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GI doc wants me to see a specialist heh

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Posted 3/7/2012 8:15 PM (GMT 0)
You know things are going great when your GI doctor wants you to see an IBD specialist because he's not sure what else to try with you. My doc is awesome, I really do like him. But we're at a point where he wants to verify with an IBD specialist that what he has me doing with treatment is the best and if there's any second opinion on what to change.

So in a month I go to Houston (I live in Austin) to see an IBD specialist there. I'm expecting pretty much zero in terms of anything hopeful as I've gone to enough doctors to not expect much.

For the record, I am currently dealing with really stubborn Proctitis, although I am diagnosed with UC. Doctor said he has a few patients that deal with this stubborness.

We've tried rectal meds, lialda, I was on Steroids back when I had a nasty flare. I'm currently on 150mg of 6MP and have recently done my 6th treatment of Remicade (not sure why I even do that anymore, since I don't think it does much but my doctor wants me to continue with it just in case it's doing 'even a little).

Symptom wise, I deal with 3-4 loose stools a day usually. Feel some slight dull pain and sometimes pain/burning down there. Urgency is pretty much a given 75% of the time after eating meals (within 15-30 minutes). I've kind of adjusted to it and just don't really go to eat out all that much unless I know I'm going to be back at my house or at a place with restrooms. Still deal with stomach cramping and discomfort depending on what I eat.

I've asked my doc about surgery before but he recommended against it saying that his patients that have gone through that deal with a lot more issues than I'm dealing with currently - still dealing with urgency, incontinence and other things, so he recommends against it. He did say that I could bring that up with this IBD specialist to get her opinion as well.

Just kind of confused, frustrated, depressed that it's the same old cycle. Feel like I've been dealing with some symptom or another for 7 years now (doc believes I've never been in full remission since being diagnosed).
Posted 3/7/2012 8:48 PM (GMT 0)
Wow this is exactly what happened to me. My GI dr. pretty much threw his hands up in the air and gave up on me. He sent me to a specialist in NYC. I absolutely hated the guy he sent me to but I ended up trying a drug called cyclosporine under his care. Long story short, that failed too. He just wanted me to be a guinea pig so I ended up finding another GI doctor on my own. She recommended trying Remicade before having surgery so the Remi was my last resort. Low and behold that failed too. I had J pouch surgery a year and a half ago and it was the best thing I could have done. I wish I didn't waste so much precious time and did it a lot sooner. I guess it really boils down to how out of control your symptoms are and what your quality of life is. I had zero quality of life....I couldn't even leave my house toward the end. And I was tired of pumping my body full of drugs that didn't even work. I was never in complete remission either. Surgery has been a huge blessing in disguise. Best wishes to you.
Posted 3/7/2012 8:57 PM (GMT 0)
When was your last c-scope, tiesto? And what were the results?

q
Posted 3/7/2012 9:21 PM (GMT 0)
Similar story here but mine occurred long before the development of Remicade. I had been in a 2.5 year flare and was prednisone dependent. I was on 6MP, the last line of drugs until surgery. My GI advised against surgery. I went for a consultation and had surgery. My colonscopies looked fine with the exception of one spot the size of a quarter in my rectum. I never could get that in remission and I couldn't go on living that way. I had surgery 11 years ago today. Best decision of my life. I'd say go for a 2nd opinion.

Sue
Posted 3/7/2012 11:22 PM (GMT 0)
My last c-scope was sometime last year. I think at the time, I had some mild inflammation, nothing major. Really, most of the inflammation was limited to the rectum. When I was originally diagnosed, I was diagnosed with ulcerative proctitis and only one time during scopes did I have it actually travel up further along the left side.

I am tired of taking drugs and not seeing results. I'm also tired of being...well tired. I'm not neccessarily fatigued, but I just feel a bit lethargic and lazy. Kind of like all I do is go home and go on the sofa. I can chalk this up to being lazy but I do wonder how much of this is a side effect of my body constantly fighting inflammation? Has anyone seen energy boosts significantly after getting the surgery done? The other 2 symptoms I get that seem completely out of no where over the past few years, are dry skin and hyperhidrosis. I never chalked these up to medication since they've both been happening long past coming off different drugs, but wonder if it's related to the disease. Bleh.
Posted 3/7/2012 11:27 PM (GMT 0)
Are you using rectal meds or have you tried them in the past?
Posted 3/7/2012 11:30 PM (GMT 0)
I have tried them in the past. Originally, I used Canasa (up to 2 1000 mg sups per day). That helped somewhat for a while and then stopped. Also used hydrocortisone suppositories while on the 6mp and remicade, and during my last flare while on the pred, was on hydrocortisone enemas (although I only did that for a few days as I had trouble dealing with the enemas).
Posted 3/7/2012 11:44 PM (GMT 0)
     Same situation here tiesto.  My GI doctor didn't like it much when I sought two other opinions without his blessing, but they agreed with his treatment anyway.  He sent me to a Dr. Lichenstein over at the Univ of Pa Hospital in Philly.  Well, Dr. L has written papers on IBD and apparently is "world reknown" in his field.  Dr. L bored me to death.  All he did was talk about himself and the papers he wrote...yada, yada, yada.  This was before I tried Remicade.  He suggested Remicade, Humira, Orensia..etc..  Never said squat about surgery, but, why would he...he is a GI specialist.

     I found my colorectal surgeon online by myself...no recommendation from my GI doctor.  He happens to be head of colorectal surgery at..you guessed it...Univ of Pa Hospital..lol.  How come Dr. L never suggested I see Dr. Fry?  I had my surgery at Pennsylvania Hospital though but the two are affiliated.  I figured since 6MP, Remicade AND Humira all failed, it was time for surgery.  Enough is enough.

Posted 3/7/2012 11:54 PM (GMT 0)
I don't think it's a bad idea to see a specialist but I would give cortifoam a try. I think a lot of us have seen some progress using it. I would say to try Rowasa but it doesn't sound like you tolerate enemas too well and they are a lot of fluid. They make lower dose ones, 2g I think, you may be able to get samples of from your GI if you're interested.

Do you ever take probiotics? Many people see improvement while using them. I don't know if they helped me but I would definitely try them again if I could afford to.
Posted 3/8/2012 12:44 AM (GMT 0)
I've tried tons of probiotics over the years. I'm one of those people that can't tell whether it is or isn't doing anything. Everything from Digestive Advantage to Florastor, VSL #3 (Although not for more than a few days, that one I need to try for a long duration) as well as others. I think sometimes I notice a benefit, but often times I'm not certain as there's so many other variables with the various medications I'm on that I can't tell what does or doesn't work - even marginally :).
Posted 3/9/2012 1:56 AM (GMT 0)
tiesto81,

I live in Austin too. May I ask who your doctor is?
Posted 3/9/2012 3:22 AM (GMT 0)
I see doctor Chris godell with Austin Gastroenterology.
Posted 3/9/2012 4:33 AM (GMT 0)
I am in Houston. Who are you seeing in Houston? My doctor is in the Baylor College of Medicine. I also have proctitis and nothing has worked so far with a diagnosis about 17 months ago.

On Monday I took a fructose/sorbitol hydrogen breath test at the Memorial Hermann Digestive Disease Center in the Med Center. It looks like I have fructose malabsorption (don't have the enzymes to properly digest fructose/fructans in my small intestine which results in large amounts of undigested fructose in the large intestine). I am actually waiting for results, but meanwhile I am following a diet for fructose malabsorption (no foods with a level of fructose higher than glucose level and nothing with wheat which has fructans). It seems to be working. I am down to 3 bm's and minimal urgency. I normally have 6 bm's and very bad urgency/accidents.
Posted 3/9/2012 4:44 AM (GMT 0)
I was seeing Dr. Ellis with Austin Gastroenterology but now I'm seeing Dr. Ridgeway. I like her but I've only seen her 3 times so far. I'm sorry you're having so much trouble and I hope you find something that works. Daily mesalamine enemas and oral budesonide (and Apriso, fish oil, and probiotics) seems to have gotten me out of a 7 month flare (knock on wood). It took a few months to work but I am finally seeing good results.
Posted 3/9/2012 4:21 PM (GMT 0)
Madpotter - I'm going to see Doctor Abraham at Baylor.

Sierra - Dr. Ellis was someone I saw for a few years a while back. I decided to go to Dr. Godell instead as I felt like Dr. Ellis wasn't taking me seriously and was more interested in cracking jokes and entertaining than treating me. Nice guy, but didn't really feel like I was getting anywhere with him.
Posted 3/9/2012 6:56 PM (GMT 0)
     Madpotter, that is very interesting about the test you took for fructose malasorption.  I never heard of such a thing.  At least my former GI doctor never mentioned it.  You put all your trust in your GI doctor hoping he knows all the latest treatments for IBD and then come into the forum and hear how much your GI may NOT know.  Hope you find relief and it sounds like you are improving yeah !

     I suffered with proctitis for twelve years before surgery.

Posted 3/10/2012 4:39 PM (GMT 0)
I went to the NEW GI doc and just got back the results of my colonoscopy (0n 2/20). Had meeting yesterday with doc.

When I suggested that she (doc) tell me the results of my test(s) instead of having an LPN call and tell me of a cyst on my pancreas.

She told me that I should see another GI doc and referred me to someone an hour away. So she is very good (I think) but a prima donna.

It was revealed that my severe left sided colitis is now (chronic active inflammation) is now showing signs of irritation on the right side.

Suggestion to begin Remicade and 6MP.

So here I am feeling okay and under control. Being dumped by this doc and referred out. Looking for a GI doc in central NJ, with exp. with UC.

Any thoughts / suggestions would be appreciated.
Posted 3/10/2012 6:33 PM (GMT 0)
It can take a while (and a long one at that) before some patients see improvements with their meds....often a lot of adjusting is required as well (higher dosing on some meds/lower dosing on other meds) and trying different rectal meds is key as well.

Nothing but cortifoam ever worked when my proctitis acts up.

Re; probiotics, there are many different strains out there that are specific to ones needs, you need to research and be sure you're taking the strains that are beneficial for D since some strains can actually promote D.
Posted 3/29/2012 3:25 PM (GMT 0)
Just a quick update. Still scheduled to see the specialist on the 3rd but saw my GI doc before that.

Got a prescription for proctofoam and have used it but haven't noticed much of a chance. Very minimal improvement. Got some blood work done as well since I'm on 6MP (150mg). My liver Enzymes are elevated very slightly. Doctor wants me to continue taking it until my next appointment with him in a few weeks.

Worse, there was some value that came back from my blood work that says the level of inflammation I'm dealing with still. I think the normal range is 7-50 and I'm at around 150. The nurse said the doctor's not sure why since we're trying everything. Really frustrating. Not sure where things go from here but I guess i'll find out more after visiting the specialist and getting to see my GI doctor again in a few weeks. Don't feel terribly worse than usual and just have my standard symptoms (diarrhea, urgency, discomfort, fatigue) so it's not like I feel much different from any other time.
Posted 3/29/2012 3:46 PM (GMT 0)
Tiesto81, I am just catching up on this thread - I hope the consult in Houston is productive.  I'm in Houston and have been through 3 GIs - haven't heard of Abraham but I hope s/he is good.

I think it's important to realize that symptoms of intolerances (like gluten, fructose, lactose, whatever) overlap those of inflammation, and that people with IBD are more likely to have food intolerances than others.  That's not to say that consuming something you're intolerant of is going to cause inflammation - I am not sure about that.  I think mostly it's the reverse - having inflammation in the gut makes our gastro system unable to properly digest food, and the remnants of the incomplete digestion cause irritation, cramping, diarrhea.  Or maybe it's all about the gut flora and we're just out of balance, again resulting in improper digestion leading to cramping, diarrhea, etc.  My experience with lactose intolerance (my first real symptom of IBD) and gluten intolerance (later development I think) somewhat supports the idea that solving these intolerances (ie, eliminating the food) makes me feel a lot better but is not going to heal inflammation. That's what my meds are for.

So that leads me to my point - your inflammatory markers are really high.  I cannot believe that a small amount of inflammation in your rectum is causing this.  I wonder if anyone has looked higher in your digestive tract for inflammation - have you had a small bowel follow through? An abdominal CT or MRI?  Swallowed a pill cam?

I think you might feel better if you did an elimination diet, and I would encourage you to at least go gluten free for a couple of weeks and see how you feel.  But I think your DR needs to stop thinking only proctitis and start thinking about inflammation elsewhere, especially if you are considering surgery.

Posted 3/29/2012 3:51 PM (GMT 0)
Hi kazbern,

Thanks for the advice! I have had several other tests done. X rays, barium scope, endoscopy, etc. Had my small intestine checked, celiac disease checked, etc. everything always comes back fine. My doctor doesn't think it's just proctitis neccessarily, just that the symptoms I am feeling currently are proctitis related. At the worst though when he did the colonoscopy, he saw that I had left sided inflammation.

I had a food allergy test done a couple years back and everything came back as having an intolerance for me so I just thought it was BS because I knew I could tolerate some of those foods fine. I've tried elimination diets and had mixed results. Sometimes feel great, sometimes don't notice a difference, but hard to track what is or isn't making a difference. I have done gluten free for a few weeks and did feel a lot better although still dealt with some symptoms. It mainly improved my energy and made stools more solid.
Posted 3/29/2012 4:40 PM (GMT 0)
Yes, that was my experience too - going gluten free made my concentration improve, I felt better generally and my stool went from loose and soft to totally solid. I still had problems with upper right quadrant pain and after further testing my GI recommended I use a mile laxative, because my colon has become really slow and I guess they call that constipation. Anyway, if I keep up with the laxative (I'm taking 1/4 dose miralax every other day) I don't have the pain. And the crampy urgency is gone, too, except for those times when I don't do the laxative or other things (like airplane travel) leave me even more constipated than usual.

The thing about a gluten-free diet is that improvements continue even beyond the several weeks point. It took about 6 months for my chronic knee pain to go away (I'd had it for years). And, strangely, my lactose intolerance has now pretty much resolved. I don't understand it. Perhaps I'm just generally in a good remission and that's fine, but it all coincides with going gluten free.
Posted 3/29/2012 5:00 PM (GMT 0)
Wow, I'm in Houston too and scheduled to see Dr. Abraham on May 1st for the first time. I hope she is good. It will be my 4th GI in 6 years. I swear I'm not picky, I just want someone I trust knows what they're doing! Can you update after you talk with her? I'm curious to know what the IBD Center at Baylor is like and if they have any new treatments, etc... Your symptoms sound very similar to mine. Good luck!
Posted 3/29/2012 7:24 PM (GMT 0)
Hello, fellow Houstonians! I don't know if I mentioned this or not, but I see Dr. Sellin in the same Baylor Clinic GI group as Dr. Abraham. My husband sees Dr. Shelby in the same group. I have been going to Dr. Sellin for almost a year. Let's compare notes...

I've had proctitis with severe inflammation for about 18 months now. I am about to have my third colonoscopy in a year! Well, it's actually a flex sig. Dr. Sellin is going to check inflammation because my last full colonoscopy showed possible dysplasia. He has been suggesting an immunosuppresant (Azithroprine), but I am opposed to it. I have maxed out Asacol with no results and taken a few enemas/suppositories without results either.

My newest hope is the discovery of fructose malabsorption which supposedly 40% of the population has (read this online) and I, too, like some of you feel much better on a gluten free diet. However, it's not the gluten that poses a problem it is the fructans that wheat contains which stops the digestion of fructose (onions also have fructans). I am still learning about the new diet and will hear from Dr. Sellin soon.
Posted 4/5/2012 12:20 AM (GMT 0)
I went to see Dr. Abraham yesterday at Baylor. She definitely seemed knowledgeable and we had a good conversation about things, but we're kind of at a wait and see point until I make some changes to my medication.

She wants me to double the dose of my Remicade and reduce the dose of the 6mp since she feels the 6mp was slightly too high for my weight and that the increase in Remicade may help (and has shown to not really have much more harmful side effects with the increased dosage).

Then we'll wait and see what happens. If there's no changes, it sounds like the next step will be Clinical Trials. One being Methotrexate (since it's not approved for UC use) and another clinical trial option being some pill that they've had success with with minimal side effects.

So, all in all, it's about what I expected - not some silver bullet or revelation. Brought up surgery with her but she thought we're not really at that point yet and that there are still options medication wise to try, preferring to use that as a last resort since there's no turning back. So we'll see what these changes do. Had blood drawn after that at the adjacent lab and passed out afterwards (probably from not eating and driving straight to Houston from Austin). My fault really.

Anyways, Baylor seems like like a nice hospital. Definitely wish it was closer to see her as I won't be making the 6 and a half hour commute often.
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