Crohn's Pain & Symptoms while on medication?

Holy cow! You've been throught the wringer and it's just not stopping. I would call your doc ASAP if you are urinating blood. No matter what it is, it can't be good and you need medical attention. I feel really bad for you. I"m sorr you've had to make so many trips to the E.R. Hopefully that will stop once they get this problem (UTI?) under control. Sounds like maybe the meds they're giving you for the crohn's aren't enough. Have you contacted your GI?

As for your appetite... I don't know what to tell you. I have a HORRIBLE appetite because of this stupid disease. Just do your best to nourish yourself as best as you can and be patient. It'll probably come back when you're feeling better. Hang in there. Keep us posted on what your doc says!

Stef

Hi and Welcome! Definitely call your Dr again, they need to know about the blood in your urine! I seem to also get several UTI's a year which I attribute to all the diarrhea I have. You may need a stronger antibiotic.

You have been through hell and I am so sorry you are going through this! The symptoms are horrible and like Stef17 states, the meds you are on may not be working for you. Most of us have been through several different ones because they either don't work, or stop working after a while. Has your Doctor tried you on Prednisone? It usually works quickly to get symptoms under control, although the side effects can be pretty bad in some people. With all your infections, they may be holding off until they get those under control.

When you say you are having a difficult time dealing with a chronic illness, are you referring to mentally or physically? Physically, it can be tough. The symptoms can be horrible until you find the right meds, and for some people, even on the right meds, they will always experience symptoms to some degree. If it's mental, the best thing you can do is educate yourself as much as possible about this disease. Yes, it's chronic, but it's not a death sentence, and it can be managed. This forum is a wonderful place to find out information and ask questions. I have, several times, taken information I have found here to my doctor to discuss, try, or just update him. He is human, he's not God. He doesn't know it all. (although some may come across like that!) If you find you need extra help, maybe look into therapy. Just try not to let it get you down. We are here for you for questions, advice, or just to listen to the vent.

Good luck to you!

... and if you're still having so many symptoms, it's likely you need to be on stronger medications than you are. Please don't worry: this happens to many of us, and is why we are on immunosuppressants and drugs like Remicade.

I agree: please tell your doctor about the blood in the urine.

If you don't have much personal experience (yourself or with a close family member) of chronic illness/disease it can be a shock to the system to be diagnosed with one. It will take some adjustment on your part but there is no reason why you shouldn't get feeling better in the next several months.

Yes, I said months. I don't want you to feel discouraged - but I don't want to be a Pollyanna and pretend it's all going to go away tomorrow and stay gone forever.

Typically the first 2 years post-Crohn's diagnosis is a period of trial and error treatment to see exactly which treatment(s) will work for you at this time. Your disease presentation may change over that time causing it to take longer to get a handle on things.

There isn't any better, more efficient or rapid process. Unfortunately.

You have had a complication early on that it would have been nice to avoid - c. diff infection. This is going to set your progress back because it is inflaming your gut on top of the Crohn's. So the meds you are on will take longer to work or may not work well enough and medication changes may need to be made.

If I follow your post correctly you had c. diff, were treated with a short course of vancomycin and you got better.

Several weeks later you have renewed diarrhea and the ER docs think the c.diff is back and put you on vanco again for 7 days?

Was the c. diff originally diagnosed by cultures? Was your stool tested for c. diff after you finished the first course of abx (antibiotics)?

Did the ER docs send a stool sample for testing before they started you on abx yesterday?

If you have recurrent c. diff then it needs to be treated more aggressively - mostly that means longer or pulsed rounds of abx with follow up cultures to make sure it's gone.

Here's my spiel on c. diff. I expect no one has bothered to give you most of this information.

Most cases of c. diff occur because of a combination of exposure *and* an existing gut disturbance that makes you vulnerable to the infection. In most cases, the gut disturbance is caused by the use of abx to treat an infection elsewhere in your body. But having Crohn's and other disorders that affect the gut can also make you vulnerable to c. diff.

If you are having renewed or continuing symptoms following treatment then up to 3 stool cultures should be done (all from different samples) before concluding you do or do not have c. diff. Obviously if the first sample is positive you don't need more tests. If it is negative they should repeat the test up to a total of 3 times.

What you can do to help yourself is to add probiotics to your diet right away. Check with your GI to see if he/she prefers a particular one or is opposed to your taking them. Whichever one you start, make sure you are getting s. boulardii in the mix of strains. S. boulardii has been shown to be effective in preventing recurrent c. diff.

C. diff is a big deal because it can be very difficult to treat and can be life-threatening. Many cases now require multiple rounds of abx. There are only 2 abx approved to treat c. diff (Flagyl and Vanco) with a couple others that can be added to these for resistant infections.

There is now a highly resistant strain of epidemic c. diff out there that can kill a well person in 3-4 days. It doesn't appear frequently and it is unlikely you will get it but you should know the signs and symptoms. 20+ bouts of diarrhea in a short time, you feel really sick, high fever and your output may be up to 3 times the amount you are taking in. If this happens you should call your GI and go to ER.

Taking steps to prevent recurrent c. diff infection and avoid spreading the infection are essential.

C. diff is transmitted by human-human contact of fecal material. Ways to prevent infection include frequent rigorous hand-washing *with soap* - alcohol gel doesn't get rid of it, thorough cleaning of all raw fruit and vegies and raw egg shells with a soap solution, avoidance of citrus rinds as these cannot be thoroughly cleansed of c. diff if contaminated, avoidance of contact with anyone with c. diff, thorough cleansing of your home and work area following a c. diff infection.

So no more slices of lemon in your water. Commercially prepared lettuce in salad mixes and in restaurants is a notorious source of c. diff because the lettuce is hard to get really clean. My sister has had multiple c. diff infections and she won't eat any salad greens at restaurants any more. She asks them not to dress her plate with the lettuce leaf, etc.

Clean hard surfaces in your home and at work with a mild bleach solution. C. diff can often survive other types of cleaning products. Give special attention to bathrooms, kitchen/food areas, door knobs, phones. Wash all bedding, towels and clothing with hot water if possible. That should probably include anyone in the household that you have had close contact with while infected or who have shared a bathroom with you. You may want to clean your refrigerator. If you use cutting boards that cannot be sanitized then you may want to think about switching to a different kind.

If you are hospitalized with a c. diff infection you may be isolated from other patients and isolation procedures put in place. If you find you are sharing a room with someone with c. diff and you don't have it, make them move you ASAP if possible. If not, then be eagle-eyed about staff and visitor hygiene.

It can be hard to get the care you need in ER when you have a chronic disease. If possible you should be in contact with your GI before going to ER as there may be things he/she can do for you like ordering a stool test or labs that will save you a trip to ER (and exposure to hospital infections).

Until you have the c. diff infection resolved, your Crohn's may be difficult get under control. You will need to talk this over with your GI doc and he/she may change your IBD meds to something stronger or that works differently than Pentasa and Entocort.

Best wishes - sorry for the lengthy reply.

Patricia

Probiotics are necessary to us Crohnies. We have an abundance of bad bacteria in our systems, that probiotics are necessary to even things out. I take Primadolphis Fortify by Natures Way myself. Just make sure it has Lactobacillus and at least 10 billion in it. Just take the probiotics at least 2 hours after your last abx of the day. Good luck and gentle hugs!

Nancy -

Docs just don't always have the time to share detailed info or don't realize it's importance to the patient who has to live with these issues day to day. And they see a lot of patients, many of whom may not have difficulty recovering, so their default setting (so to speak) is to assume this will be true for you too.

Generally speaking a recurrent c. diff infection is not going to take 3 weeks to manifest. Typically you sick pretty fast with c. diff - a matter of hours to 3 days in my sister's experience. She has short bowel syndrome. The time often quoted on medical advice websites is 10 days or less. But it is possible.

Your description reminded me of my son's stool when he had extensive colonic and rectal inflammation from CD. His stools looked like ribbon or a pencil. I don't think that c. diff infections manifest this way but I'm not sure. They certainly involve abdominal pain, frequent watery diarrhea w/urgency, usually a fever and feeling sick. You can see why it may be hard to distinguish c. diff from active CD.

Some doctors give Imodium when a patient has c. diff to help slow the diarrhea and prevent dehydration. Some doctors use Imodium for the same reason with CD. Maybe you should ask your doctor to explain why he wants you to use it and any cautions about it's use.

As for probiotics - some doctors just don't see their benefit, others have problems with reliability (i.e. you don't necessarily know the quality of what you're using), some situations contraindicate their use due to immune suppression of the patient, sometimes they just want to wait until you have finished abx. Again, you will need to ask your doc for his reasons in your specific case.

If he continues to resist, you may want to do some research and provide him with a copy of a peer reviewed article that shows the benefits of probiotics in the prevention of recurrent c. dff and/or treatment of CD.

Unfortunately if you have to do that you are probably dealing with a doctor who sees very few CD patients or is not keeping up with the treatment changes that have occurred with great rapidity over the past 10 years.

You mentioned a 2nd opinion doc - you must have had a reason for seeking a 2nd opinion. My 2 cents is that, if you feel your current doc is not going to work out for whatever reason, you find an IBD clinic or program at a major teaching hospital/university and go there for treatment until you can get into remission. They see lots of patients (unlike many general GI docs) and often know what they're seeing right away - since they've seen it several times already that day.

We drive 100 miles each way to see my son's Pediatric IBD specialist and it is well worth the trip. This is despite our living in a large metropolitan area with many GI's but only 1 pediatric IBD doc - who failed to properly treat my son over a period of nearly a year. The point is that you may have to try several docs before you find someone that you trust and feel is on top of things/experienced.

Next step meds? I am not a doctor and don't want to give you medical advice. So please keep that in mind OK? And I'm not going to go into an extensive explanation of the pros and cons of each med. If you spend some time reading other posts on HW you will get a lot of that info.

There are nutritional treatment approaches that most mainstream IBD docs do not endorse here in the US. This is partly because they are taught very little about nutrition and so are ignorant, and partly because patient compliance is a big problem when you tell them to drastically change their diet or only drink liquid formula and not eat food for several weeks.

AS for drugs, I can tell you in general the current approaches to treating CD. There is some controversy right now about the best approach. There are 2 camps - the Step up camp that takes a more conservative approach; and the Top down camp that takes, at least initially, a more aggressive approach with newly diagnosed patients. And there are docs who tailor their approach to the patient, sometimes using step up and other times using top down. Confused yet?

Step up means you start with 5-ASA meds like Pentasa. This is like applying aspirin to the inside of your intestines. It is a direct (not systemic) treatment. Entocort is a powerful form of corticosteroid with mostly localized/topical effects. It can give some systemic effects (up to 20% is absorbed) but usually they aren't as severe as with prednisone.

Prednisone is step up from Entocort. Both are meant to rapidly suppress inflammation. They are usually given along with another medicine that they hope will keep you in remission once the steroid is stopped. In your case that is the Pentasa. It may take several weeks to figure out if this is going to work. In your case that is problematical since you had/have a c. diff infection complicating the picture.

If that doesn't work the usual next step is an immune modulator. There are 2 in use - various versions of mercaptopurine that all end up being the same therapeutic drug after your body has metabolized it; and methotrexate. Both work (they think) by gradually inducing early cell death in certain B cells. So it can take up to 4 months before you know if they are working since it takes awhile for the B cells to die off. B cells are part of the delayed-response part of your immune system.

The next step is a biologic. Biologics work (they think) by killing T-cells, again part of the delayed-response immune system. Biologics kill these cells much faster and some people see improvement in as little as a couple days. Others take up to 3 or more months to see a definite response. 3 biologics are most commonly used: Remicade (the first), Humira and Cimzia.

That is pretty much the top of the ladder. There are other treatments used very infrequently but I won't mention them at this point. Prednisone or/entocort may be used at any stage to suppress inflammation in hopes of getting the patient back into remission.

Top down approach is to start with biologics, sometimes combined with an immune modulator, to quickly suppress inflammation and get mucosal healing. Prednisone and Entocort do not induce mucosal healing, they just suppress the inflammation.

Large clinical trials of biologics have shown the most benefit/response in patients diagnosed within 2 years of beginning this treatment. But biologics are reserved for patients with mod-severe or treatment resistant IBD.

If the patient fails one biologic, they may still respond to one of the others. Whether to try that is made on a case-by-case basis. Some patients respond better to immune modulators and others to biologics. Some need both.

Got to run. I hope you find this info helpful.

One caveat about reading posts on HW and everything you find on-line.

ON-line support forums often draw people whose disease is not in good control and are very sick. They may be frustrated with their docs or have failed many treatments. They are not representative of the IBD population as a whole. The people who are in remission are getting on with their lives. They are not usually posting about how great they feel on places like HW.

Reading everything on-line carries 2 risks. The first is that you will scare yourself silly reading about complications that are very rare and almost certainly are not going to happen to you. You want to avoid stress - not go looking for it. When it/if it happens you will have time to ask for advice/info and go research the problem.

Second is the well-known problem of trust. Can you trust the info you are reading is accurate, up-to-date and applies to you? Figuring this out can be a lot harder than it looks. If you have the background and time to do this then go for it. Otherwise it's a good idea to ask your doctor for info and/or books and websites that he/she trusts to provide good info. And you can ask for info here - keeping in mind we are laypeople and one person's experience may or may not apply to you.

Best wishes,

Patricia

Nancy:

My husband has suffered from C-diff quite a few times. In fact, when he was first diagnosed with Crohn's, it happened in conjunction with a c-diff infection, so needless to say, it was absolutely horrid to deal with. My husband's GI never wanted him on immodium - because he said the last thing you want to do with C-diff is keep it in your colon releasing more toxins. Also, there's a cholesterol med called Questran that has shown efficacy in binding up c-diff toxins so it doesn't do as much damage to the colon. Questran also works to bind bile salts that can irritate the colon, and is used in CD of the terminal ileum as well to thicken the stool. Perhaps you can talk to your doctor about using Questran.

There's a yeast called Saccharomyces boulardii that has shown efficacy in keeping c-diff numbers down. You can find it a product called Florastor. My husband takes 4 of those daily.

I'm surprised they didn't take a stool sample at the ER - the c-diff toxin test is a quick one, and they should have been able to give you the answer in less than an hour. When on vancomycin it is highly unlikely to have a positive c-diff test (My husband did have a positive c-diff test while on vancomycin, but he was also on 120 mgs of solumedrol at the same time - so he didn't really have an immune system then). If you get a negative c-diff test on vancomycin, it doesn't really mean you don't have c-diff. Also, my husband gets relief from using the vancomycin after a c-diff infection typically in about 3 days. He still has very loose stool, but the cramping diminishes.

Also, post-infectious IBS is one of the possible complications after a c-diff infection. It can be hard to tell a c-diff infection apart from post infectious IBS. The rule of thumb that I've been advised to use, is that if the symptoms continue past 3 days, you need to get tested.

I hope some of this information helps, and I sure hope you'll start feeling better soon. Hugs!

PV