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First surgery - shall i do it?

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Posted 11/21/2016 6:32 PM (GMT 0)
Hi, this is my first post here.
A short history:
Diagnosed with crohns in 1997, in Scotland, aged 23, after several years of being poorly without diagnosis. I had been very sick and was 45 kgs. Steroids made me better almost immediately. I took Mesalazine and budesonide. Was in remission but being followed up until 2000.
I moved to Norway.
In 2002 i gave up smoking before trying to get pregnant.
I had 2 pregnancies and births no problem.
I was on Pentasa for about 6 months in 2003 but have not seen a doctor since. I think they forgot about me and as i was in remission and feeling fine ( diarrhoea every day but im used to that) i forgot to check things.
2016, This year i have been tired so had bloods checked and this has started checks at the hospital, colonoscopy and 2 MRI scans. I am being told that i need surgery (i think ileocaecal resection). I have an 11 cm stretch of stricture (stenosis) that continues up to ileocaecal flap. Berfore that i have 3.3 cms dilation. No abscesses or fistulas. Im currently back on budesonide. My tummy is gurgling like mad but otherwise i feel fine, have diarrhoea as usual but no other symptoms. Im so worried about surgery. Im worried that the disease will come back anyway. Im worried that i will be worse off after an operation ( i do not feel ill now). Im worried about complications.
How did you feel before your operation? What made you decide to go for it? Are you better off after the operation? How many operations have you had? Have you suffered any complications? Was it keyhole and do you have scars? How long did you stay in hospital, and how long until you were back at work? Has your life become normal again?
Have any of you chosen not to go for surgery? How have things turned out for you?
Have you experience of taking azathioprine or six-mercaptopurine long term?
Is it important to chew food well.? Since the word surgery has been mentioned to me im worried every time i swallow food 😒
Posted 11/22/2016 6:44 PM (GMT 0)
Hi Money and welcome to the forum,

I'm sorry to hear that you're having to make this decision and I know it's not an easy one. Everyone's experience is different when it comes to the need for surgery. While I don't regret having the hemicolectomy, I did have complications, but the kinds that are a risk with any major surgery.

I was in the hospital for a planned 10 days, and no, it wasn't a "keyhole" or laparacopic surgery. My incision scar runs from 3 inches above the navel down to the pubic bone - it curves around the navel though. Your potential surgery may be different.

Considering that you're facing surgery at the ileocecal area, I'd advise you, if you haven't already, to discuss in detail with your GI and surgeon whether the ileocecal sphincter muscle will be removed and what impact that will have on you if it is. There was a member on here last week discussing hers having been removed, so you may want to search for that in this forum. Knowing what problems you may face post surgery, even if there isn't really a choice about the need to have surgery, is better than not knowing. My surgeons told me I would have life-long diarrhea from the surgery just before I was wheeled into the operating room - not exactly ideal timing. It turned out that it wasn't true in my case anyway.

I had been on 6mp prior to surgery for 3-4 years, as well as Entocort, Asacol, and prednisone. I never went back on 6mp or Asacol.

With the stricturing you have, you probably should avoid high fiber foods since you are at risk of an obstruction. I guess chewing food well is always a good idea.
Posted 11/23/2016 9:22 AM (GMT 0)
Hello JaSanne, and thank you very much for your response.

Although I have had the disease for more than 20 years I haven’t been suffering for the past 20 (have been very lucky so far), so the news of surgery is a bit of a shock to me. I am terrified of surgery, and as I feel so well now, I wonder why I really need it. Though of course I don’t want to get a blockage and end up needing emergency surgery. I will certainly find out more about whether my surgery would involve removal of the ileocecal sphincter muscle and the subsequent problems associated with this. And thanks for letting me know about the post on here on that topic. This forum is packed with information but hard to navigate around. I will have a search.

What is your experience of taking 6mp? Does it have lots of side effects? Is it better than azathioprine? I have only 2 days ago heard about these 2 drugs…
Posted 11/23/2016 3:28 PM (GMT 0)
You're welcome. 6mp never seemed to do much for me besides make me more tired than I already was, but I was also on other meds at the same time and probably all were contributing to fatigue. Azathioprine converts to 6mp in the body, so they're somewhat the same drug, but I've never used it in that form. I currently take sulfasalazine and have had better results with it, but a lot of people can't tolerate sulfa meds. I can't afford biologics with my insurance, so I've never gone in that direction.

Here is the link to the post by Clairegard1979 I had mentioned:

https://www.healingwell.com/community/default.aspx?f=17&m=3742564
Posted 11/23/2016 5:24 PM (GMT 0)
Thank you so much once again!

I feel so much more educated now, still lots more to find out about though.
Posted 11/24/2016 4:29 AM (GMT 0)
Money,

Welcome to the forum. You will find lots of information and support here.

I was diagnosed with severe fistulizing Crohns. I started taking Remicade and methotrexate. They helped me survive for awhile longer. I developed a stricture and had to have the surgery. Prior to surgery I had days where I struggled and days when I felt somewhat better. The surgery was 8 hours. I have a temp colostomy. There were complications...at one point I was breathing 4 times a minute and my liver and kidneys started to shut down. They did not complete the resection. My incision goes from right below my breasts to my pelvis. It curves around my naval. I was in the hospital for 38 days total. After surgery they sent me home within a week. I will need to heal and we will go from there. After surgery it was rough for 4-6 weeks. I had additional complications at home. Now I am somewhat healed. I feel so much better. Things are still rough but they were so bad before....anything is an improvement. I am still taking methotrexate and Remicade. I still have fistulas and leakage and fatigue and pain.

Surgery is sometimes an option and sometimes mandatory. So far my GI and surgeon have been spot on about most things. Best advice...read thru the forum, jot down notes, research your doctors and all info. Remember though...everyone is different and their experience may not be yours. Prepare for the worse and hope for the best.

For the record....the surgery was the only choice for me. So far it is working.

Best of luck to you,
Clo
Posted 11/24/2016 8:30 AM (GMT 0)
Thank you Clo. It sounds like you have been through a lot.

Is Fistulizing crohns a development of stenotic crohns? At the current time I have stenosis, but have been warned that this might develop into fistular.
Was your surgery for the stricture or the fistulas? or both?
Good to know that there are 2 types of suregry: optional and mandatory, so thank you for that. I think I rather hang on until im closer to the mandatory.
Posted 11/24/2016 8:05 PM (GMT 0)
I wouldn't recommend waiting for surgery until it becomes an emergency situation. That's when you are more likely to need open surgery as opposed to laparoscopic, are more likely to need a stoma, and are more likely to experience dangerous complications.

People can live with strictures for years, but others end up with obstructions, which increases the risk of perforations. It's a difficult situation but generally I would just go with your GIs advice.
Posted 11/25/2016 7:01 AM (GMT 0)
Thank you so much Eleanor. Very good to hear this, and it helps. Even though Im very nervous about making this decision.
Posted 11/27/2016 2:26 PM (GMT 0)
Hello. I'm Tom I have recently been diagnosed with crohns and unfortunately had to have emergency surgery just over 5 weeks ago. For me I had no option as my colon had perforated and formed a huge collection of infection, I am very lucky to be alive as leakage into the abdomen can be fatal. However I can personally say I feel a heck of a lot better, I feel like I have been reborn. I was extremely unwell before the operation I was in hospital for around a month while they tried to calm my symptoms with steroids. Like the doctors explained to me, although before surgery and before my diagnosis I felt "well" I did not realise how poorly I actually was because I had gotten used to it. They were right, I feel so much better. I did however have to have an ileostomy which can be reversed in the future. Not really thinking about this right now as I just need to recover from the major surgery.. Even though I'm doing really good and luckily so far had no issues. I am also only 21 so I have not got much experience in advising people but for me surgery was the only option due to the perforation.. And it has made me better. I just hope that i go into a deep remission and continue to feel healthy.
Posted 11/28/2016 1:39 AM (GMT 0)
Money,

Sorry for the delay. Fistulizing Crohns, as it has been explained to me, is in a class by itself. I develop a fistula without an abscess. My fistulas can develop in 24 hours and close back up in 24 to 48 hours. They can be internal, leaking into the abdominal cavity/other organs, or external where they exit to the skin or both. My surgery was for the stricture. We tried to stretch it twice but it caved back in.

When I say surgery is optional I mean that there are people that decide to have surgery to control their symptoms from what I believe is a very early point. However there can be serious complications if you wait too long. This is a personal decision between you, your family and your doctors. I think It is always better to have a game plan for surgery in place just in case. My doctors prepared me for surgery from the first office visit. We held off as long as possible and when they indicated I was quickly approaching a dangerous time with a higher expectation of complications we operated. Please note...I had several complications during surgery and after. We could not address my major fistula issue. We have to wait for my colon to heal and all traces of infection to go away. I am scheduled for a "look see" after the first of the year. If that shows healing there will be a discussion about fistula surgery. If fistula surgery goes well we will discuss a reversal. (That one is up in the air. Why go back to 15-30 bms a day when I only have to empty a bag 4-8?)

I agree with Eleanor on the waiting. Listen to your doctors. Be careful. Err on the side of caution. Remember, whatever you decide must be your decision and you must be comfortable with it. I am not going to say you have to be "all in." I don't think anyone is "all in" to the point where they are satisified and don't wonder about the "whatifs". I think everyone always wonders regardless of what they decide.

What helped me was reading the stoma postings. I don't recall many people "hating" their stoma. Many of them stated they could not believe the difference in their quality of life. Just know that if you do have surgery and you do end up with a stoma...it is not the end of the world. There is a learning curve, and yes there can be complications.

Me? I am comfortable with my decision. Just like before there are good days and bad days.

Best of luck to you.

Clo
Posted 11/29/2016 2:17 AM (GMT 0)
Hi Money,
My son (19) had surgery soon after his initial dx (8 months). Although he had no other symptoms besides bloody diarrhea at the time of his dx his symptoms quickly escalated and a "silent stricture" became obstructed (in the hospital for a week because he could not keep food down and because he tore a hole in his esophagus due to incessant vomiting). He was told he had to have surgery "right away" because of this development. He did not want to (freshman in college) but he made a pact with his surgeon that he would undergo surgery if he could return to school asap. The surgery was laproscopic and 4 inches of his TI (including valve and appendix) was removed. He had been on remicade since dx (along with pentasa, ferrous sulfate, probiotics, azathioprine and Vitamin D). His recovery was amazing (not everyone's experience I know) and he feels amazing (thus far!). He takes methotrexate instead of Azathiorpine and takes folic acid along with it. He is off pentasa and ferrous sulfate and his life is much better. And as his mom I don't currently worry about an obstruction. He recently had a post operative colonoscopy and everything looks good - despite some post operation inflammation that is NOT Crohns. Welcome to the forum and I hope all goes well for you with whatever happens next!
Posted 11/29/2016 10:46 AM (GMT 0)
Hi Tom, thank you for sharing your experience, and I wish you a super speedy recovery.

Best wishes
Money
Posted 11/29/2016 10:48 AM (GMT 0)
Thanks once again Clo. Very wise words that are helping me an enormous amount :)
Posted 11/29/2016 10:52 AM (GMT 0)
thank you Betty Sue. It sounds like your son has been very lucky, and I want to be lucky too. May I ask: why is he on Methotrexate instead of Azathiorpine ? I dont (yet) have a clue about any of these drugs or their side effects.
Posted 11/30/2016 8:33 AM (GMT 0)
Money,
I am butting in...just in case she doesn't come back for awhile. My GI told me that the methotrexate has fewer complications and it keeps me from building antibodies to the remicade.

Bettie Sue, Is that what your GI told you all?

After a year and a half of taking methotrexate it started making me extremely tired and nauseous
My GI took me off, kept me on Remicade and is checking for antibodies prior to each infusion.

I hope I didn't confuse anyone. It's Remicade day and for some reason I am almost always loopy and wide awake afterwards.
Posted 11/30/2016 11:10 PM (GMT 0)
Good Evening,
Sorry for the delay in responding - I have been off line for a while. I hate missing chats in this forum it has been such a lifesaver for me! My son, age 20, was changed to Methotrexate because apparently young males are more at risk (very slight) for various types of leukemias. His GI said they both work about the same but since he is a young male "why take a chance." So far it has worked the same for him, although he is convinced he is losing hair from methotrexate (can be a side effect). I know he takes folic acid to counteract that and he seems to still have a full head of hair so not sure how accurate that is! Best of luck with all of this!
Posted 12/1/2016 6:44 AM (GMT 0)
good to know that Methotrexate has less side effects, at least for males, and that folic acid reduces hair loss. thanks ladies
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