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Ulcerative Colitis
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Posted 8/19/2008 2:01 AM (GMT 0)
Don't be mislead, I know no one on this site can actually play doctor; but I really need the opinions of some experienced UC sufferers.  Please take a look at my history and let me know if you think I (or my doctor) has missed anything in my treatment.  I feel so lost, and I have no confidence in my doctor.  Also, feel free to suggest any course of action (I'm open to anything - holistic, Chinese meds, standing on my head, WHATEVER!)  rolleyes

Last November I started having blood in my stools, and my BMs got thinner and thinner over time.  In January, I had a colonoscopy and was diagnosed with ulcerative proctitis (10 cm).  I started wtih Canasa, Digestive Advantage, then Cortifoam, then tried a short course of Prednisone (maybe like 16 days?), but have never done any more steroids since then.  In these early stages, I was eating pretty normal stuff because I didn't know diet was a factor. 

Things did not improve over the next few months, so I was prescribed Colazal while continuing with the Canasa and Digestive Advantage (these two things I took for quite a while with no decent results).  After a while on the Colazal (maybe a few weeks?), I was admitted to the hospital for a couple days due to lots of diarrhea and bleeding.  I went home feeling rested but not much better.  When I got home I started Rowasa enemas morning and night and Cortenemas in the afternoon.  My doc cut out the Colazal because he felt it wasn't doing much since my inflammation is so low in the rectum. 

I've experimented with diet A LOT as you may have noticed from previous posts.  I eliminated sugars, which seemed to really help but then stopped helping (and I was miserable doing that).  Now I just started the Specific Carbohydrate Diet and am having serious doubts about my ability to stick to it. 

Regarding diet, it seems like the more stuff I've cut out of my diet, the worse I've gotten.  I'm starting to wonder if I should just eat the way I was when I was first diagnosed.  Of course, it could be that my inflammation has just gotten worse or moved up my colon.  I don't know what to make of it.

Now I'm at a point where I don't know if I should seek out alternative approaches or go right to Rush University Medical Center.  It has a fabulous reputation for IBD, and I live nearby.  My current doc said that if my current meds don't work, its on to Remicade and Humira.  I'll use them if I absolutely have to, but I'm worried that I've missed something along the way. 

I've never been tested for lactose intolerance or any allergies or anything; and although I've had stool samples taken, I don't even know what they were testing for. 

What's your take on all this?  Have I missed something crucial or is this a pretty typical scenario and my doc isn't as big an idiot as I think?

Please share your thoughts.  Thanks!!!

Posted 8/19/2008 2:36 AM (GMT 0)
It's totally time for a second opinion!

I was on Colazal when I was first diagnosed and had a NASTY allergic reaction. It gave me the worst hives, Diarrhea and bleeding EVER, worse than the original flare.

I have tried sulfasalazine, Lialda and Asacol, Rowasa and canasa. The sulfasalazine and canasa seemed to work the best for me. (Lialda gave me rotten gas, I can't hold the Rowasa in there, the asacol seems to be ok, but nothing great...)

I was originally diagnosed with Pancolitis and that flare ran the entire length of my colon. Right now I am in a small flare that seems localized to the rectum. We (my new GI and I) think it's from antibiotics for a root canal and STRESS (my mom was recently diagnosed with Lung cancer). Now having said that and having now had a flare in my entire colon AND having one in just the rectum, I can honestly say the rectum one is worse (at least for me).

It seems like you really haven't been given a chance to see what medications and diet works best for you. It isn't all or nothing. This whole thing seems to revolve around experimentation and finding what is right for each of us. I'm on GI #2 and I feel a lot more confident with his abilities and his staff. However if for some reason I lose confidence, I won't hesitate to find GI #3. I'm certainly not ready for the heavy hitters in the medication department. I want to see what all the combinations and possibilities are first. If I have to, then I have to. I certainly would be angry if I weren't at least given some other options!!
Posted 8/19/2008 3:07 AM (GMT 0)
If you have no confidence in your doc (like you said) I think you should find another one. I've been to 3 different GIs so far. I still haven't found a "perfect" doctor, but the one I have now is a ton better than my first one. I know proctitis can be stubborn. I had pancolitis when I was diagnosed...I am down to just a little bit of rectum inflammation now but just can't get rid of it (my symptoms are not bad though, so it is okay I guess).
Posted 8/19/2008 6:30 AM (GMT 0)
Personally I think you were on pred for way too short of time (16 days??) what mg were you taking from the start with pred? Typically they start you at 40mg and tapper down each week after being on 40 for the first 2 weeks (then tappering down 5 mg each week after that) at least that's always been my experiance with pred...I think you were on it for too short a time, possibly not on a high enough dose and likely tappered off of it too quickly...it can take up to 6 months for some of those maintenance drugs to kick in which is why the pred wasn't likely affective for helping boost the maintenance drugs for you.

Often IBD can have a mind of it's own, but maybe try another doc.

How long were you on the rectal meds for? Those too can sometimes take time to kick in depending on how severe the rectom inflammation is, and it's important to keep using the cortifoam until you feel better before tappering off of it as well.

:)
Posted 8/19/2008 1:27 PM (GMT 0)
well, ive had proctitis and pancolitis and pancolitis is much much worse. i was sick as a dog for 1 year and 4 months. it was hell. i went down to 95 lbs. i didnt get out of bed for 3 months straight. was also hospitilised. puked everytime i crapped. pure misery. i was white and pasty cuz i couldnt go anywhere.
been on all sorts of meds that did not work at all for me during last flare.
this flare is much easier (still excrutiatingly painful), but not nearly as sick as last time. diet didnt work for me either.
i saw dietician for 4 months at least and also felt like it made me worse.
i just eat what i want now, and if somethign makes me feel extra bad, i might think twice before eating it again. ( i say "might").

so you can get another opinion. ive been through a few GI's myself. find one you like if you can.
but they all can only say so much as there is no absolute known cause for UC or cure/fix for it either.
they all have the same list of drugs to give us..
i feel like the list of drugs is like a general checklist that they go through and keep going and trying them until one finally works.

i think you are just flaring. some times are worse than other times. and sometime the worse times last a really long long time. (thats a lot of "times")... but honestly, in my opinion, this disease is just so unpredictable and unique to the individual, that yes, it does seem like a pretty typical scenario that you are going through.
Posted 8/19/2008 1:55 PM (GMT 0)
pb4 - The pred schedule I was on was 40 mg for 4 days, 30 for 4 days, 20 for 4 days, then 10 for 4 days. Sounds a little unorthodox, given what I've read on this site. In fairness to my doc, he knew I hated the idea of steroids (and I still do). I've been on the rectal meds for a couple months, I think. Cortifoam only gave slight relief, not enough to continue.

Steph - I can't believe the suffering you've been though. That just sounds absolutely awful. What you say about the docs makes sense - they all have the same list of drugs. I just wish my doc had more of an interest in me. I feel like my symptoms are downplayed, you know? As for diet, I'm willing to give the SCD a fair shake simply because it seems to be the last thing to try (diet-wise) before getting into heavier drugs. But if it doesn't work and I do need heavier drugs, you can bet I'm going to eat what I like (within reason, that is). ;-) Thanks for the reply - it was comforting and gave me some perspective. :-)
Posted 8/19/2008 2:06 PM (GMT 0)
Well, if you're not satisfied w/ your GI, then you should definitely see a new one, especially if the hospital has a good rep for IBD.

Why is your GI jumping from 5ASA to biologics (Remi, Humira)? Usually immunosuppressants (6MP/Imuran) comes before Remicade. However, immunosuppressants usually take a few months to kick in and at that time you'd have to take steriods. I think my GI told me I would start at 40 mg and then taper down 5 mg every two weeks (however, I personally refused to take steriods and 6MP caused side effects).  

I also used Digestive Advantage and it did nothing for me. Maybe you want to try a different probiotic?

Those stool samples they tested was probably for c. diff.

Did you keep a food journal when you were first diagnosed? It's a good way to see if any foods make your symptoms worse. I personally wasn't affected by food too much so I haven't done any diets.

Posted 8/19/2008 2:13 PM (GMT 0)
ComedyDork (BTW, it makes me laugh just typing your name) -
I don't know why he's skipping over immunosuppressants... if I have to take steroids with them, then maybe he knows I wouldn't want to do that. As for probiotics, I'm eating homemade yogurt (from SCD), so I think that's probably going to help a lot. I seem to tolerate it well. I just called my insurance company this morning about going to Rush University, and of course they said its out of network. ERGH!!!

I've used a food journal for months, and I do see food connections. Part of the reason I started the SCD is because I could see that some of the foods they eliminate would be good for me to avoid. We'll see... ;-)
Posted 8/19/2008 2:28 PM (GMT 0)
turn  I'm glad my name makes you laugh! Comedy (almost any type) makes me laugh & gets me through the tough days, and I'm an overall dork, so I just put the two together.

Well, you don't have to take steroids w/ the immunosuppressants; they give it to you so your symptoms will be controlled faster since immunosuppressants take a couple months to kick in. I didn't take steroids b/c I was afraid of side effects and since I was just sitting at home the entire summer (had to quit my job and volunteer stuff), I didn't need to feel better right away.

I'm sorry Rush is out-of-network. Are there any other GIs that are in-network? It never hurts to get another opinion. In the past two months, I've talked to 2 GIs and 3 surgeons!

Posted 8/19/2008 5:18 PM (GMT 0)
You likely needed to give both the pred and the rectal meds more time, taking them to be effective is key...you may not have noticed the rectal meds kicking in fast enough for you but that doesn't mean they weren't working and wouldn't have taken care of your proctitis.

:)
Posted 8/19/2008 10:34 PM (GMT 0)
I would agree with pb4 that you may want to give your meds more time. I was in a very similar situation as you early this summer. I started the prednisone at 40mgs for seven days and was originally going to taper 10mgs every week. However, my GI and I realized it was not working as fast as we had hoped, so I stayed at 30mgs for three weeks and have been at 20mgs for four. After that and a month of hydrocortizone enemas, I finally feel like there is hope of getting back to normal. Three to four BMs before 8:00 AM and then nothing else all day. And today almost no bleeding. I just started taking probiotics and cut out all caffeine, but time has been the key.
Posted 8/19/2008 11:28 PM (GMT 0)
Kiss,
The only thing I can really speak to regarding your initial post is that I strongly believe you should find a new doctor. You can definitely find someone you'll be more confident with. It will be worth it.
Posted 8/20/2008 2:16 AM (GMT 0)
There are definitely other GI's I could see, and I plan to. I've actually seen three docs in the same practice but came back to this one, because one was a total jerk (worst bedside manner EVER) and the other one was very young and seemed very inexperienced.

pb4 - I'm still on the rectal meds and haven't seen much change. I have an appt with my doc on Sept. 3rd, so we'll see what he wants to do then. Once I have his opinion at that time, then I'll get a second one. ;-)
Posted 8/20/2008 5:42 AM (GMT 0)
How long have were you using the cortifoam for before you switched?

:)
Posted 8/20/2008 12:42 PM (GMT 0)

pb4 said...
How long have were you using the cortifoam for before you switched?

:)

Cortifoam was only for a few weeks (3-4?).  Does that sound too short?
Posted 8/20/2008 2:49 PM (GMT 0)
no, it doesn't if you had NO improvement. You're still on Rowasa 2x daily?

q
Posted 8/20/2008 5:25 PM (GMT 0)
Actually everyone is different so although generally 3-4 might give most noticable improvements doesn't mean it's that way for all, maybe you needed 5-6 to have noticable changes, you could always try them again...I know cortifoam is not a guarantee for all, but it's gotten my proctitis out of some pretty horrific flares, of course that was using the cortifoam for a yr before tappering off...it's your choice of course, regardless I hope you find help soon.

:)
Posted 8/20/2008 6:07 PM (GMT 0)
quincy - Still on Rowasa, but have a call into the doc today about lack of improvement. Asked if I should take the Colazal or Pred that I have at home. We'll see what he says....

pb4 - I did show slight improvement on cortifoam but it was short-lived. I think at the time if I had stuck to it, it might have helped more. But now I have a feeling that my inflammation has spread. My symptoms are MUCH worse than there were when I was diagnosed. I'd like to have another colonoscopy to see if that's true. If its still just the last 10 cm, then I'd be totally willing to give cortifoam another go.

BTW - I'm a total wimp and couldn't last more than 8 days on the SCD. I was miserable and weak and STARVING, so today I caved. I had toast and two cookies, and it was as if I had won the lottery. :-)
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