Crohn's over 30 years, complication with strictures

[Sunshine333]

Crohn's for 30 years and complication with strictures

I have Crohn's for over 30 years and I tried all kinds of medications. I had a few small bowel resections and also surgery to remove fistula abscess. I am currently taking Imuran, but will be taking Humira soon. My Crohn's has been less active in the past 10 years, my bowel movement is once a day. However, I developed several strictures and some ulcerations in my small bowel which occasionally caused temporary bowel obstruction. My GI doctors advised me to Humira in addition to Imuran to control ulceration in the small bowel thus reduce the chance of obstruction. Also, I had a procedure called strictureplasty to enlarge these constrictions. However, due to abundant scar tissues from previous surgeries and ulceration, there was only one stricture that was enlarged while the other strictures need to be dilated as required. Since surgery is not an option, my present treatment is primary based on medication (Humira & Imuran), small bowel dilation as required (may be once a year) and low fibre diet. I am interested to share with other patients in coping with IBD especially dealing with strictures and small bowel obstruction, thanks.

 

[Jennifer]

Hi Sunshine333 and welcome to the forum!

May I ask why surgery is not an option? Do you mean at this time or in general you cannot have another surgery (perhaps another medical problem prevents you from being able to or do you already have short bowel syndrome)? I know that down the road it may mean another stricture (I have one as well from my previous resection). If you can manage by having them dilated when needed then that's great and I hope that the addition of Humira will help to prevent more scaring in the future.

We have a section on the forum for Humira if you have an questions or concerns: http://www.crohnsforum.com/forumdisplay.php?f=59

Again welcome!

 

[Sunshine333]

I don't have short bowel syndrome. However, the scar tissues from previous surgeries and ulceration in the small bowel would make any future surgery very difficult. At least this is the way I understand from my surgeon. My GI doctor recommends me to use Humira to control ulceration and thus preventing further scaring and narrowing in the small bowel. I understand it's quite common for IBD patients to develop strictures and have temporary bowel obstruction. So I would like to know more if others have this experience and the type of medication they use and how do they cope and deal with this issue.

 

[Justanothercp]

Sunshine,
I too have stricturing disease and have had bowel resection. I've been on medicare, Lialda, Omeprazole and Budesonide forever.
I started a Paleo diet about 9 months ago and feel better than I have in well over a decade. I know it's not for everyone, but I had great success with it.
Good luck.

 

[vtfamily]

Sunshine,
My son, 15 yrs old and dx at 6 yrs old, also has terrible stricturing disease. His have never been temporary. Docs always try to treat with meds first, but ultimately it comes down to surgery since all meds have failed.

He has been on Stelara now for two years. Pain free. Hospital free. Stricture free. Inflammation free. He has even grown 4" in the last 15 months!!

Since he was one of the first Crohn's kids to use Stelara, I started a thread "Using Stelara for Children with Crohn's." You can check it out if you'd like.

Stelara may help you reduce the inflammation so that you can have the resection...and then help you manage your disease too.

I hope this helps. Best wishes to you.
Cheryl VT

 

[Sunshine333]

Hi Vtfamily,

Stelara is a biologic treatment which may be similar to Humira which I will be using soon. I think Humira will control ulceration in my small bowel. However, my Crohn's has not been active in the past 10 years, my bowel movement is once a day and my abdominal pain was mainly caused by temporary obstruction. I always think biologic treatment is used to treat active Crohn's. Did your son has active inflammation and surgeries that caused strictures ? Take care.

 

[24601]

Hi Sunshine333! Welcome to the forum!

While you may have been asymptomatic, it sounds like you have had active disease - certainly if your doctor sees ulcerations now then you currently have active disease and hopefully Humira will treat this.

Something that has changed over the 20 years since I've been diagnosed (so I imagine this is perhaps the same for you) is that the standard for remission is now set much higher - and I think this may influence what you think of as active disease. I know that when I was first diagnosed that my doctors were merely aiming to reduce symptoms and that if they could achieve a reduction in symptoms and inflammatory markers then they'd likely call that remission. That really wasn't good enough though and these days, driven in part I think by the increased (and generally more effective) treatment options, the standard for remission is usually (and should be!) set much higher. Studies show that the best longterm outcome is associated with full mucosal healing so we need to be aiming for not just an abscence of symptoms and a lack of inflammatory markers in our bloods or stool but also no inflammation or ulcers seen in imaging AND at the highest standard of remission no inflammation seen in biopsies of the bowel.

So you would definitely be classified as having active disease by these standards - but I can see how it might not seem like active disease if you aren't having symptoms and that this wouldn't have been thought of as active disease by a lot of GIs in the past.

I hope you have good success with Humira and that it prevents more strictures.

When you have the temporary obstructions do you go on a liquid diet for a few days? Complete nutrition drinks like Ensure, Boost or Fortisip can be very useful for managing those obstructive symptoms.

 

[Sunshine333]

Hi Forum Monitor,

Thanks for your inputs, that's what my GI doctor told me I have active disease. I think a lot of IBD patients may think my condition as remission since my bowel movement is only once a day and no abdominal pain except caused by temporary obstruction. It's definitely like day and night compares to twenty years ago when the disease is very active. I think using Humira to treat the ulcers in my small bowel is useful to prevent further bowel narrowing and scaring. I hope the benefit of using Humira outweigh the side effect of this drug. After all the treatment option is limited and stricture can be a significant health issue.

When I have a temporary small bowel obstruction, I stop drinking and eating and let the bowel to rest. It usually takes anywhere from 12 to 18 hours to clear itself. I am on soft and low fibre diet these days. I do have multiple strictures and I am not sure if this is the reason why I am having only bowel movement once a day. After my obstruction has cleared, I usually go on fluid or soft diet for a day or two to make it easy for the bowel.

I noticed your current treatment is on stem cell transplant, how do you find this type of treatment. I have been wondering all these years why transplant is not a common option, may be it's the cost or the side effect and complication of a bowel transplant ?

Take care.

 

[24601]

Hi!

Stem cell transplants were first trialled for Crohn's patients in 2001 at Northwestern as it had been noted that people with Crohn's who'd been given stem cell or bone marrow transplants as a treatment for cancer, had experienced significant improvement of their Crohn's as a side effect of the treatment.

There have been a few trials worldwide now and what my doctors tell me is that the best results with this treatment are seen, as with all treatments really, when used early in the course of disease. So in the initial trials there were quite a few younger patients treated early in the course of their disease and the results were very promising with talk of longterm remission. But what they see in patients like me who have had this disease for a long time is that the disease will return but usually it is more sensitive to medication. You can also regain response to treatments that you have become unresponsive to or have had to stop because of antibody development - like Remicade or Humira. They've told me that my expectations should be 9 or 10 months of remission and then to be on meds just the same as before - though hopefully they will work better for me! We may well start meds before that point as the aim is to prevent even very low level inflammation which for me seems to result in strictures - and with 90cm of small bowel left more surgery to remove strictures is a poor option.

So a stem cell transplant does not, unfortunately, result in longterm remission but it is a very useful option to have. It's not commonly used because of the risk. There is a 2-3% mortality rate, as well as other risks of complications.

I'm only part way through my stem cell transplant so I'll let you know how it goes for me!

Small bowel transplants aren't used unless you have short bowel syndrome and have developed complications on TPN as it has a significant mortality rate - my doctors tell me it is roughly 50% at 5 years, though this has been improving. As with all organ transplants you have to be on high doses of immunosuppressants to prevent rejection so that along with the high mortality rate means it doesn't make sense as a treatment for Crohn's other than as a last resort. There is research going on into growing tissue matched small bowel so one day this may be a much more viable option. Of course it would also be nice to be able to prevent further damage to your shiny new small bowel too so hopefully there will be more progress in developing more and better treatments for Crohn's and perhaps even a cure - and then there will be less need for Crohn's patients to have bowel transplants!

I hope Humira works well for you. For most people the side effects far outweigh the risks they face from undertreated Crohn's and it sounds like you are definitely in that category with your history of strictures. As you say strictures are a significant health issue - potentially fatal in themselves if they result in complete obstruction, perforation or the loss of too much small bowel.

Fortunately these days there are a few more options so if Humira doesn't work for you it is worth trying the other anti-TNF alpha biologics and the newer biologics which work differently.

Good luck!

 

[Sunshine333]

Hi!
"Stem cell transplants were first trialled for Crohn's patients in 2001 at Northwestern as it had been noted that people with Crohn's who'd been given stem cell or bone marrow transplants as a treatment for cancer, had experienced significant improvement of their Crohn's as a side effect of the treatment".

Thanks for your information about using stem cell or transplant as options to treat Crohn's. In medical science, there are lots of unknown about the cause of disease and medication is used to treat symptoms and not the root of problem. In my opinion, more medical research is needed not only to treat Crohn's but also to find the cause of the disease and focus on prevention and develop preventive medicine.

Take care.

 

[vtfamily]

Gus' strictures are from long term inflammation and ulcerations, not scar tissue. Ironically, he heals really well after surgery...kids! First resection at 9 yrs old, then Remicade. Was asymptomatic for 18 months, both physically and clinically. Then doc did scope and found new acute strictures. Switched to Humira.
I do hope Humira works for you. Remicade and Humira are both TNF blockers. Unfortunately, neither worked for Gus. Our GI said the difference with Stelara is that it has an antiadhesion function, rather than a blocking function. Wish I /we understood why this is working and the others didn't. But I have learned to accept the very uniquely personal nature of Crohn's disease.

I never think in terms of remission. I can't allow myself to fully let my guard down. That keeps me vigilant, so that we can go on the offensive at the earliest signs.

Gus has constipation due to his strictures. The strictures slowdown the elimination process, too much moisture is removed and the result is fewer bowel movements.

Glad the liquids are helpful for you.

I hope Humira will be effective for you.
Cheryl VT

 

[Sunshine333]

Hi Vtfamily,

Thanks for your information and support.

Take care.

 

[Sunshine333]

Gus' strictures are from long term inflammation and ulcerations, not scar tissue.

Hi Vtfamily,

I am trying to find out the difference between inflammation and ulceration. I understand when Crohn's flares up, it causes inflammation. Are ulcers formed as a result of inflammation ? My recent colonoscopy shows ulceration in my small bowel, but there is no abdominal pain caused by ulceration except obstruction from strictures. Also my blood test shows my RBC, WBC and CRP levels are normal. I think ulceration will cause strictures in the small bowel and that's the reason we need medication like biologic treatment to get them under control. My understanding is Crohn's is less active when IBD patients are older like over 55, however, their strictures start to increase or build up due to previous surgeries and new ulceration. We probably think this is like a period of remission. Do other IBD patients have this experience and are they on moderate or strong medication like Imuran or Humira to get ulceration under control ?

 

[vtfamily]

Sorry for the delay, we've been away on vacation.

I think of it in these terms:

Inflammation is irritation in the lining of the gut/digestive tract. There are varying degrees of inflammation, from "swelling" (causing narrowing) up to large sections of raw/gooey tissue.

Ulcerations are like open wounds...think canker sore in the mouth. In our world, ulcerations are usually smaller, open sores that appear and disappear depending on the level of disease activity and our ability to control the gut environment.

It is when the disease is very active and we are unable to control the gut environment that Gus has the most difficulty. He develops large sections of strictures and the gut becomes very unstable (raw, gooey mess...on the verge of perforating), which makes it impossible to perform surgery right away. It is during these periods that he experiences unbearable pain.

Since none of Gus' strictures have formed in the locations of previous resections, we do not fully understand exactly how or why he is prone to severe stricturing disease.

Gus' labs usually look "fine." The only time his numbers are elevated is when he has large sections of strictured gut and the inflammation is at its absolute worst.

From talking to other parents, the absence of elevated labs during a flare is pretty normal and is one of the most frustrating facets of the disease. You would think the labs would be an effective tool in monitoring active disease progression. The test that most parents feel gives the most informative results is the fecal cal test. Still, we do the RBCs, WBCs, etc...

Locally, I am acquainted with other Crohn's patients whose disease manifests very differently from Gus' disease. They experience fissures, fistulas, severe inflammation, but not strictures. It's another personal aspect of the disease and the reason why doctors are coming closer to identifying specific subgroups of Crohn's. Hopefully, that will lead to more effective treatments for IBD patients.

I am not aware of age being a factor in disease activity. For my contacts, it is much more about management through diet (don't eat what hurts), meds and, when necessary, surgery.

I'm not sure if I answered your questions completely. I do hope that this has been somewhat helpful for you.

Take care.
Cheryl VT

 

[vtfamily]

Just checking in...how are you doing?

 

[Sunshine333]

Thanks for checking. There is a delay of using Humira for me because I wanted to get my essential immunization done before taking this medication. However, I will start using Humira next week and I hope this medication will help to control ulceration in my small bowel thus prevent further narrowing of my strictures.

 

[vtfamily]

Hope all goes well. If you are giving Humira to yourself at home, make sure you follow the directions and remove from the fridge 20 minutes prior to use. It also helps to Ice the area you will be injecting. Cold serum into room temp body makes for a bit of a shock to the system. Gus said it always burned, but the burning usually only lasted for a few minutes.