New to chat forum

Hi I am new to this so a little ignorant to how it all works as this is the first time ever I have used a chat forum.

I have been looking for a while for a good chat forum with people that have same condition/problem as me as its not easy talking about Perianal Crohn's to friends or family as they don't always understand the pain, upset and stress it can put you through.

My story started in 2010 I did the splits un-naturally and found a lump in the strangest place and after numerous consultant appointments, scans and tests was diagnosed with Perianal Crohn's Disease in 2013. I had no "usual symptoms of Crohn's so I think this is why it had taken so long to confirm diagnoses.

With doing the splits back in July 2010 causing a lump to drop which was filled with puss in actual fact did me a big favour as they reckon it was there a while and I never knew it.

I have fistula's in my back passage & one left and right. I have two open wounds one left and one right so that it can drain all the time which it does. I have sitted seton's of which there are three one left and right and one coming through the back passage these I must say give me tremendous relief and comfort as before they were put in place the pain in passing was excruciating and at times I could have taken a hack saw to my back passage.

I have never been on infliximab or Aza but on Metronidazole for over 3 years was put on ciprofloxacin which didn't help at all only give me a terribly itchy nose lol. Also take Movicol to keep things soft and even that causes me pain.

Since 2010 ad to date I have had 8 procedures some worse than others but they needed to be done to keep things right.

I find it hard to cope at times as I am sure you are all in the same boat as there is not a day goes by that there is no pain and trying to not let it get to me is hard.

Well that is my story to date and I look forward to chatting to you and reading your stories and hopefully we can chat and support each other when needed.

Thank you all so much for taking the time to read my story and I look forward to hearing from you.

yours
Saskia18

Hi. I just joined today myself.
I have had a chronic anal fissure for more than 10 years and recently developed a perianal abscess. It was drained and the fistula, as I excepted, is not healing. I just got word today that I am a canidate for surgery but of course it would be higher risk due to the Crohn's or I could try more aggressive medications. I am leaning toward the medical route but I don't trust my new GI doc, my former ones changed affiliations and the current doc is the one covered by my insurance.
I've got a lot of important decisions to make. Just lurking some of the current and older posts have been helpful so far.

Hi Alice75 my fellow newbe lol. Thanks for your post.

It is also the chronic form I have but don't have it as long as you. The perianal abscess was also around the same time it not nice at all isn't it not.

I can image all the concerns you have and reading through other similar stories will help loads and should you wish to chat just let me know. Will be thinking of you. Take great care
Saskia 18

Saskia18 said:

Hi Alice75 my fellow newbe lol. Thanks for your post.

It is also the chronic form I have but don't have it as long as you. The perianal abscess was also around the same time it not nice at all isn't it not.

I can image all the concerns you have and reading through other similar stories will help loads and should you wish to chat just let me know. Will be thinking of you. Take great care
Saskia 18

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Thank you. I do feel very fortunate I have not had this complication earlier though. I did have a fistula years ago when I was first diagnosed but it didn't cause many problems then, nothing like this one. I have been a nurse for 18 years, but have primarily cared for patients with other types of diseases. It helps to know that others have similar problems. The part that gets me down is feeling like it may never heal or come and go like my fissure.

It's not easy at all and it is an awful lot to deal with. I still have great difficulty believing that I have it I guess in a way I am lying to myself. I cant say when it will get better as I like you wonder the same and I feel when I ask the consultants at times they just look at me if I am mad in the head but its not an easy disease to live (as if any of them are). All I can say to you is that I am here and willing to talk anytime so your not on your own xx

Saskia18 said:

It's not easy at all and it is an awful lot to deal with. I still have great difficulty believing that I have it I guess in a way I am lying to myself. I cant say when it will get better as I like you wonder the same and I feel when I ask the consultants at times they just look at me if I am mad in the head but its not an easy disease to live (as if any of them are). All I can say to you is that I am here and willing to talk anytime so your not on your own xx

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Thank you

Hi Saskia18.
Sorry you're going through all this but welcome to the forum! It is good to have a place to talk to people who are going through something similar! I have stricturing Crohn's in the small bowel so I was sort of hoping that someone with fistulizing disease would pop by and give you a more knowledgeable take on your situation but I'll ask the question that I was wondering when I read your post - have your doctors suggested or given you the option of trying infliximab? Because that is a medication that can be quite successful at treating fistulas.

It must be really tough living with the fistulas and I really hope you can find some relief. I'm just a bit concerned to see that you're only on antibiotics because although some people's disease does respond to antibiotics it doesn't sound like it's doing enough to get your Crohn's under control.

I hope this forum provides support for you - Crohn's isn't always an easy disease to talk about and it's nice to have people who actually understand.

Good morning 24601 and I hope you are having a good day.

Infliximab has been mentioned on numerous occasions but never actually put on it and reading some of the posts here it would definitely suggest that I am on the wrong medication for the condition they say I have. I wonder is it the fact that I don't have any other signs of the disease!!!!!!!!!!!!!!!! Although they have done quite a few biopsies at every time they had preformed a procedure and they say there are wee nodules there that prove its perianal crohn's.

You must be in a lot of pain and discomfort with having crohn's in the small bowel as my cousin has it there and she had loads of problems.

Fistulas are definitely not easy to live with and the pain at times well you would know yourself about pain.

You are so right it is great to have others whom have the same condition as to be honest I have been going out of my head trying to understand this whole disease doctors don't have the time to listen to you and that's the good ones the bad ones just say take your meds and more or less get on with it.

24601 thank you so much for the response and I hope you have a lovely day.

Saskia 18

Hi saskia18,

thanks for your message! Yes, it doesn't seem like there is any version of Crohn's that's better than the other - small bowel vs. colon, stricturing vs. fistulizing - I think we all have a lot to deal with!!!!

It sounds to me like you have plenty strong enough signs of Crohn's to warrant treatment with infliximab. I mean I don't know how funding is worked out for Crohn's patients in Scotland but I would think that they should be able to fund infliximab for you since you've been dealing with the fistulas for so long and they haven't healed. I hope you get to try that soon or some other med!

There definitely is a lot to understand when you're first diagnosed with Crohn's - and even over the years living with it! I was diagnosed in 1996 when I was 17 so that was pre-internet and it is great that we all have access to more information online now and the ability to talk to other people with the same disease. For a couple of years really all I knew about Crohn's was limited to what my doctors told me and I can say with feeling that I certainly know what you mean about bad doctors. The first two gastro specialists I had were very much of the "take your meds and don't complain" type. They did not want to know if the meds were working and they did not care how I felt - in terms of symptoms or what I thought about various treatments. That kind of bad doctoring causes more people to live in unnecessary pain and to have a poorer longterm outcome. I really would love to see "treat-to-target" becoming the norm! And for Crohn's patients to not have to fight so hard to get doctors to understand the effect symptoms have on their lives.

I hope today wasn't too bad for you. It is so hard when you are in pain all the time.

I'm doing quite well right now - I'm 6 months past my fourth bowel resection - but struggling at times with the idea that the very low energy and the moderate pain levels I have might be the best I can achieve. I try to remind myself that I'm doing a lot better than I have been in the past but I'd really love something more normal! But then wouldn't we all?

Wishing you a good day tomorrow! :sun:

Good morning 24601 how are you and your pains today? Hope your having a decent day so far.

How did you cope being diagnosed so young?
It must have had a awful impact on your life and with little or no support!!
I had heard of Crohn's as my younger cousin has it in the bowel and he has had an awful time and needs to have it all removed but he only agreed to getting part of how bowel removed as he does not want a bag he is only 17, his mum thinks that he has had C since he was 4 but the doctors wouldn't listen to her so she reckons that the damage has been caused due to mis diagnosis.

I remember a funny story well it wasn't funny at the time but it is now., I had a check up and this consultant came in straight backed posh you know the kind., so he says to me I need to check you internally and I said oh hold on its excursiating down there and asked him to get a nurse to hold my legs and he replied no it can't be that bad so I tried again invain asking him not to do or at least get someone to hold me down but he didn't so in he goes and I jumped almost off the bed busting him on the chin and knocking the glasses off his nose ah he wasn't a happy bunny.

Another time a doctor said to me "what did I know" and my response was I know my body and I know when things aren't right.

I think your right if it was more treat-target I think there would be more proper diagnosis and right medication to treat the particular C no matter where it is in the body.

It's so hard staying positive as a good day is then followed by two-three or more bad days but we just got to get on with it.

I hope you have a lovely week end and are comfortable knowing that you probably won't be pain free but hopefully comfortable.

Take great care 24601

I love that story! It just goes to show that doctors really should listen to their patients because we do know how our bodies feel better than they do. I do hope he learned his lesson!

I once had a doctor tell me that I couldn't know that I had a fever and he didn't believe that I'd had a fever. I ran through the regular symptoms of a fever all of which I'd experienced and told him that I'd taken my temperature and the reading the thermometer had given me, which was well up there, to which he spluttered some nonsense explanation that he couldn't know whether my thermometer was correct. Pretty laughable. I mean does he only trust thermometers that he has personally calibrated? It amused me a little to think of him scurrying around the hospital checking them all. Anyway that was all to try and justify his opinion that I couldn't have had a reaction to aziathioprine. I'm not sure why he took it so personally that my body reacted that way, I'm pretty sure it wasn't just to annoy him lol and it's not like I was questioning his choice to prescribe it. I do wish that they tested doctors once a year for pompousness and the tendency to patronize and sent them for humility training if they failed.

I definitely experienced some pretty patronizing doctors and for some of them it was I think an issue for them to be questioned about treatments and test results by a 17 year old girl. It has been a big part of my life but then I see all the very young children on here who will have dealt with it for the entirety of their lives and I know how lucky I was to feel healthy for my childhood. Like your cousin I think I could have been diagnosed a lot earlier since I had symptoms from about 6 to which my GP just said 'abdominal migraines', and for a time I was quite unwell when I was 8 and 9, but in my case I don't think it would necessarily have done me a lot of good because the only treatment that I'd likely have got then was steroids. In the last 10-15 years there have been much better options - as well as the increased awareness and use of Exclusive Enteral Nutrition.

I'm sorry to hear about your cousin having it so badly and from so young. I can understand why he would make the decision he did and I hope the treatments he's on are working for him now.

Hope you've had a good weekend

Good morning 24601 and how are you today?

Hope you had a lovely week end.

Your right in so many ways about doctors and specialists they do forget and need to come down to earth at times. You would know if you had a temp and can only imagine how the consultant looked at you when you were saying this to him lol.

Would it be ok to PM you?

Saskia18

Of course! PM away!