Recently diagnosed and today was told I will need surgery please any advice is appreciated

[sara88]

Hi guys
So I was recently diagnosed in March when I was admitted to the hospital with what they thought was appendicitis and then before the appendicitis surgery I was sent for a colonoscopy and it is crohns. When I was in the hospital they had me on constant iv antibiotics for almost 3 weeks which reduced the inflamation but the wait after the hospital to the colonoscopy was so long by the day of my colonoscopy I was flaring again. I had to wait again to get in with a GI and get my meds (Imuran) I was told I have the obstructing and perforating type of crohns not the diarrhea and ulcerating type (" the worst of the two") as he put it ..it is true I have no diarrhea and my crohns seems to be attacking my appendix over and over. I just got admitted to the hospital again last night on the first day I started my Imuran but the pain was unbearable , a couple of tests later they said its inflammed my appendix again and it's a larger area of inflamation. Now their solution is that they are putting me on antibiotics for another month straight (via a picc line and at home pump) and then they are admitting me for surgery to remove the appendix and that part of my colon that has the crohns (cecum I think) ..my question is shouldn't they be giving the meds a chance before jumping into surgery? I didn't even have a chance to try anything besides the surgery ..I just got diagnosed in March and now we are removing a part of my bowel already..the GI said to me the crohns can return in 6 months!!! That doesn't seem like a worthy trade off ...any thoughts or experiences with anything similar?!!! Sorry for the long post guys im just in pain and frustrated

 

[empressentrails]

It does seem a little sudden. I've been dealing with a flare for over a few years and they haven't mentioned removing any of my intestines. They already removed my appendix/ovary during an emergency c section. My hope is to avoid any more surgery. I'm just worried it's not going to help much and I'll have to go through all of that and still be dealing with the same issues. I don't know. Good luck, I would say get the appendix removed, but I don't know about the intestines so soon, maybe a second opinion? Also, that seems like a lot of antibiotics. Antibiotics don't help me, they make things worse, but I understand they have to do that in the hospital.

 

[sara88]

That's what I'm thinking too ...it's like they are assuming because the first time their antibiotic solution didn't work that the next step is surgery?! Doesn't make sense ..this is two GIs though ..one is mine and the other is the one at the hospital ..I think I may recommend giving the medications a chance though

 

[empressentrails]

Yeah, they've had me on steroids and a low dose takes all my symptoms away. I know it's dangerous, but I'd rather take pills than go through more surgery unless I know 100% it's going to help. One doctor mention that I should pick a surgeon I like just on case, but all the other doctors have said surgery isn't needed and they think they can get me into remission. I have my first colonoscopy in two days, so we will see what they say after that. I'm really hoping to avoid surgery just because it scares me, I'm uncertain about the benefits, and I just don't have time to stop my life for a major surgery. My uncle with crohns has had a lot of intestines removed, I really should talk to him about it/if he recommends it. Do you have anyone in your family with Crohns you can talk to?

 

[sara88]

Unfortunately I do not have any family members with crohns. I have an aunt that has enkylosing spondylitis which is related but no crohns specifically. I feel like they may be jumping the gun on surgery ..don't get me wrong im in so much pain and it would e great to be in remission but what if it doesn't happen or doesn't last too long

 

[Catherine]

Paging DustyKat her daughter was dx on the operating table.

 

[DustyKat]

Thanks Catherine.

Hi Sara88. :ghug:

Whilst surgery is always considered a last resort once you develop complications it changes the equation. When you say the doctor said you have perforating Crohn’s I assume this is because you do have a perforation? Is that why you are receiving the antibiotics you are?

A perforation is considered a complication of Crohn’s and automatically classes you as severe Crohn’s.

The appendix is attached to the caecum…

You have two potential issues you may be facing when it comes to medication.
1. You have only just commenced Imuran and it will take at least three months to become fully therapeutic, for some it can be as long as 6 months. So a long lead in time when you are flaring.
2. The next level of drugs the Biologics. Normally they are contraindicated when you have infection and I am assuming the doctors feel that the inflammatory mass you have also contains infection, this would be natural conclusion for them to come to.

So unfortunately in your case your complications may leave you little choice but to have surgery.

I have two children with Crohn’s. One was diagnosed during emergency surgery, my daughter, and the other required surgery within 4 months of diagnosis due to complications. My daughter has been in remission since her surgery nearly 9 years ago. My son is now flaring unfortunately, but he was in remission for 4 years following his surgery.

I know and understand how hard this is for you to get your head around and for your desire to try medication but please don’t underestimate how serious the complications of this disease can be. For those of you with perforating disease you also lose the luxury of biding your time.

Sorry to be the bearer of bad news hun, I surely do wish it that you weren’t in this situation and that I am wrong and surgery won’t be needed!

Dusty. xxx

 

[sara88]

Thank you so much for the kind words
As far as I know there is no perforation or obstruction just that I have the "obstructing type". I can feel and see a hard mass in my lower right side though and I am assuming it's a stricture or something from the scar tissue. I think you are right that they are assuming there's an infection and that's why they want to remove the appendix because I've had a bit of what they call "missed appendicitis" where my appendix got very inflammed before this (either due to my crohns or not) and was not removed in the required timeline so I think the infection is comming from there. I think surgery may very we'll be my only option. I hope I get years of remission after this that would be great! I woke up today drenched in sweat and shaking as usual. I can't even go through one full night without waking up 4-5 times from the pain and im on hydro morphone ...I think I just need to take the leap of faith at this point and hope it helps and doesn't come back immediately at the resection point (my worst fear). Thank you for taking the time to send me all that information xx

 

[Hayz]

How are you going sara88??? Hope all is well. Your story sounds familiar to what I'm going through at the moment, just diagnosed and all the GI has talked about is surgery.