HEALTH UPDATE: OCTOBER 2015

Original Writing

I’m back! (Ish)

After what seems like forever, I’m finally getting into the swing of things again with regards to university assignments and blogging ๐Ÿ™‚

The last time I updated you all on my health, it had a rather dreary tone to it; I was left in the lurch with what I was actually suffering from and there never seemed to be an end to the pain. Not all that much has improved with regards to the pain, but I have a diagnosis!

Sphincter of Oddi Dysfunction. It sounds complicated (and it is) but ultimately, it all boils down to the after-effects of having my gallbladder removed. My body is currently struggling to process the flow of juices flowing from my liver to my pancreas, and the muscle which controls the flow of pancreatic juices from my bile duct into my duodenum (eh, such technical terms) is overwhelmed with stress to regulate all these juices, so it goes into spasm. Thus, the pain hits. Every time the muscle spasms, the pain hits my left side, where my pancreas is located, my right side, where my gallbladder used to be and my shoulder; I’m still unsure as to why and how my shoulder comes into this. At times the pain becomes disabling to the point where I cannot move, sit or stand without doubling over but most of the time, it is a background pain which is awfully uncomfortable.

After having a consultation with my former surgeon, he agreed on the above diagnosis which is apparently common with people who have undergone aย cholecystectomy such as myself. The only problem is how to tackle it!

Having explored every avenue possible including CT scans, MRI scans, X-Rays, ultrasounds and an endoscopy, which all came back with no indication of a latent stone or any obstruction to cause such pain, I was put on chronic pain relief. Having been on medication since the beginning of the year, both medical professionals and myself believe it’s time for something to be done. The next possible avenue to explore, however, is surgery. Nothing elaborate, a simple cutting of the muscle which is causing the agony. The only problem with this surgery is the risks involved; they’re slightly worrying! I have an appointment in 2 weeks time with a specialist in this area of surgery to discuss the pros and cons of the procedure with my parents and I.

So, thats the update so far! It’s not all doom and gloom anymore, despite being in pain for two and a half years ๐Ÿ™‚

Ciao for now,

A x

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12 thoughts on “HEALTH UPDATE: OCTOBER 2015

  1. Glad you got the dx.

    I had an ERCP with manometry (checked sphincter pressure which was crazy high) followed by a sphincterotomy (cut the sphincter) and temporary stent placement…all same time. It is a very frustrating issue and does not elimate attacks but rather reduces the frequency. The catch is having the ERCP done by someone who has done very, very many as it is such a delicate procedure and the occurence of post op acute pancreatitis is quite high.

    Good luck.

    Liked by 1 person

    1. Thanks so much for this! Really interesting to read – I’ve actually passed this on to my parents and we’ve agreed to take precautions as it is. We’re exploring different avenues with different consultants so hopefully I’ll get some news as to how we can tackle the condition. Thanks again and wish you well ๐Ÿ™‚

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  2. Thank you and you’re very welcome. And I apologize in advance for the novel…

    I share your frustration as I was in a similar situation – post chole pain for 5 years before they realized it was the pancreas and more accurately, SOD. They found gastroparesis 1st as apparently, that is also common post-chole.

    I did the 1st ERCP under the impression that I would be good as new ๐Ÿ™‚ but it does not work that way so I am glad that you and your parents are looking at everything carefully first.

    My primary GI referred me to a GI who is a pancreatic/biliary specialist at a tertiary care center who has performed almost 10,000 ERCPs (please ask them their “success rate” v. # of procedures). I felt better for several months (2 attacks in 6 months) then the sphincter closed again and we did another sphincterotomy. It’s 2years later and now I have maybe 1 attack a month and it sucks but it is better than before.

    My GI told me it is all about quality of life and I agree – ERCPs are risky but may help…the attacks will continue but not as frequently and one has to decide whether to take that risk so that they can have less flare ups of pancreatitis. For me, it was worth it (even the post op acute pancreatitis).

    Do you take pancreatic enzymes? Have they done an MRCP? Lol sorry I’m all up in your business

    Liked by 1 person

    1. Thank you so much for this information – it’s proved immensely helpful. How often were you having attacks before the operation in the 5 years post op? It’s great that the operation did help your quality of life, that’s all that matters essentially. It’s a shame that you still get attacks. Are they bad? An operation seems more likely so if you want, you can email me at anisahhamid96@gmail.com and we can compare notes etc haha. I do take enzymes and I have had an MRCP. Having more tests next week!

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  3. Hi, I’m Susie and just read your story. Sounds so much like mine. All the ERCP’s, causing chronic pancreatitis. Now SOD. Everyone scratching their head. All the time I’m doubled over answering a million questions. I guess the different doctors, surgeons, nurses don’t write anything down. Been dealing with it for 20 years, but the bad stuff these last three years. I’m afraid if I’m asked what number my pain is again I might flip. I’m thinking about laminating flip cards with the number 9 and 10 on them and just hanging them around my neck. I *think* I’ve got a good specialist on the case now. I’d love to gain some weight, oh and eating would be grand! Boost Breezes (online only) are my lifeline these last two months. This SOD, pancreatitis stuff is crazy cruel. I have Lupus too, so that’s adding a layer of “we don’t know what to do” to my case. But, I do have days here and there where I can function and see a light at end of tunnel. I think the medical profession may be trying harder these days to figure out how to help. Just can be pretty frustrating. I’ve had all the tests, MRCP, CT’s, EUS, ERCPS, MRIs, all because I had my gall bladder out years ago. Hang in there! There is hope on the horizon. Susie

    Liked by 1 person

    1. Thanks so much for this, Susie. I’m sorry to hear you’ve been suffering as much as you have. I can’t imagine what it must be like for such a long period of time. I agree, it’s always best to be positive. I’m now keeping myself busy so I don’t even have the time to feel down about it. It’s all about pain management, I guess – once you have the pain under control, it’s just a matter of living with a condition that may never be cured.

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