Surgery Dilemma (long…)
Okay, first little background, I have Crohns, which has created inflammation in the last few feet of my small bowel. My gastroenterologist who put me onto Humira late last year, has continued to tell me that I need surgery, despite the fact that the Humira has now gotten rid of my inflammation leaving only scar tissue and a stricture. For quite a while I was thinking that there was no reason I could not go on living like that, but of course the stricture is a a problem in that it causes pain soon after I have any reasonable sized meals. I gastro kept telling me that I needed surgery, but didn't really answer my questions adequately about why, and what sort complications I might risk from it. So a couple of months ago I asked him I could get a second opinion and he agreed. I got a referral from my GP to go and see another gastroenterologist who was recommended to me by another Crohnie. The second gastroenterologist told me right up front, that I need surgery. But again he didn't really go into it a great deal. I am the sort of person who likes to feel like I have some control over what's happening to me and my treatment. I asked him if I could talk to somebody else about surgery and he referred me to the surgeon that another Crohnie recommended.
The surgeon was a very up-front, and gave me a very good description of exactly how he would perform the procedure, (giving me a temporary stoma), and why he always does it that way (he believes this way is better and cleaner and far less likely to create complications). I was quite impressed with him and decided at that point that if I was to have surgery that I would like him to do it.
The new gastro also referred me to a dietician, to help me to try to gain some weight to improve my general health so that my body would be better able to cope with surgery. At this point though I still hadn't really accepted the idea of having surgery. Not long after this I saw my GP and discussed it all with him. He basically read me the riot act and told me all the dire things that could happen to me if I didn't have surgery at this point. Scared the shit out of me! He made me think hard and long about having surgery, and made me realise that I'm not getting any younger (I'm 65 years old going on 66). If it is likely that I will eventually have to surgery one day, its better to have it now while still in my 60s rather than waiting till I get an obstruction maybe when I am in my 70s or older, and even less able to deal with surgery. Also at the moment I have a full-time job with sick leave available to me, which means that I can take paid leave to have an operation.
So… Two weeks ago I realised that I was down to my last two Humira pens, and urgently need to get bloods done and have an assessment done by my gastro to forward to Medicare (Australia) for approval. So I called the new gastroenterologist's office and spoke to one of his assistants explaining that I urgently needed an appointment for assessment and a script to have the blood tests done. I was assured that somebody would get back to me within 24 hours. One day, then two days passed…I called again. I was told that another assistant would contact me within a day or two to talk to me about the Humira. There was also a vague reference made to something that the gastroenterologist told his assistant about wanting to get me off Humira. Unfortunately this was not clarified.
The saga continued with myself calling his office every few days, promises being made, but no calls ever came back to me. So here I am thinking that maybe they don't want to give me an appointment for the Humira renewal, but they also don't want to tell me that openly! Who knows? So where do I go from here?
About this time, I received call from my old gastroenterologist’s assistant reminding me that they had made an appointment for me to do the renewal of the Humira next week, and did I want to cancel it? I said no, I will attend. They also supplied a script to get the blood tests done.
So I am between the horns of a dilemma! What do I do! I need my Humira - I know that if I stop taking it for any length of time my health will decline dramatically within a very short time, and that many of the old symptoms will come back again. I know this because some months ago there was a mix-up with my Humira scripts and I went two weeks without having an injection, and was a real mess as a consequence! If I'm to try and keep working at putting on weight, I need to have my health controlled so that I can keep eating a wide range and a reasonable amount of food in order to build myself up a surgery down the line. My new Gastroenterologist's team seems incapable or unwilling to give me a simple appointment to renew the Humira. I don't see that I have any option other than to go back to my old gastroenterologist for the Humira, and then ask him if he will mind me continuing to see the new gastroenterologist and surgeon to do forward planning for surgery. But I’m afraid that my new gastroenterologist and the old one will both start to see me as somebody who is just doing doctor hopping, and they both might decide that I am too much trouble to have as a patient. Also I have no idea of what the etiquette is with things like transferring from one specialist to another.
I'm hoping that somebody out there who has lots of experience with IBD specialists may view able to advise me if I'm doing the right thing or not, and can give me some clues about how to proceed.
My apologies for the length of this post. Thank you for listening.
Okay, first little background, I have Crohns, which has created inflammation in the last few feet of my small bowel. My gastroenterologist who put me onto Humira late last year, has continued to tell me that I need surgery, despite the fact that the Humira has now gotten rid of my inflammation leaving only scar tissue and a stricture. For quite a while I was thinking that there was no reason I could not go on living like that, but of course the stricture is a a problem in that it causes pain soon after I have any reasonable sized meals. I gastro kept telling me that I needed surgery, but didn't really answer my questions adequately about why, and what sort complications I might risk from it. So a couple of months ago I asked him I could get a second opinion and he agreed. I got a referral from my GP to go and see another gastroenterologist who was recommended to me by another Crohnie. The second gastroenterologist told me right up front, that I need surgery. But again he didn't really go into it a great deal. I am the sort of person who likes to feel like I have some control over what's happening to me and my treatment. I asked him if I could talk to somebody else about surgery and he referred me to the surgeon that another Crohnie recommended.
The surgeon was a very up-front, and gave me a very good description of exactly how he would perform the procedure, (giving me a temporary stoma), and why he always does it that way (he believes this way is better and cleaner and far less likely to create complications). I was quite impressed with him and decided at that point that if I was to have surgery that I would like him to do it.
The new gastro also referred me to a dietician, to help me to try to gain some weight to improve my general health so that my body would be better able to cope with surgery. At this point though I still hadn't really accepted the idea of having surgery. Not long after this I saw my GP and discussed it all with him. He basically read me the riot act and told me all the dire things that could happen to me if I didn't have surgery at this point. Scared the shit out of me! He made me think hard and long about having surgery, and made me realise that I'm not getting any younger (I'm 65 years old going on 66). If it is likely that I will eventually have to surgery one day, its better to have it now while still in my 60s rather than waiting till I get an obstruction maybe when I am in my 70s or older, and even less able to deal with surgery. Also at the moment I have a full-time job with sick leave available to me, which means that I can take paid leave to have an operation.
So… Two weeks ago I realised that I was down to my last two Humira pens, and urgently need to get bloods done and have an assessment done by my gastro to forward to Medicare (Australia) for approval. So I called the new gastroenterologist's office and spoke to one of his assistants explaining that I urgently needed an appointment for assessment and a script to have the blood tests done. I was assured that somebody would get back to me within 24 hours. One day, then two days passed…I called again. I was told that another assistant would contact me within a day or two to talk to me about the Humira. There was also a vague reference made to something that the gastroenterologist told his assistant about wanting to get me off Humira. Unfortunately this was not clarified.
The saga continued with myself calling his office every few days, promises being made, but no calls ever came back to me. So here I am thinking that maybe they don't want to give me an appointment for the Humira renewal, but they also don't want to tell me that openly! Who knows? So where do I go from here?
About this time, I received call from my old gastroenterologist’s assistant reminding me that they had made an appointment for me to do the renewal of the Humira next week, and did I want to cancel it? I said no, I will attend. They also supplied a script to get the blood tests done.
So I am between the horns of a dilemma! What do I do! I need my Humira - I know that if I stop taking it for any length of time my health will decline dramatically within a very short time, and that many of the old symptoms will come back again. I know this because some months ago there was a mix-up with my Humira scripts and I went two weeks without having an injection, and was a real mess as a consequence! If I'm to try and keep working at putting on weight, I need to have my health controlled so that I can keep eating a wide range and a reasonable amount of food in order to build myself up a surgery down the line. My new Gastroenterologist's team seems incapable or unwilling to give me a simple appointment to renew the Humira. I don't see that I have any option other than to go back to my old gastroenterologist for the Humira, and then ask him if he will mind me continuing to see the new gastroenterologist and surgeon to do forward planning for surgery. But I’m afraid that my new gastroenterologist and the old one will both start to see me as somebody who is just doing doctor hopping, and they both might decide that I am too much trouble to have as a patient. Also I have no idea of what the etiquette is with things like transferring from one specialist to another.
I'm hoping that somebody out there who has lots of experience with IBD specialists may view able to advise me if I'm doing the right thing or not, and can give me some clues about how to proceed.
My apologies for the length of this post. Thank you for listening.
