Keeping My Colostomy - Weighing Risks & Choosing Life

Hi all, awhile ago I was very unsure as to have my colostomy reversed. The decision is now that I'm not having the reversal, totally my choice. After seeing my surgeon, the risks are too high because of the fact of the prednisone I'm on for my severe psoriatic arthritis. I tried weaning off it for three months, which saw my inflammation levels go through the roof. Because of this drug, the reconnection could break apart, which would result in a stoma on the other side, so more surgery and once again weaning down off prednisolone, again just too much to bear. So Percy gets to stay with me for life, can change my mind if I want down the track. As my surgeon said, I'm alive, I'm healthy apart from the arthritis, so I don't want to go through it all again. Also, I received my ostomy disposal bags from America, they are great and will probably get more in time. It's a shame the shipping costs were $53 Australian, more than the cost of the bags, so got a $97 bill for a hundred bags. They will be great for our cruise in 2021 and good for traveling in our caravan, but will stick to the doggy doo bags for home. Cheers, Shorty.

Good for you. Sounds like you made the right decision.

Hi Shorty,

Does Otezla not work for your psoriatic arthritis? I hear ya about the prednisone, I was on it for years at stupidly high dosages. It will really f#k you up and really isn't a good long-term treatment, but sometimes it's the only thing that works. Sounds like you're proceeding with eyes wide open, good for you!

Regards,

Bob

Welcome to the refusal club! These decisions are a very personal matter  but it is really heartening to hear you share your reasoning and decision making. It was easy for me because the condition that preceded my stoma would undoubtedly have returned if I had it reversed.

Best wishes

Bill

Hi Bob, haven't heard of Otezla. My rheumatologist has had me on everything, but nothing worked except the prednisolone. I only take 7mg per day. I would love to take more, but I don't want the extra damage. I'm still only 80 percent pain-free. I already have thin skin and bones. Otezla is not my choice of drug, but sometimes quality of life wins out. Cheers, Shorty.

How to Stay Hydrated with an Ostomy with Collin | Hollister

Thanks, warrior, for your comments.

Hi Shorty,

Here are the links to 4 of the most recent meds for PA. I was under the impression that the biologics were wonder drugs for your condition... but your doc knows best. If you've already tried these, just disregard... but if not, give your doc a boot in the ass and give them a try. I take Humira and they just changed the formula to remove the citrate and now use a super thin needle. So you really don't feel the injection at all. Easy-peasy.

https://www.cosentyx.com/psoriatic-arthritis/how-cosentyx-works

https://www.otezla.com/psoriatic-arthritis/treatment

https://www.humira.com/psoriatic-arthritis/how-humira-treats-psoriatic-arthritis?cid=ppc_ppd_ggl_psa_bv_DDA_drugs_for_psoriatic_arthritis_Phrase_USIMMR190176 cid=ppc_ppd_ggl_psa_bv_DDA_drugs_for_psoriatic_arthritis_Phrase_USIMMR190176 gclid=EAIaIQobChMImNaDzKeP5gIVC4vICh10XgaPEAAYASAAEgIYiPD_BwE

https://www.simponiariatracktotreatment.com/?utm_source=google utm_medium=cpc utm_campaign=GO-USA-ENG-PS-Simponi+Aria-GP-BM-RN-DTC_PsA utm_content=PsA utm_term=2Bdrugs+for+2Bpsoriatic+2Barthritis gclsrc=aw.ds gclid=EAIaIQobChMImNaDzKeP5gIVC4vICh10XgaPEAAYBCAAEgIhFfD_BwE

There may be others as well, as treatment options for PA have exploded over the past few years.

Regards,

Bob

Thanks Bob started out on Methotrexate, then Enbrel, then Humira, Simponi, Consentyx injections and the last just recently Xeljanz. Don't know why none help me but will be asking about the one you have mentioned may not be FDA approved in Australia

Cheers Shorty.