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margaret
09-09-2009, 03:54 AM
Since his Dx, my brother has had excruciating pain in his joints that comes & goes but is attributed to his WG. He's on pred (60mg while on ritux), cytox failed for him and he's getting ritux, but still in lots of pain. He just texted me that in addition to his usual dilaudid, he needed to use all the options available to him to function this morning: 2 percocets; 160mg of oxycontin; 30mg of oxycodone; and 4mg of dilauded every 2hrs. And now he's barely able to function. He says the percocets helped the most, but he's still in pain.

My heart is breaking for him... I'm just wondering if there is anything else he can try that might help? Has anything different worked for any of you?

PS - at least hes still in the hospital and is being watched carefully - he does get his chest tube out today and gets his ritux today too.

margaret
09-09-2009, 07:22 AM
I just wanted to add:

We're not very concerned about addiction at this point, because when it comes to being able to go home vs. be in the hospital, my brother is always eager to wean himself off the IV dilauded and other meds. Ironically, those are the meds that offer him the best relief.

Sangye
09-09-2009, 09:54 AM
Wow, Margaret, that is just not okay. Until about 4 months pre-diagnosis, my only symptom of Wegs was severe joint pain for about 8 months. I really know that pain well. Something is wrong if he's needing that kind of pain medication with Wegs treatment. The Wegs drugs should be working much better than that. 60 mg pred is usually enough to stop the pain within a day! The pain sometimes comes back as you lower the dose down the road, but usually not until you get below 20 mg or so.

I know he began on ctx and pred. What was his initial pred dose? I started on 1,000 mg IV solumedrol for 3 days, then dropped to 60 mg and down from there over the course of about 8 mos. Sometimes that initial IV pred (or at least 80 mg) is necessary to put the fire out while the other drug kicks in and controls the Wegs over time.

Are they still consulting with JHU, CC and Mayo Rochester? Mayo AZ just does not have the experience to handle Wegs themselves. I know that from personal experience.

Also, I'm sure your parents as physicians are on top of this, but just in case, double check that he's not getting overdosed with acetaminophen (Tylenol), which is in drugs like percoset.

And yeah, becoming addicted is his least concern.

Sangye
09-09-2009, 10:00 AM
I thought of something else. Wegs make one 23% more likely to develop blood clots, particularly when it's active. Don't let anyone tell you the pred will protect him (ie, because it's an anti-inflammatory). If he's in pain like that, his inflammation is off the chart. I got a ton of leg and lung clots while on the 1,000 mg pred, and I was actually ambulatory.

Since he's in so much pain, he's probably not getting up and moving around often. Your parents should request anti-thrombosis inflators (whatever they're called) on his feet. Tell them to look up the WECLOT study--famous study about the prevalence of clots in Weggies.

margaret
09-09-2009, 10:46 AM
Sangye - we are all too aware about blood clots. Early on he had several PE's and has not 1, but 2, umbrella filters in his vena cava (the second due to clots forming above the first). He is being monitored for those (I believe hes got one in an arm right now) and is on heparin or something similar...

As for his steroid dosing - I know while he was here at the Mayo, he was on a gram of solumedrol (sp?)... his does of pred is so high right now because he's doing the ritux. He has one more infusion of ritux and then will follow up with Mayo afterwards. I'm not sure if they've been consulted on this pain thing since its always been something that comes and goes for him. I just didn't know how hard it was for him to manage until today.

The pain has always been an issue for him and was one of the clues (other than the worsening kidneys, etc) that the cytox treatment was failing him.

He did get the chest tube out today and will be getting some PT tomorrow. Hopefully moving about will help with the pain.

Sangye
09-09-2009, 11:01 AM
I'm just so sad to hear this-- he's only 18 and going through all this!

I'm sorry to hear he's had clots. You know, I don't even usually mention that right away, but it just leapt in my head.

Worsening joint pain is my first sign of Wegs activity, too. Movement actually worsens or causes mine, but I do hope that isn't the case for him. It'll be good to get the chest tube out at least. I hear they're very painful while in.

Please emphasize the pain with his docs, not just to get better pain control. My doc at Mayo AZ always used to offer me something for my pain, but I knew the pain was due to the Wegs not being controlled. He just wouldn't listen. My JH doc knows severe pain means active Wegs.

margaret
09-09-2009, 11:15 AM
I just spoke with my mother and I didn't realize that the first PEs my brother got were while he was on Lovenox... as soon as he got the WG Dx, he was put on the Lovenox because of the prevalence of clots in WG patients. Then he was on coumadin and had clots in his legs as well as hemmoraging in his lungs. He's on a coumadin now and still got a clot in his arm. Its a balancing act with him and blood thinners/anti-coagulants.

As far as the pain goes - the patients that fail on cytox/pred generally have more pain than those who do well on it. The pred will help about 80% of patients with pain - looks like he's one of the 20% that fail to respond to it. We're hoping the ritux treatment eventually helps..

Some Weggies are have more granulomas and others are more vasculitis... the vasculitis prone patients are more inflammatory and have a harder time with pain... thats my brother.

Sangye
09-09-2009, 11:26 AM
I had the same thing-- massive lung hemorrhaging at the same time as uncountable leg and lung clots. It was terrifying. I didn't have Wegs docs (or even Mayo AZ) then-- just my local docs in Flagstaff. They didn't even know about the Wegs and clot risk.

Until they get his inflammation levels under control, they may have to keep him on Lovenox instead of coumadin, because there's no difficulty maintaining proper anticoagulation. I wound up being on Lovenox for 2.5 yrs--it ain't no picnic. I'm back on coumadin now.

I haven't heard the granuloma vs vasculitis thing. Wegs is a vasculitis, it just doesn't always cause large granulomas early on, and in some people the disease is controlled before granulomas have a chance to form. I'm like that-- my lungs are a mess, but didn't form any granulomas until about 1.5 yrs into it. Even so, I just have a small one.

At any rate, I just hope this guy gets better soon. Fall in Arizona is beautiful. He should be enjoying it, you know?

margaret
09-09-2009, 11:42 AM
I guess some Weggies are more prone to granuloma end of the disease (ocular tumors, etc) and others are more prone to the vasculitis end of the disease... hard to explain.

I wish he was here in AZ - he's actually in TX, I'm the one here in AZ. And fall? Its still 100+ here in Phoenix... I'd love to be in Flag or somewhere up north about now!

Sangye
09-09-2009, 11:50 AM
Oh, I thought he was still in Mayo hospital and that you were all out there.

margaret
09-09-2009, 12:10 PM
I wish... they released him 2wks ago? I live here in PHX...

Sangye
09-10-2009, 08:42 AM
Margaret, I found this abstract that discusses the predominantly granulomatous presentation vs vasculitic. I get what it means. I think it's basically about tissue damage vs inflammation. I haven't heard other Wegs docs discuss it this way, so when I see my JHU doc next time I'll ask him.

This paper suggests that rituximab works best for vasculitic types. That's me, so I hope if/when I can start rtx, it works well!

Effect of rituximab on refractory Wegener granulom...[J Clin Rheumatol. 2008] - PubMed Result (http://www.ncbi.nlm.nih.gov/pubmed/18391678?ordinalpos=25&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum)

jola57
09-10-2009, 09:02 AM
Rituximab seems to work best for some people, I am sorry that your brother has so much pain and for so long. Addiction is the least of concerns for now unless this has happened before. Is he still in so much pain?

margaret
09-11-2009, 07:04 AM
Thanks you guys... he's having a much better day today... if his pain is still low over the next couple of days, he'll be able to go home this weekend!

jola57
09-14-2009, 05:58 PM
Wonderful, I hope it will continue to get better.

Pete
01-23-2016, 06:59 AM
Lisa McNutt shared this to my facebook page recently. I hope some of you find it useful: https://naidw.org/blog/members-myblogs/a-doctor-s-view-of-patients-with-chronic-pain-disease?utm_campaign=shareaholic&utm_medium=facebook&utm_source=socialnetwork

Birdie
01-23-2016, 09:09 AM
Lisa McNutt shared this to my facebook page recently. I hope some of you find it useful: https://naidw.org/blog/members-myblogs/a-doctor-s-view-of-patients-with-chronic-pain-disease?utm_campaign=shareaholic&utm_medium=facebook&utm_source=socialnetwork

Pete, you should have marked this: ATTENTION DEB!

I'll do it for you: ATTENTION DEB! and anybody else...

Read that link and remember it when going to doctors appointments. It should be titled "Anti-Spoon Theory", well maybe not, but it's the doctors equivalent of Spoon Theory.

debra
01-23-2016, 10:16 AM
Pete, this is cool... Thanks Pete... Seems weird seeing jola57, and sanjy, though I know their both ok, just not as active on here... Birdie, my friend, message received, loud and clear... Peace, out... Deb...

Birdie
01-23-2016, 04:32 PM
message received, loud and clear...

Yea, it demonstrates that doctors are people, they just don't let it show very often.

Alysia
01-24-2016, 01:25 AM
Lisa McNutt shared this to my facebook page recently. I hope some of you find it useful: https://naidw.org/blog/members-myblogs/a-doctor-s-view-of-patients-with-chronic-pain-disease?utm_campaign=shareaholic&utm_medium=facebook&utm_source=socialnetwork

Weired.. I cant open the link. Its written that my location - Israel - is blacklisted !
Curious, what is it ?
2351

debra
01-24-2016, 01:28 AM
Alysia, hello! Alysia, I'll try sending it to you, right now, direct from the page, sometimes this works when the link does not... Enjoy, the day, Alysia... Deb...XXo...

debra
01-24-2016, 02:09 AM
Alysia, check you're box... Deb...

drz
01-24-2016, 06:09 AM
A DOCTOR’S VIEW OF PATIENTS WITH CHRONIC PAIN DISEASE
Featured Monday, 21 December 2015 sitemanager Uncategorized 4040 Hits
December 20, 2015


As scary and frustrating as it can be to have a chronic disease, especially chronic pain, it is often equally frightening and concerning for the providers who care for such patients. One practitioner offers his viewpoints on what it is like to care for patients with chronic disorders and offers some helpful and practical advice for patients to follow. There also is much for healthcare providers to learn from this as well.


The following compassionate “Letter to Patients” is reprinted below in its entirety from the blog, “Musings of a Distractible Mind (Thoughts of an odd, but not harmful primary care physician)” written by Rob Lamberts, MD, who practices in Georgia [learn more about him here]. It is reproduced by permission under a Creative Commons Copyright License agreement.


We have never before reproduced another blogpost in this way. However, when it was first written, on July 14, 2010 and posted [here], this article stirred tremendous interest among readers (more than 400 comments) and it seems worth bringing to the attention of our UPDATES audience of professionals and patients. We also want to thank Bob Twillman, PhD (of the American Academy of Pain Management) for alerting us to this letter via Twitter.

Dear Patients:


You have it very hard, much harder than most people understand. Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like.


How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue? How do you decide when to believe them or when to trust your own body? How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality? I can’t imagine.


But I do bring something to the table that you may not know. I do have information that you can’t really understand because of your unique perspective, your battered world. There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you. It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past. It may not seem important, but trust me, it is.


You scare doctors.


No, I am not talking about the fear of disease, pain, or death. I am not talking about doctors being afraid of the limits of their knowledge. I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job.


We are not special. In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help. We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.


But chronic unsolvable disease stands square in our way. You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you. We don’t want to face things we can’t fix because it shows our limits. We want the miraculous, and you deny us that chance.


And since this is the perspective you have when you see doctors, your view of them is quite different. You see us getting frustrated. You see us when we feel like giving up. When we take care of you, we have to leave behind the illusion of control, of power over disease. We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress. You are the rock that proves how easily the ship can be sunk. So your view of doctors is quite different.


Then there is the fact that you also possess something that is usually our domain: knowledge. You know more about your disease than many of us do — most of us do. Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder — your defining pain — is something most of us don’t regularly encounter. It’s something most of us try to avoid.


So you possess deep understanding of something that many doctors don’t possess. Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease. It’s like a parent’s knowledge of their child versus that of a pediatrician. They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.


So when you approach a doctor — especially one you’ve never met before — you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have. You see why you scare doctors?


It’s not your fault that you do, but ignoring this fact will limit the help you can only get from them. I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand. You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously.


So let me be so bold as to give you advice on dealing with doctors. There are some things you can do to make things easier, and others that can sabotage any hope of a good relationship:


Don’t come on too strong — yes, you have to advocate for yourself, but remember that doctors are used to being in control. All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion. That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start. Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.
Show respect — I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease. These doctors should be avoided. But most of us are not like that; we really want to help people and try to treat them well. But we have worked very hard to earn our position; it was not bestowed by fiat or family tree. Just as you want to be listened to, so do we.
Keep your eggs in only a few baskets — find a good primary care doctor and a couple of specialists you trust. Don’t expect a new doctor to figure things out quickly. It takes me years of repeated visits to really understand many of my chronic disease patients. The best care happens when a doctor understands the patient and the patient understands the doctor. This can only happen over time. Heck, I struggle even seeing the chronically sick patients for other doctors in my practice. There is something very powerful in having understanding built over time.
Use the ER only when absolutely needed — Emergency room physicians will always struggle with you. Just expect that. Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home. They might not fix your pain, and certainly won’t try to fully understand you. That’s not their job. They went into their specialty to fix problems quickly and move on, not manage chronic disease. The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.
Don’t avoid doctors — one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address. I can’t work that way, and I don’t think many doctors can. Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made. It’s OK to keep a list of your own problems so things don’t get left out — I actually like getting those lists, as long as people don’t expect me to handle all of the problems. It helps me to prioritize with them.
Don’t put up with the jerks — unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you. Some docs are not cut out for chronic disease, while some of us like the long-term relationship. Don’t feel you have to put up with docs who don’t listen or minimize your problems. At the minimum, you should be able to find a doctor who doesn’t totally stink.
Forgive us — Sometimes I forget about important things in my patients’ lives. Sometimes I don’t know you’ve had surgery or that your sister comes to see me as well. Sometimes I avoid people because I don’t want to admit my limitations. Be patient with me — I usually know when I’ve messed up, and if you know me well I don’t mind being reminded. Well, maybe I mind it a little.
You know better than anyone that we docs are just people — with all the stupidity, inconsistency, and fallibility that goes with that — who happen to doctor for a living. I hope this helps, and I really hope you get the help you need. It does stink that you have your problem; I just hope this perhaps decreases that suckishness a little bit.


Sincerely,
Dr. Rob

debra
01-24-2016, 06:20 AM
Drz, thanks for putting it all out, I guess some can't get the link? Drz, you're cool... Deb...

Alysia
01-25-2016, 01:41 AM
Its touching, genuine and beautiful. Thanks drz.
Actually I think we need to carry this letter and give it to our docs. Deb ??

debra
01-25-2016, 12:37 PM
Alysia, I can't even get em, to check out an article, explaining, wegeners! So... Who knows, miracles to happen, right? Deb...

debra
01-25-2016, 12:39 PM
Ah!!! Do, happen! Not to... Why no editing for me???

Lilly
01-25-2016, 11:28 PM
This is such an amazing letter. It has helped me this past year, as I have had to move, and leave a Dr. with whom I had 11 years with, treating my Wegeners Dz. I began seeing her after being diagnosed and treated for the first 10 years of my Wegeners by a Dr. who I had a true connection with, because the technically "saved my life". Wegeners was very rare, and the fact that he knew of the dz and was able to recognize it in me was a miracle. He also worked with 2 other Drs who had been treating me for a year, and were totally frustrated by the fact that I was only getting worse, not better, so it was really a great group, once they knew what they were dealing with! When I had to leave because of my husbands job, it was just too far to drive for appts. So I was devastated, and didn't know what I would do. They were like my family. (sounds silly, but its true) Fortunately I moved close to UAB in Birmingham Ala. Its a University and Medical Center. They do tons of research on rare diseases, etc. I found a Rheumatologist that I clicked with immediately. She was very interested in me, and very knowledgeable in Wegeners Dz. It was a match made in heaven. For 11 years I felt I was in good hands, and even took part in "first time" procedures for my "saddle nose" by a Super Plastic Surgeon. And also was treated for tear duct issues that began, as the Wegeners kept on its path of destruction in my sinuses and nose. I could go on. It was actually fun, and I felt secure with my "team". Then life happened........after 20 yrs of marriage, my husband and I divorced. The next 5 years were a nightmare. I had to move back home to be close to family, and the task of finding that "right" doctor for me began. Lots of Prayer. The letter written by Dr.Rob is such a great insight into helping me choose my doctors. I do have a great "team", although I am still trying to make some adjustments, and get more confidence in my Rheumatologist. I totally did the thing that Dr.Rob said was something NOT to do.......I went in with my list of ALL the issues I had been having, and telling him that I felt I was having a Wegeners flare. I talked a mile a minute, and just spewing all my recent procedures and hospital stay.......Poor Dr., He looked like a deer looking into headlights! I left very discouraged and felt he could never be my doctor. He just didn't understand me and must know nothing about wegeners. Then I read the letter. Wow, I had really screwed up! Also, I did not take into consideration my doctors personality. He is quiet, a thinker, very thoughtful, not making quick decisions. I found out from my Aunt who has been going to him for years for her RA. I am having some issues now, and I still feel like I wish he would be more aggressive with my treatment. But I'm giving him the benefit of the doubt, as now he is consulting and working with one of my other doctors, and together they are doing a good job. I still have a question about keeping my Rheumatologist, but will take it one step at a time. I read this letter from Dr. Rob occasionally, just to keep myself in check! Blessings and Love,

Alysia
01-26-2016, 03:14 AM
Thanks for sharing Lilly. its such a blessing to have a good doc. many times it makes the difference between life and death for us. I hope that your rheumy will finally become a decent one. I guess you are seeing him right now so praying for you my friend. with lots of love.

Jaha
01-26-2016, 11:38 AM
I want to thank you all for posting this letter and talking about this subject. I confess, I do scare doctors. I do it probably because of working around them for 30 some years. I also had to advocate for my Dad, when they could not find what kind of cancer he had until 48hrs before he died. I wish I didn't question everything they tell me, but I do. I have caught even the best of the WG specialists in contradictions, so yes they are humans and do make mistakes. Some of those mistakes we can't afford. I really wish I could just go in the offices of those docs one day sit there like a lady and say oh thank great one,(I'm kidding, I am polite, I say thank you). I hate when they tell me that we are in this together. I guess I'm just not feeling it yet!

debra
01-26-2016, 04:31 PM
Jana, hi! I think its a good thing to always question, it is you're life after all, not theirs. I agree this article is great for reminding us, but did we really think different? I know people like my parents for example, believe doctors are like gods, and this is the worst, mind set to have, in my opinion... I'll stink with questioning everything, while remaining respectful assertive and nice, and hope for the best... Unfortunate for me, I've struck out finding that doctor, who's willing to really see and here... This will change soon, though, I'm confident... Nice seeing you, Jana... Deb...

debra
01-26-2016, 04:35 PM
Oh, man! Sorry! Typos! I cant seem to get a break! Hear, and stick, not stink! Haha... Do I really need to sign off? Me, of coarse... Queen of typos...

drz
01-27-2016, 12:28 AM
I want to thank you all for posting this letter and talking about this subject. I confess, I do scare doctors. I do it probably because of working around them for 30 some years. I also had to advocate for my Dad, when they could not find what kind of cancer he had until 48hrs before he died. I wish I didn't question everything they tell me, but I do. I have caught even the best of the WG specialists in contradictions, so yes they are humans and do make mistakes. Some of those mistakes we can't afford. I really wish I could just go in the offices of those docs one day sit there like a lady and say oh thank great one,(I'm kidding, I am polite, I say thank you). I hate when they tell me that we are in this together. I guess I'm just not feeling it yet!


Health care is a crap shoot! Whether you get good care on any given visit depends upon a lot of factors, most of which are beyond our control. We can help by selecting doctors we trust to generally try their best and who might have the skill and expertise we need to help with our presenting symptom. How well we present our issue or concern depends upon us? But how busy or rushed the doctor is that day we can't control. Even the best doctors may have a down day or off day when they miss some thing. And everyone can make a mistake. And symptoms can vary and change which misleads us as well as the diagnosing doctor.

I remember when I was in ICU my health care advocate spent a lot of time trying to get the various doctors involved in my care to to agree upon what to try next. Each specialist had their viewpoint regarding the care for their "organ" or specialty of care but they often conflicted. What might be good for my lungs could be bad for my kidneys etc. So some times getting a consensus takes a lot of work and luck. And some times it is also wrong as the standards for "best case care" keep evolving with new research and information and treatment procedures with new drugs etc. A physician friend told me recently that research indicates that often, probably the majority of time, the care given for any presenting symptom does not meet the standards for best case care.

Birdie
01-27-2016, 02:44 AM
How well we present our issue or concern depends upon us?

And everyone can make a mistake.

This thread seems to have taken a good turn, not that there was anything wrong with the pain management topic, but doctor management is critical.

drz
01-29-2016, 04:12 AM
I am diligently working on pain management right now 24 hours after surgery to repair a double hernia. Usually pain after surgery doesn't bother me too much but this time it seems to be a major challenge.

MikeG-2012
01-29-2016, 04:15 AM
I am diligently working on pain management right now 24 hours after surgery to repair a double hernia. Usually pain after surgery doesn't bother me too much but this time it seems to be a major challenge.

Three things I'll say about pain management when on Rx pain pills: fiber FIBER, and more FIBER!! (-8

debra
01-29-2016, 04:55 AM
Drz, hi... I hope you feel better... Odd, my brother who's never had surgery ever, just had hernia surgery as well... Id say his almost fifty three years with none, hes done ok... Take it easy Drz... Debra...

Jaha
01-29-2016, 12:00 PM
Drz,
I hope you are feeling better soon and are taking good care of yourself. :hug2:

Pete
01-29-2016, 12:36 PM
Hope things are going better now.

Alysia
01-30-2016, 04:28 AM
Get well soon drz. Please update us. Keeping you in my prayers ♡♡♡

drz
01-30-2016, 01:45 PM
I went to walk in clinic tonight because of concern about infection. WBC is only slight elevated over my usual numbers but that usually means an infection is starting so I got some Clindamycin antibiotic to take for next week. Lot of swelling in area which they say is normal from bruising from surgery. But pain is slowly decreasing and more intermittent now. It was often painful before the surgery. The surgeon said the worst one had the colon trapped inside the hernia which can be very serious but i hope they fixed it in time so it will heal OK. I will learn more about surgery on next visit on Tuesday. I felt well enough to go out and eat afterward so that is a good sign that I should rejoin the land of living in a few days. Thanks for the well wishes and concern.

PS one fringe benefit of having such a surgery was no one said you "don't look sick". Instead it was the opposite, "Are you sure you should be out of bed walking around cause you look awful."

Birdie
01-30-2016, 02:40 PM
I got some Clindamycin antibiotic

Watch out with that... it's a broad spectrum antibiotic which can cause massive colon issues. Probiotics might be your best pal.

debra
01-30-2016, 03:58 PM
Drz!!! Good seeing you... Get rest!!! Deb...

drz
01-30-2016, 07:07 PM
Watch out with that... it's a broad spectrum antibiotic which can cause massive colon issues. Probiotics might be your best pal.

I am hoping a bit of diarrhea since I am fearful of constipation from pain meds and am also taking several laxatives and a gallon of prune juice.

Alysia
01-30-2016, 10:22 PM
Thanks for the update drz. I am glad you were able to get the help and that you are doing better after all. It takes time to heal. I think that they should have give you antibiotics from the beginning. Hang in there and take care. Keeping you in my thought & prayers, with love ♡♡

Birdie
01-31-2016, 07:52 AM
I am hoping a bit of diarrhea since I am fearful of constipation from pain meds and am also taking several laxatives and a gallon of prune juice.

Now I'm sorry I brought it up. :)

The risk with that antibiotic is c-diff infection, that's was I was warning about. It kills all the flora and fauna in your colon which allows the c-diff infection to take over. Untreated, c-diff is nearly 100% fatal in a few weeks. Clindamycin should automatically come with a massive supply of probiotics, at least a few month's worth.

debra
01-31-2016, 10:39 AM
Haha!!! Birdie... But, very good advice, and coming from you!!! ??? B. Deb!!! Ignore that b!!! I see it, all right, just can't get to it...

spiritscript
02-01-2016, 02:21 AM
I am diligently working on pain management right now 24 hours after surgery to repair a double hernia. Usually pain after surgery doesn't bother me too much but this time it seems to be a major challenge.
Is the hernia just because you had one or does it go with Wegeners? Thanks!

drz
02-01-2016, 11:18 AM
Is the hernia just because you had one or does it go with Wegeners? Thanks!

Hernias can have many causes. I apparently had one years ago but it was asymptomatic. This time one was very painful and the other minor so as to not be felt by me. Five days afterward the pain is decreased and generally less severe and less frequent than it was before the surgery. The pred might have contribute to some muscle weakness and constipation can also be a cause which could relate to some of meds I take. Age and Wegs and Diabetes might also be contributing factors although not considered direct causes but the meds and diabetes and Wegs make surgery more complicated and healing slower but I think it will turn out OK. Straining and heavy lifting are often considered causal factors too.

Thanks for interest and concern.

Alysia
02-02-2016, 01:18 AM
Thanks for the update drz. I am glad you are feeling better. Keeping you in my thoughts & prayers ♡♡♡

Jaha
02-03-2016, 12:09 PM
drz

Sounds like you are doing pretty good for the surgery that you had. I am sorry that you now have fight the infection. Keep healing and keep letting us know how you are doing. Take care!

drz
02-04-2016, 09:24 AM
drz

Sounds like you are doing pretty good for the surgery that you had. I am sorry that you now have fight the infection. Keep healing and keep letting us know how you are doing. Take care!

The good news was when I saw the surgeon he said I didn't have any infection, just excessive bruising and swelling along with bladder spasms causing the pain so he stopped the antibiotic. He gave me some thing for the bladder spasms which seemed a help a little and put me on regular schedule of pain meds four times a day to reduce the pain and swelling too. He also told me with my health issues that my healing would be slower so expect another week or two before things feel a lot better. One week after surgery I feel better now although I still have sharp pains in one incision area where there was a lot work done and relocation of things affected by hernia. The pain meds make me tired so i sleep a lot now, sort of like the fatigue I had back during the early stage of my first treatment. After a couple naps I was able to do some light things today. So things are looking better for me.

Middlesista
02-04-2016, 09:41 AM
I read that you are staying on top of bowel r/t potential for constipation with pain meds. Rest up and take care and do the best you can with nutrition to aide your healing.

Jaha
02-04-2016, 12:08 PM
drz
That is really good news, that you do not have an infection. You know now more about what they had to do in surgery. Just take it easy and keep on eye on the wound area. Baby steps is the best route for healing. Wishing you all the best!

debra
02-04-2016, 03:24 PM
Drz! Hello... I hope you missed me Drz????? Haha... Drz, I'm so happy, to hear you're doing better... My brother over did it, just recently after I mentioned he also had hernia surgery. Drz, don't be that guy! Just take it slow, and if any droughts, sorry, I meant doughts, take it down another notch, better safe than sorry Drz... You're lucky I'm going to avoid telling my horrendous, story, of my infection after stomach/ intestinal surgery... Let's just say, it involves green stuff!!! And split open incisions... Take care, Drz... Sorry, for the typo!!! Deb...