Help me decide about surgery?

[Jeanie]

Hello,

I was diagnosed with crohn's about 8 years ago. I've been on embrel & now humira for the last five years. Since I was diagnosed (after going to the ER with bloating, pain etc. & having MRI) I have had about 5 "attacks" lasting about 24 hours & gradually going away. I have never lost any weight. My symptoms (other than the painful attacks) are diarrhea only.

Finally this year I had an upper GI. The radiologist said my disease is "burnt out" That I have had it for many, many years. It is a long area of the ileum, very thin, but no disease. My gastro doc disagreed & thought disease was still active and thinks I should have resection of ileum. Met with the surgeon, both she & gastro think I should not feel as good as I do, given what my insides look like.

But on humira, generally, tho I have diarrhea, I feel find. I have no diet restrictions except popcorn. I eat smaller portions than I used to but still would like to lose 5 lbs!

Anyone have a simliar experience? I really have not "identified" with having crohn's until now, and the prospect of surgery (which I really don't want to have.

Thanks so much!

Jeanie

 

[SarahBear]

Welcome to the forum, Jeanie!

I'm glad to hear you're feeling so well. Unfortunately, we can't really help you make a decision like that. If you're not comfortable with what your doctors have suggested, I suggest you see another GI for a second opinion.

Please let us know what you choose to do!

 

[Jeanie]

Hi Sarah,

Thanks for your reply. Maybe I used the wrong title for my post. I really want to know if anyone else has had a crohn's experience like mine. (i.e. had the disease a long time, "burnt out", no weight loss, etc.)

How do I ask that?

thanks again, jeanie

 

[Jennifer]

Hi Jeanie and welcome to the forum!

I understand what you mean. Basically what it sounds like is that you have a section that's pretty scarred up and its a narrowed area, basically a long stricture. Whether or not the disease is really active, its unknown to us but with surgery that may or may not be all that relevant. It may be controlled for the most part by the Humira but even small amounts of inflammation over time, chronic inflammation, causes scarring. Scar tissue builds up and makes the intestines more narrow which makes it difficult for food to pass through.

Surgery isn't just for extreme/emergency cases. You don't want it to become an emergency like having an obstruction because those can be life threatening. Hence why the GI and surgeon are suggesting to remove that section even though you feel fine for the most part.

When I had my surgery it wasn't an emergency. I had inflammation and scarring in my ileum and I was in danger of getting an obstruction. Since it seemed like the medication I was taking at the time wasn't controlling the disease well enough my GI decided that surgery was my best option to help kick start remission by removing the diseased section.

If you aren't comfortable with the idea of surgery yet then you could simply tell them no, not now, not yet and continue seeing your current GI who will likely keep bringing up surgery. Or as suggested you can find another GI and get a second opinion. Its possible that the second GI will also suggest surgery which may help you feel more comfortable with the idea. Or they may suggest to continue with what you're doing now but you should watch out for signs of an obstruction or partial obstruction such as extreme pain (which you already have sometimes), fever (this is a sign of infection), small amounts of stool passing (for a partial, more than likely diarrhea but can be small amounts of solid stool), no stool passing (a sign of a full blockage), nausea and/or vomiting.

Keep us posted!

 

[DAVID KINGHAM]

What can we say other than our own experiances. I've had 2 resections and can't have another as not enough bowel to re-join.All the tests i had before both ops were all wrong as i lost alot more than they said they saw.That's where our problems lie.I remember in the early days being told to hold off an operation until the last choice as no matter what the so called experts say.It has a habit of coming back where it was cut from.I seemed to follow a 6 year cycle after surgery where it would come back with a vengeance.So in my view.I only went under the knife when i couldn't hold down even liquid let alone food.We all think we have ages but these ops soon catch up on us.Hope it works out well for you,what ever you decide

 

[Kev]

I don't know if this will help, but my experiences with surgery were extremely positive in the sense that the operations themselves were not the horrible experiences I expected. However, despite being told repeatedly that these would alleviate my disease (one doc even told me after he operated i was "cured") the disease always came back, usually worse and faster than ever. So, if doctors were to tell me that surgery would stop/cure my disease, I wouldn't listen. Fortunately, I found a medication that has stopped Crohns in its tracks. Thing is, it won't make the years of accumulated scar tissue go away. My scar tissue plays havoc with me... and yet it is too extensive to be removed via surgery. I know. I have tried and failed to convince a number of surgeons to take it out. So, surgery does have its uses. If your doctors/surgeons are advising it to remove an area simply because it is in such bad shape it poses a threat, I'd suggest listening to them. If they are tellng you it will make your disease go away, get a second opinion. The thing is... surgery usually isn't so bad... but once a part of you is cut out, there is no way to get it back. That's why I typically advise folks to consider it a last resort. If you have no other or better choice, then fine. But be sure to explore all your options first.

 

[Irene3]

I also had emergency surgery like crabby. I'd had so many obstructions by then, that I couldn't count how many. I was borderline anorexic, when told I needed 50cm removed. That turned into over 70cm, and for me also , the disease quickly returned. Like Kev, I now have stricturing from where the bowel was rejoined, which causes pain even with normal crp, on humira. Continuous D, regardless of meds. So... Like David said, it dosnt cure crohns, and the more I can hold off of having my next recsection, the better. If I beggin having cull on obstructions, where i can't hold anything down, I'm loosing heaps of weight, and severe nausea vomiting and pain daily, to the poi t that I don't want to eat, then I will have the stricture removed, because until then, the way I see it, the more bowel the better. And if I'll only stricture where they rejoin the bowel anyway, then it's the same as now. But if you feel you are having more and more pain, and don't decide on surgery just yet, then popcorn wouldn't be my main concern. Don't have raw fruits and veg unless sliced thinly , and pealed. These can cause tears in strictures areas, resulting I bowel perforation (hell of a lot worse then an obstruction), and can be deadly. So if you decide to wait, I'd stick mainly to low residue. You have to do what you feel is best for you though, just letting you know that surgery , like kev and David said, don't just make crohns go away. It's chronic, and long term, in 10 20 years, the more bowel we have, the better. Best wishes and keep us posted. Xo