IBD Awareness: Diagnosis & Treatments

IBD Awareness_12-3-18

Diagnosis & Treatments of Crohn’s Disease

I was diagnosed with Crohn’s Disease after I had a colonoscopy and showed active signs of inflammation and ulceration in my intestines.  I have been on several treatments and because my disease tends to be on the moderate/severe side I am currently on a biologic medication which I self-inject twice a month.  I have had several surgeries, some minor to help correct some fistulas and others major to remove parts of my diseased intestine and I currently have an ileostomy.  The biggest medication side effect I deal with is the reduced immunity so I tend to catch colds and other infections fairly easily.

Testing & Diagnosis

There is no single test really to determine if someone has an IBD.  The GI symptoms of Crohn’s can often be similar to a wide range of other issues so it’s usually a matter of figuring out what you don’t have to narrow down the options.  These tests will usually include blood tests, stool (poop) tests, and x-rays with the use of a contrast.

Once other diseases/infections are ruled out, usually the next step is a scope (endoscopy or colonoscopy) where a small camera on a lighted tube is entered into your digestive system so they can take a look around and collect small tissue samples for biopsy.  An endoscopy goes in the mouth and down the throat and a colonoscopy enters through the other end of the digestive system.  While these scope procedures sound awful, they aren’t that bad and are usually done as outpatient procedures under sedation.  Sometimes additional scanning such as a CT scan, MRI, or swallowing a pill-sized camera is also used to get a better idea of what is going on inside.

Treatments

Since CD is a chronic illness it doesn’t really get “cured”.  Through treatments the goal is to bring the disease under control by reliving/eliminating symptoms, allow tissues to heal, and to decrease the frequency of disease flares.  There can be a wide variety of severity as well as symptoms associated with Crohn’s Disease and so treatment options can vary from patient to patient.  Doctors will review the results from tests and the symptoms the patient is dealing with to create the best treatment plan.  It is useful for patients to keep a log or journal of their symptoms so they can share with their doctor and to continue to have regular check-ins with their doctor to review how the treatments are working and if any changes need to be made.  Treatment usually involves medication or a combination of medications, alterations to diet/nutrition, and in some cases surgery.

There are several medication options, I’ll go over some highlights but if you want to know more I suggest clicking here for lists and videos about the different medication options as well as talking with your doctor about the various options.  As with any medication, there are a range of side-effects that come with these medications.  One of the most common is reduce immunity but check with your doctor/pharmacist on the know side effects if you start any medications.

  • Aminosalicylates (5-ASA) – They are thought to be effective in treating mild-to-moderate episodes of Crohn’s disease and useful as a maintenance treatment in preventing relapses of the disease. They work best in the colon and are not particularly effective if the disease is limited to the small intestine.
  • Corticosteroids – Corticosteroids nonspecifically suppress the immune system and are used to treat moderate to severely active Crohn’s disease. (By “nonspecifically,” we mean that these drugs do not target specific parts of the immune system that play a role in inflammation, but rather, that they suppress the entire immune response.) These drugs have significant short- and long-term side effects and should not be used as a maintenance medication.
  • Immunomodulators – Immunomodulators generally are used in people for whom aminosalicylates and corticosteroids haven’t been effective or have been only partially effective. They may be useful in reducing or eliminating the need for corticosteroids. They also may be effective in maintaining remission in people who haven’t responded to other medications given for this purpose. Immunomodulators may take several months to begin working.
  • Antibiotics – Antibiotics may be used when infections—such as abscesses—occur in Crohn’s disease. They can also be helpful with fistulas around the anal canal and vagina.
  • Biologic Therapies – These medications represent the latest class of therapy used for people with Crohn’s disease who have not responded well to conventional therapy. These medications are antibodies grown in the laboratory that stop certain proteins in the body from causing inflammation.

Crohn’s Disease is not believed to be caused by bad diet and nutrition, but alterations may help reduce symptoms and increase the absorption of nutrients.  If you are interested in more info about diet & nutrition with IBD, there is a good online webcast: http://programs.rmei.com/Nutrition2018/

Usually one of the last treatment options is surgical.  About 2/3 to 3/4 of patients with Crohn’s Disease end up needing surgery at some point.  Surgery becomes necessary when medications can no longer control symptoms, or if you develop a fistula, fissure, or intestinal obstruction. Surgery often involves removal of the diseased segment of bowel.  Sometimes the bowel may have to be rerouted through an artificially created hole (stoma) in the abdomen. A colostomy is an operation that connects the colon to the abdominal wall, while an ileostomy connects the last part of the small intestine (ileum) to the abdominal wall.


“Crohn’s Diagnosis & Testing.” Crohn’s & Colitis Foundation. http://www.crohnscolitisfoundation.org/what-are-crohns-and-colitis/what-is-crohns-disease/crohns-diagnosis-testing.html, n.d. Web. 2 Dec. 2018.

“Crohn’s Disease Medication Options.” Crohn’s & Colitis Foundation. http://www.crohnscolitisfoundation.org/what-are-crohns-and-colitis/what-is-crohns-disease/crohns-medication.html, n.d. Web. 2 Dec. 2018.

“Crohn’s Treatment Options.” Crohn’s & Colitis Foundation. http://www.crohnscolitisfoundation.org/what-are-crohns-and-colitis/what-is-crohns-disease/crohns-treatment-options.html, n.d. Web. 2 Dec. 2018.

“Diet and Nutrition.” Crohn’s & Colitis Foundation. http://www.crohnscolitisfoundation.org/what-are-crohns-and-colitis/diet-and-nutrition/, n.d. Web. 2 Dec. 2018.

“Types of Medications for Crohn’s Disease and Ulcerative Colitis.” Crohn’s & Colitis Foundation. http://www.crohnscolitisfoundation.org/resources/types-of-medications.html, n.d. Web. 2 Dec. 2018.

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IBD Awareness Week

IBD Awareness_12-2-18

This week is Inflammatory Bowel Disease (IBD) Awareness Week!

I was diagnosed with Crohn’s Disease in 2006.  I had a total colectomy (removal of large intestine in 2012) so I have an ileostomy.  I had further surgery to remove additional parts of my small intestine in 2016.  I have also dealt with arthritis, skin lesions, mouth/throat ulcerations, kidney stones, blood clots, anemia, abscesses, fistulas, vitamin & mineral deficiencies, and bowel obstructions as part of my IBD journey.  Whee!

So, as part of this awareness week, I’m going to do a post about IBD, what it is, how it impacts various parts of the lives of those who deal with it, medications, side effects, etc.

So, to start off:

What the heck is IBD?

IBD stands for Inflammatory Bowel Disease and is a chronic autoimmune disease.  Just to clarify, IBD is different from IBS (Irritable Bowel Syndrome); IBS also affects the large intestine and causes all sorts of awful issues as well but does not cause changes in bowel tissue or increase the risk of colorectal cancer (it still sucks, but it is a different medical condition).

Crohn’s Disease (CD) and Ulcerative Colitis (UC) are both IBD’s.  Both diseases have similar symptoms and are caused by the immune system attacking the lining of the intestines.  UC is limited to the large intestine and involves the innermost lining of the colon.  CD can involve the entire digestive tract from mouth to anus but typically affects the small intestine.  CD can affect the entire thickness of the intestinal wall (not just the inner lining).

I wanted to explain the two diseases, but my focus will be on Crohn’s Disease since that is what I deal with and where I have experience.

Typical GI Symptoms of Crohn’s Disease:

  • Diarrhea
  • Rectal Bleeding
  • Urgent Need to Move Bowels and/or feeling of incomplete evacuation
  • Abdominal Cramping & Pain
  • Constipation

Typical General Symptoms of Crohn’s Disease:

  • Fever
  • Loss of Appetite
  • Weight Loss
  • Fatigue
  • Night Sweats
  • Loss of normal menstrual cycle

With IBD you can also have extraintestinal manifestations (symptoms outside the GI tract):

  • Joints – inflammation of the joints (arthritis)
  • Skin – the most common being erythema nodosum but other skin issues/lesions can also be an issue
  • Mouth – painful sores in the mouth
  • Eyes – the most common being episcleritis, but other eye inflammation issues can occur
  • Bones – developing thinner/weaker bones due to poor absorption of calcium and vitamin D, the use of steroid medication, and lower physical activity due to disease
  • Kidneys – increased risk of kidney stones
  • Liver – about 1 in 3 CD patients develop gall stones
  • Blood Circulation – patients with IBD are more than twice as likely to develop blood clots
  • Anemia – both iron deficiency and vitamin deficiency anemias

Complications from Crohn’s Disease can include:

  • Obstruction (blockage) of the intestines
  • Formation of scar tissue
  • Fissures (cuts/tears in the anal canal)
  • Abscesses (localized pockets of infection)
  • Fistulas (abnormal tunnels that form from one loop of intestine to another, or that connects the intestine to the bladder, vagina, or skin)
  • Increased risk of Colon Cancer
  • Kidney Stones
  • Vitamin & Mineral Deficiencies (malabsorption of B-12, iron-deficiency anemia, decreased vitamin D are common deficiencies)

What causes Crohn’s Disease and who it affects is best summarized:

Crohn’s disease may affect as many as 780,000 Americans. Men and Women are equally likely to be affected, and while the disease can occur at any age, Crohn’s is more prevalent among adolescents and young adults between the ages of 15 and 35.

The causes of Crohn’s disease are not well understood. Diet and stress may aggravate Crohn’s Disease, but they do not cause the disease on their own. Recent research suggests hereditary, genetics, and/or environmental factors contribute to the development of Crohn’s Disease.

The GI tract normally contains harmless bacteria, many of which aid in digestion. The immune system usually attacks and kills foreign invaders, such as bacteria, viruses, fungi, and other microorganisms. Under normal circumstances, the harmless bacteria in the intestines are protected from such an attack. In people with IBD, these bacteria are mistaken for harmful invaders and the immune system mounts a response. Cells travel out of the blood to the intestines and produce inflammation (a normal immune system response). However, the inflammation does not subside, leading to chronic inflammation, ulceration, thickening of the intestinal wall, and eventually causing patient symptoms.

Crohn’s tends to run in families, so if you or a close relative have the disease, your family members have a significantly increased chance of developing Crohn’s. Studies have shown that 5% to 20% of affected individuals have a first – degree relative (parents, child, or sibling) with one of the diseases. The risk is greater with Crohn’s disease than ulcerative colitis. The risk is also substantially higher when both parents have IBD. The disease is most common among people of eastern European backgrounds, including Jews of European descent. In recent years, an increasing number of cases have been reported among African American populations.

The environment in which you live also appears to play a role. Crohn’s is more common in developed countries rather than undeveloped countries, in urban rather than rural areas, and in northern rather than southern climates.”


“What Is Crohn’s Disease?” Crohn’s & Colitis Foundation. http://www.crohnscolitisfoundation.org/what-are-crohns-and-colitis/what-is-crohns-disease/, n.d. Web. 2 Dec. 2018.

“Crohn’s Symptoms.” Abbvie. https://www.crohnsandcolitis.com/crohns/disease-symptoms, n.d. Web. 2 Dec. 2018.

“Extraintestinal Manifestations.” IBD Clinic University of Alberta. http://www.ibdclinic.ca/what-is-ibd/complications/, n.d. Web. 2 Dec. 2018.

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Flare Anxiety Sucks

Mr. Stoma_2018-10-08

One of the rarely talked about frustrations dealing with Crohn’s (and I imagine any chronic illness) is the anxiety of when your next flare is going to hit.  Can you make those plans next week or next month?  Can I make a plan to take a trip next year?

Will my next flare result in a few more pills?  A complete medication change?  Surgery?

Will I have to take time off work?  How long?  Will I have the time to plan?

How will it affect my family’s plans?  My friends plans?

Will I just feel icky for a few days?  Will I be curled up in a ball of pain and fatigue for weeks?  Do I have to get more of my insides chopped out and have to deal with surgery recovery?

Some folks might say, “don’t worry” but considering I’ve had 4 surgeries in the past 6 years, “don’t worry” isn’t a good course of action.

My disease has started acting up again recently which makes me extremely disgruntled.  I’m aching in places I haven’t ached in a while and I’m bleeding from places that shouldn’t be bleeding.  My output is changing.  From my past experiences, I know that by the time I start having symptoms, my immune system has been trashing my insides for a bit.

I’m trying to get in with my doctor this week but the anxiety is awful.  What will they find?  What will I need to do?  Can we just change meds?  How many med options are left for me at this point?  I really, REALLY do not want another surgery right now.  I feel like I have finally started feeling “normal” after the last one I had in 2016 (which took a lot longer to fully heal/recover from than I expected).

So, right now I’m just a ball of anxiety.  Not quite as amusing as I usually try to be because I’m mostly just trying to not curl up in a ball, rock back & forth, and cry right now.

I know we’ll get it worked out but the waiting and not knowing what the heck is going on is awful.  And wondering how long I have until the next flare.

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I thought it was only me

One of the reasons CC is open about dealing with Crohn’s Disease and having an ostomy is the possibility of helping others deal with their illnesses or to at least let them know that they aren’t alone in dealing with this stuff.

Mr. Stoma_Only MeI don’t know how many times on social media groups, folks will share things and you get a ton of comments that say, “Yes! I thought it was only me who dealt with this!”  This is the reason I think we need to share and support each other more.  Sometimes we get isolated (literally and/or figuratively) with our symptoms and don’t realize that some things we deal with aren’t because we’re weak or lazy but part of the diseases we fight.

Most recent example that sparked this post was a meme about being worn out and feeling ill just after taking a shower.  I remember a time when taking a shower was no big deal.  That doesn’t take much energy or work, right?  Fast forward to living with a chronic illness and you realize how much work your body has to do to take a shower.  I’ve had times when I have to have a chair in there; I’ve almost thrown up or passed out just trying to clean my body and certainly have had to lie down and catch my breath/rest after a shower (even on better days I usually have to rest after showering).  And the comments to this meme were basically: OMG! I thought I was the only one!  Seriously, comment after comment of “Wait, this happens to other people too?!”

I’ve dealt with the feelings of frustration/anger because I think I must just be lazy because I just can’t get up and do the dishes or fold a load of laundry.  I always have to make myself take a step back and realize that most likely, I’m not being lazy.  Because I know the days when I do feel better and don’t deal with a lot of fatigue, I get shit done.  I’m doing the dishes and the laundry.  I’m going out and socializing.  I’m working on projects.  So, if I’m laying on the sofa without the energy to take the trash out I self-evaluate.  Am I procrastinating/just don’t want to do it OR do I seriously not have the energy to do this?  Usually it’s the latter.

Dealing with this sort of frustration is probably the hardest to deal with I think because it’s your brain trying to sabotage you into thinking that you just suck and not that you’re just sick or dealing with your condition(s) which often have a wide variety of symptoms.

But, what this long, rambling post is getting at is to share your stories and experiences with others.  Friends & family – and if they’re not supportive, find a group that is.  Whether that group is online or in person.  Because if we don’t share our stories about what we deal with we end up thinking that we’re the only one dealing with crazy shit – but the vast majority of the time, we’re not the only one.

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What the hell is Hidradenitis suppurativa?

So, back in 2014 I did a post about boils.  And how they suck.  And it was part of the 10 plagues of Crohn’s plan and I would start sneezing locusts next.

Thankfully, no one has started sneezing locusts.  But the boils have persisted (on and off) since then.  Which really is a pain.  Literally.

Earlier this year CC went to her specialist at UNC and the doc asked if anything else (other than normal Crohn’s stuff) was going on and happened to mention the underarm boils.  She took a look at it and said, “Oh, that’s Hidradenitis suppurativa!”  While it’s not directly tied to Crohn’s Disease, it isn’t unusual for those with inflammatory bowel diseases to have this.

Mr. Stoma vs H. suppurativa

So what is Hidradenitis suppurativa (HS)?

“Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. They typically develop where the skin rubs together, such as the armpits, the groin, between the buttocks and under the breasts. The lumps may break open and smell or cause tunnels under the skin…. Hidradenitis suppurativa develops when hair follicles become blocked and inflamed. No one knows exactly why this blockage occurs. Factors that may play a role include hormones, metabolic syndrome, genetics, an irregular immune system response, smoking and excess weight.  Hidradentitis suppurativa is not caused by an infection and can’t be transmitted sexually. It’s not contagious and is not due to poor hygiene…. There is no cure for hidradenitis suppurativa. But early and long-term treatment may help control pain, promote wound healing, keep new lumps from forming and prevent complications.”

Info from the Mayo Clinic website

Fun times.

On the plus side, at least I know now what is going on and I got a referral to a dermatologist who specializes in HS and has dealt with a lot of Crohn’s patients who have this condition.

Since I’ve been dealing with this condition for as long as I have and I haven’t been responding well to antibiotic treatment for it and my armpits have become tunneled like Swiss cheese from this (FYI – if you do a web search for this condition it usually comes with photos, and it’s not a pretty condition) the suggested treatment is surgical.

Because apparently I have to have an annual surgical appointment.  *eyeroll*

Luckily, compared to most other surgeries I’ve had this is really minor.  No general anesthesia.  Just local and it’s performed in the dermatologist office.  But, basically CC is going to have her armpits sliced open and left open to heal to help the under-skin tunnels heal from the inside out.  Yuck.  Followed up with laser treatments in the armpits to remove the hair follicles to hopefully avoid this happening in the future (although there isn’t a “cure” for HS).

So, while not exciting (and definitely not pretty), at least there is a plan for dealing with this because we’re kinda tired of dealing with it.

But, at least this treatment comes with the added bonus of no more underarm shaving after the laser treatments!  Silver lining and all.

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It’s Been A While!

Oh, where to begin…

mr-stomas-behind-20170214

2016 was…problematic.

It started off with more blockages.  Boo!  But this time it wasn’t related to hernias.  Turns out I had developed antibodies to Humira and my Crohn’s was kicking my ass and had narrowed a section of my small intestine.  We switched up meds and crossed our fingers hoping that I would heal up.  But another blockage ER visit and we realized that the narrowing was not going away.

So, it was back to the hospital for more surgery in June.  The doc removed 30cm of small intestine (at least it was the bit at the end).

My human said I looked like a Blobfish after the surgery.

blobfish

Not a photo of Mr Stoma.  This is Bob the Blobfish.  Say “hi” Bob!

Everything looked good.  Healing was going well, and then we ended up with an abdominal abscess.  The abscess sent us back to the hospital two more times during the course of the summer (I told you it was a “fun” year).

Part of the abscess also drained right by me and then healed weird.  It caused me to sit at a weird angle and crap into a skin crevice.  No one was happy about this arrangement.

So, it was time for another minor surgery for a Mr. Stoma facelift!  After my corrective surgery, I was no longer crapping into a skin crevice and the pouching situation was much better.

The abscess healed up for a while but then returned around September.  We’re actually still dealing with this although it is very minor at this point.  It’s basically just a random tube that doesn’t connect to anything – just drains random goo.  Mmmmm…

The week before Christmas, we ended up back in the hospital again (we seriously lost count of how many times we went to the hospital in 2016).  This time there was an abdominal infection going on so it was IV antibiotics and pain meds.  Luckily we were released in time to visit family for the holidays (even if we resembled a blob on the sofa).

kidney-stone-20170214I almost forgot, my human also had a kidney stone in the spring.  Because there wasn’t quite enough going on and we needed another ER trip.

 

So, we’re on new meds which seem to be keeping my Crohn’s Disease under control (knock on wood).

We’re also set to follow up with doctors to get as many health issues under control (was diagnosed with sleep apnea in 2016 too).  Meeting up with a nutritionist next month who specializes with folks with IBD.

So, hopefully 2017 will be the year of feeling better!  Because I have better things to do than sitting around in a hospital bed.  🙂

 

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Holy Bloated Bags, Batman!!!

06-29-15. Shitastrophe

This morning there was nearly a ‘shit’astrophe.

My dear human turned off her 2am alarm in her sleep.  Which she should never, ever do again when she eats Mexican food for a late dinner.

Luckily, our subconscious kicked in around 4am and poked her brain and said she might want to wake up and check the pouch.

So, CC went from a groggy, half-awake state to…”OMG, it’s gonna blow!!!”  In fact, I don’t think I’ve ever seen her move so quickly – or as quickly as a sleep-addled, pudgy woman who has a ready-to-explode bag of feces glued to her can move, I suppose.

I’m not sure either of us have experienced a pouch quite so full and pressurized.  We did make it to the restroom before there was a scene but a pouch change was required because we could tell the seal was already going.

But, if it had gone much longer, there would have been an incident of profound disgustingness.  Because nothing says “sexy” quite like hosing yourself and your husband down with poo in the wee hours of the morning.

We’re just glad our subconscious was paying attention this morning!

brain

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Blockages & Hernias, Oh My!

04-20-15. Medical DramaSo, a couple weeks ago we ended up with ANOTHER blockage which sent us to the ER and another 4 day hospital stay.  Needless to say, we were unamused.

After the blockage in January, they told us the CT scan showed some small hernias and to follow up with our GI surgeon, which we dutifully did.  We discussed it and determined since we couldn’t feel them, they weren’t giving us issues and the blockages didn’t happen at the hernia sites we would just “wait and see”.

Well, we didn’t have to wait long as I ended up with another blockage in late March.  Which my doc said, “OK, waiting over, we should do the hernia repair surgery since that is probably contributing to the blockage issues” (again, this blockage didn’t happen at the hernia).

So, we gave our body a week to recover from the blockage and then we were back to the hospital for the hernia repairs.  There was one near me (parastomal hernia) and two small ones in the belly button area (umbilical hernia).  The initial plan had actually been to go into the opening where I normally hang out (at the stoma – not making new incisions through muscle) to do the repairs but in the end, that ended up not being a viable option so they opened CC back up along the original incision line and sutured up the small herniated areas (they were too small to really use mesh).

So, we got out of hospital on Thursday and have been resting since.  Today is the first day CC decided to go off the narcotic meds.  It’s not quite as fun without the narcotics.

But, it certainly is bearable and so it’s probably  back to work tomorrow.

So much for a wish for a non-exciting medical year!

CC in the hospital with Mr. Moo (he came along for moral support)

CC in the hospital with Mr. Moo (he came along for moral support)

 

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BEWARE: Spaghetti Squash

01-23-15. Spaghetti SquashSo, this has been an “exciting” week for CC and I.  Last week she ate some spaghetti squash.  Apparently, too much spaghetti squash.  Which caused a visit to the ER for pain meds (thank you Mr. Morphine) and a CT scan which confirmed a blockage.

We tried to get into UNC hospital where we had our surgery in 2012, but after 24 hours in the local ER there was no luck getting a bed so I ended up being trucked off to another of the area hospitals.  While in the ER CC was fitted with an NG tube.

Now, CC remembered very clearly having the NG tube back in 2012 and did not enjoy it then.  They came at her with the tube this time and there was a bit of a freak out.  We had to have a nice dose of anti-anxiety meds before they were able to get the tube in.

CC looks so amused to have this tube.

CC looks so amused to have this tube.

There is nothing quite like having your gastic fluids sucked out of one’s body by tube via the nostril.

If you haven’t had to have this, be glad.

Now, it was necessary.  It eased the pressure on the system to allow the blockage to pass without having to have any surgery (yay!).  Since surgery does suck more than an NG tube.  Slightly.

After about 4 days in the hospital (there were some issues with fevers and additional pain) we finally were released.

We also discovered with the CT Scan that CC has a few hernias that need to be dealt with.  They didn’t cause this issue but need to be addressed sooner rather than later.  So, it is back to the surgeon to schedule that but hopefully that will be relatively minor compared to the other abdominal surgery.

So, Spaghetti Squash gets moved to the “Do Not Eat” list along with things like popcorn.

Fun times!

 

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