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Crohn's Disease Forum » Your Story » New Member with Ongoing Extra-Intestinal Issues - Help?


04-22-2017, 02:43 PM   #1
Dapper_Dan
 
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New Member with Ongoing Extra-Intestinal Issues - Help?

Hi all.

A friend from work advised me to tell my long and complex story in a few forums to see if anyone has had a similar experience to mine, as my gastroenterologist seems to be running out of ideas...

I have been suffering a number of extra-intestinal symptoms for around 7 months now and, as I say, it appears my consultant(s) have almost exhausted all tests and options to treat me. I'm hoping there's someone here to has managed to overcome similar issues, and can tell me what treatments or measures were taken

--- Vital Statistics ---

31 year old male, 180cm, currently 85kg, non-smoker (quit two years ago), social drinker (when not on prednisolone), office work, eat out regularly, balanced diet (including junk food). No other medical issues besides Crohn's and no family history of Crohn's or other similar illnesses.

--- History (In as best as I can recall) ---

1997

Diagnosis at 12 years old, initially treated with 40mg decreasing dose of prednisolone. Soluble Pentasa thereafter, which was switch to Imuran at some point in my teens.

Symptoms at this time included stomach cramps, a lack of appetite, frequent trips to the toilet and loose stools.

2005

Abscess in psoas muscle, initially drained and treated with antibiotics but eventually requiring removal of most of the large bowel (with anastomosis of small bowel to rectum) in early 2006.

Prior to this my symptoms were minimal – my appetite was small/ specific, but manageable and I do not recall specific stomach pains. I was just generally rather run down and had become used to loose stools. With regards to the abscess; this manifested itself as a pain in my back and a fever, with occasional spells of dizziness and nausea. Post-surgery trips to the toilet became more frequent and although my stool improved somewhat in consistency, it continued to be loose.

Imuran restarted afterwards and taken on/ off for a few years.

2009

Infliximab treatment began at 8 week intervals. (I don’t recall any symptoms that led to this being prescribed specifically)
Initial reaction to Infliximab I recall as being positive however I came out in a rash for a short time around my joints, specifically arm pits and backs of my knees. Frequency of toilet trips remained and stool would become firmer initially after infusion but loosen soon after. (I have found that with an incredibly strict diet I can maintain a firmer stool, but I don’t have the time or the discipline to maintain this).

2012

Around 2012 I started to notice a sore throat and a general sense of feeling run down in the week(s) before the Infliximab infusion was due. Initially I thought I was catching the cold, however once the Infliximab was administered I would improve greatly within a day. I later found the sore throat to be a recurring ulcer.

2014

The Infliximab infusion continued to fall short of keeping me symptom-free for the full 8 weeks and eventually I developed another abscess on my anus. This ruptured on its own and I had a seton applied for a short time. This was very uncomfortable and undermined my confidence in terms of hygiene so I asked for it to be removed.

The sore throats continued leading up to the infliximab infusion. I believe around this time they decided to increase the frequency to 6 weekly. My appetite was reasonable and I don’t recall stomach pains. I believe the frequency at which I was visiting the toilet varied and occasionally I would end up hurting myself by going too often (+10 times per day). The stool was probably very loose at this point and, as I recall, often contained blood

2016

Abscess occurred in the previous anastomosis joint, which was treated with antibiotics and drains until surgery was eventually required. A small amount of bowel was removed and a stoma formed, with a view to reconnecting the bowel to the rectum once all had healed.

Contracted ‘gastroenteritis’ in the summer with multiple mouth ulcers. Began Humira 40mg every two weeks. This form of treatment seemed to prove positive in the first few months.

Stoma prolapsed among multiple other issues with surrounding skin.
Stopped Humira to allow the first of two operations to reconnect my bowel. The first surgery reconnected my bowel, but maintained a loop ileostomy to allow the site to heal well before food would be allowed to pass through.
Blood poisoning contracted whilst recovering from this operation.

---The Current/ Ongoing Issues---

Multiple mouth ulcers occur in the weeks afterwards and the decision was main to postpone the second op and restart Humira. This was ineffective.
The symptoms from this point forward have consisted of;

Mouth Ulcers (affecting eating and speech) Initially treated with ciprofloxacin and metronidazole
Testicular Ulcers – treated with hydrocortisone cream
Spleenic Abscesses (Captured on CT scan after a short fever when an inpatient – from this point forward they thought everything was related to an infection (possibly viral) and started me on IV antibiotics.
Joint Pain – particularly in the ankles and knees (worsening to the point of being unable to walk at times) – only treated with pain relief.
Eventually my consultant accepted that the antibiotics didn’t seem to be having an effect and so switched me to IV hydrocortisone, which had a massive positive impact. Upon being discharged from hospital I switched to 40mg of prednisolone, but found that eventually this could not hold the symptoms back. I remained on 40mg (just about holding things together for a few of months)

2017

Aside from the mouth ulcers and occasional joint pain I have now started to get quite uncomfortable stomach cramps again – the likes of which I haven’t felt for many years.

Whilst on the 40mg of prednisolone my consultant has been seeking funding for Ustekinumab, however this is not proving fruitful. In the meantime they are retrying Humira with varied results in an attempt to get me off the prednisolone (currently at 25mg and suffering). If they are unsuccessful in obtaining funding, they are considering retrying Infliximab. However, I was told that my last abscess (2016) was a bi-product of the Infliximab failing so I’m a little concerned about this.

I am being seen regularly by my gastroenterologist as well as several other specialists around the hospital (ENT, etc.), however, recently it appears they are running out of options.

---

I realise everyone is different with Crohn’s, but it would be good to hear any similar stories, hopefully with happy endings… I’m starting to think I may have to live with a permanent sore throat and recurring patches of mouth ulcers as well as stiff legs and stomach pains.
04-22-2017, 03:58 PM   #2
ronroush7
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As far as the stiff legs, have you checked with a rheumatologist. I would be concerned about the Remicade failing also. I hope they come up with answers soon.
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
04-22-2017, 04:55 PM   #3
cmack
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Hi Dan,

Welcome. I agree with Ron that a rheumatologist may have some explanations. I am baffled but if you need to vent or talk about stuff you can pm me. This is a good place for support. There is a thread called extra intestinal manifestations that you may want to check out.


Welcome again, wishing you good luck,

cmack
04-22-2017, 05:37 PM   #4
eleanor_rigby
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Hey, sorry to hear what you are going through, another option that people have success with is stelera. It may also be a good idea to take imuran or methotrexate at the same time to help one of the biologics to work and work for longer.
04-23-2017, 04:26 AM   #5
Dapper_Dan
 
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Hi all,

Thanks for the replies.

At the moment I'm having 80mg of Humira every two weeks with sporadic results. It (along with the decreasing dose of Prednisolone) does not seem to be able to control the mouth ulcers.

I have seen a rheumatologist and ent specialists as well as infectious diseases throughout my admissions, but have been discharged from all these clinics.

At the moment I am being seen every two weeks by either my IBD nurse or gastro consultant. They are trying to argue my case for funding for Stelara (ustekinumab), but without much luck.

They are considering Infliximab even though I previously failed on it as an alternative to Humira if it continues to be sporadic and Stelara if they cannot get the funding.

Thanks for pointing me in the direction of the extra-intestinal suffers... I shall go and see if anyone is in the same boat as me there.

Dan

Last edited by Dapper_Dan; 04-23-2017 at 07:50 AM.
04-23-2017, 05:44 AM   #6
ronroush7
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I wish you good luck. You might ask about them trying you on Humira every week instead of bi-weekly.
04-24-2017, 09:58 PM   #7
Lady Organic
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Hi and welcome, you mention having some improuvement with diet. I would therefore encourage you to try it again. wishing you well.
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
04-24-2017, 11:32 PM   #8
Dapper_Dan
 
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Hi and welcome, you mention having some improuvement with diet. I would therefore encourage you to try it again. wishing you well.
What I found after my first surgery was that my stool was loose almost all the time even though I was in deep remission. However if I ate well - and by that I mean only eating things made from scratch - for two or three days I would see an improvement.

It's extremely hard to keep up that regime though. The easiest way is to stick to lean meat, rice/ pasta and veg. That gets boring quickly though, and beyond that it starts to get complicated. I'm not much of a chef, so having to bake all my own stuff or make my own sauces and things to weed out all the synthetics is much too ambitious and time consuming.
04-25-2017, 10:59 PM   #9
my little penguin
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What dose of remicade were you on?
The max is 10 mg/kg every 4 weeks and was it combined with mtx or imuran to make the remicade last longer ?
Second humira can be increased as well
To every 10 days
Every 7 days
And every 5 days is the highest dose with mtx added


Ds is on humira every 5 days plus oral mtx

So things to ask about ...,

Every 8 weeks of remicade works for some
But ds never got there
He needed higher dose every 6 weeks

Second seeing a rheumatologist since you made ha e developed arthritis as well

Good luck
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