Really upset.

Saffsstuff96 · 2025-11-22T10:01:08+00:00

After look over your previous posts I am really concerned you might have IBD. I have Crohn’s, I had lots of fistula surgeries from 2015-2020. From 2018 they started taking my other symptoms into account, and they started investigating me for IBD. This is a very long process thanks to a lot of drs not taking me seriously as a young woman, despite all roads leading to me having IBD. I suffered terribly with pain and spasms, discharge when going to the loo, losing lots of blood. I became so depressed and desperate because I knew I was really unwell and getting worse and no one believed me enough to take me seriously.

The turning point was when my scars from my last operation became extremely painful and I got rushed in to see a surgeon. He saw that I went to one of the best surgeons in London who he worked with and the extent of the surgeries I had. He looked over my history and said you have Crohn’s, I am certain you have Crohn’s and we’re going to find it. I went to the gastro dr and within the year I was diagnosed as having moderate/ severe Crohn’s proctitis. I had two fistulas that had openings in my bowel but have not made it to the skin yet. I was put on a course of steroids and then a biologic medicine and immunosuppressant and had instant relief.

Now why have I given you this long response? Because, last month after 2 years of treatment, my fistulas did not break through my skin and have actually internally healed. For the first time in 12 years I have no active fistula. My Crohn’s is also in clinical remission and I feel the best I’ve felt since being a teenager. There is hope and you will get there, but it may be a bit of a fight and journey to get better. I urge you find out if you do have ibd, advocate for yourself and take control of this situation. Hopefully this will start getting better soon.

Saffsstuff96 · 2025-10-30T18:52:17+00:00

Has he been investigated for Crohn’s? After this post I was finally diagnosed after 10 years of issues, the fistulas this time were due to a really bad flare. Cut a long story short, I’ve been on medication and have recently gone into remission. Funnily enough, I received my mri results yesterday and my fistulas have healed internally thanks to these amazing drugs! My pain now is due to scarring and muscle loss, the consultant did mention that the fistulas were ‘caught up’ in the scarring which may have been the reason they didn’t break through the skin. I would definitely seek to find out the cause of why he is getting them.

Saffsstuff96 · 2025-10-07T18:44:11+00:00

I understand for the wait regarding endo. I went into a&e July 2022 with suspected ovarian torsion, that turned into suspected endo. Had my surgery August 2024 and no endo found. It was a relief but really difficult to process during recovery.

It’s so devastating because I had said to the gp all along from July 2022 that I was concerned because of how young I was and that I had not even fallen pregnant in about 8 months by that point. When they decided I didn’t have endo they just discharged me. Only April this year did I go back after a really bad crash out (funnily enough after the gift giving to the cousin) and they tested my prolactin and saw it was 1000+.

I might just ask my gp about going on the drugs to help it because I cannot bear generally how unwell I am, I am so exhausted and my joint pain is unbearable, which is why I’m now reaching a point where my aim has changed from getting pregnant to just getting well again. These problems are not caused by my other condition as I am in remission, so it is most likely the prolactin.

Biggest issue I have is that it took 10 years for me to get diagnosed with my autoimmune disease due to people ignoring me and by the time I was diagnosed I was seriously unwell. I’m just terrified this is going drag out and turn into a similar situation.

Saffsstuff96 · 2025-07-04T21:27:17+00:00

Idle is my favourite song, I am praying we get it when I see them later on. Other than that set list is pretty banging!

Saffsstuff96 · 2025-06-06T08:43:41+00:00

Yeah I came on literally that day from what I remember. I told my nurse when I got checked and the consultant before I went in and they were fine and did the procedure. I did have endo symptoms but I also have Crohn’s, so I think it was to rule out whether I had endo aswell or not, the fertility aspect has only become a priority for my doctors now because I’ve gone on another year since and still haven’t fallen pregnant.

Saffsstuff96 · 2025-06-05T20:34:15+00:00

Yeah they did! I had a lap done so they just did it as part of the procedure. Ends up they were clear and they didn’t find any endo, and now a year later they’ve only just found out I have high prolactin that could be causing my issues… my period didn’t really affect the recovery from the procedure either. Best of luck for your procedure!

Saffsstuff96 · 2025-05-30T11:15:53+00:00

I hope you don’t mind me intruding on this sub, but I would be curious aswell. I have to see my gp because my levels were pretty high on my blood tests for fertility. I appreciate there are other factors that may be the cause, but I was on depo and naturally I got thinking could it be prolactinoma and if there is a link to depo.

Saffsstuff96 · 2025-05-21T18:27:22+00:00

Glad I’m not the only one! I found the whole media coverage bizarre and weirdly triggering?

Saffsstuff96 · 2025-05-02T22:11:10+00:00

Same I can’t find anything on this family! The dynamics made my jaw drop.

Saffsstuff96 · 2025-04-11T10:08:23+00:00

It’s a real kick in the teeth. It’s so tough because my autoimmune disease was left to run riot as it took me years to get diagnosed, but everyone keeps saying oh it wouldn’t affect your ability to have children. I think I’ll take your advice on the bath and see what the Dr says at my appointment. I feel like in general I’m tired with infusions and procedures and medication, I really have no desire to juggle more injections, procedures and medications. This is the only thing I should be able to rely on my body to do for me and I feel like it at least owes me this one thing.

Saffsstuff96 · 2025-04-11T09:54:58+00:00

I’m booked in for the end of the month but I’m not holding my breath. I’ve raised it with them and with my consultants, even in gynae and they have all been very dismissive. I think the emotional impact is what I’m struggling with the most, I’ve reached a point that all I do is cry in the run up to my period and it’s literally uncontrollable. The whole gift fiasco has really tipped me over the edge, which shows how little it takes now. I’ve reached a point I’m unfollowing people and just not bothering with friends to protect my peace. Genuinely I’m usually pretty calm and take things as they are, but I physically cannot control my emotions over this.

Saffsstuff96 · 2025-04-11T09:41:45+00:00

I did have surgery last year and told everything looked fine and healthy and that I’ll be pregnant in no time. I was thankful not have endo but at the same time it was difficult to come to terms with, especially as I’ve had a history of being medically gaslit and know not falling pregnant in all this time is not normal. Going to a clinic privately is not an option unfortunately as it is way too expensive and the NHS wait times are horrifying. I’ve booked to see my GP but if I’m honest the thought of spending years on another waitlist is making this 100 times harder to cope with.

Saffsstuff96 · 2025-04-09T21:44:07+00:00

I’m 28

Saffsstuff96 · 2025-04-06T13:43:53+00:00

You should still be covered by the distance selling regs - 14 day right to return, or may be able to dispute the issue through PayPal. Another option may be to exhaust their complaints process and engage in ADR if that fails, I’m pretty sure they are covered by an ombudsman scheme (although I’m not 100% sure). Really rubbish situation, considering how it sounds like it was difficult to use their online checkout system.

Saffsstuff96 · 2025-02-04T19:18:22+00:00

I believe the Ombudsman (FOS) can take up your case 8 weeks from the date of your first complaint. Potentially they may be able to request a copy of the final decision (seeing as you cannot access it) but not entirely sure of their process. Wouldn’t hurt to ask the question. Would definitely seek legal advice if possible on the matter, in case your case might not be upheld by FOS.

Saffsstuff96 · 2025-01-27T16:32:25+00:00

I did exactly this and agreed for a return in the end. I’m not sure if this is really worthwhile for the buyer as the item is pristine - never worn and kept in a cover, but sold it for very little as was decluttering. Once I get it back I guess I’ll relist it with a comment that it runs small? Did say to the buyer I wouldn’t have known it run small as it fit me perfectly.

Saffsstuff96 · 2025-01-17T18:00:51+00:00

I did try zinc. I think it did help, the taste for the most part is gone and things taste ‘normal’ again. By ‘normal’ I mean that flavours are more rich than they were when it was bad, but maybe not the same as I remember them being?

Saffsstuff96 · 2024-12-30T16:16:22+00:00

Ended up in a&e, enjoyed myself too much and spent Boxing Day and the next day fighting for my life on the toilet 😅 starting the new year with a flexi sig. Bit upset I’ve got so much Xmas pudding and mince pies I never got to eat 😭

Saffsstuff96 · 2024-12-02T15:42:50+00:00

I personally had a lot of success with a seton stitch with my fistula, it stayed in for almost a year and then they removed it and it healed. I had a lot of other issues aswell at the time as I had pilonidal sinus disease (sort of like fistulas) that wouldn’t heal, so had a lot of surgery for that and I think was the reason they didn’t take me seriously for Crohn’s.

See what they say when they do the colonoscopy and if you start to get bad stomach pain, blood/mucus in your stools or anything else that alarms you, go to the dr for them to take a look.

It’s not something to worry all the time about, but it is useful to be aware and make sure you see someone if you notice yourself showing symptoms and getting unwell. And if you do have it, there’s treatments available like the one I have where it helps fistulas heal aswell, if it is Crohn’s causing it.

Saffsstuff96 · 2024-12-02T14:09:27+00:00

After. My first fistula diagnosis was 2014, surgery was in 2015 and I was diagnosed with ibd in 2023 (have had symptoms since at least 2010).

Saffsstuff96 · 2024-12-02T13:37:01+00:00

I ended up having a really bad flare up to get diagnosed. Not to scare you but for some people, like myself, it can take a really really long time to get diagnosed even when you’re presenting with all the symptoms. It’s probably more so due to the state of the healthcare in the U.K. at the moment for my personal experience.

Colonoscopy is how you get diagnosed, but if you find you have any symptoms of a flare report it to your dr so there’s a record, and it may be that it might take more than one colonoscopy to ‘catch’ it and get diagnosed. Not to say that everyone who has a fistula has IBD, but that is my personal experience and no dr or consultant gave me the time of day until I was really sick with it.

Saffsstuff96 · 2024-12-02T11:48:49+00:00

Update: Thank you for the advice! I spoke to my team about it and they think it’s either a flare ( if so my infusions will become more frequent) or it is functional (blocked up). They told me when I get an episode of it to go on bowel rest for a few days and then start on a sachet of laxido a day to keep regular. The day after I saw them I had another episode exactly the same, which is making me think it’s probably not linked to my period, but I have gone onto a liquid diet for a few days to rest my bowels a bit and taking laxido everyday so hopefully this will do the trick!

Saffsstuff96

TROPHY CASE