Introducing myself- 11 years with Crohn's Disease

[Toomuchtooyoung]

Hello everyone,

Have been meaning to write up my story for a while so here goes....it's a bit of a long, eventful story!

I was diagnosed at age 13 with Crohns after a few months of experiencing severe symptoms (I may have had symptoms before this but I cannot really remember as it was so long ago). Was put on steroids straight away and remained sick until I was 16. Tried various medications....mercaptopurine gave me a very bad rash all over my face, azathioprine made me vomit, did a couple of elemental diets (with ng tubes) etc. Did my gcses whilst flaring but still managed to get good grades . Things only started to changed when I started infliximab when I was 16 (in combo with methotrexate). Infliximab worked so well for me, I almost used to forget I had Crohn's disease. I almost went a bit too mad...would go out drinking with my friends and smoked for 7 years from age 15-22 (I started smoking cos I felt it helped with my stomach cramps and then just continued from there).

Towards the end of my final year at university I started to get stomach pains but thought this was just down to stress (I was working soooo hard for my degree). I got a good job and things continued to get worse. My infliximab seemed to start 'wearing off' and I became very sick before each infusion. It started that I would be ill (stomach pain, vomiting etc.) a week before my infliximab, then it became two weeks before my infusion....before long the infliximab wasn't having any effect whatsoever. My gastro knew I was ill but did nothing. He said hopefully things would settle down on their own...whatever. He didn't send me for tests for ages and when I asked him about Humira he told me it wouldn't work for me....

Anyway, long story short, EVENTUALLY I was put on Humira which worked very well but by that point it was too late. I had a massive stricture which had to be operated on. I had to have an extended right hemi-colectomy. The surgery was completely traumatising. I was in so much pain I thought I would have a heart attack after the surgery. I had an ileus and a leak at the anatomosis and they thought I would have to have more surgery to get a stoma (luckily the ileus resolved before this was necessary). The surgery ended up being open surgery as I bled extensively during the op and, therefore, my recovery period was a lot longer than expected. I was living with my boyfriend after the surgery and he found it very hard that he had to do a lot for me and didn't get much help from my parents.

A couple of months after the surgery post-traumatic stress set in and I ended up developing severe OCD- I hated the thought of germs spreading or me getting 'contaminated'. This stemmed from me not wanting to get ill again (by this point I had been badly ill for over a year). I thought if I ingested germs or got germs on my body I would get ill, the Crohn's would get worse or I would die...tbh the whole thing was so overwhelming and irrational that I'm not sure exactly what I thought would happen, I just knew I couldn't be near germs. Because there is no definitive answer for what causes Crohn's I have always been secretly worried that it may have been something I did that made me get it, I.e. something in ate, the diet I had etc. Therefore, I became very very worried about germs being on my body or getting germs in my mouth somehow. I became phobic of hospitals (because of my experience after my surgery and also because there are so many germs there!), phobic of toilets (which was totally crap given I have Crohn's and had just had half my large bowel removed meaning I needed to use the loo way more!), couldn't walk down the street normally due to dirt on the ground etc. It became very difficult once I went back to work. Using the toilets there was very difficult for me. I ended up getting a UTI which lasted for a long time due to the fact I wasn't drinking enough water (because I was scared of using the toilet). Ended up taking 7 courses of antibiotics and suddenly came down very ill with constant diarrhoea, stomach pain etc. Hd to go off work and the docs were baffled by my symptoms. All tests showed little inflammation (the Humira was working) and they had no idea why I was having symptoms. Eventually 7/8 months later, I self-diagnosed that I had small intestinal bacterial overgrowth (SIBO) after being on so many courses of antibiotics - i had asked my docs about this on numerous occasions but they just Fobbed me off. Treated the SIBO without my gastro's knowledge but by that point the docs had been messing around with my Crohn's medication and I ended up with a Crohn's flare aswell! Of course, it was a major battle to get them to change my medication to what I thought would work but eventually they let me give what I wanted a go...so now my Crohn's flare is settling and I'm on methotrexate and Humira.

Starting back to work after a year off in total. Complete disaster. I've realised from being sick for over two years that there are a lot of crap people in my life. People close to me have not been very understanding and I'm more than a bit resentful about it. I'm also resentful towards my doctors for leaving me sick for so long when, if they had have listened to me, things could have been sorted a lot quicker (and my surgery could have been avoided).

It has been great for me being able to read the forum and get advice on medication, symptoms etc. You all seem to be such a supportive community and it is good to know that a forum like this is available

Anyway, there's my story! Has been cathartic telling it and hope it wasn't too rambling!

 

[SarahBear]

Thanks for sharing your story!

I'm glad you're starting to feel better. You've certainly been through a lot and deserve for things to go well! I hope things continue to do so.

 

[Toomuchtooyoung]

Thanks SarahBear! We all deserve a break from this horrible disease! Hope research will continue to find better medications and maybe even a cure! Here's hoping! Lol

 

[afidz]

Hello, welcome to the forum!
I am glad to hear (read) that your feeling better and you are starting to return back to work. In all honesty, the best thing we can do for ourselves is be our best advocate, learn everything that we possibly can, and be able to listen to our bodies when something isn't right, and by the sound of it, that is already the path that you have chosen. I hope that science is headed in the right direction and we can see a cure in our lifetime

 

[UnXmas]

Hi, sorry things have been so bad for you.

I don't have OCD but when I first got digestive symptoms I struggled a lot with having something I thought so disgusting wrong with me. It wasn't germs I was worried about so much, it was embarrassment and concern that other people would see me as disgusting, which was how I was feeling about myself. It took me a long while to come to terms with it. I still worry a little about offending people and I pay a lot of attention to hygeine, but I'm far more relaxed about it now. It really helped me to find other people online who had similar bowel issues. I could see they were nice people, living happy lives despite their symptoms. I realised that I wouldn't see them as disgusting no matter what their bowel problems, and then I was able to apply that to how people would see me.

I'm not sure if OCD would work in the same way, but perhaps it will help you to read these forums and see how many different things trigger symptoms but that ultimately we don't have control over this disease. Nothing we did caused it. I know you know that on one level, but perhaps reading others' posts will help to make that seem more real and enable you to take some of the pressure off yourself when it comes to managing symptoms. It is natural to worry about public toilets, etc. especially when you have a disease like this to deal with. Maybe it's a matter of trying to keep things in perspective and not being too hard on yourself - not feeling responsible for something you didn't ask for. How are you doing with that side of things now?

 

[Sybil Vane]

I'm so sorry you've been through so much. I can relate to the post traumatic stress. I had a huge bout after my last surgery and I suffered similar complications with multiple abscesses from the site leaking and a bowel obstruction because the surgery site swelled shut. I was hospitalized for two months and on some horrible heavy drugs. It was at a teaching hospital four and a half hours away and I started panicking every time I had to go back. I thought I was having a heart attack and finally realized it was that place. I will never go back there for another surgery. Sometimes I feel like I walked out of there in spite of their best efforts to kill me. It was an awful experience and took me about a year to return to myself. Sending you big hugs!!

 

[Toomuchtooyoung]

Hi, sorry things have been so bad for you.

I don't have OCD but when I first got digestive symptoms I struggled a lot with having something I thought so disgusting wrong with me. It wasn't germs I was worried about so much, it was embarrassment and concern that other people would see me as disgusting, which was how I was feeling about myself. It took me a long while to come to terms with it. I still worry a little about offending people and I pay a lot of attention to hygeine, but I'm far more relaxed about it now. It really helped me to find other people online who had similar bowel issues. I could see they were nice people, living happy lives despite their symptoms. I realised that I wouldn't see them as disgusting no matter what their bowel problems, and then I was able to apply that to how people would see me.

I'm not sure if OCD would work in the same way, but perhaps it will help you to read these forums and see how many different things trigger symptoms but that ultimately we don't have control over this disease. Nothing we did caused it. I know you know that on one level, but perhaps reading others' posts will help to make that seem more real and enable you to take some of the pressure off yourself when it comes to managing symptoms. It is natural to worry about public toilets, etc. especially when you have a disease like this to deal with. Maybe it's a matter of trying to keep things in perspective and not being too hard on yourself - not feeling responsible for something you didn't ask for. How are you doing with that side of things now?

Hi Unxmas,

I also felt embarrassed when I was first diagnosed. I thought that perhaps my friends would think my disease was gross as it involved diarrhoea etc. so I actually lied to my friends (all except one) until I was 16 as I was worried what they would think (I told everyone I had stomach ulcers). Shortly after I was diagnosed I was doing group work in school and one of the popular girls was in my group- she started talking about the singer Anastasia and about made a snide comment about how she had some 'shitting disease' (she has Crohns). I was so embarrassed and this contributed greatly to me keeping my disease a secret. Now though I tell people about it, I just don't go into the knitty gritty of it all!

On the OCD front, I have been seeing a cognitive behavioural therapist for a while and this, as well as the passage of time, has helped things greatly. Today was my first day back at work and I found it hard using the toilets there but I'm alot better than I was. I've learnt to 'forgive myself' a bit and not blame myself so much for me getting the Crohns.

Thanks for your kind words of support.

 

[Toomuchtooyoung]

I'm so sorry you've been through so much. I can relate to the post traumatic stress. I had a huge bout after my last surgery and I suffered similar complications with multiple abscesses from the site leaking and a bowel obstruction because the surgery site swelled shut. I was hospitalized for two months and on some horrible heavy drugs. It was at a teaching hospital four and a half hours away and I started panicking every time I had to go back. I thought I was having a heart attack and finally realized it was that place. I will never go back there for another surgery. Sometimes I feel like I walked out of there in spite of their best efforts to kill me. It was an awful experience and took me about a year to return to myself. Sending you big hugs!!

Honestly, sometimes I really do think the doctors just don't give crap- as long as its not happening to them they Dont care what happens to u, they don't feel the pain we go through or suffer the consequences of complications after surgery. I'm so sorry to hear of your complications, its enough to try and recover when everything is straightforward never mind when everything goes wrong. My wound bust open after my surgery and had to let it heal from the inside out so I ended up with a big leaky hole in my belly for bout two and a half months! I too suffered a few bowel obstructions after my surgery but things seemed to have calmed down now. I now hve to take a couple of immodium a day to slow everything down but sometimes can feel that this puts pressure on my anatomosis- do ever experience pain at ur anatomosis site when food is passing?

My surgeon told me after having bowel surgery a bowel obstruction could strike at any time (he had one 10 years after having his appendix out!) so now I can be worried tht one will strike at any time! Yay! Lol

 

[Sybil Vane]

I do feel pain at my anatomosis site but it's only when I'm flaring. I think my Crohn's disease flares at that site which I heard is common. I do think you should get it checked out, though, but it could be abdominal adhesions. I have a ton and I feel my food go through me every dame stage of the game and it is often painful and unpleasant. Oh the joys of Crohn's!

 

[Sybil Vane]

Oh, and don't walk around worrying about an obstruction. That's no way to live and won't necessarily happen. Your surgeon should have phrased that more delicately but we all know good surgeons lack basic human communication skills.

 

[Toomuchtooyoung]

I also have adhesions but not at the anastomosis! I have stabbing pains in my left side where they made an incision to get one of the cameras in to do the op, gives me bad pain on and off, it's hard to predict when it will start.

My gastro says that hopefully the adhesion pain should improve because the adhesions could break up- hope they do! And I hope ur adhesion pain improves also!