What led up to your first resection?

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Khaley

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Hi everyone. My GI doc seems to think it's only a matter of time before I need a resection and why wait when I'm having pain and other symptoms of a partial blockage. He referred me to a surgeon but the surgeon wants to wait and see how I do on Remicade first, which I'm starting in five days. I'm in total agreement with the surgeon. I feel like it's got to be life or death before I'm willing to go under the knife. Yet, I see people refer to their "elective" resections.

I feel like I'm in denial. I'm pretty much sticking to a low residue diet but every time I have a few good days in a row I think I'm better and I do something stupid. Today's stupid was Pad Thai and salad rolls.

So, I'm wondering: what led to your first resection? Was it emergency surgery, an absolutely got to have it sort of situation or did you elect to have surgery to gain a better quality of life? If you elected to have surgery, how did you decide it was time?

Thank you!
 
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While surgery is always a last resort what you don't want is to wait for it to be an emergency because then you're putting your life even more at risk with a full obstruction with perforation and sepsis to follow.

If you have active inflammation it's always best to try and treat it with medication but if you're not responding to meds in a timely manner or at all then removing the inflamed section can kick start remission for you.

My GI tried me on every medication possible at the time and at the highest doses possible for my body weight and waited almost a year before we decided that surgery was the best option. I kept having recurring partial obstructions and would need to go to the ER often and even admitted on occasion. That was over a decade ago though. Now days they have a better idea of how long it should take for a medication to start doing it's job so you shouldn't have to wait as long as I did before having surgery.

Basically you try medication first but if they aren't working for you then you need to talk about surgery before it becomes an emergency.

You also have to take into account that you have scar tissue from the inflammation so even once the inflammation is treated you will be left with scar tissue and it will shrink over time. This means that you may need some sort of surgery or balloon dilation later in life if needed. Same with surgery. Once you have a resection, that section they put back together is now a scar and will shrink over time meaning that you may need surgery again later in life or balloon dilation.

Never take surgery lightly but don't take obstructions lightly either. If you have recurring partial obstructions then it's time to start considering surgery if your medication can't stop the inflammation (unless you're battling scar tissue at this point, no meds can help that).
 
I was told that I should have surgery around 2003 I think. I had scarring due to inflammation and strictures because of that. I was feeling OK but had some trouble with blockages, got on low residue diet and just coped with it (or learned how to deal with it). In 2005 my doc told me strictures were getting worse and I was having trouble eating enough, had some more pain as well. I decided to have elected surgery instead of emergency one. So I guess I just decided its better to have it know since I am going to need it anyway and I had already postponed it for two years. Its not an easy decision but afterwards I realized it was the right one.

I did not want to have surgery right away when that was suggested to me. I had scarring already so no help from medicine either. You are taking a risk by postponing surgery but you know your own body best. If you have learned how to deal with the problems you could see how it goes but have a discussion with your GI and surgeon first! And if you want just to stick with it you really need to take care of what you eat. Things can go wrong pretty fast!
 
Thank you both for your replies. Of course you are right. I don't want to end up with a medical emergency. I've just been having a hard time wrapping my head around all of this. And then I'm also anxious and scared about starting Remicade.

I'm hoping the Remicade works and allows me to eat normally again. I like to eat veggies! I'm pretty sure I have a lot of scar tissue, though. The stricture is pretty long (not a candidate for balloon dilation) and, although I was just diagnosed with it, I think I've had it several years. I just bought an Omega juicer and should be getting it today. I'm super excited about that. Hopefully it will satisfy my longings and keep me out of trouble. :)

Thanks again!
 
Hi Khaley,
I just had my second resection. The first one was only a year and a half ago. You definately do not want it to be an emergency resection. Both of mine were small bowel resections due to strictures that were causing partial blockages. It's never an easy decision. I have also started Imuran and Remicade - so far so good. I've just started eating veggies again - so there is hope!! We bought a Vitamix blender this past winter, and that really changed the way I could consume food while dealing with partial blockages. Having the surgeries, although scary, were the best decisions that I've made. Hang in there.
 
Wow, momofthree, it's terrible that you've had to have two surgeries in such a short time. I'm glad to hear you're feeling well now, though. How did you know it was time? Were you making trips to emergency?

I've been on Imuran for seven years. Thought it was working okay. Actually, I think it has been working for some things. I haven't had any abscesses or fistulas since starting it. But I've amassed a nice stricture. I'm really nervous about the Remicade but if it keeps me out of surgery it's worth a try.
 
It was a stricture. From late 2009 until 2012 I was on prednisone a few times to treat flares, CT scans 2010 and 2013 showed a stricture in the descending colon. Based on this my GI said that surgery wasn't a question of if, it was a question of when. I had my GI refer me to a surgeon in late November of last year and I had my resection in February. Glad I did it. If it is a stricture due to scar tissue, medication won't help.
 
@Khaley

Some people will reach a point where either complications or failure of other forms of treatment mean that surgery is inevitable. It is under these circumstances that elective surgery is done and it is the best option.

Both of my children have had surgery. Neither had a choice in the matter but one was an emergency and one done as elective. In the true meaning of the word it was elective but I prefer the term ‘controlled’ or 'planned’as to me it is a better descriptor of a procedure in which a choice not to proceed would very likely result in death.

My children had the same surgery, right hemicolectomy, but that is really where the comparison ends. The whole experience from pre op through to full recovery was vastly different between the two and I imagine you can guess who had the better outcomes both psychologically and physically…the planned one.

I so hope the Remicade works for you. Good luck!

Dusty. xxx
 
Hi Khaley. My situation was as Dusty describes. I had an intestinal fistula. Eventually one GI referred me to hospital on the mainland for a resection, but when I got there the surgeon thought I should try Infiximab ( Remicade ) first. I was a lot better after three infusions, but the fistula opened again when I was taken off it, so they recommended the surgery and I accepted. They actually found severe inflammation that they hadn't been expecting when they operated, so it was probably the best solution all round. And I have been so well since. Wishing you all the best.
 
Khaley said:
Wow, momofthree, it's terrible that you've had to have two surgeries in such a short time. I'm glad to hear you're feeling well now, though. How did you know it was time? Were you making trips to emergency?

I've been on Imuran for seven years. Thought it was working okay. Actually, I think it has been working for some things. I haven't had any abscesses or fistulas since starting it. But I've amassed a nice stricture. I'm really nervous about the Remicade but if it keeps me out of surgery it's worth a try.
Click to expand...

Hi Khaley,
Ya it kinda stunk that the surgeries were so close, but at least I knew what to expect! I knew that I had another stricture because I could feel food just "sitting", and had a hard time sleeping, I started loosing tons of weight because it hurt to eat. My belly started to swell, and it would be 7-10 days between bm's. We tried prednisone to see if it was inflamation, and ordered a CT. The CT revealed 3 narrowings in the small intestine. Luckily I was able to keep myself out of emerg, but was sticking to a liquid diet. The surgeon was going to try strictureplasty, but unfortunately once she got in there, 40cm had to come out.
I was really nervous about starting Remicade, but the other option was not so great - more surgery and possible short bowel...not ready to go there! I haven't had any major side effects with Remicade, and the procedure itself is quite relaxing. The nurses are amazing, and there's no pain, you just sit back and relax - they even give you juice and cookies! Hang in there.
 
Thank you all for sharing your stories with me. It is immensely helpful. I was so overwhelmed at first but I feel like I have a plan now: be diligent with my low residue diet and give the Remicade a chance to work. If the a Remicade doesn't get the inflammation under control, find another drug. If the Remicade seems to be working but I still can't eat normally because of scar tissue, decide on a time to have surgery.

I agree, DustyKat, "planned" surgery is a much better term for it than "elective" surgery. Two kids with Crohn's??? :(

Hawkeye, I'm glad surgery worked out well for you. I see you're even off meds. Wow. Grumbleton, as well. I'm glad you're feeling well. You guys give me hope!

Momofthree, I've seen other people say the same thing about the infusions. Some say they actually enjoy them. Crazy! I have a friend going with me the first time. I'm sure it will be fine.

Thanks again, everyone. I'm feeling better about everything! :)
 
Yeah, both kids have it which sucks :( but on the positive they have both been in remission since their surgeries, so 8 years and 3 years respectively. For that I am most grateful! :ybiggrin:

My wish for you is that regardless of the treatment I hope the outcome is the best it can possibly be! Good luck!

Dusty. xxx
 
Hi Khaley

My introduction to CD was an emergency surgery for a complete blockage.I didn't have time to discuss anything before hand.I had a small section,only 8-9 inches or so,removed.

I had no idea what I was going through at the time.The intense pain,sickness,weight loss,etc..In hindsight it was coming on for a long time.

The end of this month,Sunday the 25th,will be six months since my resection.I take 500mg of Pentasa twice a day and medicinal cannabis.

I do a lot of juicing.There is a juicing thread in the nutrition section.If fiber is hard to handle,juicing is a good way to give your body what it needs.I understand the reluctance to eat.You do have give your body what it needs to fight,though.

I control what I can...diet,exercise,attitude,etc..The support and information from everyone on the forum has helped me immeasurably!Everyone has been awesome.

Feel free to ask me anything

Dave
 
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I was diagnosed with CD in 2002 (misdiagnosed in 2000) after several surgeries for abscess, fissures, and fistula. Reading this post has been somewhat helpful as I'm at another decision point around surgery. I had a colonoscopy attempt on Friday. This was the fourth attempt at a successful colonoscopy within the last five years. The doctor hasn't been able to screen me for colon cancer because the scope won't advance beyond my sigmoid colon due to a stricture. Last year after my GI attempted the colonoscopy she referred me to a surgeon who advised me to hold out. My GI has now made the same referral. She is really concerned about not being able to properly screen me. I fear having the surgery will worsen my quality of life rather than improve it if I'm left with a ostomy. I struggle with low residue diet from time to time and always have pain when I deviate from the diet. Its hard enjoying time with my friends who dont have the restrictions that i have. I want to feel better and want to believe that surgery will help. For those of you who have had the surgery... Did you worry about the risk of an ostomy?
 
My first resection was from a capsule endoscopy that got lodged in my small bowel. I walked around with said capsule inside me for 6 months; I never seem to go to follow up appointments.

Looking back, the capsule at one point, had lodged in a stricture and caused what I now think was a full obstruction. I just curled up in the fetal position with intense pain and underwent extreme nausea and vomited prior to this.

Oddly enough, the full obstruction sorted itself out and became a partial.
Apparently, the capsule dislodged and bounced around between two strictures; this is what allowed me to walk around for months with very few symptoms. I continued going to college through all of this.

Finally, my GI freaked; and did an xray, which found the capsule, and he referred me for surgery. They removed around 8 inches of my ileum and did six strictureplastys; (I have the stricture plagued form of Crohn's isolated to my small intestine) I never have diarrhea, just endlessly constipated.
However, for the year following the resection (2013), I felt amazing and had normal bowel habits. Now, I think I'm stricturing up again. Cimzia helps with the arthritis, but it doesn’t seem to be as effective for my Crohn's as Humira was, but I couldn't tolerate Humira's side effects.
 
In hindsight I think I would agree that being proactive when surgery becomes inevitable would be a good choice. The docs didn't find my Crohn's until after I had already had two emergency bowel resections. The first involved what they called a cecal bascule, (though now I suspect it was a stricture that caused my bowel to wrap over on itself. The second was only 10 months after the first involving a perforation at the old repair and emergency surgery because of peritonitis. After plenty of tests following surgery, (this because months later I still felt horrible,) the GI had me do a capsule endoscopy; after colonoscopy and upper GI revealed very little. Sure enough they found significant profound ulcerations and inflammation in my mid- small bowel. After all was said and done I am now missing about 18 inches of each small bowel and colon. Recovery was long and very difficult because of the level of infection. So.....if I had known that inevitably I'd be needing surgery I'd definitely (after getting a couple opinions) not wait for it to become an emergency situation.
 
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Dave, what a way to learn to have Crohn's! Are you doing well now? I just bought a nice Omega juicer. I love it so much. It feels great to be putting nutritious food in my body once again. I look forward to the day I can eat normally again. I went out to dinner with my mom tonight and she had a nice, big Caesar salad. I was so envious! Can you eat veggies now?

Captivating Crohnie, I think you've nailed it for me. I'm afraid that surgery will lessen my quality of life. It seems like once people have surgery, it's only a matter of time before they need more surgery. I worry about trading strictures for adhesions. One of my best friends has UC and had to have her colon removed. She got sepsis and needed another emergency surgery. She's had two j-pouch surgeries. Now she gets obstructed from adhesions all the time. She spends so much time in the hospital. I know she's a completely different story from me but I've seen a lot of stuff about adhesions. It scares me.

Nick8, you have quite the story! I've seen several people mention getting a capsule stuck. It seems like a questionable procedure for Crohn's patients or if Crohn's is suspected. I'm sorry to hear you're not feeling as well lately.

Saratay05, you've had a rough time. Are you doing well now? I really appreciate your input. That's exactly the kind of stuff I need to know.

Thanks everyone. I appreciate that you all have taken the time to share your experiences with me.
 
Khaley,
It was really rough for a while. I've got a flare up now after feeling pretty good for around 6 months. Have had the genetic testing done so I can maybe ad imuran to my meds. So we'll see how that goes. I also have appt with an IBD specialist (rather than my regular GI) but first available date isn't until July. Trying to be patient.
Good luck with your decisions. Hopefully all goes well for you.
 
Hi Kaley, you are right in thinking that once you have surgery, often you end up having another or more. I have had seven, mostly as a result of strictures. I have three small ones, and my last op was only three years ago. I was meant to be starting Remicade but my CT scan saw no active inflammation. So I am going down the surgical route once more. From my research on Remicade, it can actually make strictures worse. Once you have narrowing, it needs surgical intervention. What I did discover on my research is that treatment with Remicade and Aziathropine after surgery, takes chance of staying in remission to 75%. So pretty good odds. I spent three years of hell before my last surgery with obstructions, on more than one occasion I wished that I would die the pain was so bad. What I am trying to say is that surgery is better than repeated obstructions. After my first op, I had over ten years of good health. It is better to plan surgery as you can make sure that the best surgeon will do the op, and also you don't want emergency surgery. I am planning my next one so I have control.
 
Seven surgeries is crazy. I'm so sorry, Daisy! And now another one? What's your plan to get in remission and maintain it so you won't need another one after this? I'm currently on azathioprine and will stay on that with the Remicade. My surgeon says the latest studies don't show any relationship between Remicade and strictures. I hope he's right. Good luck to you!
 
Wow is right,Daisy.I sure don't want another resection..or surgery of any kind.Now I know what to look for I hope a blockage won't get to the point it did before without detection.

I clearly remember the intense pain...I never thought a person could hurt so much.I do wonder how long I will stay in remission.I'd be quite happy with a ten year stretch!

I did not get to pick my surgeon because of the emergency procedure,but was fortunate to have a competent Dr. assigned to me.I have talked with him quite a bit since my surgery.

It is unsettling knowing another surgery may be in my future.I'll try and think like you guys and utilize knowledge and planning.The fact a blockage could occur next week or never again drives me absolutely crazy at times.I try to be vigilant and not paranoid.It's a fine line some days.
 
Khaley said:
Seven surgeries is crazy. I'm so sorry, Daisy! And now another one? What's your plan to get in remission and maintain it so you won't need another one after this? I'm currently on azathioprine and will stay on that with the Remicade. My surgeon says the latest studies don't show any relationship between Remicade and strictures. I hope he's right. Good luck to you!
Click to expand...

The Remicade can make strictures worse is my understanding and it can't cure them. Strictures often need surgical intervention
 
Thanks, Daisy. I know that's what I've read, but my GI and my surgeon both say it's okay. It's so confusing at times.

Dave, I completely get what you say about being vigilant but not paranoid. I really hate that I'm apparently not a good judge of what's going on in there. One night I'll be laying in bed wondering if I should go to the ER and the next day I'm fine. Before lunch this morning I was questioning my decision to start Remicade tomorrow because I felt so (relatively) well and now this afternoon I'm laying on the couch at work waiting for pain meds to kick in. It's all so crazy. I don't even know how I'm doing from one minute to the next. I guess that's the stricture?
 
I have horrid pain with the strictures, sometimes I can cope and other times I have to resort to strong narcotic pain meds which I hate taking. I don't seem to have active inflammation at the moment but I feel like crap. I hope my scope tomorrow will give me a better idea of why the pain is so bad. My GI wants me on Remicade but I am not convinced. Strictures frighten me, I have been so ill in the past with them. Let us know how you get on with the Remicade.
 
hey khaley - i started Remicade at a time when i 'needed surgery' and had had 3 resections already. I wasnt that worried about starting it, because it was hope. It gave me hope that I could get better. It took 6 months until i could tangibly notice an improvement, i wasnt sleeping as much, i wasnt in paid as much and i was putting weight back on, or at least holding my weight.
seriously with a stricture - i had a few obstructions and just be careful eating fibre…both times i had a stricture i had what they called a phytobezoa (not sure of spelling) but it was basically a ball of fibre that couldnt get through, in both cases bananas and a hand full of macadamia nuts did the trick, eating them tegether was a big no no! If you do get an obstruction, the pain comes in waves and gets more and more painful and your tummy will blow out like someone is pumping up a balloon in your abdomen. If this happens, drink water and get to a hospital.
I believe if you can cope for a bit longer, you might see improvements on Remicade!
If you can avoid surgery, you must.
There are loads of drugs coming out that might help.

good luck.
 
Love the username, happy poo poo. :) I'm so glad Remicade is working for you. I'm optimistic. Nervous but optimistic. It's heartening to hear you can eat fiber again. I'm sooooo looking forward to a big salad - some day!!! Thanks for your reply.
 
I don't think mine was elective. At the beginning of 2010, I had a test and the mixture was taking an extra long time to go through my system. They stuck me in the hospital. A few weeks later, I started throwing up during a procedure. They stuck me back in the hospital. My intestines had gotten wrapped around each other. They decided to schedule me for a resection on April 13 and to put me on TPN. One night, I threw up six times. It turned out I developed pancreaitis from something that was in the TPN. They decided to move the surgery up a week. I don't think I had a choice about the surgery. I wish you the best.

2
 
My colon was perforated during a colonoscopy. They labeled the surgery they did to fix it as a resection, but nothing was taken out
 
My gosh, you all have such interesting stories. Intestines wrapped around each other.... Perforation during a colonoscopy.... It's kind of sounding like most resections were more emergency (or at least urgent) than elective. Ronroush7 and afidz, I hope you are both doing well now.

Ron, a good friend of mine had her colon removed several years ago and she developed pancreatitis afterward. I wonder if hers was caused by the same thing. How did they know it was the TPN? Is that fairly common?
 
They did blood work in the emergency room and determined from there that it was the TPN or rather something in the formula that gave me the pancreatitis. Had a little trouble with stomach recently. They just started me on Stelara and hopfully this will calm things.
 
I had chronic constipation and went to my GP to get things looked at. She could not find anything wrong so she scheduled a cat scan or MRI, I forget what it was. They found a mass that they thought might be carcinoid cancer tumor. They referred me to Mayo Clinic and they saw a large mass of "junk" all over the place. They were unsure what it was but it had to come out. So, two weeks later, I was under and they removed a mass of fistulas hooked all over. Some to the large intestine, some to my hip, bladder and near my kidneys. I even had to have a temporary stoma due to all the damage I had. All worked out well though and I am free of disease and doing well two years later.
 
Wow, superzeeman, and you had no idea that was going on other than constipation? That's how you learned you had Crohn's? Its amazing you were even functioning by that point. I'm glad you're doing well now. Thanks for sharing your story.
 
I woke up one morning feeling pain in my lower right side of my belly. By noon it had gotten worse, I went to the hospital and they said "hmmmm appendicitis" The next day I went in for an appendectomy and woke up three days later from a coma. I bled almost to death on the table, lost 45cm of bowel and took me more than a year to recover. I still have narrowing and active spots on my bowel, as long as they don't give me flares no one dares to operate on me again if I don't flare (badly) fearing I might not make it this time. I am on Humira over the last 4 years, I am not Crohns free but its not active.
 
It amazes me how many people learned they had Crohn's by medical emergency. Thanks for sharing, Scifimom. I'm glad Humira is working for you and your disease is under control.
 
I also learned that I had Crohn's through an emergency surgery! I went in for an appendectomy but ended up having open surgery and losing 14cm of bowel. The notes said it was severe inflammation with a fissuring abscess. I'm not sure if medication would have helped or not and I have no idea how abscesses are usually treated. The recovery from surgery was hard but I have been in remission for 18 months so far since then.

I am always scared about it flaring up again because I have no idea what to expect as my flare up was a quick experience but I remember the pain being like what I would imagine childbirth to be like. The fact that it was severe scares me too. I hope to never go through surgery like that again although I imagine a planned keyhole operation would be better.
 
xxjemmamxx said:
Thank you all. I know how lucky I am to have achieved that for 18 months so far xx
Click to expand...

Yesterday was six months for me.I feel very fortunate to be in remission.It is surgical remission...but that is o.k. with me.It is interesting to see how many crohnies had emergency surgery for their first resection.

I'm glad you started this thread Khaley

Dave
 
Congratulations on 6 months. Even though I know it's better to avoid surgery, surgical remission feels a little like a fresh start. I know it can flare up at any time still but it's good to know that all of the inflamed bad parts have been completely taken out.
 
A new start is how I look at it too.I admit knowing I am susceptible to future stricture problems/blockages freaked me out at first.Lurking in my future waiting for me to let my gaurd down.I think I have moved from paranoid to being cautious and vigilant.

That's what I tell myself anyways.:)
 

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