JENSEN LA VENDE

Se­nior Re­porter

jensen.lavende@guardian.co.tt

As far back as he could re­call, Lyn­don Con­nor has had pains from one part of his body or an­oth­er.

Falling sick be­came a pas­time of his, al­though it was ob­vi­ous­ly not a favourite. Now, with a di­ag­no­sis with­in grasp, he is fur­ther pained by bu­reau­cra­cy.

Speak­ing with Guardian Me­dia at his Arou­ca home on Fri­day, Con­nor, 35, said he does not want help; he needs it.

Con­nor has had five surg­eries to drain ab­scess­es but needs fur­ther treat­ment.

“Hon­est­ly, I’m so un­lucky that my sto­ries don’t reach as far as what we’re do­ing now at all. So, just to shed some light. I don’t know if some­body in the gov­ern­ment sec­tor would see it, some­body in the health sec­tor would see it and see what peo­ple go­ing through. And again, I am not a bad pa­tient. I don’t go there and make noise. I don’t go there and say you have to treat me,” he said.

In 2010, af­ter he was sent to a pri­vate health fa­cil­i­ty for what was thought to be gall­blad­der stones, he heard about Crohn’s dis­ease. While most of his per­son­al re­search on his ill­ness fits per­fect­ly with the symp­toms of the dis­ease, he has yet to be di­ag­nosed, even af­ter his week’s stay at the pri­vate in­sti­tu­tion.

“Some doc­tors re­viewed me. They spoke to me. They did some blood tests. They did a CT. They did a CBC. And that is when they sus­pect­ed, at the mo­ment, it wasn’t com­ing on bad, as they say, flare up. That’s what they call it. But as I was young, so it used to take me down.”

The fa­ther of two, a 13-year-old daugh­ter Faith and a three-year-old son Dim­itri, said he has lost sev­er­al jobs as his ail­ment, which comes with ex­cru­ci­at­ing pain, forces him to take time off, some­thing not many em­ploy­ers sym­pa­thise with.

“Men don’t talk their busi­ness be­cause when they talk their busi­ness, he is viewed as a soft man. Man not sup­posed to do that, throw it be­hind your back and move on. Peo­ple don’t be­lieve in PTSD, trau­ma, they don’t be­lieve in anx­i­ety, they don’t be­lieve in de­pres­sion. I can tell you, go­ing through this, it shows you a lot. It hum­bles you. It teach­es you em­pa­thy,” Con­nor said.

He said be­cause of the cock­tail of med­ica­tion he has had to take over the years, the veins in his arms are con­strict­ed, with med­ical staff forced to use his neck and groin to ad­min­is­ter med­i­cine in­tra­venous­ly.

Walk­ing with a cane, he said his left leg is no longer his. He is robbed of play­ing with his son. The self-de­scribed grease mon­key watch­es his white Hon­da Civic in his dri­ve­way in need of re­pairs but can’t fix it.

Added to his phys­i­cal pain is the psy­cho­log­i­cal one caused by not know­ing what is tru­ly wrong with him and the in­abil­i­ty to pro­vide for his fam­i­ly.

“Up to last year, No­vem­ber, they said they test­ed me for Crohn’s, in­flam­ma­to­ry bow­el dis­ease (IBD) and all those stuff that con­cern the whole form and all this stuff. They told me every­thing came back neg­a­tive. I did the prop­er ex­am;, they didn’t even do a stool ex­am on me.”

He said af­ter do­ing a stool ex­am­i­na­tion pri­vate­ly, which came al­so back pos­i­tive, he is now more con­fused.

“So all these years I am suf­fer­ing with this thing and these hos­pi­tals can’t just tell me that I have Crohn’s and it’s go­ing to af­fect my liv­ing and ex­plain to me, send a psych of­fi­cer to ex­plain what’s go­ing on, how your lifestyle will be be­cause if you do re­search, it’s not a nice lifestyle to live at all,” Con­nor said.

Con­nor said his yet-to-be-prop­er­ly-di­ag­nosed dis­ease caused the pe­ri­anal fis­tu­la which caused the ab­scess prob­lems.

The chain re­ac­tion of ail­ments is al­so tak­ing a toll on him and his fam­i­ly fi­nan­cial­ly.

“It’s not an easy lifestyle at all and the med­i­cine, no way in hell a poor per­son can sur­vive on buy­ing med­ica­tion out­side of the hos­pi­tal, which they nev­er have the med­ica­tion you need. They would have parac­eta­mol for sure, $2 for parac­eta­mol. I would buy 4 but $90 for 1, $120 for 1, $60 for 1!,” he said, adding that some pills are to be tak­en twice dai­ly.

Guardian Me­dia was shown a re­ceipt for med­ica­tion that to­talled $2,500 for a month’s sup­ply.

Con­nor, apart from want­i­ng a prop­er di­ag­no­sis, is al­so ap­peal­ing for pub­lic as­sis­tance. He said the Min­istry of So­cial De­vel­op­ment lost his file and he al­so be­lieves his ail­ment is not giv­en the se­ri­ous­ness it de­serves by those in au­thor­i­ty.

Health Min­is­ter Dr Lack­ram Bo­doe took Con­nor’s con­tact in­for­ma­tion when told of his plight. Min­is­ter of So­cial De­vel­op­ment Vana­da Mo­hit did not re­spond.

Any­one will­ing to as­sist Con­nor can do­nate to his wife Che-Marie Lewis’ JMMB sav­ings ac­count— 0077000010714.

Ac­cord­ing to May­oClin­ic.org, Crohn’s dis­ease is a type of in­flam­ma­to­ry bow­el dis­ease (IBD) that caus­es swelling and ir­ri­ta­tion of the tis­sues, called in­flam­ma­tion, in the di­ges­tive tract. This can lead to bel­ly pain, se­vere di­ar­rhoea, fa­tigue, weight loss and mal­nu­tri­tion.

In­flam­ma­tion caused by Crohn’s dis­ease can af­fect dif­fer­ent ar­eas of the di­ges­tive tract in dif­fer­ent peo­ple. Crohn’s most com­mon­ly af­fects the end of the small in­tes­tine and the be­gin­ning of the large in­tes­tine. The in­flam­ma­tion of­ten spreads in­to the deep­er lay­ers of the bow­el.

Crohn’s dis­ease can be both painful and de­bil­i­tat­ing. Some­times, it may lead to se­ri­ous or life-threat­en­ing com­pli­ca­tions.

There’s no known cure for Crohn’s dis­ease, but ther­a­pies can great­ly re­duce its symp­toms and even bring about long-term re­mis­sion and heal­ing of in­flam­ma­tion.