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Looking for anyone that has suggestions or been in a similar position, as trying to work out what to do...!

I have had a jPouch for almost 10 years now, after being diagnosed with ulcerative colitis and having colon removed the previous year. My arthritis started about 6 years ago.

I have had a swollen knee for 6 months now (it always tends to go more for the knees!). My knee did it’s usual thing of swelling up in December, until I needed it drained and injected with a steroid after many days of not being able to walk (which gives about 10 days relief), then came back again and was drained/injected again in January. I also tried steroid tablets for a week, which also helped for a few days. Since then, it has constantly been swollen, to varying degrees, e.g. at it’s best, it is just a lump at the back of my knee. I’ve never had it quite this persistent before, and wonder whether it is a symptom of the cuffitis I was diagnosed with last month. I’m unsure whether I still have this, as have taken prednisolone suppositories for 10 days, and although get bleeding at random times in the year, I didn’t have any symptoms when I was diagnosed (apart from just exhaustion and feeling slightly sick for the last 6 months daily, which is getting worse (it is like when I had UC in the early stages, as feels better when I eat something), and slightly harder to empty pouch at times – feels like straining). Has anyone found they had chronic arthritis until treating the cuffitis?

My knee at the moment is back to being very swollen and can’t put any weight on it. It is very hot and painful!!! I am guessing that the swelling won’t go down without intervention, as is so large. However, with only being allowed 3 steroid injections in a year, I only have one more until December, so worried about using it up! My rheumatologist is on long-term sick leave, and after talking to another specialist, they said they would drain and inject the knee if I want it doing next week, but am concerned that it will just swell up again and won’t have any injections left! I have just started an IVF cycle, so am aware that for the next month, the remainder of the drugs for this are likely to exacerbate the inflammation (and think the lactose in the initial tablets I took for it, have made my knee worse – seems to be a trigger for some reason - I don’t consume any dairy or gluten due to noticing this in the past).

The rheumatologist on the phone agreed that I need to tackle the UC if it is still there, to get the arthritis under control and that my GP should refer me to a gastroenterologist locally, as only have a surgeon at present (and still trying to get hold of 3 weeks after his secretary said she would call back with advice - am assuming she is on holiday or off ill too!!!!). Worried this is going to take months though for an appointment to come through, and conscious that there might be something wrong inside, that is causing the cuffitis/arthritis, after reading cuffitis can be from a fistula etc?! Would it be really obvious from having other symptoms if there was something causing the cuffitis?

My GP is happy to help, and told me to let him know if he can do anything, but not heard of cuffitis before. Is there anything I can ask for, tests or medication that he could look into, that could help?

Finding adequate pain relief is a problem at the moment. I am taking regular paracetamol, which isn’t doing much, and means I can only sleep a few hours at a time. With being less than 3 weeks before embryo transfer, I am not sure what drugs are sensible to take... or even whether there is anything I could be taking to reduce inflammation to improve my chances of the IVF working!   I’m on sulfasalazine, after restarting this in January (had stopped it for 18 months in the hope I could live without it while trying for a baby!).

Apologies for the long post! Thanks!  

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Jane, I'm sorry you're going through this. Do you have a clear diagnosis for your knee arthritis? It could be caused by the same underlying process that causes the cuffitis, but I can't tell from your description if that's your doctors' current belief. 

I don't think a fistula is likely to be involved, and it doesn't sound to me like you have a structural problem with your pouch. It just sounds like cuffitis, which can be miserable, and (possibly enteropathic) arthritis. You really need a good gastroenterologist, I think, and a chance to discuss options with your rheumatologist. 

Inthe meantime have you tried icing and elevating the knee? It might help. Also, one good thing is that sulfasalazine appears to be reasonably safe in pregnancy.

Good luck!

Thank you so much for the reply Scott! Yes, it was diagnosed as enteropathic arthritis straight away, with having had UC. I think you are right in saying that it is caused by the same thing as the cuffitis. My doctor doesn't know anything about cuffitis, so I think it will be a case of waiting till I get referred to a Gastroenterologist. It is really good to hear that there might not be anything else happening! I think I just started overthinking things, with it going on for 6 months, and feeling increasingly nauseous. I am sure that is probably more normal for it to last that long than I think (I guess things always seem worse, when you are living through them - I bet when I reach the other end of this and look back, I won't think it was all that bad!)

I am applying ice and using a compression bandage (for as long as I can tolerate!), and sitting leg on a pillow. I have such restricted movement with my knee, that I can only place it in certain positions at certain times (the fluid seems to move a little every hour or so!). Shame I'm such a fidget! 

Thanks again  

Hy. I had the same problem. After my j pouch surgery arthritis hit me hard causing pain in my knee, both hips and shoulders. They put me on corticosteroids / small dose/ and it get better. Everything but my knee. For one year I had bad day, using clutches to walk had several punctions. My knee was swallen a lot. Nothing helped. Then my reumathologist said I need ateroscopic cleaning and I went to orthopaedist. He look at my knee and said I need synovectomy becouse my synovia is in flame and can' t be treated. So I went to surgery od the 1st of March this year. My knee is better I'm going on fizio and clutches are past. It still gets swallow but just a bit. I hope it will be better and better as time goes on.

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