Indeterminate IBD and surgery

[lookame]

So...biopsies are back and this is what we know.
1)pathologically I have crohns (blood and biopsies are crohns)
2)I present as classic UC-so I have the inflammation and ulcers like UC
3)I have yet to find a med that heals my intestine enough to stop passing blood, the med that came the closest was Remicade and I'm allergic and the only time I was "well" was while I was pregnant. Even with prednisone I am still passing blood although stools are formed and are limited to about 3xs a day.
4) at this point I'm passing so much blood I require iron infusions every couple of months and I linger around 95lbs

my GI sort of shrugged today and said he's not quiet sure what to do with me aside from surgery...well depending on the MRI results (if there's small bowel involvment) the surgeons may say surgery isn't a good option. I'm on the top line of meds (prednisone, 6mp, lialda and humira) and there's essentially nowhere else to go. I'm not scared to have an ileostomy or even a permanent ileostomy...I'm scared I'll have a protocolectomy and have crohns return in the small bowel or elsewhere and not having a drug to try to get it under control.

those of you who have had your colons removed...did you have clear UC? Have you dealt with possible issues later-as in crohns in your ileum? What were the options from there?

 

[Lady Organic]

I am a indeterminate case just like you. Diagnosed in 2001. UC endoscopic views with superficial lesions and ulcers, a few, but rare, skip lesions observed during the years in my recto-colitis. I had one isolated episode in 2010 of ileum and cacum involvement. My biopsies cant confirm which one it is. If your biopsies show CD, I'd hold on to that and try to find any other option rather than colectomy, because you are at more risk than a ''no doubt UC'' to have further disease activity after your surgery imo. Im not familiar with the last new categories of medications and biologics, but I think there is Cimza and Entyvio. There is also methotrexate, which i have tried, you haven't tried it? The treatment section of the forum have thread concerning all of those. There are also many clinical trial going on, including fecal transplant, in which I have great hope.
https://clinicaltrials.gov/ct2/results?term=IBD&Search=Search
good luck

 

[SupportiveMom]

It makes decisions so much harder when things don't present themselves clearly medically. My kid has similar but opposite issue. Pathology says UC, MRE showed inflammation at 1st diagnosis back in 2012 in terminal illium & esophagus . Since has shown no inflammation and our 2nd opinion doc is banking on her having UC, and the inflammation elsewhere was because of severity not from disease. Her GI now says Crohns Colitis as a diagnosis.

Finally coming to the surgery decision has been hard. Hoping she really is on the UC side of things, surgery would in essence cure her. We have to hope she continues to present the same and hope she doesn't go back to her 1st diagnosis after the surgery.

We have been through EVERY Medication, & will move to Entyvio soon after surgery. It is because there isn't anything new down the line for at least 9 months to a year I feel stronger about the decision. I feel confident surgery is the best way to go now (though I am very scared). Before surgery seek a second opinion. Having a new pair of eyes might help. Having two doctors tell us this is what we should do makes it easier. IMO your current GI might not be giving youall the options. You will be the one living with the consequences of surgery. Make sure you are completely informed.

FYI we also started going to ostomy talks and surgery talks to hear the good & bad from docs and patients. If you have access to that I highly recommend going.

 

[lookame]

Thank you both for replying. I'm not quite sure where to go from here. I'm starting a prednisone taper and at 20 mgs the pain is starting to come back, though I guess I should be great full it's only before I need to go (it's always been like that though). I don't think I've really had my small bowel investigated though aside from what they could see during colonoscopies so I figure the MRI is a good step. The step after though is in the air.

when it comes to meds I am a moderate metabolize of drugs, which may be why I haven't tried several other drugs (such as methotrexate). My GI did say he could attempt another class of biologics but with how I've responded to others he's not sure if it'll help. I could also request the blood test to check humira levels but that is insanely expensive and someone has to come to my house and draw it(still may be better then removing my colon).

The for certain thing is that my colon is a mess. It's nasty in there! I'm tired most of the time and I'm missing out on activities with my kids. I also have accidents on a daily/nightly basis...after 6 yrs you'd think I'd be closer to normal or we would have found something that works.

there's a stoma support group that meets every second tues of the month which I plan to attend next week. Maybe that'll give me a little clearer picture...and maybe I could meet someone who was in a similar situation as me.

 

[SupportiveMom]

Glad to see you will head to a stoma group to get a clearer picture of life with an Ostomy. Many people in these groups are very helpful I have found.

If you haven't had an MRE/MRI I highly recommend it for seeing better the inflammation in the small bowel. Nothing else shows it as clear. Scopes can't go that far.

Fyi all biologics are NOT created equal. I gave up on thinking biologics could ever make a difference until my kid did Simponi. I am even more hopeful for Entyvio, which is the 1st gut specific medicine. Each one is worth trying until you find what is right for YOU. Hang in there... I hope answers will unfold for you.

 

[slyfoxman7]

I'm in this weird state of flux as well. My first diagnosis was Crohn's but I never had any of the for-sure Crohn's symptoms like fistulas or IBD outside of the colon. My current doctor believes it looks like UC to him and he classifies me as such. But I never have a huge amount of bleeding even when I'm in a severe flare which I guess is unusual for UC patients. Biopsies never said one way or the other.

I would put my symptoms now as moderate. On bad days I need to be near a toilet for a few hours of the day then the rest of the day is okay. On better days I can just go a little in the morning. But the urgency is a persistent and debilitating issue. I never have any pain for some reason and have actually put on some weight this year and I don't wake during the night to go.

Honestly the biggest reason I'd opt for surgery at this point is the cancer risk since I've had it many years now but part of me wonders if I could be enjoying a fuller life with surgery anyway. I've been off biologicals since '09 so I might try that again first but I'm not confident in them pushing me into remission.

If I deicide on surgery I then have to decide if I want to take a chance on assuming I have UC and go with a temporary ileostomy that could then lead to a jpouch. The problem with that is I'd be guaranteed another surgery even if the pathology comes back Crohn's to make the ileostomy permanent. Very tough decisions.

 

[SupportiveMom]

I'm a little confused slyfoxman7 . Is your IBD just in your colon & not in your small bowel? If that is the case you may not need an ileostomy. My kid was expected to have a full colectomy (she too presents with almost all UC symptoms, only at 1st diagnosis had issues in her small bowel & esophagus, biopsies have said Crohns) Doc thinks she really has UC. Finally we have narrowed down areas to remove as sigmoid Colon & rectum. Some have had this surgery and no Ostomy at all, temp or perm! You may just need a resection if just your colon is the issue. Worth exploring.

 

[slyfoxman7]

Yes, it's just in my colon and there's always been debate on which disease I really have. Some docs have thought Crohns, some think UC but no one know for sure.

 

[lookame]

I have an MRI set up for friday. After that I'll see the surgeon again and talk about the next steps.

 

[Alley2231]

Yes, it's just in my colon and there's always been debate on which disease I really have. Some docs have thought Crohns, some think UC but no one know for sure.

There are 5 different types of Crohn's Disease. I have Crohn's Colitis....my Crohn's is only in my colon.

 

[SupportiveMom]

Alley 2312993038001_2 there are 5? I only know 3. what are the other 2? I think in time there will be a larger spectrum.

 

[Alley2231]

Alley 2312993038001_2 there are 5? I only know 3. what are the other 2? I think in time there will be a larger spectrum.

Ileocolitis, Ileitis, Gastroduodenal Crohn's disease, Jejunoileitis and Crohn's (granulomatous) colitis.

Check it out on CCFA's website:
http://www.ccfa.org/what-are-crohns-and-colitis/what-is-crohns-disease/types-of-crohns-disease.html

 

[Nyx]

You learn something new every day! I have Crohn's only in my perianal area and I have a permanent colostomy. My rectum and anus were just wrecked from the disease and resection wasn't possible.

 

[lookame]

I had my mri today. I went in thinking everything would be cool since I'm still on prednisone and that has slowed things down...well the barium has sped things up considerably. I ended up pooping my pants in the mri :/ since I wasn't allowed to eat and only allowed to drink that crap my acid reflux was pretty bad. by the end of it I started feeling pretty sick and needed to sit up to burp (part of the acid reflux). It was an aweful expirience. Oh well hopefully this will give a better idea of the disease.

 

[Alley2231]

I had my mri today. I went in thinking everything would be cool since I'm still on prednisone and that has slowed things down...well the barium has sped things up considerably. I ended up pooping my pants in the mri :/ since I wasn't allowed to eat and only allowed to drink that crap my acid reflux was pretty bad. by the end of it I started feeling pretty sick and needed to sit up to burp (part of the acid reflux). It was an aweful expirience. Oh well hopefully this will give a better idea of the disease.

Last time I had an MRI, my stomach didn't like the barium either!!! I had to hop off the table and then run to a bathroom that was outside the Radiology department and then down the hall! It was ridiculous!

 

[lookame]

Lol I asked if I could sit up so I could burp cause I was so nauseated and they were like nope it sucked

 

[lookame]

Alright mri results are back and there was a long list of things it mentioned but the key points (and ones I could use help with) are
-no small bowel involvement/terminal ileum is clear
-mural thickening and mucosal enhancement involving sigmoidoscopy colon
-may have rectum involvment although not we'll distended
-short segments of decending colon which show areas of subtle mural thickening And mucosal enhancement
-stomach and duodenum appear maintained

And then this which I wasn't expecting
-2 small (3-4 mm) nodules noted within the anterolateral right lower lung

So any help in what that all means would be great