Outlook/Need for Drugs when few symptoms?

[likeleaves]

It's a gift to be able to share my story and get input - many thanks to those who read on and offer input.

I was diagnosed December 2015 and in the last 2 weeks, my CT enterography showed 20 cm of inflamed small bowel, in addition to the known inflammation around the ileocecal valve. There were no signs of stricturing, fistulas, etc.

As far as symptoms go, it's minimal - manageable. Short bursts of pain & cramping, but this I can grin, bear, and forget.

Sometimes I feel like this is something I would rather ignore. I've got no major problems; no major symptoms.


In light of this, isn't it possible that Humira and Imuran ---- the 2 drugs my doc is pursuing me to take ---- could have worse side effects than my disease left alone???


Question 2; if left untreated, what happens with this disease? I know that it's possible that lots of bad things can happen. But isn't it possible that nothing could happen, too?

Ultimately, I just feel like starting Imuran or Humira would be like winning the battle and losing the war. I feel like I could go a decade with no complications from Crohn's............. Maybe I could figure out a good diet........ Maybe I could figure out how to reduce stress.............. and drugs wouldn't be necessary until they are really necessitated! Taking these drugs now feels like a ramp-up of the situation that's frankly unwarranted by my situation.

Thoughts? Thank you so much.... I find this disease so mysterious and out of the norm of any type of disease....

 

[ronroush7]

Welcome. You could go a long time and the disease could be fine. On the oyhrr hand, there could be things going on in your body that you are not aware of. Better to be safe than sorry. I, personally, have been on Imuran for years without any big problems. It may have caused my hair to thin out some but I am not sure that that caused it.

 

[FrozenGirl]

No input in Humira but I was on Imuran for a year and loved it. It was an easy pill to take and my other major side effect was fatigue for the first couple weeks. In combination with Remicade it was the best I ever felt. Unfortunately I had to go off it due to an intolerance likely caused by genetic issues but i would encourage you to try one or both of them.

Sure life might be tolerable now but a) it might get worse without treatment, and b) why settle for "okay" when you could be in remission and feeling great all the time.

 

[crohnsinct]

Hi there. I do not have Crohn's but am the parent of two teens with the disease. I usually don't hang out in the adult section but somehow your story caught my eye.

They figure my older Crohn's girl had the disease about two years prior to her first major flare. She was totally asymptomatic. Maybe not gaining weight or growing much and a few little tiny episodes of blood but otherwise perfectly normal 12 year old girl and then BAM! Her first major flare. Two weeks into the flare she was hospitalized and put into ICU fighting for her life. The doc explained to us that the disease was silently doing it's damage all along. When you have Crohn's you really do not want to let it sit around untreated no matter how minor as it could turn on a dime. Further, untreated inflammation can increase your cancer risk.

Fast forward to my second daughter. She has mild, mild Crohn's. Asymptomatic compared to most people here. We have been treating her with middle of the road therapy (Methotrexate, Exclusive Enteral Nutrition and Diet) for the past year. Her disease hasn't gotten better but it hasn't gotten worse. We have just recently decided to move to biologics given the ongoing nature of her mild inflammation and having seen how quickly things can change.

We have done much research into diet as a means to treat inflammation. So far there are limited studies (although this is a big year for diet studies) on diet and inflammation control. There are plenty of studies and success with symptom resolution and this is great but it is only one of the goals. The other is to stop the inflammation.


Oh! One other point...many researchers say the earlier you move to an anti tnf biologic the better your chances of gaining control over the inflammation. If you wait too long you could end up chasing the inflammation and trying to get ahead of it.

The risks of the meds are low and only a possibility. The risks of untreated inflammation are generally a known and have a much higher chance of occurring.

I know pediatrics is a little different than adults and the kids tend to have severe, aggressive disease. Plus we are concerned with growth potential and missing school, social activities etc. I have heard of some adults who remain mild all of their lives and are able to keep the disease in check with lower level drugs.

In the end you have to choose which risks and side effects you are comfortable with. If you decide to take a conservative approach, I would just caution you to monitor inflammation very carefully so you can stop it should it look like it is making a home.

 

[likeleaves]

Thank you so much for responding... ronroush & frozengirl I think you are right, things could get worse- and fast- but it strikes me as fear-mongering unless I am given actual stats for each possibility since I would never just, by my intuition, expect my disease to ramp up in any of these ways. I will research on my own and ask my doctor to really explain more.

crohnsinct, I really appreciate your detailed response.... that is insane to hear how much your young ones are suffering. but it also highlights how awful this disease can be...thank you for your advice as well.

 

[eleanor_rigby]

Me personally - for five years I was undiagnosed and had symptoms similar to yours. No diarrhoea, my only symptoms were cramping that would last a few days and then go away again. Sometimes I could go months without this cramping occurring. Then one day my bowel perforated and I had to have an emergency resection. Those years of cramping indicated my bowel was narrowing.
It took a further 4 years to diagnose me with Crohn's as my symptoms are not typical. I jumped at the chance to start imuran in the hopes of avoiding another bowel perforation and emergency operation. We only have so much small bowel they can remove. I'd rather not risk needing a stoma bag with another operation, or indeed death with another perforation.

 

[likeleaves]

eleanor (great name by the way) it's kind of nice to hear someone with the same initial symptoms. I feel a bit like an oddball with my diagnosis since I (very gratefully) do not suffer from many of the most common and most painful/embarrassing symptoms.

So sorry to see that your diagnosis came through such dramatic events. It's unbelievable that you would suffer a perforation and *still not have the correct diagnosis!

You said the cramping indicated a narrowing bowel which resulted in perforation. I wonder if that is a common link- (cramping->perforation).......... it seems like there are no guarantees of prognosis with this disease, and in lieu of that I just wish there were more stats and case studies of the disease.....

 

[eleanor_rigby]

Hi, yes I was also confused that I have completely normal bowel movements. I think it's because my disease is basically isolated to my small bowel and from rereading your first post that is also the case with you. That 20cm is probably narrowed hence why you get the cramps. The cramps don't = perforation (don't worry too much about that it is a rare complication that happened to me), the cramps mean your small bowel is having a hard time getting food through your bowel. The small bowel is already very narrow in diameter so if your small bowel is inflamed and this causes narrowing you are at risk of having a bowel obstruction where food cannot get through at all. If this happens then you are at risk for a perforation and will need an operation to remove that 20cm (or even more bowel if you don't take medication and the amount of inflammation increases). My perforation was caused by an ulcer just obviously left for years, It became a deep ulcer and went through my bowel causing a hole.

I really believe you don't want to take risks with your small bowel - because we can't live without it. I know what it's like to want statistics to alleviate anxiety, but this is an individual and unpredictable disease. I've been in the statistics for rare things to happen (I.e there is like a 4% risk of bowel perforation, a 10% risk of inheriting IBD and my dad has UC). I've also been in the statistics for common things (I.e some people on imuran get pancreatis but I didn't - I didn't suffer any rare side effects). So although statistics can be useful, there's always the risk that you are that 1% - someone has to be. Bare in mind that the risk of developing Crohn's disease in the first place is rare - about 10 people per 100,000 per year are diagnosed and you have already hit that statistic.

With 20cm of inflammation and the fact that you are having symptoms (whether they bother you or not), you are increasing your statistics of complications happening to you everyday you are leaving it unchecked.

 

[Scipio]

likeleaves - How old are you? If you were diagnosed at age greater than 50 or especially 60 then there is less risk associated with leaving mild disease untreated. The disease is often milder in older-onset patients and they have fewer years ahead of them during which the disease can worsen. They are also at greater risk of cancer induction by the drugs, especially Imuran.

If, on the other hand, you are young, then there is greater risk that eventually the disease will advance to something way more serious - stricture, fistula, abscess, surgery, etc. In which case you are probably better off to treat the mild disease now in the hope of staving off these complications.

Whatever the case there are no guarantees. It's still perfectly possible for an older patient's disease to suddenly accelerate and it's possible (but not likely) that a young patient's disease could remain mild for decades. This question is something you need to answer together with your doctor.

 

[hcrum87hc]

Knowing what can happen when this disease is left untreated, I would risk the drugs. In fact, I am on that very same combination of meds with no noticeable side effects. If I didn't have a couple very narrow strictures from before I was diagnosed and being correctly treated, I would be in great shape. Hopefully that will still be the case once my strictures are removed.

Speaking of my narrow strictures, that's a great example of what can happen if Crohn's Disease is left untreated. I had been on sulfasalazine for several years due to "indeterminate colitis." Unfortunately, I thought my abdominal pains were due to the sulfasalazine, as that is one of the side effects. However, those pains were inflammation in my small bowel, which sulfasalazine does not fully heal alone, and as that inflammation occurred and healed over the years, my fibrotic strictures were formed, and they can only be removed through surgery. They aren't particularly fun to live with, and can cause bowel perforations (very dangerous, and sometimes fatal) and other complications. At the very least, I would see about starting on one of the two drugs. Many people have successful remission on Humira or Imuran alone. However, if going on just Humira, be aware that the Imuran theretically keeps your body from creating antibodies against the Humira, making it work better and longer for you.

 

[DEmberton]

It may have caused my hair to thin out some but I am not sure that that caused it.

Middle age comes to us all. My hair got quite thin when I was ill, which I thought maybe was just nature, but came back a lot thicker post surgery which was a relief. Anaemia does that. Nature is slowly taking it away though.

I had 18 years of no treatment and regular but not too terrible pain after being misdiagnosed, but then ultimately it got worse; I lost a load of weight and was eventually diagnosed with something and needed almost immediate surgery for a stricture. It certainly would have been better if I'd had some treatment years before but whether I needed to be on anything for all that time is hard to say.

 

[likeleaves]

Good points, all... you've given many good reasons to stop worrying and love the drugs.

I just turned 26, been healthy and really active all my life... plus very negative towards what i perceive as a medical industrial complex? So yes the adoption of maintenance drugs is terrifying

 

[Scipio]

Age 26? In that case I'd get the drugs. You have many decades of life ahead of you, and the chances that the disease will remain mild all that time without treatment are low.

The drugs do carry some risks, but the risks from the untreated disease are much greater.

 

[Scared1]

It's a gift to be able to share my story and get input - many thanks to those who read on and offer input.

I was diagnosed December 2015 and in the last 2 weeks, my CT enterography showed 20 cm of inflamed small bowel, in addition to the known inflammation around the ileocecal valve. There were no signs of stricturing, fistulas, etc.

As far as symptoms go, it's minimal - manageable. Short bursts of pain & cramping, but this I can grin, bear, and forget.

Sometimes I feel like this is something I would rather ignore. I've got no major problems; no major symptoms.


In light of this, isn't it possible that Humira and Imuran ---- the 2 drugs my doc is pursuing me to take ---- could have worse side effects than my disease left alone???


Question 2; if left untreated, what happens with this disease? I know that it's possible that lots of bad things can happen. But isn't it possible that nothing could happen, too?

Ultimately, I just feel like starting Imuran or Humira would be like winning the battle and losing the war. I feel like I could go a decade with no complications from Crohn's............. Maybe I could figure out a good diet........ Maybe I could figure out how to reduce stress.............. and drugs wouldn't be necessary until they are really necessitated! Taking these drugs now feels like a ramp-up of the situation that's frankly unwarranted by my situation.

Thoughts? Thank you so much.... I find this disease so mysterious and out of the norm of any type of disease....

That is a tough situation - my husband has no symptoms and he is currently taking Lialda, just because the GI said he would like him on SOMETHING. So my only advice is to maybe try to be on something and maybe not bring out the big guns just yet? If there is a way you can try something less strong and then maybe do a combo diet but then get another checkup with your GI to confirm its working may make you feel better? I am by no means a doctor but my 2 cents.

 

[likeleaves]

Thank you! That is exactly what happened to me!

I was shown to have inflamed areas via a colonoscopy, and a heightened white blood cell count + anemia; was diagnosed and put on prednisone and lialda. We misjudged it, went off drugs, and it came back - at which time, a CT scan was ordered revealing ~8 inches more inflammation that was unknown prior.

Do you mind sharing the objective data signaling your husband's diagnosis?

The other question regards cost/benefit. Has your doctor told you what the risks are if your husband does NOT go on meds? The docs are like, "well, it could be this massive horror story waiting to happen... or it could be nothing... so.." disregarding the fact that some (albeit unlikely) side effects of these drugs convey horror stories of their own!

 

[Scared1]

Thank you! That is exactly what happened to me!

I was shown to have inflamed areas via a colonoscopy, and a heightened white blood cell count + anemia; was diagnosed and put on prednisone and lialda. We misjudged it, went off drugs, and it came back - at which time, a CT scan was ordered revealing ~8 inches more inflammation that was unknown prior.

Do you mind sharing the objective data signaling your husband's diagnosis?

The other question regards cost/benefit. Has your doctor told you what the risks are if your husband does NOT go on meds? The docs are like, "well, it could be this massive horror story waiting to happen... or it could be nothing... so.." disregarding the fact that some (albeit unlikely) side effects of these drugs convey horror stories of their own!

Sure! Well it started in Dec 2015 - he went in for a completely different reason not Crohns or any symptoms but to check something else via colonoscopy. They saw some mild inflammation in the rectum and terminal ilieum and so ordered a fecal calprotectin which came out to be 313 and the normal was 162 per quest diagnostics. They did a biopsy and saw very rare granuloma in the colon but thats it. So then they are like come back in March 2016 and lets do a CT scan. He came back and the inflammation although very mild was there in 3 cm of his ilieum and very mild liminal wall narrowing like 3 cm. so per the GI it hasnt changed or gotten worse and said its Crohns. So he started Lialda. 3 weeks late, he did the fecal test and it came back normal so the GI said this is a good indicator that the inflammation may be gone and he is responding well. We are scheduled for a MRE in July to confirm. Mind you - he has no symptoms, not even mild ones, the area where its supposed to be tender - no pain ever. Bowel movements are very normal, no mucous no blood, no problems whatsoever when eating, his blood work is good, other than those items I mentioned, there is nothing else to go by. So for me, I dont think Lialdla or taking medication (as long as not biologics because I am praying if his condition worsens in the future the qu biologics ssi vaccine would be available by then or the MAP vaccine - Im going to push for both) so i recommend being on something, what is it going to hurt - if Crohn's is indeed caused by a pathogen and with all the current research being done - I am sure within a decade there is going to be a huge breakthrough - why not buy yourself some time and not let it get worse? Thats the approach I am taking - let's stay on top of this and wait to see whats coming down the pipeline I also put my husband on 3000 vitamin D and a multivitamin

 

[Scared1]

Oh one more thing - the doctor said he could not go on meds BUT he would be taking a big risk and Lialda per his words are pretty safe, so why not use it? He also said - think of it this way, if it works now and he stays, it would be better for him because if he tries it and stops it can come back worse. Considering its 4 pills a night, $40 copay a month, and he said its the cousin of aspirin so pretty safe, it had more benefit. I think in part the doctor said this because its almost a year now and the inflammation so far (the MRE would confirm) hasnt really gotten worse. In your case, it seemed it did - how long did you stop the drugs and saw the inflammation get worse? Personally, I also recommend googling and learning as much as you can. I have watches EVERY youtube video, am following every clinical trial and read many many scientific articles on research as to the cause - all encouraging this far and helped me deal with the shock I had when my husband was diagnosed. It was the worse month in my life - But knowledge about it made me realize we are in exciting times and hopefully my husband won't have to live with this forever or my kids if they get it (god forbid) down the line...

 

[likeleaves]

Well your husband's case is really encouraging! Do you know the prognosis - is he expected to go off lialda at any once total remission is gained?

Why do you think biologics are so scary? I found the concept of a biologic a bit terrifying in itself. But they keep rattling off the side effects, which somehow seem kinda minimal the more you hear them, so I am getting less scared.

 

[likeleaves]

You really do sound like youve done your research. That's awesome. I try to research but feel like i get no solid answers..... (which may be a commentary on my researching skills more than anything else lol)

I dont believe that my Crohn's actually got worse? In fact I believe my very first symptoms ever were the worst- urgent bathroom breaks, nausea, mucus, but I ignored because I thought it was psychosomatic (those really are classic nervous/anxious/upset symptoms!) The additional inflammation we found causing him to get me on Humira was not necessarily new, it had just not been known before. Its in the small bowel, which we had only just got a visual on with the CT scan, only just ordered last monthn

 

[Scared1]

The doctor actually said he can go down to 2 and just do fecal tests and crp bloodwork 2-3 times a year if the MRE shows the inflammation is gone, so never really go off of it.

I just feel the side effects although the doctor said are rare, are too much to deal with but maybe It will be different once we get there - of course if there is no other choice, I will take a biologic over surgery. I tend to be pessimistic and a compulsive worrier - I do have this deep and small hope that maybe he doesn't have Crohn's because I wonder why he went into apparent remission with less than 3 weeks of Lialda - but I guess I have to take my doctor's advice and only time will tell but his words are it strongly favor Crohn's, so that is what I will go with.

 

[likeleaves]

I hear you!!! And second lots of your feelings. I'm a worrier ad well... and i am just getting over my denial of having the disease. I am sure things will go well for your husband. Best wishes for yall!

 

[tots]

As in my case you may not feel the disease spreading but it's possible.

I thought taking a low key approach would work. For me I did more damage
lesson learned. Not everyone is the same though.

Good luck I hope you feel better soon which ever way you choose.


Lauren

 

[Anonymous77]

I'd like to add in that I got diagnosed about a year after the disease probably developed - and for the longest time i was just losing weight and feeling tired, I thought it was just a strange allergy for months.

Even at its very worst I almost never had bowel symptoms or much pain, colonoscopy showed healthy large intestine despite CRP and fecal calprotectin being massively high. However on capsule endoscopy there were several ulcers all the way through the small intestine.

Im sure if these ulcers had been on the skin it would have been immensely painful - you can't trust that whilst you have no symptoms the disease is doing ok. It could progress and cause severe issues that might not be reversible by the time you actually feel it. So i would advise going for treatment regardless of how you feel.

 

[eleanor_rigby]

I'd like to add in that I got diagnosed about a year after the disease probably developed - and for the longest time i was just losing weight and feeling tired, I thought it was just a strange allergy for months.

Even at its very worst I almost never had bowel symptoms or much pain, colonoscopy showed healthy large intestine despite CRP and fecal calprotectin being massively high. However on capsule endoscopy there were several ulcers all the way through the small intestine.

Im sure if these ulcers had been on the skin it would have been immensely painful - you can't trust that whilst you have no symptoms the disease is doing ok. It could progress and cause severe issues that might not be reversible by the time you actually feel it. So i would advise going for treatment regardless of how you feel.

So true! The small intestine is crafty like this

 

[likeleaves]

So true! The small intestine is crafty like this

Do y'all think something like Humira is necessitated in cases of small intestine inflammation? I tried Lialda, seemed to be in remission but stopped taking it (somewhat accidentally) and now doc wants me taking Humira which seems like a disproportionate intensification

 

[ronroush7]

Do y'all think something like Humira is necessitated in cases of small intestine inflammation? I tried Lialda, seemed to be in remission but stopped taking it (somewhat accidentally) and now doc wants me taking Humira which seems like a disproportionate intensification

I don't know all the factors but it might help prevent worst damage.

 

[eleanor_rigby]

It has been established for quite some time I think that mesalazine drugs (such as lialda) are very effective in ulcerative colitis - inflammation that only affects the first layer of the colon. However, with small bowel crohn's it is not effective as it does not target the small bowel and Crohn's Disease affects all layers of the bowel wall, not just the first layer like UC. Mesalazine drugs are topical treating only that first layer. Clinical trials have found them little better than placebo.

The GI would be prescribing you with Humira to prevent you needing a bowel resection further down the line. The rates of needing surgery were extremely high prior to the release of these biologic drugs.

At some point you will have to decide what you find scarier - the risk of having several feet of small bowel removed and potentially waking up with a ileostomy bag, risking further surgery again in the future and losing more and more small bowel. Or risking the side effects of biological drugs. I'm afraid it is a case of being in between a rock and a hard wall.

 

[Anonymous77]

Agree with eleanor here - no matter what the side-effects are they really can't be as bad as pulling out your intestines and having bags fitted. Sometimes the doctors instructions may seem too severe, or not severe enough - but its based on huge trials, not individual anecdotes. They prescribe them because they work and you can't bet you will be the 1% who need no help and go into remission, shop around - but eventually trust a doctor.

That said, im surprised to hear mesalazine is only for colitis, ive been given it despite no large bowel involvement. I might have to take my own advice and shop around.

 

[eleanor_rigby]

That said, im surprised to hear mesalazine is only for colitis, ive been given it despite no large bowel involvement. I might have to take my own advice and shop around.

Are you on this in combination with anything else? I think that is common.
Yeah my dad has been just on asacol and been in remission for UC for the last 35 years. I think he thinks of his UC like something as simple as hay fever. So jealous Crohn's disease in the small bowel sucks

 

[ronroush7]

Are you on this in combination with anything else? I think that is common.
Yeah my dad has been just on asacol and been in remission for UC for the last 35 years. I think he thinks of his UC like something as simple as hay fever. So jealous Crohn's disease in the small bowel sucks

That is where mine is and I send support.