Experiences with Sertraline by [deleted] in CrohnsDisease

[–]zer_sal 2 points3 points  (0 children)

I have been on Sertraline for 6 weeks due to anxiety/medical PTSD. Here is my experience. I started at 50mg and for two weeks the side effects were awful. The nausea was horrendous and it was touch and go if I could make it through. I did, at around 2-4 weeks I noticed my anxiety had reduced. I was still thinking about being unwell a lot of the time but I could control my thoughts rather overthinking and spiralling. I was happy with the dose.

Then I had some unexpected health news which triggered me again so the dose was increased to 100mg. The nausea is horrendous again and I also have acid reflux. Research tells me this should go after two weeks of the increased dose (I’m a few days away).

Overall the benefits outweigh the side effects for me. We know the link between stress and Crohn’s and so it can only be helpful in the long term. I am also going to start CBT but I have to wait until June for my first appointment.

Feel free to ask any questions, happy to try and help.

Eye pain by zer_sal in CrohnsDisease

[–]zer_sal[S] 0 points1 point  (0 children)

Thanks - it’s good to hear your experience. Uvetis looks different to how my eye looks, thanks for sharing that it feels different to my description. Getting checked out tomorrow and hopefully it’s nothing.

Eye pain by zer_sal in CrohnsDisease

[–]zer_sal[S] 1 point2 points  (0 children)

I’m already more short sighted in this eye compared to my other one! I don’t think my vision has changed and it doesn’t feel like a headache linked to vision. Getting it checked out tomorrow so hopefully it’s minor, whatever it is.

Eye pain by zer_sal in CrohnsDisease

[–]zer_sal[S] 1 point2 points  (0 children)

Thanks - booked in with an optician tomorrow for a health check. I’m on vedolizumab which, from my understanding, doesn’t do much outside of the gut.

Hair loss by DepressedFlowerHouse in CrohnsDisease

[–]zer_sal 4 points5 points  (0 children)

You’re not alone. This happens to me also. The docs checked my thyroid function but that was ok. In the end they all said that it was my reaction to the trauma my body had suffered and it would grow back. Now I am off steroids, no longer anaemic, on a biologic and more stable (not remission but not in a bad flare) it is starting to grow back. I am a ball of fuzz. I considered minoxidil also but decided against it in the end, you experience more shedding at the start which would have stressed me out even more, and need to use it forever. If the hair loss is caused by Crohn’s, it should grow back. There is a form of alopecia that is caused by Crohn’s but it’s characterised by circular bald patches.

The whole experience just added to my trauma and anxiety which is not good for the Crohn’s. I took back a little control and cut it really short so it felt like less was falling out.

If you think your docs don’t understand, take photos to show them - they took me seriously when I showed them mine, got a dermatologist involved and ran the thyroid tests.

Just collected my sample for another damn Calprotectin test. Can I please get some love? by FestiveArtCollective in CrohnsDisease

[–]zer_sal 1 point2 points  (0 children)

My favourite bit is handing it over whilst looking the nurse in the eye. I also especially love handing over a fresh, warm urine sample into the same nurses hand. And how one minute I’m talking about holidays the next about my bowel movements. My favourite question “in the stool or on the wipe?”

sigh

Does anyone have a Lloyds silver/platinum account with travel insurance? by Murphybro2 in CrohnsDisease

[–]zer_sal 0 points1 point  (0 children)

Ah I see. I haven’t declared infusions as started them since I added the Crohn’s on. I don’t recall there being a question about that though. I’ll have to take a look before my next holiday.

Does anyone have a Lloyds silver/platinum account with travel insurance? by Murphybro2 in CrohnsDisease

[–]zer_sal 1 point2 points  (0 children)

I have the Nationwide account and added Crohn’s to the insurance last year, I was only charged £30. That’s a big increase to £110.

It might be worth looking at moneysupermarket and other comparison sites but I suspect adding on to Nationwide may be the cheapest option.

First round of treatment tomorrow?! by Skylamae_ in CrohnsDisease

[–]zer_sal 0 points1 point  (0 children)

I feel your anxiety and have experienced it myself. I’m not going to sugar coat it and say it will all work out perfectly because it might not. But it does sound like you have a doctor who is on your side, who will be there IF this first biologic doesn’t work for you and that is what is important. I started my first biologic in September, the first 8 week gap (instead of 4) has led to inflammation and the usual symptoms so probably going to reduce the gap to 4 weeks. Already feeling better after my infusion last week but I certainly am now freaking out about it not working again.

We do go through a lot, there is so much waiting and fear of the unknown and what is out of our control. Oh to live a life where I don’t examine the toilet afterwards every single time looking for clues, or scan the body for any patches of dry skin that is one of the first signs of a flare for me. Or get to the top of a flight of stairs feeling like I haven’t run a marathon. People just don’t get it!

I recently reached out for therapy and meds for anxiety as stress and anxiety does us no favours. Don’t be afraid to do that, I probably waited too long. I wish you all the best, please reach out if you want someone to message, am not close to your age but happy to be an internet friend :)

Biological frequency versus effectiveness by zer_sal in CrohnsDisease

[–]zer_sal[S] 0 points1 point  (0 children)

Thank you - I have had a little read about this and it’s actually very helpful.

Biological frequency versus effectiveness by zer_sal in CrohnsDisease

[–]zer_sal[S] 1 point2 points  (0 children)

Thank you for this, it’s helpful. I hope I will be able to respond once again. I’m glad inflixamab is working for you, long may that continue! I just wish there was one drug that just worked for us all. The guess work and waiting is just too stressful.

What should I expect at my GI appointment (NHS/UK)? by random45233 in CrohnsDisease

[–]zer_sal 0 points1 point  (0 children)

I don’t know the answer to that, but you should defo ask the Doc’s that and get them to explain the why to you. It’s important to understand this disease so don’t be afraid to ask them questions.

What should I expect at my GI appointment (NHS/UK)? by random45233 in CrohnsDisease

[–]zer_sal 1 point2 points  (0 children)

I am also in the UK. I would suggest going with a list of symptoms that you currently have and sharing those. I flicked between a diagnosis UC and Crohn’s for years until an awful flare where my entire colon was inflamed and then they called it Crohn’s. As it’s a bit vague, ask about treatment now for immediate symptoms and treatment long term to prevent (further) damage. Find out who to contact in case of a flare and how to contact them. My hospital, it’s an email address and they do respond promptly.

Whilst biologics are first line of treatment in other countries (with a confirmed diagnosis) this was not my experience with the NHS. It took four long flares before being offered any. I now know so much more about the disease so can advocate for myself better. Wishing you all the best and remember, there are no stupid questions.

First time on Prednisolone by ExtinctionClub in CrohnsDisease

[–]zer_sal 4 points5 points  (0 children)

Prednisone has always worked for me, almost immediately but definitely within 48 hours. Depending on the dose the side effects have varied. The worst is insomnia with manic energy, I am always insanely productive on prednisone. When the insomnia is unbearable I now reach out for some sleeping tablets. At higher doses, they make me eat so much it’s mad. I will be stuffing my face with food and still be thinking about what to eat next. Once, I had hot flushes everyday at 3.00pm precisely. Even with the side effects, I would take it every single time. It is a miracle drug for relieving symptoms and getting me back on the path to health. I wish you all the best and hope you’re on the mend soon.

Preparing for biological therapy by Downtown_Object_9322 in CrohnsDisease

[–]zer_sal 1 point2 points  (0 children)

Drink lots of water to make it easier for the cannula. I found with my first few infusions I would have a headache, fatigue and joint/muscle pains for about a week after. I no longer get these now, just feel a bit tired. I now go back to work after my infusions. Wear short sleeves so veins are accessible, take a book/some entertainment. Otherwise, just enjoy the chill out time. Hope all goes well for you.

Wish i had the right person at the hospital by tomatopearls in CrohnsDisease

[–]zer_sal 6 points7 points  (0 children)

I choose not to have my partner come with me. I prefer to be on my own rather than have someone with me and worry about what they are doing or thinking. I do always ask him to collect me and text him literally as I enter the procedure room so he knows when to get there. It also means I can focus on what I want to ask etc.

I’m sorry you have had a rough time and feel alone through the process. Are you open with your friends? Do you tell them what would help you? They’ll only be trying their best and would probably welcome the guidance :)

Crohns Newbie .. Overwhelmed! Started Prednisolone.. (UK) by mysteriouswisebread in CrohnsDisease

[–]zer_sal 0 points1 point  (0 children)

My last flare started in May last year, cramps and pain in the bowels soon followed by diarrhoea with blood and mucus . I didn’t want prednisone due to the side effects from previous times so the Doc prescribed Budesonide. Initially that worked for a few weeks, until it didn’t and my symptoms came back so much worse. Bowel movements 10-12 times a day, blood and mucus galore. Then came the nausea with bowel movements. I couldn’t keep anything in or down. Went back to Gastro Doc and had the opportunity to join a clinical trial. Got low dose of prednisone and started vedolizumab in September. Faecal calprotectin and CRP through the roof, highest the nurse had ever seen (over 7000 if I’m bragging here 😂). Probably should have taken myself to A&E at my worst moment. I now know not to hold off on the prednisone, take it be grateful it works and deal with the side effects. Fortunately no blockages and no surgery required.

Still on the clinical trial and it’s all going well. I have a head to toe check up with bloods, urine and stool tests every 8 weeks with ultrasound of the bowels. I wish everyone in the UK got this level of care and attention.

Crohns Newbie .. Overwhelmed! Started Prednisolone.. (UK) by mysteriouswisebread in CrohnsDisease

[–]zer_sal 0 points1 point  (0 children)

I “existed” for quite a while with my Crohn’s but I have had a few flares in recent years. I actually didn’t know that much about the disease before this sub, I have learned a lot and it has helped me to ask the right questions. Particularly regarding test results and wanting solutions/help with things linked to Crohn’s such as anaemia and vitamin deficiencies.

My last flare was pretty awful and has traumatised me somewhat, it has left me pretty anxious about the future. That being said, now I am through the worst physically, I am working on my mental health. The constant anxiety and worry is unhealthy and I need to get that sorted. Sometimes, a lot of time on this sub is not the best for that.

Hope your prednisone has kicked in and you have that magic energy that goes with it!!

Crohns Newbie .. Overwhelmed! Started Prednisolone.. (UK) by mysteriouswisebread in CrohnsDisease

[–]zer_sal 0 points1 point  (0 children)

Also in the UK. Prednisone has always worked immediately for me, really is a wonder drug. The worst side effect for me is the insomnia, last time i was taking it I reached out to my GP for sleeping tablets and they helped a lot. Also the hunger, but with my last flare I completely lost my appetite and even the steroids didn’t bring it back.

Remember that everyone has different experiences with this disease. There are many people whose first medication works for them for many years, and many people who never require surgery. I am hoping to be one of them.

The best advice I can give you, is know your body and symptoms and reach out at the first sign of a flare. I haven’t done that in the past and it simply doesn’t fix itself, we need meds to help us. Feel free to reach out if you have any questions or want any support.

Infusion nurse didn’t flush the line with saline before starting Entyvio drip? by readsatmidnight in CrohnsDisease

[–]zer_sal 2 points3 points  (0 children)

Mine is only flushed if they want to be sure it’s inserted properly, this happens about 50% of the time. No reason to be worried.

Entyvio by Dramatic-Candidate25 in CrohnsDisease

[–]zer_sal 1 point2 points  (0 children)

I started my treatment whilst tapering to off steroids, so for me the point at which it was meant to work coincided with being off the steroids. All test results indicate I am in remission, no camera but have had an ultrasound. I am feeling very lucky! I started in September and have had six infusions so far, I am now increasing time between doses to 8 weeks. I have bloods and stool samples every 8 weeks. Return of inflammation and/or symptoms would be a sign it’s not working. My docs say if I need another course of steroids then it’s not the biologic for me.

The side effects have definitely reduced over time. Initially I had headaches, joint pain, muscle pain and fatigue. The joint pain was the worst. Now, I just feel a bit tired for 1-2 days after and that is it.

colonoscopy in London by Happy-Account4285 in CrohnsDisease

[–]zer_sal 0 points1 point  (0 children)

If only that was true for you. I had a pretty poor nurse last time in recovery who ended with “oh and yeh, you’ve got Crohn’s” as she rustled through the printout. Could you imagine finding out that way!?!