Feeling confused after diagnosis of stricture

[Khaley]

Hi everyone. I was diagnosed with Crohn's in Jan. 2007 and thought I was doing well on azathioprine. I knew I had some flares, but I really thought my disease was fairly mild and under control. I’ve read so many stories of people having debilitating pain and diarrhea, bleeding, weight loss, multiple surgeries, and so on, and I’ve felt so lucky just to have relatively mild discomfort. I’ve had two fissures and a perianal fistula, but my gut pain is not generally debilitating. I see my GI once a year and every time I tell him the same thing: I never feel 100% but I feel better than I did before I was diagnosed. I’m never not aware of my Crohn’s, so I guess that means I’ve never been in remission. I don’t know. But for seven years I thought I was doing well.

Last December my pain got quite a bit worse and wasn’t letting up so I went to see my doctor in January. He put me on a 10 day prednisone taper, which seemed to help for a few weeks. I had a colonoscopy in February and it came back normal and showed no signs of active Crohn’s. The pain came back even worse after the colonoscopy, and my lower abdomen was bloated with trapped gas for weeks. My GI ordered a CT scan and found a 15 cm stricture and is now recommending surgery.

I’m so confused. How did I go from doing well to contemplating surgery? How did I not know this damage was happening in my body? I feel like such a dummy. I mean, I know I never feel well. It’s just that I never really feel that bad. Or maybe I do. I don’t know. There are definitely times I know I’m flaring. I just feel like I don’t have a good frame of reference. Pain and discomfort is my everyday normal so I try not to think too much about it. I function. I go to work every day. I walk my dogs. Many times I don’t do much else. I come home and lay down because I hurt and I’m tired. I’ve spent years trying to figure out what I should eat and not eat, thinking if I could just figure out my triggers that would solve it. But should I have known my chronic discomfort meant my intestines were scarring? When I told my doctor, year after year, for seven years, that I was never unaware of my Crohn’s, should he have known I wasn’t in remission? Should he have ordered tests or changed my meds? I feel like even after seven years I’m still a newbie trying to figure out what my symptoms mean.

Once I realized what was causing my pain I was able to research “strictures” and not just “Crohn’s” and I learned about the low residue diet. I’ve been eating all soft, low fiber foods and drinking juices for the last five days and I’m feeling quite a bit better today. Of course, I know I can’t eat this way forever. It’s not healthy and, besides, I’m craving a great big salad. But I think it’s really premature to be talking surgery. I go for a follow up appointment next Wednesday and will ask to see my scans and have him explain what he sees in them. He also wants to change my meds, probably to Humira. I feel like all of a sudden I realize I’ve not been taking this disease seriously and it’s really kind of scary.

Sorry for the long ramble. I have so little to complain about compared to many of you. I’m just feeling stupid and confused!

 

[theOcean]

Try not to worry about typing too much -- this is a supportive forum, and illness isn't a competition. So what you're going through is just as important.

Crohn's is a very individualized illness, and if you don't know that it's easy to think that you're doing well when you aren't, especially if you aren't getting regular monitoring for inflammation and other symptoms.

It sounds as though you're right, though: you haven't really experienced remission. I know when I was still newer to my Crohn's, I kept ignoring the symptoms I had, thinking I could push through them. Thinking they were normal. So you're not alone in that, and try not to feel like you did this to yourself! It's not as though you meant to do your body harm.

Now that you're more aware of what's going on in your body, you'll be much more proactive about looking out for it. That was my experience after I developed complications, too. Since then, I've become hypervigilant and always want to stay on top of how I'm feeling!

I view the low residue diet as being something temporary, and something I go to when I'm in flare-up mode and my body can't handle much more than that. So for now: it is actually the healthier option for you. Depending on how severe the stricture currently is, it could be treated with medication like you're hoping. So talk to your GI about that first, and that you'd like to consider the surgery as a last resort.

Also, if you think you're going to be put on Humira, we do have a section of our forum dedicated to it. I'm also one of the forum monitors there and am being treated with it, so feel free to ask me questions about it, too.

 

[Orchid]

Hi Khaley, I'm Kat.

I'm sorry, suddenly learning your disease is several times worse then it seems is awful.

If you're not in complete remission as determined by blood/fecal testing damage will slowly build up over time. The insidious thing is it can be completely silent, unless your doctor gets lucky and biosopies the exact right area randomly he can easily miss signs of inflammation in a colonoscopy and you won't feel it because the gastric system lacks pain receptors analogous to those in the rest of your body so you only "feel" it when you're starting to cause complications.There were things you could have done, like fecal calprotein tests and CRP to get a better grip on the quiet inflammation in your body but honestly, what's the point in dwelling? That just means you're living in your the shadow of decisions and playing a dangerous game of "if only, if only!". The only thing to do is move forward, with lessons learned and more humility. If your doctor suggests surgery it's likely there's nothing else to be done. Scar tissue in the colon doesn't heal, so while the passage may widen again the injured area is permanently compromised.

It's good you're discussing things with him and getting a hold on your treatment, but please remember that in Crohn's Disease there is a definite time factor. The longer things aren't dealt with properly the more dangerous the outcome. It's sort of like stitching, except with your life instead of a ratty blanket. Surgery will make you feel vastly better and gives any new medication a better chance of helping you because it starts with a blank slate to work with.

This is so much to take in at once, I can't imagine how having your world changed like that overnight must feel. You're really strong to keep getting up everyday. I'm glad you found us and I hope we can help you.

 

[worriedboy]

Hi Khaley,

I can really understand where you are comming from.

1) Did your doctor manage to tell whether your stricture is mostly inflammation or scar tissue ? Where is your stricture located ? Is it a "classical" TI stricture ?

Note that a scar tissue will not respond to meds, so in that case the valid options are either surgery or a ballon dilation - you might want to check out with your doctor about this option before heading surgery (it's actually a colonoscopy procedure in which a they try to widen the scar tissue).

2) Please also try, as hard a may be these days, to look at it this way: You have been managing through this for 7 years. Maybe not doing great, but holding on and leading a semi-normal life. You are currently hurting, but you are going o treat it by all means and there is no reason why you wouldnt go back to your normal life feeling as good as during those 7 years if not better.

3) That's us, we have to accept it at least to some extent. There are better times, and there are tough times. Your best bet is to do EVERYTHING in your power to gain your health back ASAP.
Once you feel better, things look a bit different.


Hope you figure out the best treatment with your doctor and recover quickly. Fell well !

Yours,

Worriedboy

 

[Khaley]

Hi everyone,

Thank you so much for your responses. I appreciate how much time you each took to reply to me. I'm so glad I found this forum. I think it will help me immensely. Sometimes I just want to talk it out, especially when there's a new development and even my very best friend admits she can't be as sympathetic as she'd like to be because she just doesn't understand I how feel. (Thankfully!)

theOcean, I appreciate knowing that it's normal to misread or fail to understand my symptoms. I've been reading some other people's posts and I'm amazed to see even people with 20+years experience asking the same kind of "what is this" questions I have. Disheartening and reassuring, at the same time. I definitely have a lot of anxiety over going on Humira, or one of the other biologics. Especially since I've been on azathioprine for seven years. I've read about people getting a fatal cancer.

Kat, I get blood work twice a year but it may just be to check my liver values and make sure my dosage is correct. I will be much more proactive in the future and make sure I ask the right questions and ask for tests if I don't think I'm doing as well as I should be. I've never had a fecal test. I'd really like to know what my gut's microbial composition is and how to fix it. I believe for at least the last six months I've had SIBO. Very smelly awful and very caustic. Probably bile malabsorption, too, from what I've been reading. I'm learning!

WorriedBoy, I haven't seen the doc yet since my scan. I just had a short phone conversation with him and he said he was referring me to a surgeon. I see him this coming Wednesday. I will definitely be armed with a list of questions. I believe my stricture is in the TI. That's where my Crohn's is. My guess is that it's part inflammation and part scar tissue. The prednisone helped quite a bit but only for a week or two. I had the CT scan shortly thereafter, so I'm thinking if it was mostly inflammation it would have been pretty much cleared up by the time of the scan. I will ask him all these questions on Wednesday.

Again, thank you all so much. I feel much less alone because of you!

Khaley

 

[theOcean]

For me, biologics were scary because the cancer they made you most prone to was the one my grandfather passed away from. But I'm comforted by the fact that it's more common in males than females, and the fact that I'm constantly getting my blood monitored. And honestly, Humira has done so much for me and put me into such a healthy place that I don't think about it too often anymore.

And I'm glad that joining this forum has made you feel less alone! :hug: I really hope being a part of this community helps you.

 

[Orchid]

The fecal test isn't so much to learn about gut flora but for fecal calprotein, it's one of the most reliable markers for inflammation in the intestinal tract. Disgusting but insightful!

 

[Khaley]

Thanks for the info!

 

[hawkeye]

It sounds like deja vu all over again. I had a few courses of pred that would help but then the symptoms came back. I had a 7 cm stricture in my descending colon and had it out 2 months ago. Looking back, I wonder why I didn't have it done months earlier.

If it is scar tissue medication won't help, the only fix is surgery. I'd recommend considering surgery over if this is the case as you don't want things to get worse - obstruction with an emergency surgery or bowel perforation.