• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Newbie - Supporting Girlfriend

Just to say hi and introduce myself to the forum.
My girlfriend was diagnosed with Crohns back in December after having severe abdominal pains for a long time.

I guess things started to become real when I ended up taking her to A&E and staying by her side all night not knowing what on earth was wrong.

since then she has been finally diagnosed with Crohns, been on steroids for a while and then the doctors said there really wasn't much more they could do treatment wise so suggested she go for an operation.

She is thankfully through the operation now and recovering. I was amazed by how quickly she recovered in just the first few days once the Morphine wore off.

Things are still unknown and I know there could be a way to go, but I'm hopeful and there to support her in whatever way I can.

So yeah, hi im Gareth and that's my story so far.
 
What type of surgery did she undergo? There are options aside from just steroids to try and avoid future surgeries. (Remicade, etc.) I have been dealing with Crohns for 5 years and am trying to steer clear of surgery since my initial diagnosis which involved exploratory surgery after I was taken to the ER.

I hope your girlfriend feels 100% very soon. You're a good man.
 
She had a Right Hemicolectomy..
Having had it for five years have you now got to a stage where it's under control and doesn't affect you as much day to day or do you still have rollercoaster ups and downs?

Thank you for your reply and thank you, I'll tell her. :)
 
Welcome to the forum. It is great that you are seeking info in trying to help your loved one deal with the diagnosis of Crohn's. I'm glad to hear her surgery went well, have the doctors prescribed her a maintenance med to start after surgery? Surgery can get rid of the inflamed tissue or scar tissue whichever it may be but it doesn't prevent the CD from returning and often a maintenance med is needed to maintain remission.

Surgery is usually a last resort when dealing with active disease because of the high incidence of reoccurrence but is sometimes required. Surgery is more often utilized when there are strictures from scar tissue since meds cannot reverse scar tissue.

Elective indications
Fistula with or without abscess
Obstruction
Failed medical therapy
Malignancy
Growth retardation

Emergent/urgent indications
Perforation
Hemorrhage
Toxiccolitis or megacolon
source

In more advanced or complicated cases of Crohn's disease, surgery may be recommended. Emergency surgery is sometimes necessary when complications, such as a perforation of the intestine, obstruction (blockage) of the bowel, or significant bleeding occur with Crohn's disease. Other less urgent indications for surgery may include abscess formation, fistulas (abnormal communications from the intestine), severe anal disease or persistence of the disease despite appropriate drug treatment.

Not all patients with these or other complications require surgery. This decision is best reached through consultation with your gastroenterologist and your colon and rectal surgeon.
source

You may want to look through our Treatment forum(<--click here) and Sugery forum(<--click here)
 
At the moment she hasn't been prescribed any maintenance medication, but she sees the surgeon soon so we'll see what he says..
from the tests they did they determined that there was scaring and a lot of narrowing so the operation they did was to remove the infected part. As far as they know they only found CD in one area. But she is quite worried about the possibilities of it returning in a different part despite having had the surgery.
The doctors did say before the op that if things were successful that she may get a fairly long period of time where she is healthy before seeing any signs of CD returning. But I do understand everyone is different and its not really so easy to predict
 
Some do get a long phase of remission after surgery, maintenance meds only increase the odds of long term remission. Here is some info on surgery and reoccurrence:

Endoscopic recurrence occurs in 70–90% of patients72 within as little as 1 week after surgery and becomes symptomatic in 60% of patients within 10 years.73 One third of patients will require repeat surgical intervention.69 Smokers have a 2.5-fold higher risk of requiring additional surgery74 and having a family history of Crohn's disease increases surgical recurrence 2-fold.75 The gold standard in surveillance is colonoscopy, which is recommended annually or biannually. The standard therapy to extend clinical remission has been treatment with immunomodulators, including 6-mercaptopurine and azathioprine,47 though recent data, including a randomized controlled trial in 24 patients,76 have shown a 90% reduction of endoscopic recurrence at 1 year in patients receiving infliximab therapy.
source

A lot of the outcomes can depend on the location of your CD, the phenotype, the severity etc. It sounds like her docs are on top of things and will probably be discussing maintenance meds with her at the next appointment. I do hope all goes well and hope she is relieved of her anxiety with her improved health. It is a concern but a lot of members here spend a long time in remission after surgery with the help of maintenance meds.

I'm going to tag Jennifer and Dusty, Jennifer experienced long remission after surgery as did both of Dusty's children. They may be able to answer any questions you may have. Good luck
 

Jennifer

Adminstrator
Staff member
Location
SLO
Hi garethhensleyjones and welcome to the forum! :D

I had a resection 14 years ago that removed a portion of my ileum and cecum, about 8 inches in total. After 14 years I'm having my first flare. I stayed on medication after my resection (Asacol and 6MP) yet when symptoms started to return my medications were switched around so quickly (due to side effects that I could not live with, we had to keep switching to something else) the medications never got a chance to control the disease as many can take 3 months or more to work properly. Basically I was unmedicated for many months or improperly medicated which lead up to a full flare. Finding the right medications is difficult though and the same medication or combination of meds may not work forever so its important to keep your GI informed about your symptoms (no matter how minor or even if you don't think its related such as back pain etc) and have regular tests done (scopes, blood work etc).

Some GI doctors will simply go by your symptoms alone and wont prescribe medication or run tests until there's a problem yet this can be dangerous as it allows inflammation to keep occurring over time which builds up more and more scar tissue resulting in a possible need for more surgery or resulting in other complications. Knowing this, whether she chooses to go on maintenance meds (such as immunomodulators or biologics etc) or not its important to have regular testing done to make sure that everything is doing ok on the inside even if you're in remission and symptom free.

Regular scopes should be done every 2-4 years to at least screen for colon cancer while in remission and at least once a year while in a flare. Other tests can be done as well like a small bowel follow through, MRI, CT scan, pill cam etc yet from my own experience these tests are used more often when there are symptoms or if something was found in the scope or blood work and they need to take a look at the small bowel. Blood work can be done every few weeks to up to every 6 months depending on what medications you're taking and for regular maintenance to check for inflammation etc.

I'm glad that she seems to be recovering well after surgery. Keep us posted on how you're both doing. :)
 
Gareth,

As unfortunate as it is I do not have a great handle on my Crohns even after 5 years. I have been on a few different medications and still have flare ups that are very painful. I also had to have my galbladder removed which doesnt help my digestive issues. I have four areas of narrowing in my snall intestines and havent wanted surgery because my doctor told me they could/would come back. The surgery would have only provided me with a year or so of relief (now that sounds delicious)

Keep us updated on her status.
 

Jennifer

Adminstrator
Staff member
Location
SLO
Evanichole do you know where your GI got that information? When I had my resection 14 years ago my GI told me that it was very likely that I could go 10 years or more without a flare. I don't know where he got that information though other than his own patients' outcomes. While it is common for Crohn's to come back at the resection site, when and the severity is different from person to person. You may find this information helpful.

"The results indicate that ileocecal resection of Crohn's disease had a high rate of disease control obtained with low morbidity, and a low frequency of three or more bowel resections (2.2%). Therefore, surgical resection of ileocecal Crohn's disease should not be unduly delayed for fear of risking short bowel syndrome. This approach should minimize overall disease-related patient morbidity by avoiding long periods of chronic illness." http://www.ncbi.nlm.nih.gov/pubmed/9202538
 
Jennifer- I thank you for the information you have provided me. I am not sure if was due to the severity of my personal situation or because of other health issues I have that go along with my Crohns that resulted in me getting that information. What I do know is that he wanted me to wait as long as I could before starting to remove any part of my intestines for fear that I would be having continued issues.
 

Jennifer

Adminstrator
Staff member
Location
SLO
Right its good to wait until its absolutely needed such as recurring partial obstructions that can extremely impact your quality of life etc but I wouldn't wait until its an emergency situation. Trying to get the inflammation under control before surgery is best. Its also a lot easier to reconnect healthy tissue than inflamed tissue. Yet when it comes to scar tissue, no medications will help it. Even then you can live with it for quite some time before surgery is needed. Yet sometimes medications aren't enough and you may still require surgery to avoid a blockage (when I had mine it was a narrowing caused by both scar tissue and inflammation, the medication just couldn't get the inflammation under control). That resection is what kick started my remission. I hope you can find relief and remission soon. :)
 
Clash - thanks for that information. I guess its just easy to get scared looking at how complicated treatment seems and trying to work a way of planning things into the future.
Thanks for introducing me to Jennifer too.

Jennifer - Hi :)
Thanks for sharing a bit of what you've been through, it sounds like a nightmare. :(
She had problems with her doctors too, basically misdiagnosis or putting her on wrong treatment or not really doing anything at all. I've seen her in agony yet not been given any help, I've seen her put on steroids for 2 weeks and still be on them 5/6 weeks later and the changes that caused. But yeah now there is a big difference in how she was before the op and how she is now, shes far from pain free but things are looking promising.
I will certainly keep you updated.

evanichole - Oh no that sounds terrible. And having it in four places too.
When you get your flare ups how long do they often last for?

Thanks for your replies, it means a lot
 

DustyKat

Super Moderator
Hey Gareth,

You have been given loads of great info so there isn't much I can add to it but I will just say one thing...when it comes to the long term maintenance of the Crohn's please seek advice from the gastroenterologist not the surgeon. That is not to say that your surgeon won't steer you in the right direction but unless they specialise in all things IBD then management of chronic disease is not their role. It is not uncommon that a surgeon will say you need no ongoing medication management only to have the gastroenterologist disagree.

Dusty. xxx
 
Hi Dusty, yeah they seem to have covered most of it .
I understand what your saying. I guess from how the last few months have gone the surgeon seems a lot more caring and helpful than the specialists are at times...

Thanks for talking the time to reply
 
Top