Advice on IBD

[Buddybella]

Hiya

I was just wondering if other plp have experienced similar symptoms to me. I first became quite ill in dec last year where I woke up feeling sick, shaking and a lot of pain in my stomach. Went to hospital quite a few times in a lot of pain and they thought it was gastrorientis and then thought it was my gullstones, but then diagnosed it with Ibs flare. I have suffered with IBS for years but this was a different type of pain alot more severe and then I couldn’t eat anything at all as felt so ill with it and would be constant diarrhoea. I did a calproctin test which came back at over 900. Since then I have done a endoscopy, mri, ct scan, conosloscopy and pill cam which were all normal. They took some biopsy’s off my large bowel came with a bit of inflammation. For the last 6 months I can’t eat anything other than frozen cod, plain rice or gluten free pasta, sweet potato and carrots. For breakfast it’s gluten free cornflakes with coconut milk and lunch is shcar crackers and tinned tuna. I have tried to eat out twice in the last 6 months eating the plainest of foods but end up in the toilet a few hours later and in a lot pain so I know feel I can’t even have a normal life with my family. The consultant told me last week that even though he can’t find crohns he thinks it’s crohns as my symptoms all relate to it and because of my calproctin results and the biopsy’s showed some inflammation but not enough to diagnose crohns he still wants to start some medication on Budesonide for 3 months 9mg for the first month and then 6mg for next month and last month at 3mg and see how I get on and wether it makes me feel better. Obviously it scares me a bit from what I’ve read about them. I am also thinking of getting a second opinion before I start the meds as they haven’t been able to fully diagnose me.

Are there plp like me that have all the symptoms from what the doctor says but just can’t physically find it, he said crohns can be very difficult to find but I feel shouldn’t this it been found after all the tests that they have done?

Can anyone recommend if they have taken this med and how it makes them feel and what side effects have plp experienced with it?

Have plp also experienced this for 6 months where you can barely eat anything and how long can a crohns flare up last for?

Thank you any advice would be appreciated x

[MisSchulte]

Hi Buddybella!!

I hope that this reply finds you feeling a bit better with your symptoms and I am so sorry that you're going through all of these frustrating things! I have chrons disease and it is definitely not fun! Everything you have described sounds a lot like Chrons and I am wishing the best for you! I hope that there is a specialist that can help and I have found that Entyvio worked exceptionaly well for me!!

Sending you love and light!!

[Buddybella in reply to MisSchulte]

Ahh thank you so much for replying and I’m sorry to hear for you too. I was just wondering did you try any other meds at all l?

[MisSchulte in reply to Buddybella]

Yes! I tried EVERYTHING for IBS-C a nd IBS-D, but it never worked for me. Entyvio finally did, thankfully

[Frasina]

Give Budesonide a try; it is a steroid but without the horrible side effects of things like prednisolone...I have taken Budesonide for my IBD (I have IBS as well) and it did help. Your consultant is suggesting a tapered dose so you should see things improving in the first couple of weeks or so...

You need to have a more normal life and if these work then your team will be able to make some long term suggestions. Good luck and I hope that things improve for you.

[Buddybella]

Hi Frazina

Thanks so much for your reply, thank you tags gives me a more confidence I just didn’t want to try anything that’s potentially going to make me even worse as my stomach is so sensitive to anything at the moment. Other plp have also suggested pentasa that also treats crohns before steroid route have you tried these at all? Can I just ask if you don’t mind are you medication all the time for your IBD? I’m sure plp can lead a normal life but I’m finding it so hard at the moment to see that as mine is so restrictive. I went out with my family over the wkend for a bite to eat for the first time in 6 months and just had plain gluten free pasta and plain grilled sea bass but that eve already had alot of pain and woke up the next morning in pain and rushing for the toilet 😞 so it’s just not worth it ..

[KSbowelboy]

Hi. I had similar symptom's last December. After a few months of inconsistent bowel movements I had 6 days of chronic diarrhoea and ended up in hospital for 2 weeks. I had been completely healthy before that with never any bowel issues. My calproctin was over 2000. Had a sigmoidoscopy (Jan) and then colonoscopy (March) but nothing significant found other than some mild inflammation and a small area with ‘IBD like symptoms) but no formal diagnosis of chrons or UC. Anyway been on Pentasa 4mg a day (2mg twice a day) and touch wood not had a repeat performance since the first. Will taper off over the next few months and see what happens. I have changed my diet a bit, reduced fibre - white bread only, peel all vegetables etc but still enjoy a glass of wine a couple of evenings a week. Cut out all red meat and reduced diary a bit and no chocolate and very little sweet food (cakes etc). Sacrifice is worth it as symptoms were horrific and wouldn’t wish that on anyone. Hope that helps a little and assures you that things will sort themselves out. K

[Buddybella in reply to KSbowelboy]

Hi thanks so much for replying. Your symptoms also sound a lot like mine. I have emailed my consultant to ask about Pentasa and whether is worth me trying this before the steroids. Yes it’s so true the pain and suffering is just so debilitating at times. I guess we have to have hope, hope you are also ok.

[KSbowelboy in reply to Buddybella]

Good idea. I did take steroids whilst in hospital (prednisolone) but only for a few weeks when I was discharged, apparently they are a short term solution for inflammation and pentasa are a safer longer term solution (pentasa is one of many mesalazine based tablets, and sometimes they work differently but mine had a quick impact). What I have learnt is that so many issues can impact bowel health - stress, diet (obviously) and exercise and my consultant has stressed that as there is very little if any signs of IBD in my bowel (and we’ve both had the full suite of tests by the looks of your post) he would suggest a holistic approach (with the help of your consultants chosen medicine). Consider if there are other things in your life adding stress/concern. I’ve recently taken up Pilates to improve my strength/flexibility and back walking a fair bit and I’m sure that’s helped with the stresses of life. Good luck with your approach and hope it solves your problems.

[Buddybella in reply to KSbowelboy]

Thank you, how did you find it with the steroids did you have any bad side effects? All of the info online about it seems to be quite worrying. How have you found working when you’re experiencing a flare up I have only been able to work part time for the last 6 months where I have been so poorly with it and have no energy at all.

[KSbowelboy in reply to Buddybella]

Steroids were fine, I was on them for about 6-8 weeks with a tapering dose and I had no side effects at all and felt fine, I believe it’s a problem if one has to take them for a long time. I really wouldn’t take any notice from online comments (although I suppose this is one of them 🤔😂) especially anything from Google. I stuck with the NHS online info which is a degree of trust and accuracy to it. Work was a challenge initially (I commute into London most days) but mainly it was the anxiety that I would have a repeat of the problem but after 5 months of being more settled that fear is slowly going. I also had low energy but the doctor gave me some iron tablets (ferrous fumarate) which made me feel a lot better. Something to do with losing blood when I was poorly and a reduction in red blood cells, but I’m off them now as I feel better. Also have a look at the chrons and UC website, you can order for a small charge a key to the disabled toilets which are usually in better condition than most toilets and are usually free without the queues 🤞. Also worth having some tissue/roll with you all the time - just in case 😱. Other than that I’ve kept to a regular timed eating pattern with the (almost) managed diet so my system knows what to expect and when. Seems to have worked for me but I do appreciate everyone has different symptoms. The consultant says they will probably never get to the bottom (no pun intended) of what caused the problem but they’re hopeful it may be a one off as it’s the first time I’ve had anything like this and UC/chrons usually starts late teens to thirty’s and I’m the wrong side of that (59)

Best advice is to listen to your consultant in my opinion 👍🏻

[Buddybella in reply to KSbowelboy]

Oh ok thank you well fingers crossed for you. I had a similar situation back in 2018 although nowhere near as bad as I ended up in hospital for a week with a lot of pain however they did a endoscopy and conosloscopy and because they couldn’t find anything they put it down to IBS. How long did your flare up last for? I think mine has been going on for so long because I haven’t had any help from any medication apart from buscopan and mebeverine. Ahh that’s great about the toilets I didn’t know that at all. I will join the group. Thank you

[KSbowelboy in reply to Buddybella]

I had diarrhoea for a week then was taken into hospital and was in for 2 weeks (over Xmas 🙄), initially it was really bad (going to toilet 10/15 times an hour). When I’m hospital they found I had the high calproctin reading and treated me for an inflamed bowel with the steroids and after 10 days things slowly returned to normal and then had the pentasa for the inflamed bowel. The consultant stated that whatever caused the diarrhoea could have given me the inflamed bowel and the key was getting rid of the inflammation which can take 4-6 months to fully calm down and return to normal hence the Pentasa slow release tablets for that time period (been on it for 4.5 months now. It really has settled things down (tried to reduce dose 2 months in based on doctors advice but don’t think my bowel had received enough so went back to 4mg a day, 2mg morning and evening). Can’t understand why they won’t give you a course of pentasa (or similar). Like you I was poorly a few years back (campylobacter) and it could have been that or similar again but who knows. I would really push for a mesalazine based medicine if you’re still suffering?

[Sarah090174]

Hiya, I have had a similar experience and it took 18 months to diagnose inflammatory bowel disease. Luckily I had no pain as such but at the beginning which eased off on its own but had over a year of constant diahorrea with no root cause found. I had a provisional diagnosis of bile acid malabsorption but the test came back normal but waited 8 months for the test. When my diagnosis of inflammatory bowel disease came in July 2023 I was put on a reducing dose of Budesonide for 3 months. This seemed to help but then it all flared up again in early March this year, so am just coming to the end of a further course of Budesonide. I was also prescribed calcium and vitamin D tablets as the steroids can have a negative effect on your bones and make them weaker. I am just waiting to see how I am after the steroids. The only side effect I found of the steroids was I get hot flushed quite frequently and mostly at night. My calprotectin has been raised since April 2022 and has been up to 1600 in a flare, I also think I have slight IBS too. I am still under a gastroenterologist and dietician and take build up drink to supplement my diet due to drastic weight loss. I have a very limited diet and am very careful with food. I drink black decaffeinated tea only 3-4 times a day, water, have little diary in my diet, avoid red meats, have a few gluten free cakes and only just started on normal white danish bread. I have lactose free milk only in small glasses throughout the day and avoid any fish as this is problematic for me. I also have eggs included in a meal where possible. I mainly eat fresh cooked chicken with a little veg, do eat carrots but do struggle to digest them but am really limited with what I can eat. I am slowly introducing a more variety of foods. I tried to follow a little of the low food map diet and gluten free diet for many months. I have also started probiotics every day Alflorex which I think helps me tolerate more and a variety of foods. I rarely eat out because of my issues but my dietitian has been really good for advice. I was originally thought I may be crohns but all my tests were clear but for inflammation in large bowel. I am resigning myself to the fact I Will suddenly have flares at the drop of a hat and then spend days in the toilet and possibly only drink water for a week, I then slowly wean myself on to gentle foods. I wish you good luck with your journey and hopefully the steroids will help a little.

[Buddybella in reply to Sarah090174]

Hi Sarah thanks so much for your reply it’s very helpful, I have a call with a dietitian next week so I plan to ask a lot of questions. Your symptoms sound a lot like mine as my inflammation was found in my large bowel but they can’t really find anything else. I will try the steroids and hopefully they will help with me being able to have some sort of normal life again.

[jackdup]

I have Crohns and find a yogurt with a probiotic helps to settle things down for me. It is certainly not a cure but if I am having diarrhea I start eating yogurt daily and within about 10 days it has settled down significantly. It may or may not work for you but think it is worth a try. Good luck and I hope you get a diagnosis soon and a treatment that works for you.

[Buddybella in reply to jackdup]

Thank you I have a call with a dietician next week and will ask her about probiotic. Thanks again.