Big life update with big questions.

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Today marks one year since I had my Ileostomy surgery. To say that it has been a crazy ride would be an understatement. Countless times I have wondered if the ostomy was the right choice. In October of last year, a colonoscopy showed that I have diversion colitis (confirmed by my main GI doctor as well)

The big issue for me is that the GI doctor felt back in January that the best choice moving forward would be to undo my ileostomy and see if it fixes my diversion colitis.

For me, that was a non-starter conversation as my history with pelvic floor issues would mean going back to dealing with all the things that were why doctors felt like an ileostomy was my only choice.

Just to give an idea, I have been dealing with pelvic floor dysfunction that now is labeled as pelvic floor instability. Even with my ileostomy, I suffer from chronic pelvic floor spams in my rectum and sometimes in my bladder. The rectum spams have been debilitating. My colorectal surgeon agreed to give Botox a second chance back in January as no I do not have all the issues I did the first time we tried it. (Tried it before my ostomy and it left my BM’s like that of a baby)

There is a lot of issues with my ostomy. It hurts all the time and is a pain to deal with. Also, I have been dealing with dehydration due to my ostomy for quite some time. Doctors do not have answers for what to do next with that.

It feels like the only option that they are giving me is to ondo my ostomy but that means a lot of time at doctors' offices and back on the medications I was on. It also still means needing Botox which also means back to fecal incontinence as well as everything else.

I did pelvic floor physical therapy for three years with no help. My therapist felt that something bigger was going on.

Now I feel like doctors do not have a clue with to do for/with me. My PCP went so far as to say that it was the most complex case he has had and would only recommend I talk to my GI about what to do next.

GI is very hard to get to see but after reaching out she is working on getting me seen asap. At this point, if GI has no answers I am going to seek a second opinion.

I am lucky to have a girlfriend that also has an ostomy that keeps me grounded and is a person to talk to about all this stuff.

I don’t know what else to do with all of this. My GF feels like if I do not get an appointment soon then she is going to make me see her doctors. I am not against this but starting over sucks.

I truly am feeling like the doctors messed up and now I am stuck dealing with all of this.

Trying to keep my cool with all of this but nothing is being done to fix what is going on.

 

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I agree with your girlfriend. You should’ve seen other doctors a long time ago. You’re lucky you have her in your life now to give you good advice like that.

About six months ago, you were saying your doctors were going to reverse the ileostomy to change it into a colostomy; what happened to that plan?

It sounds like no matter what, the ileostomy is better than your life before. That’s something to try to be grateful for, even if it’s not perfect. Those of us who were on the forum back when you started having problems years ago remember how miserable you were when your problems began then got worse and worse and worse. Your symptoms sounded like true hell and they still do. But you seem more upbeat lately and at least you seem, even if it’s not quite correct, to be doing better now that you’ve worked out the kinks with caring for your ileostomy.

I’m sure it’s no walk in the park for you now; I’ve read about all the types of ostomies in the past and they’re all pretty miserable with high rates of infection and premature death. If you’re stable and have less pain overall than before the ileostomy, maybe you stay like you are with continuing Botox injections.

If you ask, your doctor will prescribe you a Percocet and a Valium/Xanax/Ativan to pick up at the pharmacy in advance, and then to take together at the same time 1-2 hours before your injections procedure, as long as someone is driving you. You will only get one pill of each. I’ve found this really helps me get through the procedure with much less anxiety and pain. My urologist didn’t volunteer to prescribe me those things; it was my idea, and once I asked, they told me that Rx combo for the procedure is actually very common and they have no problem doing it. Also, I’m finding the more often I get the injections, the more I’m getting used to them, and know what to expect. Botox is a miracle. I just got a new round of injections on Wednesday.

I remember you said in the past you don’t take anything for your pain. If you don’t help yourself, nobody’s going to help you either. Several of us have suggested to you in the past that you should go to a pain clinic. That doesn’t mean you need to start taking opioids; there are many medications you can try before you have to go as far as opiates for relief. I remember you’re not supposed to take stuff like Aleve or Advil with your ileostomy or your condition, but there are other solutions. Regular doctors do not prescribe pain relief so you have to go to a special pain clinic. I’ve been in chronic pain since 2009. All I did was take handfuls of Aleve and Tylenol until last year when I finally went to a spine pain specialist. I can’t believe how much pain I was putting up with all those years when I didn’t need to. I still have pain and I still take Tylenol and Aleve, but I take much less so I’m not destroying my kidneys and liver as badly.

You should consider seeing a spine doctor instead of, or in conjunction with, a GI doctor. If you have a pelvic floor problem, it’s because of nerve damage. Perhaps you should also be seeing a spinal neurologist. I don’t remember if you did that already. I remember you said you fell off a bike, which may have caused some of these problems. If that’s true, then you need to be seeing a back doctor. It was the combo of my former back doctor, my neurologist, and my urologist who figured out I had Cauda Equina Syndrome and therefore Neurogenic Bladder. My vertebrae are self-fusing and I tore my discs so many times I no longer have any disc material remaining. So most of the nerves between my spine and bladder got severed during my fall, but they’re at risk of getting worse now because my vertebrae have pinched together and are crimping my spinal cord. So you can see how that’s a problem for a back doctor, a neurologist for the nerves, and a urologist for the bladder. Even if I got back surgery, my nerves wouldn’t grow back. I refuse to get back surgery, so the problem babbles down to be my urologist’s problem. I’m just giving you an example of how a team of adequate physicians can figure things out. That was all figured out for me in about a year but your unsolved mysteries just drag on and on and on because you continue to receive poor medical care from your inadequate medical team. Someone is missing in the solution of the riddle of your pelvic floor and GI problems. I suggest starting with a back doctor or thinking really hard about what other kind of physician might be missing in your life.

One thing is certain: *nobody* should waste time waiting for doctors who don’t have time for them. My former back doctor was like that and I’m so glad I got rid of him and got with my two new current back doctors. In one year, they’ve given me more, and better, advice than the last guy did in seven years. Your G.I. doctor has been messing with you for a long time by not giving you the immediate attention that you deserve for your complex situation, and I think it’s high time you should change physicians.

With regard to having to dreading explaining your complex medical history to a new doctor, I can totally relate. One thing I found helpful is typing up what I’m going to say in advance so I can try to keep it shorter in length and more organized for when I actually do talk to the doctor. You can even practice saying it beforehand so you can get it down to a few paragraphs which are nicely summed up. I was afraid (am always afraid of!) having to do that as well, but I do that now, and it has totally been worth it. When my all-time-favorite-doctor psychiatrist retired nine years ago, I had to cycle through several other psychiatrists before I got to one that I like again. I also practiced telling them in advance about my complex psychological history, so I didn’t waste my entire session telling them about the past. That way, we still had time left to talk about treatment for the present and the future.

Another thing I’ve been doing for about 15 years is putting all of my medications, strengths, quantities, prescribing physician name, start date, and refill dates typed up on an Excel spreadsheet which I maintain every month. I also have my entire previous medical history typed up in a Word document. When I go to a new doctor, I send that paperwork over as far in advance as possible so hopefully they’ve read it before I get there. Sometimes that helps, sometimes it doesn’t because they don’t bother to read it and in truth, they probably just don’t have time to. But at least then I know I’ve done everything *I* can do to make the appointment go more smoothly and quickly. Doctors are taught in school to ask you what’s going on in addition to reading what you write down. Sometimes you have to repeat yourself. But overall I feel those two things (giving them my typed up paperwork in advance and preparing what I’m going to say in advance verbally) really help me feel more confident when I change physicians.

I’m sure your girlfriend would be willing to help you prepare to change doctors in advance.

I’ve said it before, and I’ll say it again: I’m so happy for you that you got a girlfriend. I think it’s very smart to date someone with a condition similar to yours. In fact, I think it’s probably a great idea for any of us who have any kind of medical or mental health condition whatsoever, and are single. Congratulations and yahoo! I’m glad to hear it’s still going strong!!! I find it inspiring to hear that one of us younger and single folks can still have some hope of finding a partner in our judgmental society.

 

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One of this forum’s strengths is the members long term contact and memory. That helps pit things in order and perspective. As a surgeon I really appreciate when someone comes to my office as well prepared as Snow. She is absolutely correct in her assessment that we are very busy and pressured to move on. It takes her kind of organizational skills to make sense of a lot of prior complex medical judgments and procedures. Many of us would look at the chronology of these encounters and the typed documents to put things together. That way we try not to reinvent the wheel. If something worked, try going down that path. If something didn’t work, don’t try it again.
Each specialist is their own silo. They are experts in their specific field. They try to explain whatever they are facing with 1-2 diagnoses in their wheelhouse. Sometimes the best thing is seeing a generalist who can put new eyes on the problem. This is what a second opinion is supposed to do. The best second opinion is someone who does not work with the doctors you have seen before.
You are not committing to anything by seeing someone for a second or third opinion. You are getting a fresh perspective. Maybe not much will be different, but that in itself is worth the effort.
I fully agree with Snow. Get another opinion.

 

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@runningbarend Thank you for your perspective, the compliments, and your advice. It’s wonderful to know we have a surgeon here on the forum.

 

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So much has happened since the last post so I will update.
I am seeking a second opinion from another hospital ((Penn State/Hershey IBD center (The same place my GF goes)) (IBD, Inflammatory bowel disease center)


This is not an end all be all solution as my GF does not drive/no DL license and it is 93 miles one way.

The call with the IBD center went well and I am getting seen in June on the same day that I have to take my GF for a procedure.

My current GI doctor is not available to see me so this prompted moving hospitals. It is also the fact that no other doctor can find solutions to fix what is going on.

Snow. So much of the reason that stuff has not happened is due to other doctors pushing me back to my primary GI doctor before giving me anything. Other doctors within the GI system at Geisinger would not prescribe, recommend, or even try things to help me. They all said that I needed to be seen by my current GI.


My PCP does not have a clue what to do for me and would not consider anything without my GI doctors saying so. This is the big reason that I am not on pain meds. My doctors will not give me anything because they are very worried about absorption.

The nice thing about going to the IBD center is that everything is in one place.

It sucks having to wait. Also if I need a test then I will have to stay at the center as there is no way someone can drive for my. The plan is to address this when I am seen.


All in all, this is just the first step and it is a big what-if. The intake RN was very much WTH when I told her everything so she could see who I should see first.

 

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@ThatFLGuy I’m glad to hear you’ll be getting other advice!

 

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Good plan