Surgery verses wait and see...

Hi All,

I have been posting little bits and pieces of my situation that I am dealing with right now. However, things have gotten extremely intense and I am now on my fourth admission to the hospital in two months.

My first two admissions were due to partial bowel obstructions in my jejunum area of my small intestine. This is where my disease has sort of "moved" to, as it used to be primarily in my ileum. The last one was admitted on Easter (4/1) for extreme bleeding and had to get two units of blood. I was discharged on Wednesday from that stay, after the bleeding stabilized. They also did an endoscopy and colonoscopy, which showed that my disease in both the large intestine, 20 cm into the small from below, and the duodenum of the small were (while filled with healed ulcers and messy looking due to that) all calm.

This last admission was last night, Thursday... just over a day since I got discharged. I fell into an issue with an extreme amount of pain, once again, extreme amount of distension, and nausea (all while eating a low fiber diet). They found out that I had a full on obstruction of the jejunum area from the CT scan that they did, and admitted me for the fourth time... though this time through my surgery team and not my IBD/medicine team.

I have been in talks with the surgeon regarding doing a surgery on my small intestine. He believes there may be some permanent damage in there that is scarred and cannot be healed, thus why I keep ending up in this situation of getting admitted for obstructions. When talking with the IBD team, which also stopped in today, they are much less willing to allow me to get a surgery and wanting to try to control things with the IV steroids I am on, as well as TPN feeding. I feel that is masking the entire issue and just delaying the inevitable, which I am an extreme foodie so going without food is very hard for me. I have had bowel rest before, and just went into a flare immediately following.

What are your thoughts on this, based on your experiences? I think much of the worry is because I had two surgeries thus far, removing about half my small bowel (2007 and 2014). I have had this disease since 1998, so a good 20 years (I am 29 now). I keep going towards the surgery side, because I cannot live and keep ending up in the hospital like I have. I miss being at home, with my wife and 2 year old daughter. I asked the IBD docs if there is any other way to tell if the strictures are from scar tissue or inflammation, and they said not unless there is a surgery done. I feel like getting these three areas out (there are three severe strictures from what they saw) may be the only real reset available right now.

Thank you for any help or info you can give me!

Jake

The surgeons are actually the ones who think it is the best plan of action to do the surgery. The issue is my primary Crohn's doc AND my main surgeon have been on vacation this week... so they come back Monday. The "mid level" IBD fill in docs are the ones so reluctant to me having surgery, and I am sure it has to do with me missing half my small bowel. I am sorry that I didn't distinctly separate that aspect. There is a "surgery team" and an "IBD team" in charge of my care, with the "surgery team" leading my care inpatient.

The plan of attack, as the surgery department is in charge of my care, is that I am going to be getting a PICC line this weekend sometime, and starting TPN feeding. Still on NPO, to give my bowel a rest for a bit. My main IBD doc and surgeon are going to meet Monday to discuss more, and meet with me to discuss surgery. It sounds like the surgery team thinks it needs to be done, so we need to get it done. I am thinking this may end up being semi fast tracked, depending on if they want to do it while I am still inpatient or not.

There seems to be a plan in place, at least... but it is just strange how anti-surgery my IBD docs are. I totally get not taking out what isn't necessary, but there are three areas and it seems to be that there is more to it than just inflammation that is causing this issue.

Jake,

You're going through such a terrible time for sure. I agree with the previous poster that we need to know what meds you've been on or are currently taking?

If you've been on an anti-TNF for some time, and dealing with these strictures, then it would seem that surgery is the answer. Since you seem to be having some severe bouts with this disease, you couldn't possibly be going without some kind of maintenance medication.

Trying to cope with this disease, and having a young family must be so difficult indeed. I really hope you get the right plan of action together very soon. Keep us posted.

It's the risk of short bowel syndrome that would make your IBD docs so reluctant about surgery. On the other hand, you can't keep on going as you are.

I would ask the surgeons about alternatives to resection, e.g. strictureplasty or balloon dilation. You may not be suitable and they can tell you why if so, but I would certainly ask at least.

PS: No I haven't, but look for a user called randynoguts. He's lived with short bowel syndrome for years. There were others, but they don't post anymore.

I have done some research on SBS, and interestingly enough...some of those issues of more consistent labs/monitoring, and added nutrients, aren't foreign to me at the moment because of my disease being as bad as it is. I go in three times a week for fluids and some added potassium, and if I need to add some TPN support... so be it as I now I have a PICC and am receiving it as it is. I have started accepting certain things as "they just are", and accepting that full-fulltime 40 hour a week workweeks may never be an option for me in the future (though I am sure I can get back to 30 eventually here once my health turns a corner).

I do think there will be some good answers as soon as tomorrow rolls around and my main IBD doc and main surgeon get together. I, along with the current team, believe surgery is the answer... just how much and how quickly. I would believe since I am already admitted on the surgery floor, and under the surgery team, that it makes sense to keep me here until they do surgery... if possible this week... as they say I am "on IV steroids and TPN to make sure my disease is as calm as it can be right now prior to surgery". I have some smart people in charge of my case, that is for sure. I think the keyword here is being smart about how much is removed, as I don't believe there is an option to not have anything removed...especially as I keep getting admitted for obstructing on a low fiber, low residue diet.

Jake,

Good luck today.

Clo

Thoughts and prayers coming your way Jake. Hope things work out well. Give us an update as soon as you're able to.

Jake,

I don't have any insights. I just want you to know I am sorry you are going thru this. You are in my thoughts and prayers.

In 2016 I had been on Remicade for awhile and I had been having issues and then short moments of calm in between. In June I had a partial obstruction. They did a scope, everything looked good except for a soft tissue inflammation/stricture area in my sigmoid. We were sure it would go away. They sent me home and I returned with in 3 days in excruciating pain. That happened a few more times in June and July. In August I was so ill they just kept me. In September I ended up with a colostomy. I was just so relieved to have the pain gone. My surgeon said that most of the inflamed area had atrophied and it was predysplasia. They believed that they got all of mine out with surgery. The following year they did not find any cancer during my scope. They will check it again this year...and every year going forward. It is a challenging road to travel on.

I do believe that sometimes, if we are very lucky and listen very closely to our bodies, we get signs or symptoms that are alerting us that there is something we need to have seen.

I am sending positive thoughts your way. Please let us know how it goes.

Hugs
Clo

This is very interesting, I guess I do fall into the increase of incidences in small-bowel cancer, and I wonder if this could be due to the fact that I have had this disease for about 20 years at this point of my life, so my risk factors are higher even so?

Clo... seeing your post does help, even if you say you don't offer anything. Anything of support is huge right now. Knowing that I am surrounded by brothers who are struggling with this constantly gives me some umph in this fight. Thank you for sharing!

I found out that much of what I am doing is probably due to being given the ketamine for the pain. A very small dose, but to be able to walk three decent size walks in day one is amazing to me. To be able to not have to use the pain pump as often due to this.... another win. I am not sure if any of you guys have been given this to help control post-surgical pain, but I recommend this tremendously. Yes, a strong med, but like I said... it is given at such a small dose that I believe this is one of those that is well worth it.

Nothing on the stages of the cancer at this point, but from the sounds of it they don't think it has spread anywhere outside of the tumor. The CT scan shows no abnormal lymph nodes.

I should be finding out more on the cancer side of things after I get discharged for my surgery. I believe they just want to handle one thing at a time, especially seeing that they don't think that the cancer aspect is really glowing or causing any outside issue right now. I think same goes for the SS disability aspect. I have had numerous people bring that subject up to me, though I am still trying to figure out what this cancer diagnosis means for my future, my Crohn's makeup for the future, and other aspects of life. Too many fluid subjects at this time, and not enough info or time to process them yet. I think I just need to concentrate on getting my bowels moving so I can eat! I am starting to get hungry, so I believe that is a good sign.....

Jake,

What a harrowing experience. I'm sure facing the surgery was enough stress, then to get hit with finding a cancerous tumor must have been an incredible shock.

Sounds like there's good news though. You have to stay and dwell in the positive. Think of it this way, if you didn't need and opt for the surgery, they may not have found out about the tumor.

I know you've lost alot of intestine at this point. Fortunately again, the jejunum is 2.5 meters long, so 60cm might be manageable. Let's just continue to hope that this will give you many years of relief from this dreaded disease.

Keep us posted on your recovery. Take it slow and steady. Continued thoughts and prayers.

Again, thank you for the great support through this all. Advice and info is definitely helpful! I am trying to figure out how to get these documents printed so my doc can start filling out imperative info. Maybe the nurses can do this for me. Once I can get AFLAC forms filled out, as well as any info needed for the trip cancellation, I think we will be in good shape for refunds and for assistance in that insurance side of things. Again, thank God for my planning that I think I have secured at least some of our financial issues during this tough time.

The cancer diagnosis still hasn't sunk in fully, I don't think. Maybe it won't fully sink in, but for some reason I look at it as just another layer to my complex health history. The people who are close to it and know about it aren't mega concerned about it, so I have taken the same avenue as them in this... to look at it like a grain of salt. My wife talks about worrying about it spreading, but at the same point... I think it is pretty much stuck to that growth they took out and anything more, they will kill off with a round of chemo. For that, it doesn't seem to phase me as some have gotten it so much worse.

Still waiting for the bowel to fully turn on, though there has been some stomach pains and hungers, so they are thinking of attempting certain clear liquids on me. We will see how that goes. May be safe at this point, but I am still erring on the side of caution.

Jake, I'm sorry about the cancer diagnosis - thank god you had surgery when you did, as they seem to have caught it early and before it could spread.

Ileus is grim as hell (I had it after my second surgery for a week), but hunger is a good sign that the bowels are starting to wake up.