09-05-2013, 05:41 AM   #1
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Ian's Avatar
Join Date: Feb 2010
Location: London, UK
I'm back!

Hi all,

I donít know if anyone here will remember me, Iíve only made the odd sporadic post over the last year or so and therefore donít know who todayís current crop of regulars are!

Anyway, I was particularly active in 2011 when I was experiencing a severe flare, had exhausted all meds (I was on the highest possible doses of Humira and 6MP at the time, along with Prednisolone), and was facing surgery (a situation made all the worse by an indeterminate diagnosis Ė just look at my sig haha). Anyone who does remember me might also recall that I didnít handle this well at all Ė faced with a permanent stoma as my only surgical option (due to a Crohns colitis dx at the time), the risk of this not even being curative, and having had to drop out of University, I fell into a deep pit of depression, experienced suicide ideation, became disillusioned about my illness (I didnít actually realise I had been getting better for a couple of months because I was such a mess mentally and was convinced my insides were falling apart), had to see a psychologist etc. Not a pleasant time for anyone, including some wonderfully supportive people on this board who somehow managed to put up with me and my dark posts.

I ended up going into remission around May of that year (I guess the Humira FINALLY kicked in, Iíd been on it, weekly, for 5 months). As I had deferred the final year of my University degree (in Scriptwriting for Film & TV), I agreed to complete the final year remotely from home. I then, as a result of having done work experience there, got offered the chance to interview for a job as a script researcher for a medical drama at the BBC and got it. Unfortunately my remission only lasted for about 4 months Ė by October, when I started the job, I was flaring again and struggled through for the next 9 months on the same max doses of medication, again, including varying doses of Prednisolone for the majority of that time (sometimes without my consultantís knowledge Ė I know, not a recommended move, but I was desperate and couldnít function at work without having it take the edge off). On top of my full time job I had to write a 10,000 word dissertation and a 110 page feature film script. Somehow I managed this and graduated officially in November of last year - 1.38% away from getting a 1st overall, which Iíd been on track for until dropping out Ė but Iím over that now .

Around May/June of 2011, things started to improve, and I slowly tapered off the Prednisolone successfully. I had been dragging my feet the whole 10 months I was at work due to illness and as a result when my contract came up for a renewal, it didnít get one because of poor performance Ė my own fault for hiding my illness from everyone (in retrospect I donít know why I did this but I know I had my reasons at the time). I was pretty upset, but this ended up being fantastic for me in the end. I didnít get another job for 4 months, but rather than wallow I took advantage of my good health and living at my mumís house (rent free, bless her) and got into healthy eating and some fitness. Being off Pred long term for the first time in 2 Ĺ years, I finally got my face/jaw line back and the healthy regime meant I also lost a stone and felt amazing. In December I was offered a job in London (in drama development at a TV production company) and moved down on New Yearís Day 2013 to start a new life.

Something I had never mentioned on here, or to my doctors, is that Iím gay Ė this wasnít out of shame, more out of it being irrelevant. I was very overweight as a teenager and developed IBD when I was 19 Ė I lost 3 stone after getting ill, not through the disease (it wasnít severe enough to cause weight loss at the time), but through the vein hope that healthier living would make the symptoms abate (it didnít). But I never quite got to the weight I wanted to be because of regular bursts of Pred. I have always been deeply self-conscious about my appearance/body and never got any attention from anyone when I looked like crap. Add to that that I was often feeling like crap too, I have always pulled away from acting on my sexuality. There just didnít seem to be any point. Therefore, there seemed no need to mention it, although plenty of people have guessed, I think itís quite obvious honestly lol. I have never spoken about it with family, although I assume they have at least a clue. My move to London coincided with me looking and feeling the best I ever have in my whole life, and with there being a lot more opportunity here, I have started to identify with being gay and have acted on it to a degree. Itís been a pretty exciting time (and long over-due!). Iíve developed a lot of confidence in myself, I get noticed/hit one when I go out to bars etc, itís like a whole new world (however pathetic that might sound!). Add to that an interesting/exciting (albeit horribly paid!) job and making loads of great new friends, Iíve been having the time of my life. All of this has been thanks to a blissful 13 month remission since July 2012; something I never thought possible. I donít even know how it happened Ė no changes were made to my meds, there was nothing else I could take, and I had already relapsed once on maximum therapy. It felt like a miracle.

Sadly, I think I started to flare again around the weekend just gone. The symptoms are mild at the moment, but the emotional hit is not. I always knew if I let myself build/improve my life Iíd have further to fall if/WHEN I flared again and that it would hurt even more.
My life is so full of opportunity now when it wasnít before. I pitched a TV series idea to my boss which he took to the head of commissions at ITV Ė he liked it, so now Iím developing it on my own (!). I look and feel (or felt, until several days ago) so well and in shape (not exactly got a gym bod but I was slowly on the way!) which means I can finally dress how I want and take pride in my appearance (finally have healthy hair again too after Pred made it dull and brittle). Most importantly, to me anyway, I have been meeting guys and contemplating maybe ending up in some kind of relationship at some point (Iím meant to have a date with a cute doctor next week Ė a paediatrician no less Ė isnít that like every womanís fantasy boyfriend? Haha).

I know Iím jumping the gun, but all I can think about is how all of this is going to be jeopardised by ill health. If I am indeed beginning a proper flare (Iíve never once developed mild symptoms that didnít quickly get much worse), the short term fix will likely be Prednisolone, which will mean kissing goodbye to my face for a few months at least (not to mention all the worries about it affecting mu bones, eyes etc, as Iíve used it many times already). They will then probably put me back up to weekly Humira, but I donít expect this to help seeing as how I seem to have relapsed and remitted regardless of this drug. After being so well for so long, I was starting to think the landscape of medicinal treatment might have changed by the time I needed something. Say, if I could have remained well until I turned 30 (I turned 27 in June), one of these new biologics might have been available by then. Alas, it looks like Iím going to be stuck in the same old boat I was in 2 years ago.
If it comes to surgery, things are at least, potentially, a little brighter on this front. With the Ďlikely ulcerative colitsí diagnosis I was given at my last appointment in July, along with a glowing report of my good health and colonoscopy (which was perfect bar the irreparable reticular scarring and pseudopolyps Iíve sustained from the battle), it looks like a j-pouch would now be a likely option for me when it wasnít before, and this is the surgery I would choose for me personally. However, with me now embracing my sexuality, I have new concerns about how this will affect me.

ANYWAY, to anyone who managed to read this far (well done!), Iím aware that the previous paragraph is my mind projecting way too far ahead to be justifiable for my currently mild situation. I think itís a coping mechanism of mine Ė think of the worst case scenarios so Iím prepared and not surprised. But MAN is it distracting! I really need to learn to stop doing it. And as much as these losses, should they happen, will devastate me, I have a lot more self worth now and feel pretty confident that this would spur me on to handle everything better than I did two years ago. So this is not me wallowing in self-pity, itís just me sharing the thoughts going through my over-active mind.
And the purpose of this post as a whole was also to share my story, which has, in the long run, been massively positive until a few days ago! I so nearly posted in the Ďsuccess storiesí forum many times, but always refrained because I didnít want to jinx it. I guess now that itís probably already been jinxed, itís safe to tell everyone!

Dx Ulcerative Colitis Oct 2005 (age 19)
Dx Crohn's Colitis Feb 2010 (age 23)
Dx Indeterminate Colitis (IBD unclassified) Oct 2011 (age 25)
Dx likely Ulcerative Colitis July 2013 (age 27)

Currently taking:
6MP (75mg daily)
Asacol (3 x 800mg, twice daily)

Have taken: Humira, Infliximab (Remicade), Prednisolone, Predfoam
09-05-2013, 07:21 AM   #2
Senior Member
Join Date: Aug 2013
hi and welcome back! i am sorry to hear you are not feeling well. hopefully it wont progress. as far as coming out, you are brave and maybe in your own time find the same courage to tell your parents and friends who might be supportive. good luck on your date and if hes a kepper than he will be supportive of you in your illness and weight issues and being a dr he might even be aware of uc and what you have to go through. i also have had weight issues when i was on predisone but also being to skinny as ive had family members spread rumors saying they thaught i was on crack or meth. i one day i realised i had a distorted view of myself and weight.and decided i had to stop worrying what people thaught because in the end to people im either to fat or skinny. im 100 lbs but had to let go of distorted views of myself. as for the spastic mind i wish i had a off button. but one thing i found that helps is meditation with deep ch breathing i found buddhist med helps alot. even 5 to 10 mins a day. i wish you luck and good health!
09-05-2013, 08:44 AM   #3
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KayleighMeek's Avatar
Join Date: Dec 2010
Location: Southampton, United Kingdom

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Welcome back Ian!
I remember some of your posts from a couple of years back when you were struggling, it sound like you are coping with everything better now. I think a lot of us have moments with how we look as the medicines and the disease itself can change our appearance so much. I am current on pred and have the lovely round face before I would get down about it but now I see it as necessary to get me well again even if it does suck.
Hopefully what you are experiencing now is just a small blip.
Current meds

Previous meds
Pentasa, Aza, 6mp, Remicade, Humira and Sulfasalazine
09-05-2013, 08:56 AM   #4
Tesscorm's Avatar
Join Date: Jun 2011
Location: Ontario

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Hi Ian,

Don't think I ever posted on your previous threads but do remember all you went through at the time and felt terrible that you were struggling so much! I'm so glad to hear that things have improved tremendously for you!!! It all sounds wonderful!

Hopefully, you're able to very quickly get in to see your GI and get treatment under control asap and keep these symptoms shortlived!!

Best of luck with ALL that you have going on!!!
Tess, mom to S, 22
Diagnosed May 2011

May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
09-05-2013, 10:05 AM   #5
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Cat-a-Tonic's Avatar
Join Date: May 2010
Location: Madison, Wisconsin

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Hi Ian, welcome back! Not sure if you remember me, but I do recall your dark posts from a couple years ago, and it's very encouraging to hear that you're doing better. I do want to say, even if you're flaring now, please try not to let it get you down. I speak from experience - I was in remission for about 2 years, then started mildly flaring in the spring and am still mildly flaring. But I've been hitting the gym regularly in spite of that, and the exercise makes a huge difference for me - so I would encourage you to try to keep exercising as well! I used to get depressed about my situation horribly as well, but the exercise seems to chase the sadness away, and it makes me feel better physically too. 99% of the time I feel better rather than worse after a workout. It gets rid of my stress, it eases the depression, and it helps me become healthier physically and better equipped to fight the battle that's going on inside me. I'm rambling, but I hope that helped a bit. You definitely can keep working out while in a mild flare - yes, some days will be bad and you'll have to rest, but on okay days there's no reason why you can't get in some gym time.
09-05-2013, 01:34 PM   #6
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Grumbletum's Avatar
Join Date: Dec 2010
Location: Western Isles, United Kingdom

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Well, hello you and it's so great to have you back. I hope to God this is just a little blip you're having and not the beginnings of a full-blown flare. You do look brilliant in your picture :-)
I'm so glad that all those good things have happened in your personal and professional life. You're such a supportive person on here and it was hard to see you having such a hard time with the disease and the depression it brought on.
Dx Crohn's terminal ileum April 2011
Ileocaecal resection & partial cystectomy Sept 2012
3.5 years happy remission, in mild flare since Feb 2016 with related Portal Vein Thrombosis

Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
Current: Pentasa, Librax, Warfarin
Helen x
01-22-2014, 08:36 AM   #7
Max's Mom
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Max's Mom's Avatar
Join Date: Jan 2011
Location: Crystal Lake, Illinois

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Hi,Ian,I remember your heartbreaking story from years ago,and have thought about you ever since.I am so glad that you have had some good times.This disease just takes away so much from one's life.You so deserve to live happily ever after, and I hope you can get back on track.Let us know how it goes.
05-06-2014, 03:42 PM   #8
Senior Member
Ian's Avatar
Join Date: Feb 2010
Location: London, UK
Hi again,

I am a terrible person. I didn't respond to these messages even though I read them at the time - I think I was waiting until I had time to write another signature essay and then forgot! Thank you so much for the messages of support, they mean a lot .

Well, the reason I forgot is at least a positive one Ė the symptoms I was experiencing when I wrote the above did indeed turn out to be a minor blip (so I was getting ahead of myself as usual). I started taking Predfoam enemas again and rested up as best I could and, much to my surprise and elation, was back to normal again in about a fortnight. I have, touch wood, been perfectly well ever since. So ignoring that little scare, the 13 month remission I mentioned is now a 21 month remission and the longest one I have had since I developed IBD in 2005.
I have also been completely off Humira for 4 months now (with no relapse!) which is great Ė not that I ever minded the injections or experienced any side effects, but itís nice to think Iím not to be pumping a potentially scary biologic into my body for the time being (also it was just a pain the arse!). Theyíve also told me numerous times I can stop the Asacol but I pitched them my potentially silly theory that itís essentially aspirin and that research now suggests people should take aspirin as a preventative for bowel cancer (which I am more susceptible to with UC) so I should just keep taking it right? One was impressed and agreed. Another laughed at me. Well she can go to hell Ė itís not HER colon is it So Iím still taking it for now .

All my other updates are just personal ones. Iím currently unemployed as my last job was fixed term (thatís TV for you!) and came to an end in March, but Iím on the hunt for a new job and have had some interviews. I actually have a second interview tomorrow for a job at ITV so I have everything crossed for that! And if anyoneís interested, the date with the doctor went ahead but nothing came of it (he was lovely, but no). As a result there have been many more guys since then, none of whom are really worth mentioning (theyíve all been relentlessly gossiped about with my flatmates and now forgotten about haha), but hey itís fun to kiss the frogs along the way isnít it? :P

Thanks again for the lovely messages, hope youíre all doing well and I will try to make more consistent appearances from here on out!
05-06-2014, 04:31 PM   #9
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Cat-a-Tonic's Avatar
Join Date: May 2010
Location: Madison, Wisconsin

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I'm glad to hear such a positive update! Best of luck with the job interview tomorrow!
05-07-2014, 01:10 AM   #10
KyleB's Avatar
Join Date: May 2014

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Welcome back. Thanks for sharing your story. As to thinking ahead, I know exactly what you're talking about. We all do it!
05-07-2014, 03:34 AM   #11
Senior Member
Hi Ian, if it helps I was diagnosed 30 years ago. Despite multiple surgeries, I did an MA and PhD and now teach. Body dysmorphia is common with bowel disorders. I suffer from it still. You have a really positive attitude which is great. I would certainly look into a j-pouch, I would have it if I didn't have crohns. As I understand with UC, removal of the Colon is a cure. That would mean no more nasty drugs and no worry about cancer.

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