lists in Canada to see some specialists. I was fortunate to be referred to a GI who looked at my tests and then phoned me to come in sooner. I was off work for about six weeks at that point, I believe. I changed jobs soon after as I knew my very competitive law job was too much, and the long hours required were not manageable. I went into public sector labour relations work which was challenging but had much more manageable hours and expectations.

Looking back, I now believe changing job directions was one of the best things I did, and not just for my colitis. I was able to find a better work life balance and be more present for my family.

I visit the UK quite often as we have a son and his young family there now. I must say the thought of train/underground commuting with IBD horrified me. I would not want to use public transport here either. While the evidence does not link IBD to stress as a primary cause, I find it can make me feel much worse. Also a flare causes stress. Traveling on public transit while flaring is just too stressful to contemplate.

I now have a GI doc who works out of a large group practice where they have IBD nurses I can call or email. For me, having that resource was a huge step forward. I have read that the NHS uses that model, which is great. Having expert advice readily available is a relief. Much better than debating with yourself about going to the emergency room. On several occasions the nurses have spoken to the doctor and he has prescribed something without my having to drag myself to the office.

Looking forward to visiting your green and pleasant land soon and hugging my 2 granddaughters!

[DecomposingComposers]

The hospital that looks after me has IBD nurses that I can call M - F 9-5 for any help or advice. Outside of those hours I can phone and speak to the gastro registrar on call. That is a fantastic support. They can change meds, advise me or admit me. It's reassuring to know it's there.

Practicalities are difficult though. Tube, car journeys, plane travel - you always have the worry that there won't be a toilet if you need it.

The tiredness is another factor as well as the medication side effects. Most of the time I can deal with this but sometimes it just gets too much and I buckle a bit. I think it's because there is no end to it. There is no cure so we will always have to deal with it.

[tryingtobebetterallthetime]

I am going to break my own rule and suggest something soothing to eat.

I freeze the little mini bananas we can get here. Then I use one to make a smoothie with some other fruit like mango. Depending on how I feel I might add some protein powder (I buy plant based) and even some liquid vit D/calcium. Sometimes I open up a good probiotic capsule and add that. I use Kefir which is sort of like liquid yoghurt. The smoothie is nutritious and I find them soothing. I can drink them even when really flared. I also make miso soup from packets I get on Amazon, and sip on them. They have some nutrients you don't get from other hot drinks like tea, which is also soothing sometimes.

I tried to buy Kefir last year in England without success. Might try again this year.

Spinach is pure unadulterated evil to me. I kid you not, in and back out in a 1/2 hour. DH says that is not humanly possible, but it is...😧

Everyone finds things that help or otherwise. I agree that it feels wrong to cut out foods you are told are healthy. People just do not get why I will choose white bread instead of a high fiber multigrain!

I hope I am not doing what you call drip feeding. It feels good to share my experience and try to help. It also feels good to know others struggle too. IBD is a disease that is embarrassing and humiliating at times. We need to support each other.

Signing off from the beautiful and sunny (today) west coast of Canada. (DH is British born and raised.)

[MyBeloved]

You have all been incredibly helpful, thank you so much.

Spoke to my surgery who are expediting my referral. I need an ultrasound scan and colonoscopy. It will be a relief to get some answers and get to the bottom of what is going on (pun intended).

I completely hear what you are saying about public transport. I travel to meetings in my car, but I dread being stuck in traffic etc. It has taken me a long time to get where I am in my career, but it is highly stressful and I honestly don't think it is doing me much good - this 'flare' in my symptoms is far worse than I have experienced previously.

Thank you for the tip regarding the smoothie. You can buy kefir in most supermarkets now, or make your own, as a few of my friends do.

I'm glad you felt this thread has been helpful to you too, trying. It is always good to support one another. We can use this thread for exactly that, the highs, the lows...and everything inbetween.

Enjoy your evening, all, and thank you all again.

[DecomposingComposers]

You could ask your GP to do some bloods for anaemia and inflammatory markers while you wait for the other referrals.

There's also a stool test that they can do - calprotectin - which specifically looks for inflammation in the bowel. I don't know if the GP can order that (my hospital does mine) but again it might flag something and make them move a bit quicker.

[MyBeloved]

Had bloods already, only significant flag was raised serum ferratin levels - has been like that for over a year since i had abdominal surgery. Gave my stool samples in yesterday and should get results in a week they said.

[DecomposingComposers]

Oh that's good that they are doing these already.

It's a bit annoying because normal results don't always mean everything is ok but if they were abnormal then they prompt them to look more closely.

Hopefully you get some answers soon. I think that's a big part of the battle - knowing what you are dealing with. It's hard when you are in limbo.

[MyBeloved]

Yes, that is what the doctor said. Is there any link between the raised serum ferratin and IBD, do you know?

[tryingtobebetterallthetime]

It is good the tests are getting done. I was going to suggest that also.

One little story of how we can support each other. My job before I retired was a senior management/executive level in a mid sized organization.

A staff member who did not report to me was having bad attendance issues for ages. Various steps were being taken. No fun for her I am sure. Watching the whole thing made me sad as she was just not turning it around. It was a train wreck.

One day she just appeared at my office door and said I hear you have digestive issues. I am quite open about that. I said yes. She came in, shut the door and sat down. She began pouring out her heart about what to me were clearly IBD symptoms. She had told no one.

I told her that she may we'll have what I have, explained how my symptoms matched hers and really encouraged her to seek help.

Well, she did and today she is a vibrant young woman who takes Remicade for her Crohn's and no longer is on the poor attendance radar. She has been a great support to me now at my low times.

It makes a real difference to be open about things, as appropriate of course. I was very grateful for the opportunity to help her.

[tryingtobebetterallthetime]

May well have. Sorry. Autocorrect very insistent on we'll.

[MyBeloved]

You sound like you were a very understanding manager, trying. That employee was fortunate to find an ally. I am only 6 months into my new role and am concerned about this absence and what it might mean going forward.

[DecomposingComposers]

MyBeloved
I don't know about the raised ferritin. Mine is always low but then I'm quite anaemic so that's why.

No one has ever said that's an indicator but that doesn't mean it isn't. They usually look for inflammatory markers, so CRP and ESR and hb with me.

[DecomposingComposers]

tryingtobebetterallthetime

Oh I wish I had someone at work who understood like you did. It is so hard when you are trying to explain it to people who have no idea. Even silly things like needing the loo. If I need to go, I have to go immediately whereas at work I have to wait for someone to come and take over from me - that can take 10 mins. They just don't get it.

[MyBeloved]

DecomposingComposers
Thank you so much for you advice, it is so helpful. Just got to play a waiting game now!
Don't feel quite so bad this evening, but that is the pattern!
to you all.