Searching for the Right Doctor....

My husband is searching for his fourth doctor. We want to get it right this time. I was wondering, does anybody know a good IBD specialist in Houston, Tx.?

Thanks in advance!

If your husband is on Humira, I assume you've already been through all the 5-ASA's, immunosuppressants, and other drugs that are generally used before going to Humira. If that's the case, I'm not sure what a new GI could do that this one isn't. But do sit down with the current doctor and ask what his plan is if the Humira isn't working. Beyond Humira, as far as I know, the medical treatment choices are investigational drugs or surgery. Seeing a different doctor won't create new treatments, and staying on Prednisone long-term is really a bad option. I have scars all over one leg and one shoulder to prove that.

Sorry I don't have more positive suggestions, UC spouse. Perhaps someone else will know of other alternatives.

Am I to understand your husband has cycled through 4 GIs? Is it because he feels that they aren't proactively managing his disease? That's a lot of doctors to go through but I am sure he must have his reasons. I agree with Judilyn, though, if he has gone through the usual meds, rectal enemas, 5ASAs, immunosuppressants, prednisone, and now Humira he's pretty much at the limit of what's out there to control his disease. Some of us just don't respond to medical treatment. Since he's not happy with doctor #4 it is probably best to move on to #5. But I would recommend he go in there with a list of questions about his current condition and have the doctor provide a plan for getting him off prednisone. The long term side effects of pred should be high on your husband's list of immediate concerns. Pred is not designed for managing UC long term. Long term meaning more than 4 months.

Sue

I know in a lot of cases people are put on humira, remicade, or imuran becuase pred no longer works for them or they are steroid dependent. It sounds like that is your husbands predicament. I would urge him not to go back on to pred if he has a hard time coming off of it. I am just now down to my last two weeks of pred after a year and a half of being on it. Every time I try i flare badly. That's why we have tried imuran and remicade to help me off of it.

Usually before humira one tries imuran or 6mp but then can take 3-6 months to see any results. Humira and remicade usually take less time and it seems docs are suggesting them earlier and earlier. But if your husband has not tried Imuran or 6mp that may be a road to look at or talk to his doc about. Before you opt to change docs again write up a list of questions you want answers to, try to gather as much info as you can. Give your GI a chance to answer your Q's. Ask about imuran, remicade,and why xixafan seemed to work and why he would stop it if it were working. What is his plan if humira doesn't work. How long should it take for humira to work? I hope this helps. Maybe others will have other questions you could pose. Good luck!

Dear UC Spouse: I forgot how old your husband is?
Mine is 63.
I have nothing to say re schedule of meds but it is so important to get a skilled doctor with interest in you isn't it?. Good luck on this front. What i am adding here is diet. In the beginning before we arrived at the University of Chicago Hospital IBD clinic, we were told that my husband could " eat normally, have wine, eat smaller meals , maybe more fish" - in short useless. The problem is there is little research in the role diet can or does play in IBD but we have now been advised to be on a "low residue diet' ( google it) and when hospitalized this is what is prescribed. This is more restrictive than low fiber. ( not easy for me to combine weight watchers for me though!)
All i can say that now it feels like we have has some guidelines as to helping the colon: I am not saying cure or anything like that but help. I only say all this because once we had something to follow it felt we were on a sensible path. Best luck in physician search... Cheers, Chloe

#1Cloe-I agree following some kind of plan at least feels you are doing something proactive to combat this disease.Have you guys seen positive results with the low residue diet? My husband is 32.

kb5-does steroid dependent mean when you are weaned off of predisone, your symptoms come back?Thanks for the good questions. Do you think it would be insulting to ask the GI, what is his success rate with UC patients?

KTM-I know u suggested rectal meds. My husband did try mesalamine enemas, but it didn't seem to help. However, I thought we could ask his doc. about the foam rectal meds. Have you tried those? Also, we were once told that rectal meds. aren't good for pancolitis, b/c it doesn't reach the entire colon. Is this true?

GUISGuY31-Do you recommend getting the surgery when you are young? Sounds like you are pleased with the surgery. I have read even after the surgery one has to go 5-7 times in a day? If so, then what is the point of the surgery? Do you have to go that many times? Sorry, If I am getting too personal. When do you think one should say, it's time to get the surgery? Is it very painful?

Thank you all for your help and support!

UC Spouse,

Sorry for the long post, but it is typical for me.

Nothing is too personal at all to ask me...nothing bothers me. I just want to help other UC suffers learn more quickly about their disease than I had to. In fact, I was going 12+ times a day and at least 3 to 4 times a night, sometimes every hour on bad nights during my initial "flare" that never went away. I was in constant pain (3 on a scale of 1-10 with 10 being the worst) and suffered major sleep deprivation and lost all of my energy and nutrients due to constant diarrhea (over a year) --> became anemic. My blood work just got worse and worse as time went on...and the different meds/prescriptions just kept going up. On top of that, every BM got more and more painful...and always had the feeling of having to go and "random" urgency-->accidents...so that was the worst part of it for me. In fact, sitting on a riding mower to mow my lawn for 42 minutes would wipe me out. I felt like a 100 old person (at age 30!!!)..and I decided I couldn't continue living life that way. I was at a point where I was just existing on a couch watching TV and not living a "normal" life at all. After suffering a few "accidents" I stopped going places and began to close down to friends and family...and everything just got worse. At that point, everyone was now coming to my house to visit me. I felt being dead was better than living like that...and if surgery would help...I was all for it. Last year, I missed 2 weddings, 1 funeral, and a years worth of family gatherings around the holidays.

I would say my mental capabilities were only at 50 - 60% of normal and my energy levels were at 50% of normal during UC because it was so draining. I was not my normal self because of UC and because of the multiple drugs (negative side effects) I was taking too. That was hard to deal with also...knowing your taking these 20+ pills a day and they are killing you...and without any improvement.

In fact my GI in Akron said the same thing about the 5-7 BM/day when I mentioned I wanted surgery to him. He said "Surgery is not an improvement because you'll still have 5-7 BM a day!!!" I'm sure they would change their mind if they themselves suffered from the disease. My thinking was "Take these multiple pills a day for 40-50 years and see what happens to you...while feeling like crap...literally and figuratively!!!" Asacol only has an 8 week study and that is what it takes the FDA to say it is safe to take for the rest of your life....and there aren't any studies for taking other multiple drugs with it. What a joke. I was shocked at this is how the medical world operates. I'm an engineer and if we built buildings like that...nothing would match and I'm sure the buildings would fall apart in a short time, and we would just scab other pieces onto it to hold it up.

These GI "specialists" cannot pick up the "emotional/psychological" side of the disease by reading about UC in a medical book!!! Doctors feel great that they can give you multiple pills to prolong your life with UC but shudder to think that the drugs they are giving you may make you feel like crap and eventually kill you too...just more slowly. I think they need to put themselves in our shoes and live what they preach/prescribe.

Here's what the positives are about the surgery and why people and doctors who don't have the disease cannot understand what we go through.

1. I now can "control" when you need to go to the bathroom. No more urgency. These are the big ones!!! I currently have a temporary ileostomy so I can control when I need to empty the bag....about 5 times a day (usually when I need to pee anyway), not any times during the night...which is a million times better than no control and random 12+ BM times a day/night with UC and drugs!!! The temporary ileostomy is not a problem either, but it seems some people are freaked out about this part and refuse the surgery solely because of this. It really shouldn't be an issue at all. If this becomes permanent - if J-pouch fails (only 3-5% at the Cleveland Clinic) - I can easily live with the ileostomy. It took me a month to accept it and to find the right supplies and having a good system...never had a leak yet. I'm just glad to be rid of the defective colon, UC symptoms and drug side effects. With the J-pouch...you should be able to hold it for up to an hour before needing to go to the restroom.

2. I can sleep throughout the night without needing to wake up. No more sleep deprivation.

3. I can now travel without worrying about where the next bathroom is. I can travel 3 hours in a car easily now...I could barely make the 15 minute drive to work before...without fear/having an accident inside the car!!! I travel all the time due to work...and missed this all last year.

4. I don't think about UC anymore. It was on my mind 24/7 all of last year...it sucked.

5. The daily ritual of taking multiple pills throughout the day is now over. I only take Actonel for osteoporosis (2 pills once a month...on the 10th and 11th). This was my main reason for surgery. I hate taking drugs...I think they cause more issues and are worse than UC itself.

6. You can eat/drink everything again without worry of causing a flare. I love beer and fried things. I never deprived myself of bad/good foods while I had UC...since it all passed through me anyway. Plus, you cut out so much of the food pyramid, it might just look like a single brick out of that pyramid. Then, I'm sure the doctors would be happy to prescribe you some supplements to take to make up on the nutrient deficiencies.

7. Your immune system is no longer suppressed. I work in an office with 40 people in my section. Anyone who came in sick, I got it the next day...and I was very limited on what "cold medicines" I could take...so I just suffered through them, usually they lasted 3 days with the steroids I was on. So I'm now happy to have my immune system back and I take any cold medicines when needed...but now I don't get sick at the drop of a hat anymore.

8. I'm totally "cured" of UC. My colon is gone, so there is no chance of UC coming back. No yo-yo between flare and remission...even though I never experienced a remission. One thing UC websites will not tell you about UC but my GI doctor did. Even if you find the right "magical" food/drug/herbal combination to bring you into remission and you feel "normal," your colon cells on the cellular level are still inflamed...this is why your colon cancer risk goes up 32X a normal person 20 years after the initial UC diagnosis....whether you feel fine or not. So my thinking was...your never cured...just masking the symptoms with the drug route...so why take these drugs that ruin your otherwise healthy organs for a colon that will more than likely be removed 20 - 30 years down the road anyway. I wouldn't like these surgeries at age 50 or 60. I should do it now while I'm young and skip out on the years of drug use and preserve my other healthy organs. People have a hard time with this issue!!!

9. Colon cancer risk is eliminated. This was just a bonus in my mind and for the reason mentioned in #7.

10. I feel the same way as I did before getting UC...I cannot tell/feel that my colon is missing. The only thing that reminds me of it is the 10" scar on my belly and the bag when I lift up my shirt...otherwise I feel normal again. I just get thirsty more often. Sex life returned about a month after surgery...although still a little sore. People worry about this as well!!!

11. If my j-pouch fails or I get chronic pouchitis later on...I'll just go back to a permanent ileostomy. This would be the worst case scenario for the surgery route and my furthest from being normal. With the j-pouch I'm as close to normal as I'll ever be and I know I tried everything available to me. I have no regrets at all...and would still recommend it to anyone who was in a similar situation.

I remember reading about the surgery when I first got diagnosed and said...I hope I never have to do that. 3 months afterwards I was ready for it. That's how bad my UC was.

People must understand that once you have UC...your never going to be "normal" again...despite the warm fuzzy sounding websites you may have visited. You can only try to get as close to "normal" again. Living without a colon is not normal, but having to go to the bathroom 5-7 times a day (controlled) is wonderful compared to living with UC going 12+ times a day uncontrolled. Taking 20+ pills a day + their side effects, constantly worrying/watching what foods/drinks you can have is not "normal" either...especially if you have to take these drugs for the rest of your life 40+ years. Imuran and Remicade are terrible. My aunt is a pharmacist and said Remicade is classified as a chemotherapy drug...not for me. They give you Imuran if you have a kidney transplant so you don't reject it...not for me either...these were my next options with medicines. You'll just have to take drastic measures to restore your life to as close as normal as you can get.

For me, the benefits of surgery outweighed the risks of long term drug use!!!

I'm not going to lie, surgery did hurt. My 10" incision hurt for 2 weeks. The stuff they did on the inside hurt for 8-9 weeks. It was a much milder pain that only hurt when you touched the abdomen. But you know that the pain from UC is gone a week after surgery. I have a post of my surgery experience if you search for it on this website...or search my postings. It's very detailed and long...as often my posts are. I have surgery #2 scheduled in August to create the J-pouch and reverse the ileostomy. I was/will be off work for 8 weeks for both surgeries. I was in the hospital for 4 days. Surgery #1 cost $55,000, my insurance got it down to $18,000, and I only paid $630 out of pocket. Best money I ever spent.

Yes...being younger is in your husband's favor for the surgery. I was the perfect candidate and was negative for all tests for Crohn's (pill camera for upper GI and small intestine, colonoscopy with biopsy, blood tests). I was 31, no prior surgeries...the only negative was my year on prednisone 20-40 mg/day. Prednisone as with all steroids...same for asthma and allergy medicines will turn your internal organ walls into the consistency of butter during constant long term use---after 6 months. I wonder why this isn't listed on the drug fact sheet!!! They will not hold stitches or staples....this is why many people have 2 or 3 stage j-pouch surgery...and not necessarily due to the condition of their health...as they are often told. I had my colon removed during the first surgery and they stopped (they were going to do the j-pouch then but didn't). I stopped all meds that day...was tapered off prednisone a month later. Now my organs are healing and returning to normal so they can hold stitches and staples for my August surgery where the surgeon will make the j-pouch and may reverse the ileostomy.

Hope this helps. I'm open to all topics/issues and nothing bothers or upsets me and I don't hold anything back. I feel that I was lacking some key pieces to the puzzle when doing my surgery research as well as my research for UC in general. There's a lot of "watered down" sites/postings out there. I was on my computer day and night for a year religiously researching this stuff before surgery. Hopefully, I filled in a few missing pieces of the puzzle for you.

UC spouse, here's a site that has excellent information:

http://www.j-pouch.org/Whatis.html

UC Spouse - just because the mesalamine enemas did not work the first time around does not mean they won't work this time.  Sometimes you just have to get the right combo of medications for them to work.  Unless they caused a worsening of symptoms I would revisit them.  Otherwise - there are steroid enemas like Colocort or the steroid foam - like Cortifoam.   The colocort steroid enemas were not good for me - but the foam was great.  I would definitely ask for something.

I disagree that enemas are not good for pancolitis.  The oral meds only reach to a certain point in the colon and the enemas come up from the other end and reach what the oral meds miss.  Between the two you are covering the whole colon.

UC Spouse-- I agree with your wanting hubby to consult a gastro who subspecializes in IBD treatment. Wish I could advise you on the Houston TX area doctors, but I can't. You would like an assessment by someone who knows enough to rule out Crohn's, allergies to 5-ASA meds, even targeting treatment per recent research in the field. This seems totally reasonable to me. There is still the possibility that some avenue of relief was missed during his switch among doctors over the past 11 months.  Have you read over the Salix Pharmaceuticals Newletters (Archive) on their Website? That would be a way of reviewing/comparing main points in diagnosis/treatment of UC advocated by leading American IBD subspecialists with what your husband's recent doctors have recommended for him. No question that it's a grueling process to get the best help with difficult cases of UC, but you're entirely justified in not wanting to "leave any stone unturned" before considering major surgery. I think your husband has one awesome wife!!!!!!! / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

GISGuy31-- you had your colon chopped out after 3 months with UC? / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)

Old Hat-You are so sweet for saying that. THanks! But, I hardly think I am...I have my ups and downs too. OldHat, that's exactly why we wanted another opinion. My husband has never been to an IBD specialist. Perhaps they have more resources. How would one know if they have Chron's. Wuuld not responding to medication be an indication? Thanks for directing me to Salix. That's a very interesting site. Are you referring to Volume 1 of the newsletters? I am not sure if I was in the right place.

suebear-If you don't mind me asking, I noticed in your signature, you wrote you lost all of your B12 stores. What does that mean? You know, I heard that a person got symptom free from getting Vitamin B injections. Have you ever heard of this?

GISGuy31-How does one check for Chron's? My husband has already had a colonoscopy and they only mentioned UC. Does that mean it's a strong case? I guess my husband is not there yet, at the point where he feels he is so miserable that he needs surgery. But, I think he is getting there. Unfortunately, I think I am like your family, very hesitant for him to get it. It just seems so painful and life altering, but then again so is dealing with UC.

I bled straight for over 2 years and became severely fatigued. My GI ordered a CBC to look for anemia and to check for B-12 levels. I was both anemic and short on B-12 so I had to get regular injections. The B-12 did not help the UC but did give me a bit more energy. After surgery my B-12 bounced back on it's own as well as the anemia was immediately resovled.

Sue