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Not IBD at First, Now it is IBD

Good Afternoon everyone,

I stumbled upon this forum out of desperation of support. I have had nothing so far but I will explain how I got here.

About 5 years ago I started to experience mouth ulcers these would come and go and I thought nothing of it. I thought maybe its something to do with my asthma, the inhalers i took. A couple of years later i noted that the ulcers were getting worse staying in my mouth. As one went 4 more would appear. i tried everything to get rid of them nothing would work. At the same time I had noticed feeling tired more and more than usual my eyes were red like grit in them. then the toilet problems started. every time i would eat i needed the toilet soon after. some times i would go up to 6 7 times a day. my stools gradually changed from normal to mush as i call it now. I went to the Doctors who did a test and referred me to a consultant at kings college in london. The annoying part with kings is that they would do a test and wait almost a year for a follow up with another test. so past 4 years all i had is 4 tests and follow ups. At this stage they found nothing. said it must be some sort of vitamins disorder and gave me multi vitamins and difflam. They made out that i was a complicated case and nothing more could be done. I then moved to kent during covid and my symptoms continued to get worse to a point I developed a sharp dull ache in the the lower right hand side of my tummy. I still had ulcers in my mouth. I had brain fog, i was tired all the time but this pain in my tummy was building so took my self to hospital. They did a CT scan with contrast thinking it might be my appendix when they called me in and said they found inflammation in my intestines. I thought they actually found something and its not in my mind. They referred me to the specialist in Kent where they clinically diagnosed me with Crohn's disease.

Although this is a weight lifted off me its taken 5 years to get to this point. so roll forward 4 months I am still suffering the pain. so far they have done another CT scan, MRI and countless X rays which all confirm the inflammation between the small and large intestines. I am on prednisolone which i am unable to drop down to more than 4 tablets before the pain increases to an unabideable point. I have since been admitted into hospital with the inflammation and have had 3 failed colonoscopy due to pain problems. I am due another one on Monday 3rd July. I am hoping it will be successful. as they need to do a biopsy. My health as deteriorated so quickly the past 3 months that its possible it could be cancer which is why they want the biopsy. However they are 90% confident its crohns.

I am only 43, my mobility is down to 20 meters or less, I am unable to walk far without the pain building. I have to wear nappies due to accidents happening both day and night. I have my wife helping me wash, cook and help me around my own house. This illness has physically and mentally pushed me to the limits. I have been feeling so down at times. pain gets to a point where i cannot focus on anything. The Doctors will not prescribe me stronger pain killers incase it masks a blockage. I have been approved for the biological infusion but they cannot start me on it till i had my biopsy.

I feel like they keep pushing me with all the meds but i have not had any support, anyone that newly diagnosed with crohns appears to be females in their early 20s and i am sure there must be others like me in my 40s and later with it. I have since applied for the PIP and blue badge but my blue badge got rejected so I have had to lodge a complaint. They ignored the fact that i applied over my mobility. They rejected me saying that a blue badge is not to get to the toilet quicker and that i can have a radar key for that. I never mention toilet problems to them which is a little strange. I am awaiting the outcome of my pip. Also to note I do have severe asthma and take a biological injection for this too

So in summary My consultants believe over 90% that i have crohns disease, all tests so far show the inflammation and i am dependant on steroids. I am also on long term sick and have difficult mobility with a walking stick. they now put cancer in my mind though i doubt it is this otherwise the steroid treatment would not fully work??

I am hoping some point in July I get to start the biological treatment and hopefully at this point I will get some sort of normal life back
Hi @djgeeks ! What you have described to me sounds very very typical for Crohn's. Definetly do the tests, and listen to your doctors, but it doesn't sound like cancer at all.

While you are waiting for a biologic, there are many things you can do for yourself that helped me and many folks here substantially. But keep in mind Crohn's is not the same for any of us, and always prioritise listening to proper medical advice from your doctor.

1. Diet: this is where you should start, a simple elimination diet and symptom monitoring could take you a long way. A dietetitian should be able to help. Some diets that a lot of us have used as a starting point: EEN, CDED + PEN, CDED, IBD-AID, SCD. Research these options, although as you sound quite inflammed, and wanting to transition off pred, and potentially dealing with a partial blockage, probably giving EEN (exclusive enteral nutrition using a formula) a shot would be your best chance. You can find many studies evidencing above dietary approaches and their efficacy in Crohn's disease, but they require serious commitment from the individual. Even just cutting down on processed food and sugar helps a lot of folks, but in your case you need to be especially careful with fibres

2. Lifestyle: this is more for symptom relief, but a heating pad helps a lot of folks here, as well as hot baths, relaxation exercises - meditation (there are many great apps), yoga, listening to ASMR or lofi, stuff like this really helps! Find something that is able to relax and distract you, as actual pain intensity depends a lot on how much your mind is occupied - not just the other way around. Taking walks may not be an option right now, but I still strongly encourage you to try and stay on your feet as soon as you can - once you reach the stage of not getting our of, or at least around your apartment, things will be going downhill. Quite a few studies have proven that, while stress does not cause Crohn's, anxiety can cause, or worsen a flare-up with someone who already has Crohn's. So try using this to your advantage, because it also means by controlling your mind, you will have a better chance of getting your disease under control.

3. Supplements: many folks experiment with many things here, to me VSL3 probiotics seemed to help, but a lot of others didn't, some of them even seemed to make it worse - so while it seems very tempting, I think this should be the last focus
@djgeeks and of course in your case, there might be some partial obstruction going on which has its own dietary requirements - what did your scan results indicate in this regard? I am confused by not being able to do colonoscopy due to pain, are they giving you proper sedation for it? Maybe the actual reason is some obstruction so they cannot pass the tube through but that in itself could be biopsied I believe and is already quite a good indication of ongoing Crohn's?
Sorry for the delay in the response. so I have had a confirmed Diagnoses of Crohn's Disease. They have started me on Azathioprine 50mg 1 tablet a day for 14 days then moving me to 4 tablets a day after 2 weeks and a blood test. I am due to start biological injections in 3 weeks. my crohns is quite severe at the moment so I guess these doses will help get on top of the inflammation. I have read that Azathioprine is quite a strong medication i expect i will feel the side effects at some point soon but i guess the benefits will outweigh the side effects. I am glad its not cancer but at the same time i feel like i had to fight to get this treatment started