Need help!!!

Hi

I just joined the forum to get more information and advice on this disease. I am a bit worried and so I may end up making this post lengthy. By the way, I am not the sufferer, but my wife is suffering.

My wife was diagnosed with Crohn's disease on December 2013.

She was 110 lb when she was diagnosed on last December. She was 125 lb on May 2013, by December 2013 she lost 15 lb. Her hemoglobin count on December was 9 gm/dL. However, after her treatment started she started gaining weight and her hemoglobin count increased to 10.5 gm/dL. By April 2014, after 5 months of treatment she was 118 lb. She was on Azoran and Coolgut(mesalazine) for the initial 5 months, along with Folic Acid tablets.

However problem started after 5 months of treatment. From mid April she start loosing her weight again. She was complaining of upper abdomen pain and irregular bowel movement. She complained of feeling bloated right after her meals. She also reduced her food intact because of the abdomen pain.

On May 2014, her hemoglobin count dropped to 9.5 gm/dL and weight was back to 110 lb. Her doctor suggested a blood test called CRP ( C reactive Protein if i recollect). Her CRP level was between 92 and 198. Looking at this her doctor said that a colonoscopy is needed since he cannot understand the sudden reduction in weight and hemoglobin count.

However, my wife was not ready for a colonoscopy right after 5 months of the initial colonoscopy. So her doctor suggested a abdominal USG, which concluded nothing significant. Her doctor then put her in:
Azoran,
Coolgut,
Folic Acid tablets,
Parit D tablets,
Digecaine syrup.

On June we again did all the blood tests. Her hemoglobin level dropped to 9gm/dL. Her weight dropped to 105 lb. Her doctor again pushed us for a colonoscopy and again my wife resisted. Even I was not sure if it is required so early after the first one. SO I also asked the doctor if it is necessary, and he asked us to monitor the weight and hemoglobin for one more month.

This month her hemoglobin level is still 9.5 gm/dL and weight reduced to 100 lb. Now the doctor is pushing us really hard for the colonoscopy. He is now saying that it might not be Crohn's at all and he is suspecting intestinal tuberculosis. He has no clue why her weight is reducing continuously and why her CRP level is so high. He is saying that she was in continuous medication and should not have showed such signs. He is also suspecting that the ulcers have spread to other parts also.

She is now very ill. She feels uneasiness all the time, she feels bloated and so cannot eat much. She is too weak to go to office and work. She has taken a 4 months leave from her profession in order to get some rest and with the hope that she regains her weight, her energy to work and also to get out of her depression.

I am going to visit another gastroenterologist tomorrow to get a better opinion on the sudden need of the colonoscopy so much now and how can after doing such a wide range of test and coming to conclusion that she has crohn's, the doctor now says that it might be intestinal tuberculosis and not crohn's.

I would like to know from you all if reduction in weight even when in medication has been seen in other crohn's patient? And if anyone of you required to do colonoscopy within 5-6 months of the first colonoscopy?

Apart from this if there is any suggestion you have for my wife, please let me know.

Saikat Sengupta
India

Re: weight loss while on crohns medication: Yes, absolutely you can lose more weight. It is a sign things are not under control. My kid has had 3 colonoscopies in 24 months and has another one in 2 months. Your gut can change easily in 5-6 months so if symptoms suggest something is up a scope might be needed. Alternatively an MRI would give a better view of what is going on and it isn't so invasive.

I think I would do the colonoscopy. It remains the best way to see what is going on in there. I know they suck and the prep is awful, but there is no harm in doing another so soon

The other possibility is to ask for another drug. I am not familiar with all of the medications you mentioned, but mesalazine is sort of on the milder side and appears not to be working. If you really don't want more testing, they could try another medication. Has prednisone been recommended at all? Sounds like she is in a pretty severe flare pred is often used short-term to help people get into remission. A CRP of over 90 is very high.

Hopefully you will get some answers/reassurance from the second opinion. I am interested to hear what they recommend.

Yes, just because she is on meds does not mean that her disease is under control her disease may be more than the meds you've mentioned can handle as they seem to be 5ASA5 meds and azathioprine. It can take the thioprine a few months to work and levels need to be tested to ensure she is on a dose that will reach therapeutic level.

If you have active disese that the meds aren't managing then another colonoscopy is definitely warranted, and though an MRI can pick up inflammation if it is simmering or small ulcerations then an MRI can miss it. Of course the colonoscopy can only see the colonoscopy and last part of small bowel. So further testing with an endoscopy and possibly imaging of the small bowel may also be warranted.

I'm afraid I must echo those above. Crohns is a tricky thing to treat and every individual reacts differently to the medications. It could be that the dose isn't high enough, that the medication hasn't been given enough time to work or that the disease is simply too aggressive for the current treatment plan to keep it controlled.


I can understand your wife's reluctance to have another colonoscopy so soon, they aren't fun tests, but it's important to know what's going on.

There are other tests that can helps get a picture of what's happening, there are specialist stool tests that can look for inflammation as well as blood tests. There's an investigation called a barium swallow or a barium meal follow through where the patient drinks a solution that shows on X-ray. It is then followed through the digestive tract to see if there are any narrowings or blockages.

There are also CT and MRI scans which can be used to get a more detailed view of the digestive system.

While all these tests can be helpful, they do not allow doctors to take biopsies which means that microscopic inflammation might be missed. I had an MRI come back clear in June, but other tests indicated inflammation, so I'm now waiting for a colonoscopy as these are generally thought of more reliable.

Crohns disease is an aggressive illness and it is entirely possible for a lot of damage to occur in a short space of time. If you can encourage your wife to allow the doctors to do some more testing then I think it would be beneficial.

Well....thanks everyone for your advices and suggestions. Well it has been very tensed and anxious last 3 days. The day I asked for all your advices, the very next day my wife had a very bad flare up. She was complaining of continuous stomach cramps and she was vomiting continuously. Well I must mention here that my wife does not show the symptom of diarrhea, instead she vomits a lot. Her doctor said that many patients never complain of diarrhea at all, instead they complain of vomiting. However, looking at her deteriorating health we rushed her to the emergency ward. The doctors immediately pushed 4 IV injections (PANTOPRAZOLE, Ondansetron hydrochrolide/Emeset, Buscopan/Hyoscine and the fourth one i forgot) to stop the vomiting and stomach cramp. She was asked to be on liquid diet for the last two days and she is on soft diet from today. She had not complained of her stomach cramps and had not vomited since then. Her doctor said that her sudden vomiting and stomach cramp is from her acute gastritis and not from her Crohn's flare up since her flare up would not have disappeared with the injections that too for 3 days after injecting her.

After a lot of discussions she had given her consent for the colonoscopy and she will have her 2nd colonoscopy tomorrow. Hopefully this time the doctor might be able to find the reason for her continuous weight loss.

Well my wife had another colonoscopy today morning. I must say that what the doctor said after the colonoscopy was not very encouraging. He said that the extent of inflammation has reduced by 40% as compared to what was seen in the first colonoscopy 9 months earlier. He also said the healed areas have now become narrower. I had asked him if narrowing of the track upon healing is natural or not. To which he said that once an affected part of the tract is healed it has been observed many a times that it becomes narrower. I really don't know if this means that healing of the inflammations in this way is bringing with it some other complications or not.

He also said that after treating my wife with Budesonide Controlled Release Capsules for the initial 3 months and then continuing with Mesalamine and Azathioprine for this 9 months he expected complete healing of all the inflammations.

So after the colonoscopy he suggested me to consider alternate medications and gave me three options to ponder upon. First, continuing again with other corticosteroids (instead of Budesonide Controlled Release Capsules) along with Mesalamine and Azathioprine to achieve remission again. Second, to consider the treatment with Infliximab. Third, to go for a surgery.

Well I must say I am worried, anxious and also confused. Whats wrong with the first treatment plan of targeting remission through corticosteroids. I mean isn't it true that infliximab brings with it a lot of life threatening side-effects?

I would really appreciate if anyone can help me out with some personal experience of treatment with infliximab and give me some more details of its immediate side-effects and long term side-effects.

Corticosteroids steroids cannot be used ling term. Also the latest studies have shown that azathioprine has the same increased risks as infliximab. Inflixumab can work really fast and give your wife back her quality of life. That being said when scar tissue creates narrowing that can't be fixed with meds. If the narrowing is severe enough to cause issues then surgery should be considered.

Good luck and browse the forum there is lots of great information to be found.

I'm so sorry your wife is dealing with such difficult times.

Did her doctor change his opinion about tb? You certainly want to rule out tb before starting immunosuppressants of any kind.

Regardless of what medicine she opts for, can she supplement her diet with enteral nutrition drinks to try to improve her nutritional status and weight? Is she on B12 or iron?

Hugs to both of you!