Currently sat in hospital with the first infusion going on, going to be here five hours really, great effort from the IBD team and tea is good. Hopefully infliximab will knock it on the head. Another in two weeks then four then every eight weeks.
Crohns / ulcerative colitis sufferers
- Thread starter ColdAsIce
- Start date
Good luck!
Soldato
Good luck. Infliximab worked wonders for my crohns when I started.
Just make sure the treatment doesn't stop until your symptoms and flares are cleared. I stopped receiving it mid treatment (it was working great) for financial reasons by the hospital and I developed an allergic reaction to it upon restart years later and my symptoms came back, and the NHS have been paying the price for it over 15 years.
Nearly done; they keep checking my blood pressure and heart rate but I’m playing doom eternal so it’s a bit wavy 
Soldato
One of my work colleagues has been having Infliximab infusions and I think he's recently had his 8th/9th one a few weeks ago. He's had things pretty rough and has only had Crohns for just over a year and a half. Thankfully though the infusions seem to have done the trick for him. I was almost set to have infusions myself a number of years back but thankfully a tweak to the Azathioprine and things settled down for me.
I was getting serious night sweats several years ago, I ended up having to put a hand towel on my pillow it was so bad. Then I realised it was because I was taking my Prednisolone just before I went to sleep, switch to the mornings and I don't get them anymore unless it's a very warm night
Soldato
Good luck with the infliximab Macca!
In response to earlier posts about diet and UC... UC manifests itself in too many different ways to say that there is one definitive bit of dietary advice. I tried lots of different diets / cut out lots of different foods and looking back, none of it made any difference.
My UC history:
2007-2010 - initial diagnosis, 3 hospital stays lasting 2 weeks+ each time, high doses of prednisolone, constant flaring. Tried lots of different diets and nothing worked. Ended up on azathioprine for 6 months but hated it. Mesalazine makes me worse.
2010-2018 - I went cold turkey on meds in 2010 and was pretty much flare free for most of the year. Lots of mild flares but nothing requiring and medication or hospitalisation.
2018-2020 - Each winter in 18/19 I had weird flares with fever, fatigue and urgency lasting 2-3 months. I got diagnosed with a parasitic infection called cryptosporidium in December 2019, spent a month in hospital and had my colon removed January 5th 2020.
I'm 5 months post surgery after having my colon removed and an ileostomy created due to uncontrollable UC and it genuinely has been one of the best decisions of my life. Its not until i removed the offending organ that I realised how much it affected me!
Life with a 'bag's is nowhere near as bad as in thought it would be. If you've already had UC / Crohns for a long time, you're pretty au fait with poo anyway so that side of things is easy. I do everything I did pre surgery and feel better doing it. Never having to worry about urgency and finding the nearest loo is liberating. Also no meds ever again.
It's been a blessing during corona quarantine. We've done a few longish drives for exercise in remote places. All public toilets have been closed and that would have been an instant no prior to surgery. Now I can just get on with life.
In response to earlier posts about diet and UC... UC manifests itself in too many different ways to say that there is one definitive bit of dietary advice. I tried lots of different diets / cut out lots of different foods and looking back, none of it made any difference.
My UC history:
2007-2010 - initial diagnosis, 3 hospital stays lasting 2 weeks+ each time, high doses of prednisolone, constant flaring. Tried lots of different diets and nothing worked. Ended up on azathioprine for 6 months but hated it. Mesalazine makes me worse.
2010-2018 - I went cold turkey on meds in 2010 and was pretty much flare free for most of the year. Lots of mild flares but nothing requiring and medication or hospitalisation.
2018-2020 - Each winter in 18/19 I had weird flares with fever, fatigue and urgency lasting 2-3 months. I got diagnosed with a parasitic infection called cryptosporidium in December 2019, spent a month in hospital and had my colon removed January 5th 2020.
I'm 5 months post surgery after having my colon removed and an ileostomy created due to uncontrollable UC and it genuinely has been one of the best decisions of my life. Its not until i removed the offending organ that I realised how much it affected me!
Life with a 'bag's is nowhere near as bad as in thought it would be. If you've already had UC / Crohns for a long time, you're pretty au fait with poo anyway so that side of things is easy. I do everything I did pre surgery and feel better doing it. Never having to worry about urgency and finding the nearest loo is liberating. Also no meds ever again.
It's been a blessing during corona quarantine. We've done a few longish drives for exercise in remote places. All public toilets have been closed and that would have been an instant no prior to surgery. Now I can just get on with life.
I think i'm starting to flare now. Been coming a few weeks.. Was hoping it was a bit of IBS. but more gas. cramps mucous and i'm sure there is now blood. Mucous is sometimes pink with little bits of what look like blood clots. I've also today started having the strong get the hell out of me contractions.. The ones that make you make a noise as you expell.
I'm hoping to speak to the GP tomorrow so I can get some Pred foam. See if that can calm it quickly. Otherwise the hospital will want to do an oscopy first and then it may need full blown Pred.
I'm hoping to speak to the GP tomorrow so I can get some Pred foam. See if that can calm it quickly. Otherwise the hospital will want to do an oscopy first and then it may need full blown Pred.
Do you have an IBD team? Mine are great. Helpful and will get back to you in a day. Wasn't like that ten years ago it was one poor receptionist run off her feet you never used to get any help or answer from. Now there's four IBD nurses and support staff plus all the doctors and surgeons.
Spoke with my GP this morning, he's really good and helped push for my initial diagnosis. He understands that when I ask for help its because I need it, and trusts what I tell him.
Normally first call with my IBD team is either pred foam or mesalazine enemas, So i've asked for a script of pred foam. Then if that doesn't work I can tell my IBD nurse that we need another idea.
Oral Pred takes away my symptoms within 3-4 days but takes a while to come off.... Annoyingly i also have a knee injury that pred would fix too...lol But they dont' like giving me oral pred. Only noticeable side effect I have is Increased blood sugar which I can control by lowering my sugar intake.
It's interesting to read this having read a post on the UC Reddit forum last night:
https://www.reddit.com/r/Ulcerative...ore_symptoms_since_i_went_on_a_low_carb_diet/
Genuine question - what diets did you try, and how long did you stick to them?
I've read many instances whereby low carb/keto, gluten free, fasting etc. can all help symptoms, but ultimately people are flakey (even when they know their food choices can do harm), so I rarely trust people when I hear things like 'well, yeah, I went gluten free for a week but I simply can't give up bread so I continued to have toast every morning, but otherwise, yeah, totally gluten free'.
I think you can perhaps make associations with some foods prompting an obvious negative reaction. Beyond that, individual anecdotes about how special diets “worked for me” can easily get into woo territory.
I mean it’s not just Crohn’s where this happens, proponents of just about any diet will be found who attribute their weight loss, healthy skin, better mood, more “energy” etc... to their new meat free vegan diet or meat only carnivore diet or their eat at special times diet or their low carb keto diet etc... etc...
I mean it’s not just Crohn’s where this happens, proponents of just about any diet will be found who attribute their weight loss, healthy skin, better mood, more “energy” etc... to their new meat free vegan diet or meat only carnivore diet or their eat at special times diet or their low carb keto diet etc... etc...
When I was bad it made no difference what I ate. The only way it could be controlled was high dose steroids and once they stopped working it was chop time. Sometimes I think if your immune system is going to go into a meltdown and start attacking your guts there is little you can really do to stop it. I tried many different diets, cutting out known foods that are thought to make it worse but in the end it made no difference to the outcome...
Soldato
I did low carb / keto for about 5 months when I was doing a lot of weightlifting and it was the months preceding me needing surgery so I can definitely rule out that working for me!
I did no dairy for about 6 months and really noticed 0 difference. I was probably gluten free for about 3 months of that and I still managed to flare.
I tried a few other things... No sugar, fodmap diet, fermented foods, paleo but none of it really made a difference.
I agree that when in a flare, different types of foods passing the bits of inflamed colon will have different effects. Spicy and gassy foods definitely caused more discomfort. Foods can ease symptoms but I don't believe it can stop the underlying inflammation.
If it was diet, you would expect many more people to suffer from similar foods. I don't eat differently to the majority of people and neither do most IBD sufferers.
I did no dairy for about 6 months and really noticed 0 difference. I was probably gluten free for about 3 months of that and I still managed to flare.
I tried a few other things... No sugar, fodmap diet, fermented foods, paleo but none of it really made a difference.
I agree that when in a flare, different types of foods passing the bits of inflamed colon will have different effects. Spicy and gassy foods definitely caused more discomfort. Foods can ease symptoms but I don't believe it can stop the underlying inflammation.
If it was diet, you would expect many more people to suffer from similar foods. I don't eat differently to the majority of people and neither do most IBD sufferers.
Has your diet been affected post-surgery? Is there stuff you can't eat or drink?
Soldato
The only issue with a stoma is the potential for a blockage as the opening is obviously less stretchy and narrower than a butt hole
. There's nothing I've found yet that I can't eat but some things are more annoying in terms of the consistency they come out. Mainly vegetables, especially anything raw.
Same as with my UC, the unhealthy food tends to be the easiest to eat and digest. Meat and white carbs are a pretty staple diet for me.
Best thing with my stoma is actually being able to eat without hours on the toilet and agonising cramps. If I’m eating something high in tomato sauce like pasta I up my loperamide by 1 and all is good.
I can pretty much eat anything now other than rhubarb or apple skins.....
I can pretty much eat anything now other than rhubarb or apple skins.....
Soldato
I’ve been feeling rough this week after a lot of alcohol at the weekend. Very regrettable. This topic is quite relevant - I’m going to be going for a low FODMAP diet to see how that works out.
I don't bother posting in here much anymore. Predominantly because whenever someone has found significant improvement in their symptoms with a change in diet or supplementation, dowie is there, ready to do his best crush their argument, vehemently. You've got to give it to him, the effort he puts in to prove you wrong is astounding.
Just popped in to say hope everyone's doing well, and that being stuck in, for those of you that are, hasn't been too bad.
I'm still isolating, doctor's orders, but I quite enjoy it. Mrs is great company and we've got all that we need.
Anyone else find going to the hospital super weird? They're very good in the infusions bit, but so many people still don't seem to want to keep their distance.
I feel like I'm dodging people left and right on my way to department, which isn't helped by the fact that it's moved every time
Just popped in to say hope everyone's doing well, and that being stuck in, for those of you that are, hasn't been too bad.
I'm still isolating, doctor's orders, but I quite enjoy it. Mrs is great company and we've got all that we need.
Anyone else find going to the hospital super weird? They're very good in the infusions bit, but so many people still don't seem to want to keep their distance.
I feel like I'm dodging people left and right on my way to department, which isn't helped by the fact that it's moved every time
Awesome to hear man.