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Crohn's Disease Forum » Your Story » My Crohn's diagnosis: The dangers of procrastinating


07-09-2015, 10:06 AM   #1
Rohmer
 
Join Date: Jul 2015
Location: Melbourne, Victoria, Australia
My Crohn's diagnosis: The dangers of procrastinating

Hi everyone,

Fairly new to the forum & to Crohn's, just thought I'd make a post about my experience of it. This is going to be long, the title is the TLDR.
A couple of years ago I started to notice some problems with my digestive system, after never really having any past problems in that regard, like most in their early twenties. I seemed to have infrequent bloating, mild digestive cramps, and little spots of bright red blood on toilet paper. The latter symptom did not worry me too much, as I had noticed this isolated symptom occasionally since my teens, and put it down to haemorrhoids. Still, after a few months of the occasional cramps (which tended to last only a few seconds) and the more regular bloating, I knew something wasn’t quite right, and suspected lactose intolerance, as cheese seemed to cause the onset of symptoms. However, time went on, and dietary changes did not seem to be making much observable difference. Further yet, the symptoms were steadily increasing, and I had acquired one that still persists rather stubbornly – the almost irrepressible need for a bowel movement whenever I feel the slightest level of stress or apprehension. I’d be interested to know if anyone else experiences this last one, as it is currently my least favourite.

Needless to say, I was starting to think that allergies were not my problem, after all, I’d never had any, and none of my half-baked dietary changes had made a substantial difference. At that point I began to think I had IBS. Pretty much all the symptoms were there – the bloating, the excess gas, the strange stomach rumblings, (infrequent) diarrhoea, the feeling that a bowel movement wasn’t really ‘done’. At this point you may be wondering whether I was visiting any doctors. Unfortunately, I was not, as I had tended to be one of those people who doesn’t visit a doctor unless they notice something drastically wrong, like a stab wound or some other unbearable pain. Sometime later, however, my ‘leave it to its own devices’ method, or non-method, eventually led to such pain. Upon bowel movements, I had noticed increasing pain, and increasing blood. Most worryingly, the blood was a little darker, and there seemed to be a little of a mucus-like substance in it. I was finally right about to go to the doc, as a forum post about a fellow 23 year-old having bowel cancer was more than enough to jolt me into action, when the pain kicked in.

I first noticed an unusual sensation slightly to the right of my rear-end, like I was sitting on a small pebble. Over a period of days it became worse, to the point where a bowel movement would cause some pain afterwards, though it would then gradually dissipate once sitting comfortably. Sitting comfortably became very hard however, and google produced a worrying diagnosis: perianal abscess. I noticed that this could be a problem for people with Crohn’s. I had earlier dismissed Crohn’s as the source of my problems, because I didn’t have some/most of the risk factors (no smoking, no family members with the disease) or the symptoms (vomiting, weight loss, fatigue). I was now a little more worried about things, and went to the doc (GP), listing off my IBD symptoms, haemorrhoids suspicions, and the pains that I felt related to a little lump, which I noted ‘could be an abscess’. Despite a first-time ‘digital examination’ (oh why me – I thought I wouldn’t be having these until my 40’s for prostate!?!) which was…memorable, the doc noticed no abscess, but took note of my stressed state and the fact that I had been straining at bowel movements and probably had haemorrhoids. He reassured me, and gave me some laxatives. Those loosened things up, but the pain continued after a few days, and I was surer than ever that there was an abscess. It was Sunday, so I had to see a different doc, but he reached the same conclusion – no abscess (although he suspected some sort of parasitic infection for the IBD symptoms, which would later come back negative).

With two medical opinions and ostensibly zero abscesses, I was feeling a little silly, but the pain only worsened. One day I woke up with a bit of pain and made the mistake of going to the toilet. The pain after that was some of the worst I’d ever experienced – a continual and extremely uncomfortable throbbing sensation from the abscess area, I could barely walk properly. After yelling my way through a shower for pain-relief, I got dressed and decided to go back to the first doctor. I could feel the lump near the hole and it was pretty noticeable, as if a large grape was lodged under the skin. If the doc couldn’t see it this time I’d put my damn finger on it to point it out. Naturally, the doc noticed it this time – ‘oh, you must be in a bit of pain’. ‘You’re not wrong’, I thought. So he lanced it (read: sliced into it) right there. Thought that may be the end of the pain in the interim, although I was immediately informed that ‘there was no pus, only a lot of blood, which means it’s not an abscess or I sliced into it wrong’. Great, I thought. Off to the emergency department, which was worrying, although by this point, as you might imagine, I wasn’t the biggest fan of the GP’s, and figured that the hospital would at least sort it all out. They confirmed it was an abscess, cut all the way in and removed the pus, and informed me that I also now had a fistula, for which I had a Seton. By this point (Feb of this year) a gastroenterologist was onto things, and I was onto some pills and readied for a MRI, bloodwork and colonoscopy/endoscopy, which confirmed Crohn’s with moderate inflammation.

I then went on and off a couple of drugs, and am now taking budesonide (which I had gone off, but things flared up) and 100mg of Azathioprine. Still have a number of symptoms (bloody mucus, pain at bowel movements although that may be fissures, and the stomach cramps) which aren’t going away after a few months on the Aza, and I expect that at my next appointment I will end up on the infusions. Things are better though, and I'm lucky enough to have access to experts who are managing things. Anyway, that’s my overly long Crohn’s story, which includes an obvious lesson on procrastination and self-diagnosis.

Rohmer

Last edited by Rohmer; 07-09-2015 at 02:07 PM.
07-09-2015, 02:56 PM   #2
Clash
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Just wanted to welcome you! It sounds like you have been through quite a lot.

I hope with the help of the entocort the AZA is able to calm things down and get them under control.

If it doesn't and you do move on to the infusions, remicade can be really great. My son did a 180 right after the first infusion and it was awesome to see him without the pain and such so quickly.

Good luck.
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Clash
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C age 19
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CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
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PAST MEDS: remicade, oral mtx, humira
07-09-2015, 03:46 PM   #3
24601
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Welcome! Thanks for sharing your story!

I think it's so important to be able to hear about our various routes to diagnosis. Hindsight is great...but certainly when you have the unhelpful responses from doctors that you did I think you have to remember that they are at least as fallible and culpable for late diagnosis as we are so don't beat yourself up

Has your fistula healed? If not I know many forum members have great experiences with Remicade for healing fistulas.

Hope you find that right combination of treatments for you to get you back to good health.

What sort of monitoring do your docs do in terms of bloodwork, fecal calprotectin and imaging? What goals are they setting for remission for you?

Best of luck
__________________
Stricturing jejunoileitis dx 1996 aged 17
Current treatment: stem cell transplant
Previous treatment: Humira + methotrexate
Past treatments: prednisolone, azathioprine, budesonide, pentasa, EEN (oral and NG), elimination diet, SCD, whipworms, 6mp, Remicade, anti-MAP antibiotic therapy
Surgeries: small bowel resection and strictureplasties in 2001, 2005, 2009, 2014
07-10-2015, 12:53 AM   #4
Rohmer
 
Join Date: Jul 2015
Location: Melbourne, Victoria, Australia
Thanks for the replies, this forum really is a great resource for information & support.

I'm not sure if the fistula has healed... it's still draining a bit so I'm guessing not? I'm seeing the surgeon soon who'll assess the whole situation with that and the Seton.

I've had quite a few bloodtests, at the moment they're every month or so. Just did my third calprotectin test, although I don't think the results will be very good as my symptoms have flared up in the past 3-4 weeks so there's probably a lot of inflammation. Had two MRI's done re: imaging, and the second one apparently showed that I didn't have other fistulas forming, which was good. I haven't been given much of a timeline for remission, although I think the doc's are hopeful that I can get things under control with the Aza, and if that doesn't work, onto the Infliximab.

Unfortunately I suspect I'll have to go onto the latter, as although some symptoms were clearing up a bit on the Aza and budesonide, once I dropped the budesonide things seemed to flare right up.
07-10-2015, 08:15 AM   #5
Catherine
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We are also from Melbourne. My daughter has been on aza for 3 and half years.

Have they tested the aza levels? How long have you been on aza?
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
07-11-2015, 03:02 AM   #6
Rohmer
 
Join Date: Jul 2015
Location: Melbourne, Victoria, Australia
I've been on Aza since march, although I think I started on 50mg just for a week or two (can't recall), just to guage the reaction to it. Pretty sure I've been on 100mg since at least the start of April, which means it probably should've kicked in by now.
07-11-2015, 05:42 AM   #7
Catherine
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It took many changes to the dose of aza and three courses of pred to keep Sarah in remission on aza.

She also started on 50mg of aza, and has moved up over time to her current dose of 200mg. This dose is only possible due to the testing of aza levels.
07-16-2015, 08:14 AM   #8
InstantCoffee
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May not work for everyone, but I had chronic perianal abscesses throughout college and afterwards while on Remicade and later Humira.

They stopped when I made some life style / health changes. The most important was probably reducing intake of refined sugars including high fructose corn syrup.

Along with that I started taking vitamins, especially C, and eliminated a number of other trigger foods from my diet including canola, wheat and nuts.

I haven't had a perianal abscess in over 3 years with no medications.

I do get facial skin lesions though that I'm not sure are related. I never got them before, Idk if they simply migrated from my ass to my face lol but they aren't nearly as severe so I think it's different.

My first abscesses I didn't know how to handle, I was embarassed to tell my mom and hoped they'd go away. They started the size of a pinky finger tip, and by the time I got them lanced you could use them as coasters for a large mug. One on each butt cheek, right on the sitting area.

Since then I had them generalized in that area moving inwards and lower, then later on my crotch I had 3 appear at the same time.

Later I had similar abscesses in both arm pits at the same time.
Those ONLY went away after dietary changes, they were extremely aggressive and didn't respond to high doses of anti biotics.

It'll be almost 2 years since that with only minor ones on my face which have come and gone using hydracolloid bandages to drain.
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Dx 05
Past drugs: Remicade, Azathioprine, Prednizone, antacids, Humira
Current therapy: Diet and supplements.
I'm my own guinea pig.
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07-16-2015, 09:10 AM   #9
Bunty
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I've just been started on aza too, 25mg for four weeks with a weekly blood test to make sure it's not having an adverse affect, been taking it for two weeks.
I'll then see the IBD specialist nurse who will have the blood results and, all being well, as I understand it, the dose will be doubled.
I started flaring on 2nd June and so far I'm not sure much/anything has changed/improved as I'm still bleeding, get pain, feel rubbish. Does it typically take weeks to get a flare under control? Maybe I've not been realistic as I'm pretty new to all this, but I was hoping I'd have seen some kind of change for the better by now, especially having been on steroids for two weeks as well. 😕
Bunty x
07-16-2015, 09:39 AM   #10
Clash
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The steroids should be helping by now but it can take a few months for Aza to reach therapeutic levels.
07-16-2015, 10:08 AM   #11
Bunty
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That's interesting to know, thanks.
I've had a week on 8, a week on 7 and today started a week on 6, maybe by the time I start on 5 I'll be seeing a difference. Also have to have a barium something or other when it's stopped flaring as I have a loopy bowel and they couldn't get the scope right to the terminal ileum...is that something I should look forward to? 😳
Bunty x
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