How did you know it was time for surgery?

[Polaris]

Hi everyone,

I'm currently in the gray area of wondering if it's time for surgery. I just found out that I've built up antibodies to Humira, after a year and 4 months on it. Before that I was on Remicade but had built up antibodies to that as well. I've tried 6MP but could not tolerate it (extreme nausea and vomiting while on it). I've never been on sulfa meds because my GI wanted to start with a 'top down' approach, and really I'm at a point where I doubt they'd help right now anyway.

My Crohn's is in the terminal ileum, and according to a CT done a few days ago it's starting in my colon as well (although it's very mild at this point).

So how do you know when to stop trying med after med and just get the resection? I've been in a flare for 4 long months and am just getting worse. Extreme pain, nausea, vomiting, weight loss..

Some people tell me to stay away from surgery but I can't go on like this. I can barely get out of bed, I can't work, I have no life. All I pray for is relief from this pain. I know the risks, but is it worth it to just suffer like this day after day?

Any thoughts/opinions/experiences would be appreciated, thanks. :smile:

 

[DJW]

Stay away from surgery but once meds stop working and your quality of life disappears it time to consider it. You want to avoid emergency surgery. Personally I prefer to do it before crohns complications set in.

 

[Polaris]

Stay away from surgery but once meds stop working and your quality of life disappears it time to consider it. You want to avoid emergency surgery. Personally I prefer to do it before crohns complications set in.

My quality of life definitely has disappeared. I spend my days in bed, in pain. If I eat I either experience excruciating pain and/or throw up. I can't work (have been on disability for the last 4 months). I can barely take a shower or do household chores most days.

Is your opinion on staying away from surgery due to scar tissue build up and/or that it's the terminal ileum specifically? Just curious.

 

[Lam123]

How about any of the new biological that have come out?

My opinion on it is, as soon as I have run out of medication, which I am getting to that point, and my quality of life is not good, then I would consider surgery. I agree, much better to have it done not as an emergency. My GI said he recovery is easier if it's not an emergency.

 

[Polaris]

Well my last option is Entyvio, and I would like to have one medication I haven't yet tried on the back burner for maintenance/to stop reoccurrence after possible surgery. There are other biologics like Cimzia but I figure because I've built up antibodies to Remicade and Humira already I would to Cimzia as well, since they're all similar in make up. I've researched Entyvio a little and it seems to be developed differently, more gut-specific, not to mention IBD specific. Not just a biologic for all autoimmune diseases.

 

[Lam123]

Have you tried pairing up a biologic with something like Imuran? It might help not build antibodies.

 

[Polaris]

Have you tried pairing up a biologic with something like Imuran? It might help not build antibodies.

I haven't, my doctor never suggested that actually. Her big thing is methotrexate which I was willing to add with Humira, but I wanted to have the antibody test done first (didn't want to just add on more meds if the main one wasn't working). And since Humira isn't in fact working anymore, I'm not sure what the next step is.

 

[DJW]

My quality of life definitely has disappeared. I spend my days in bed, in pain. If I eat I either experience excruciating pain and/or throw up. I can't work (have been on disability for the last 4 months). I can barely take a shower or do household chores most days.

Is your opinion on staying away from surgery due to scar tissue build up and/or that it's the terminal ileum specifically? Just curious.

Only because it's not a permanent fix. When I was diagnosed treatment options were limited and they failed for me. I've had a lot of surgery. I've delt with lots of crohn's complications over the years. I've also had scare tissue problems. Surgery gave me a chance for a life.

Your in pain, can't eat, can't work, can't do much of anything...for me that is no way to live.

 

[Polaris]

Only because it's not a permanent fix. When I was diagnosed treatment options were limited and they failed for me. I've had a lot of surgery. I've delt with lots of crohn's complications over the years. I've also had scare tissue problems. Surgery gave me a chance for a life.

Your in pain, can't eat, can't work, can't do much of anything...for me that is no way to live.

Thank you for sharing your experience I'm so sorry you've had to deal with so many complications.

My thinking at this point has been that even though it isn't a permanent fix and I know it'll come back at some point (especially since it's already starting in my colon), I would at least have relief for some amount of time (hopefully). Like you said, it's a chance. I just can't imagine living the rest of my life in bed, or the next big chunk of it at least. If the surgery doesn't work, at least I tried? Or am I being too naive here?

 

[Lam123]

Maybe moving forward you could pair the new biologic with mtx, or save mtx for a possible maintenance drug after surgery.

 

[Polaris]

Maybe moving forward you could pair the new biologic with mtx, or save mtx for a possible maintenance drug after surgery.

I will def ask my GI about that, thank you

 

[Lam123]

No problem. I was on imuran on its own for many years and it gave me wonderful remission. Always a possibility. I'm surprised your doctor never offered to pair the biologic with mtx from the beginning.

 

[Polaris]

No problem. I was on imuran on its own for many years and it gave me wonderful remission. Always a possibility. I'm surprised your doctor never offered to pair the biologic with mtx from the beginning.

Now that I know what I do, I'm surprised too. I feel like she's let me go over the past 2 years and hasn't really put much thought into my treatment.

 

[Lam123]

Any other doctors available to you? Near you?

 

[Polaris]

Any other doctors available to you? Near you?

They're all in the same GI group so I don't know that it would change things much if I did switch. She has the most "experience" of them all.

 

[Lam123]

Ok. Well, I guess the best you can do is bring up these options. Do you see her soon?

 

[DJW]

Thank you for sharing your experience I'm so sorry you've had to deal with so many complications.

My thinking at this point has been that even though it isn't a permanent fix and I know it'll come back at some point (especially since it's already starting in my colon), I would at least have relief for some amount of time (hopefully). Like you said, it's a chance. I just can't imagine living the rest of my life in bed, or the next big chunk of it at least. If the surgery doesn't work, at least I tried? Or am I being too naive here?

You're young. You diserve better. After lots of surgery and seemingly endless complications (pretty much gave up hope of any improvement) I had a 20 year remission.

The crohn's returned again a couple yeas ago and I've had several more surgeries but hey, I had 20 crohn's free years. I hope you get at least 20 years.

 

[Polaris]

Ok. Well, I guess the best you can do is bring up these options. Do you see her soon?

Hopefully, I left a message with her office today for an appt.

 

[Polaris]

You're young. You diserve better. After lots of surgery and seemingly endless complications (pretty much gave up hope of any improvement) I had a 20 year remission.

The crohn's returned again a couple yeas ago and I've had several more surgeries but hey, I had 20 crohn's free years. I hope you get at least 20 years.

Thank you, that really reassures me And I hope you can get back into remission soon.

 

[Lam123]

Let us know how you are doing.

 

[Muppetgirl]

I'm sorry you are suffering so much at the moment. My situation is different to yours but I agree with the others that where an element of choice is involved then quality of life is a key deciding factor. Also key for me is the risks of not having the op esp where my life could be threatened. You have to consider the risks and weigh these up against what you are facing now, as well as what your life could be like if surgery is sucessful and if it would be worse if it is not sucessful or there are complications.

I was once asked to rate my quality of life before radical surgery. I rated it around 20 out of 100. I felt guilty about that at the time, because I thought other people were so ill and its hard to see how ill I was, but it was honest, and an eye opener to me. I was in severe pain 24/7, unable to even sit because of deep rectal disease, my disease was out of control, I'd lost my job, my car, everything I had. I had zero prospects staying that way and for me it was a no brainer that that particular op was needed.

From my surgeries, I have developed a host of complications, some of them life changing. But hand on heart, if I could go back I would make the same decisions. Almost all of us with lifelong disease have to make adjustments, but you are still entitled to the best quality of life accessible to you. It shouldn't be undertaken lightly and its totally an individual thing but sometimes its the best thing.

Whatever treatment you decide to pursue - surgical or medical - I really hope things improve for you.

 

[Teacrumb]

I regret waiting as long as I did. It was a rough recovery. I experienced a lot of complications. And I would do it again in a heart beat. I knew I was ready when I realized that even if surgery was high risk with only 1% chance of success, I would do it just for that 1% chance for a better life.

The important thing is to stay close to your doctors after surgery. Do not be surprised if you need another surgery soon after or develop a serious complication like infection (like I did). Do not be surprised if the disease resurfaces at the surgical site soon after surgery. Symptoms probably will noy be severe but the disease does usually return. My CT scans showed a recurrence within weeks. However, my symptoms were minor and I was able to go medication free for about a year before starting a maintenance drug (mercaptopurine). Three years later, I am in a much better place.

I feel you on the 6mp. The first time I tried to take it, I was in the height of my illness. I couldn't handle it on top of all my other symptoms. But after surgery, I was able to get back on it. I had severe nausea and vomiting for about a month and a half, soldiered through it, and the side effects gradually wore off. I wouldn't completely rule it out if I were you. It gives peace of mind to be on a long-term maintenance drug (in my experiencem humira and remicade are not long-term).

Sorry for the typos. Typing on my ipad good luck. I truly wish you the best. I remember being in your shoes, and it is a scary place.

 

[Polaris]

I'm sorry you are suffering so much at the moment. My situation is different to yours but I agree with the others that where an element of choice is involved then quality of life is a key deciding factor. Also key for me is the risks of not having the op esp where my life could be threatened. You have to consider the risks and weigh these up against what you are facing now, as well as what your life could be like if surgery is sucessful and if it would be worse if it is not sucessful or there are complications.

I was once asked to rate my quality of life before radical surgery. I rated it around 20 out of 100. I felt guilty about that at the time, because I thought other people were so ill and its hard to see how ill I was, but it was honest, and an eye opener to me. I was in severe pain 24/7, unable to even sit because of deep rectal disease, my disease was out of control, I'd lost my job, my car, everything I had. I had zero prospects staying that way and for me it was a no brainer that that particular op was needed.

From my surgeries, I have developed a host of complications, some of them life changing. But hand on heart, if I could go back I would make the same decisions. Almost all of us with lifelong disease have to make adjustments, but you are still entitled to the best quality of life accessible to you. It shouldn't be undertaken lightly and its totally an individual thing but sometimes its the best thing.

Whatever treatment you decide to pursue - surgical or medical - I really hope things improve for you.

I never thought to rate my quality of life in that way but man is that an eye opener as you said. I'm having to move back in with my mom because I can't work and afford my apartment anymore. In addition to the pain, nausea/vomiting, etc., and not being able to care for myself.. I feel like I've lost everything. And I don't have the health or energy to fight for it back.

Thank you so much for what you shared :hug:

 

[Polaris]

I knew I was ready when I realized that even if surgery was high risk with only 1% chance of success, I would do it just for that 1% chance for a better life.

That's exactly how I feel at this point.

I would be willing to try 6MP again in the future, definitely not taking it off the table. I've heard a lot of people who've had success with it.

 

[hawkeye]

I was on Imuran and 5-ASA for almost 24 years and had a great remission from it. However, in 2010 and 2011 things started to get worse - they couldn't get the scope through and I had a blockage after a colonoscopy. That's when I started thinking about surgery.

When my GI said in 2013 that it wasn't a question of if I needed surgery but when I stared thinking about it. I booked the surgery consult in late 2013, had it in January 2014 and had the surgery about 6 weeks after that.

I was in a fair bit of pain before the surgery and had lost about 40 pounds in the year before surgery. My quality of life suffered as well, I was tired most of the time and did not have hardly any energy.

I am glad I had the surgery - my colon was starting to perforate. I think it is better to schedule surgery than to wind up at the ER with a blockage or perforation and have emergency surgery. As for post-surgery complications, I developed a small bowel obstruction and wound up in the hospital for another week after I was released.

 

[Polaris]

My doctor emailed me and is against surgery at this point. Won't even consider it. I don't understand the thinking of we must keep your all your intestines!! when there are a few inches that are ruining my life. Her justification is, of course, rate of reoccurrence. I'm aware of that and right now it doesn't phase me.

Also she prescribed me another TNF blocker, when it's obvious they're not working for me. We had already agreed to Entyvio but now she's backtracking. I'm SO frustrated!

I asked for a second opinion with a surgeon asap.

 

[DustyKat]

Do you have inflammation alone or is there scar tissue there stelarjess?

Dusty. xxx

 

[Polaris]

Do you have inflammation alone or is there scar tissue there stelarjess?

Dusty. xxx

I have narrowing which I'm assuming is from scar tissue. They aren't very clear on how many cm exactly on the CT are inflamed.. how much narrowing, etc.

 

[DustyKat]

If you do have scar tissue then no drug will penetrate it and once it becomes symptomatic, as you are, then surgery is your only option.

Since you are not responding to meds then the longer inflammation is present the greater the chance that scar tissue will develop.

Dusty. xxx

 

[Polaris]

If you do have scar tissue then no drug will penetrate it and once it becomes symptomatic, as you are, then surgery is your only option.

Since you are not responding to meds then the longer inflammation is present the greater the chance that scar tissue will develop.

Dusty. xxx

I agree, thank you for this info. I'm going to talk with the surgeon first and have him go over all my CT scans, colonoscopies, etc. I have lost complete faith in my GI right now.

 

[DustyKat]

I hope you soon have solid answers hun. :ghug:

Surgery is considered a last resort for the reasons you would well now, it isn’t a cure for Crohn’s, so preservation of bowel is the optimum goal. This works well while ever you respond to medication or don’t develop complications. Complications are what changes the equation and scar tissue is one of the complications of the disease.

It is imperative that they establish the cause of your symptoms. The small bowel, as its name suggests, is considerably smaller than the large bowel and as a result it won’t take a huge amount of narrowing to produce the symptoms you are experiencing. Again, if you have active inflammation and fail to respond to medication it will increase your chances of leading into chronic inflammation and ultimately scar tissue that causes stricturing. It is possible to live with scar tissue but only if it remains asymptomatic. I can understand why the GI wants to avoid surgery but unless you are dealing with acute inflammation only and minimal scar tissue then it is pointless.

Both of my children had terminal ileum resections early on in their diagnosis as they had perforating/fistulising disease. They had no choice but to have surgery and up until this point they have had very positive outcomes. Since surgery they have been in remission for 8.5 and 4 years respectively.

Good luck!

Dusty. xxx

 

[Polaris]

I hope you soon have solid answers hun. :ghug:

Surgery is considered a last resort for the reasons you would well now, it isn’t a cure for Crohn’s, so preservation of bowel is the optimum goal. This works well while ever you respond to medication or don’t develop complications. Complications are what changes the equation and scar tissue is one of the complications of the disease.

It is imperative that they establish the cause of your symptoms. The small bowel, as its name suggests, is considerably smaller than the large bowel and as a result it won’t take a huge amount of narrowing to produce the symptoms you are experiencing. Again, if you have active inflammation and fail to respond to medication it will increase your chances of leading into chronic inflammation and ultimately scar tissue that causes stricturing. It is possible to live with scar tissue but only if it remains asymptomatic. I can understand why the GI wants to avoid surgery but unless you are dealing with acute inflammation only and minimal scar tissue then it is pointless.

Both of my children had terminal ileum resections early on in their diagnosis as they had perforating/fistulising disease. They had no choice but to have surgery and up until this point they have had very positive outcomes. Since surgery they have been in remission for 8.5 and 4 years respectively.

Good luck!

Dusty. xxx

I understand my GI's wanting to preserve the bowel, but as you said I don't know how much scar tissue I have. I definitely have "extensive" inflammation as noted by my colonoscopy a few weeks ago. This isn't my first flare either, so I'm positive there is some scar tissue.

My plan right now is to have the surgeon review everything and go from there. If he feels it's not time for surgery I will completely respect and agree with him.

I'm so glad your children are in remission and doing well :hug:

 

[hawkeye]

At my first surgery consults in mid-2011 (2 different surgeons), it wasn't time, but by 2013 it was.

Glad to hear you are having the surgeon review the scans.

 

[Muppetgirl]

I agree its important to get as much clarity as you can. Just my personal opinion but the best specialists I have worked with have been those who view dealing with my ill health as a colloborative effort. Whether they were surgeons or medics. I am not in their shoes with their specialist skills & knowledge, so I took on board their view, equally they don't walk in mine and experience the day to day impact and loss, so they took on board my view. Where I had a choice (which wasn't always) we made the decisions together.

I think its a good thing to you are seeking a second opinion. And get a third if you want one. I really relate to your descriptions of your quality of life and I know how painful the losses are. You deserve the chance to explore all the options and have the pros and cons talked through. Being shut down before these conversations / further investigations have taken place doesn't seem that reasonable.

If there were no treatment options then it would be about making the best of what you have. But there are options and you have your whole life ahead of you. I understand the risks about recurrence and spread - endo has these problems - but you should be treated as are responsible adult, who is an agent over there own body. Once you have met the minimum medical criteria, risks are part of life, if you fully appreciate them then you should have a choice.

I have also had recurrence within in weeks post surgery, and since my low anterior resection I have gone to be newly dx with disease throughout my GI tract. Like I said yesterday I don't have regrets. For a while I had a window of an improved life and I was a lot happier and impact on mood is overlooked too. The thing is with spread and recurrence is that they are future possibilites, your awful symptoms and losses are actual and occuring right now.

Sorry I wasn't intending to write an essay! :blush: But I am very passionate about our right to make infomred choices (as you may have guessed!) We have such a loss of control over our bodies that a little automony can go a long way. We are the ones that have to live with these things and the best doctors have a huge respect for that. :hug:

 

[Grotbags]

You sound exactly the same as I was last year, I had run out of options re medication, I'd been on everything, and although they worked great initially, they stopped after a while.
Last lot I was on was Humira and Methotrexate, but those weren't cutting it.
I had come to the conclusion that the half life I was leading, wasn't worth diddly, and I'd be better off with the op.
I won't bore you with the in' s and out's, but a few months on, and four weeks post op ( ileostomy ) I can hand on heart say, it's the best thing I've done.
I now have zero pain, nausea, fatigue, reflux, it's all gone, I can hardly believe it, wearing a bag has been a small price to pay.
I realise that could all change, and no doubt Crohn's will effect me at some point in the future, but not today, and hopefully not for a good while.

 

[Matrix]

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1773273

SUMMARY

To argue for immediate surgery in all cases of Crohn's disease would ignore the potential for morbidity following surgery, and dismiss the beneficial effects of medical therapy, particularly with the possible advent of an exciting new era of immunomodulation. However, it is clear that surgery is mistakenly considered the “villain” in the management of this complicated disease. The evidence presented above should enlighten those entrenched clinicians and persuade them that not only is surgery an extremely good therapeutic modality for Crohn's but delay can lead to significantly greater pre and postoperative morbidity and significant decay in quality of life compared with implementing appropriate and timely surgical intervention.

I like this, because surgeries were a blessing for me in my life

 

[Matrix]

I hope you can get your surgery stelarjess

 

[Polaris]

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1773273



I like this, because surgeries was a blessing for me in my life

Thank you so much for this.

My doctor finally sent a referral to surgery but stated that "it's a mistake". Even for me to get a second opinion? She also told me that I need to realize that surgery is not the "end all, be all" and it won't cure the Crohn's. DUH. I know that! I've never said that I think surgery is a cure or that it will even work. I just want a second opinion, am I not deserving of that?

I am so fed up with her.

 

[DJW]

There is NOTHING wrong with a second opinion.

 

[Polaris]

I just needed to post this because I'm still so angry/hurt by my GI's email to me today:

"Even though you have a chronic and frustrating disease, not all your symptoms are due to the Crohn’s. I know you do not believe me, but it is true and i know this from looking at your data and from decades of taking care of a multitude of patients with multitudes of problems. I agree with her and that is why I’ve been asking for an endoscopy and second opinion. And even if most symptoms are due to the Crohn’s, you will still need to find a life with the Crohn’s and not expect to be rid of it, even for a few years with surgery. You need to focus your courage to deal with this, as you cannot hide from it. I have NEVER thought that i’ll be ‘rid’ of this disease or be able to hide from it.

I don’t know how much or even whether Irritable Bowel Syndrome, low pain treshhold, Low pain threshold!? I’ve been in pain for the past 4 months with NO pain meds.. that is not what I consider a low pain threshold. I am SO offended by this. Depression, fibromyalgia etc plays a part, but your symptoms are not all due to your small section of terminal ileum / small bowel.

I know that treating Crohn’s is very important at this time, and this will happen, but honestly, protecting your job and your reputation is MORE important. Not having a good reference will ruin your life. Crohn’s comes and goes. Do not discuss your health with ANYONE from work. Sharing info will not serve you well. Put a good face on your situation and speak with optimism. I mean.. what..?? I don’t even know how to comment on this it’s so ridiculous. I have a very supportive boss who has said my job isn't in jeopardy whatsoever, so I have no idea what she's referring to.

I will see you next for colonoscopy and endoscopy, not because I think there is new information, but because i think you need re-assurance. What kind of doctor says this to their patient? Especially when they’re in severe abdominal pain and JUST previously agreed that something else other than Crohn’s is going on?

I have sent referral to surgeon, but feel it is a mistake.” Well great, glad you feel it’s a mistake but it’s MY body and I DESERVE a second opinion.

 

[Muppetgirl]

I just want a second opinion, am I not deserving of that?

Yes, yes and yes again with bells on! :dusty:

It is not so much her opinion, but that she is trying hard to force it on you. :ybatty:

Fly free and see whats out there. And let us all know what YOU decide! :hug:

 

[Muppetgirl]

Oh wow stellajess,:eek2: I have just read through your email from her!!! I am im a rush so cannot say much but if you are unhappy and have the option of finding a new GI then it might be worth considering. As a clincian myself I don't like her tone. Its is interesting that she refers to multitudes, this is about you as an individual, and individualised care is important. Telling you how to act in you personal life is well beyond her remit. Anyway got to go. You are being strong though this. Good luck

 

[Matrix]

wow just wow
:eek2::ybatty:

 

[Polaris]

I know.. It's hard to even move on from what she said. This isn't the first time she's raised a red flag for me either so at this point I'm pretty much done with her. I don't plan to respond (yet) because I need to focus on the endoscopy and surgical consult right now, and don't want her to take those things away from me. How ridiculous that I'm scared of my doctor.

But I'm switching GI's as soon as those things are over. Also I'm having another Dr do my endoscopy (I can choose whoever's available, doesn't have to be my GI); I can't face her, no way.

 

[DJW]

stelarjess, that email is unbelievable. I think you're right in not responding right now.

 

[Grotbags]

Jeez what a condescending cow !.
Is there someone that you can complain to about her ?.
Her attitude stinks big time, she doesn't even appear to be listening .

 

[DustyKat]

Whoa…not much renders me speechless but this is a doozy! :ghug:

She manages to be both presumptuous and condescending and clearly feels she knows you far better than you do. :yfrown:

It is particularly disheartening to read her comments about the work situation. It just turns Crohn’s into something to be hidden and ashamed of. I am not saying that there aren’t work situations in which people are less than supportive but discouraging an open discourse with an employer is really over stepping the boundaries if it hasn’t raised by the patient.

TBH, I really don’t know what else to say stelarjess except if I received an email like that from my doctor i would just want to slap them! :eek2:

Dusty. xxx

 

[alex_chris]

Hey there, I posted on your other thread about entvyio and cimzia before seeing this one. So please ignore the other one.

I agree with many of the posters above that surgery does not make sense before you haven't exhausted all options. I had surgery (Crohn's also located in the terminal ileum) and the only way to stay in remission thereafter is with meds. Surgery for Crohn's is a last resort if you got heavy stricturing and other problems. If there are still meds to try, try those.

Also, I know you had problems with 6mp, just wondering if you ever tried to start aza (I know, it is the same thing as 6mp, but the body reacts differently to it, so the vomitting and other problems might not occur). In your case, starting with aza and then also with e.g. cimzia (Even though you built up anitbodies for humira/remicade) or entyvio is probably much preferred to surgery.

My two cents.

 

[Polaris]

It is particularly disheartening to read her comments about the work situation. It just turns Crohn’s into something to be hidden and ashamed of. I am not saying that there aren’t work situations in which people are less than supportive but discouraging an open discourse with an employer is really over stepping the boundaries if it hasn’t raised by the patient.

Exactly my thoughts as well. I'm pretty open about what's going on with me at work and my boss and coworkers are completely supportive. To say that my reputation would be in jeopardy because I shared that I have Crohn's is so ridiculous. We shouldn't hide.

 

[hawkeye]

Wow, what an e-mail. I am surprised that a medical professional would write in that manner.

 

[Polaris]

Well since I was able to schedule the surgical consult and endoscopy (both next week, endoscopy is with another dr), I decided to respond to her. You only have 1000 characters available in a message you send on the Kaiser website but I think I got enough in there for her to understand just how unsupportive, condescending, and unprofessional she is. I also suggested that maybe after 32 years of practice she's perhaps a little burnt out and has lost her compassion, and should rethink taking this out on her patients. And that I will be changing GI's asap (already called member services to get the ball rolling).

I feel better!

 

[hawkeye]

Sounds great that you were able to schedule the surgical consult and scope for nest week.Here's hoping you can get some results.

 

[DustyKat]

LOL! Well done stelarjess! :thumleft:

I hope you soon find another GI that you trust and who listens and validates your concerns. :ghug:

Sending loads of luck and well wishes your way. :heart:

Dusty. xxx

 

[Layla]

I hope writing that email to her made you feel really good!

To answer your original question, I knew it was time for surgery when I could really only eat babyfood or liquids for fear of having another blockage. This is after around 10 years of having partial and full blockages with the last one resulting in a 5 day hospital stay. I was put on 60mg of pred and saw no improvement, I was basically partially obstructed the whole time, living in fear for another full obstruction. Even so it took me 2.5 months to convince my GI that an op was now necessary.:yfrown:
I asked them several times if they thought there was any chance the stricture was due to inflammation and they said no they didn't think so but that didn't mean anything happened so in the end I forced the issue and I'm really glad I did.

The registrar did manage to say I was very unusual in wanting an op, really??? I don't think she really understands quality of life, of course I didn't want the op I just saw no other way to regain a decent quality of life!

I had no reason to think any medication was going to make a difference. However in your case you still have a chance that your 3rd biologic might work so it might be worth it to try that first.

And who knows, you might get a good GI this time who can help you make the right decision for you!

 

[Muppetgirl]

Good luck next week with the endoscopy and surgical consult stelarjess and I hope you end up with a GI you feel more comfortable with.

 

[Polaris]

Good luck next week with the endoscopy and surgical consult stelarjess and I hope you end up with a GI you feel more comfortable with.

Thank you, I hope so too! My primary already sent a referral for a new GI in a different facility.

 

[Lam123]

Sounds like a great start! Fingers are crossed for you.

 

[Grotbags]

Good for you !
Well done for standing up for yourself, so many people wouldn't.
Best of luck next week, hope you get a good result :ghug:

 

[Polaris]

I just wanted to thank you all for your opinions and support.

I met with an amazing surgeon today who validated and listened to me, and gave me some great information. He spent an hour with me and answered my millions of questions. He said considering surgery is definitely reasonable in my case, and at this point. He took into consideration my decreasing quality of life, and that I'm on my way to an obstruction soon based on how much narrowing I already have. Also the fact that I'm running out of meds to try.

He said I can keep trying the Cimzia for another month or two if I want (I've only had the first dose so far), it's up to me. But it's best to do the surgery while I'm relatively healthy and able, instead of waiting for emergency surgery or for me to get worse. Oh and that based on how little of the ileum will be removed I should have little issues with absorption or diarrhea. That was my main concern.

I can't tell you how refreshing it is to finally meet a doctor who LISTENS after the hell I've been through with my GI lately. So surgery here I come, and hopefully some relief!

 

[DJW]

I'm glad to hear your visit went well.

 

[Matrix]

Great news!

He is right that you have less risks if you are 'relatively' healthy, and it will be easier for you to pass through the surgery process.

 

[Muppetgirl]

Great to hear that you have a plan of action now and best of all that you had a positive experience of being heard. Hopefully you will regain some confidence in your specialists. Keep us posted with how you get on.