I feel so lost

I'm diagnosed with mild to moderate proctosigmoiditis. But recently I'm almost at the end of a massive flare. This time not only did I have 10 bms per day but I had crippling stomach pain that I never had before.
Am I getting worse?

It's been a year and a half and the longest time I've been in remission was for like 2 months. It feels like a never ending cycle.

It's great that there is technically a "cure" out there--the J-pouch surgery. But my parents discourage it and even my GI doesn't feel enthusiastic about it. He says I've yet to try oral corticosteroids and Imuran or even Remicade.

I've always been a healthy guy before being diagnosed, and I refuse to put in drugs in me that can potentially screw me up for other diseases. I'm really thinking surgery can get rid of a chronic disease, so why not.

But I'm being discouraged and told that surgery comes with its own complications from sexual dysfunction to general unhappiness. What do I do? I've never felt so lost and depressed. I'm 21 years old and this is not the way I want to live my life.

^Jpouch doesn't require a bag.

100,

Welcome to the forum.
I am sorry you are struggling so.

You know there are alternatives, right?

If not, let me tell you what's worked for me:

As a newbie to the forum, I think it's important for you to know that you have options, which your doc probably won't tell you about. So let me share with you what's worked for me.

Some meds work for some and not for others.

For me, the traditional meds failed me and the mesalamines I became intolerant of.
And when the doc gave me a choice of surgery or remicade, I balked and had to find my own way.

He also told me diet has nothing to do with UC, but I found that it has a great deal to do with exacerbating its symptoms!

I found that by doing these things it helped control my symptoms by 75%:
1) adequate high intake of vitamin d3 ( need to get your levels checked first)
2) probiotics are key, are you on any?
3) slippery elm powder to coate the intestinal tract helped greatly
4) l-glutamine amino acid powder for long term colonic repair
5) food combining
6) diet modification as in gluten and dairy free, Paleo diet
7) rectal meds help lots of folks out

Despite the decrease in symptoms, I was still BLEEDING very heavily at every BM. The Last 25% was taken care of by LDN, low dose naltrexone, which put me in remission. Within a week of starting LDN, the heavy bleeding ( too many times to count with blood clots and mucuous) which I had had for 1 1/2 years straight, went down to ZERO. And that is all thanks to LDN!

If any of this interests you, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

IMO, it isn't one size fits all, and you have to find what works for you, and it may be a combination of things like diet, meds, supplements, etc...

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

Beast: You say that while in a flare you take 2 Lialda in the morning and 2 at night and when in remission you only take 2 in the morning. You really need to try something simple here. It seems obvious to me that you need to take 2 Lialda in the morning and 2 at night forever. Lialda is usually a fairly harmless drug in most cases. Obviously when you cut down to 2 pills a day from 4 you get worse so try staying at the four. That's far better than surgery or moving up the drug ladder.

"At 21 you want to be enjoying your life not walking around with a bag to poop in so before you do that you have to try the drugs. "


i'll let the baggers respond to that

@iPoop.

Drugs may work, but constant use of it for my entire life is just not good. I mean who knows. Putting any sort of drug in your body isn't safe especially for such a long period of time.

I've never had to deal with any issues before. No asthma, no bone disease, no low back pain, no heart disease, no cancer, no nothing. I was so healthy and as a vegeterian, I took care of my body and health. So how did I get something like this?? I still can't wrap my head around it and I'm just so angry.

Beast: Not all medicines are bad. Unfortunately UC has many bad meds but Lialda is pretty tame and can be taken for the rest of your life with no problems. You may be making a grave mistake to try eliminating all meds in lieu of alternatives, flare badly, and then your only choice is taking bad meds or surgery. The more you let it get out of control the worse your options are. If you can keep it under control with Lialda that is way better than what happens to most.

I feel like everyone has already said this, but I'm gonna say it anyways. The benefits of meds out weight the risks. Have you ever looked up the risks for taking something as simple as Tylenol? Everything has risks. For me, I was intolerant to everything so I had to go to either humira or remicade. I looked at the side effects for both and they were the same so I chose remicade because I was a little iffy about injecting myself every week. Remicade has been a miracle for me. I was in so much pain. They monitor you so closely that if you ever did get cancer or something they'd catch it and treat it. Honestly, I am so thankful for remicade I wouldn't care if I got cancer. I was miserable and couldn't do anything.

I think the main reason doctors don't recommend diet options is because there is not one diet anywhere that is guaranteed to work in everyone. All patients respond to foods so differently what would the doctors suggest? My doctor actually gave me a diet recommendation - lactose free. Many UC'rs are lactose intolerant and most doctors know this. A lactose free diet did not help me one bit. What do we want the doctors to suggest? Go Vegan? Go Paleo? Go SCD? Go gluten free? Even though certain diets can work in certain patients, which one would the doctors suggest? Since they would have no idea which diet plan would work in which patient, or maybe no diet plan would work at all, they just stay out of it, knowing many patients will try things on their own anyway.

Momof300 said...
I have been in remission the majority of 12 years since my diagnoses. So I must have done something right

LOL, does that mean that all the people who never got UC in the first place are doing things more "right" than those of us who got sick? Doesn't sound like much beyond luck to me.

OP, surgery is hard and there are risks just like the drugs you're scared of trying. I would (and did) try the drugs first.

As an aside, I find Madcat's attitude towards ostomies offensive and closed minded. I've had "the bag" and it was far better than being sick. Life with a j-pouch is better still. I'd take complete remission with Remicade and my colon any day, but an ostomy beats active inflammation in my experience. I wouldn't be so quick to insult and marginalize people with ostomies when you may very well be one of them yourself some day.

Potential complications of surgery...

First of all, colectomy and j-pouch construction are major abdominal surgeries that carry the same risks associated with any other major surgery (blood clots, abscess, reaction to anesthesia, etc). I will skip over those and address the ones that are more unique to our situation.

Some people, due to their anatomy, are not candidates for j-pouch surgery due to mesenteric reach (the length of the blood supply attached to the small intestine). This is not common and your surgeon can usually predict if it's a risk for you (it generally affects tall or long torsoed men) but it's worth knowing that this cannot be predicted until after your colon is removed and you're on the operating table. So there is a very small chance of going in with the intention of getting a j-pouch and ending up with a permanent ileostomy instead.

Assuming you get the j-pouch, about 95% of j-pouch patients end up satisfied with the surgery and their quality of life. Some issues that can crop up:
- pouchitis: Inflammation of the j-pouch, similar to colitis. Symptoms can include increased frequency and urgency, abdominal pain and cramping, incontinence, fever, general feelings of crappiness. about 50% of UC patients with j-pouches have at least one bout of pouchitis in the first 10 years after surgery. The majority of pouchitis bouts are treated with a short course of antibiotics and if they recur only do so occasionally. A minority, however, become chronic pouchitis. This can require dietary modification, longterm antibiotic use, and in extreme cases even immunosuppressant therapy or pouch removal.

- cuffitis: j-pouch surgery requires leaving behind a very small "cuff" of rectal tissue, usually 1-2 cm in length. It is possible for UC type inflammation to recur in the rectal cuff. Symptoms can include spasming, bleeding, burning and pain with bowel movements. Again, this is usually treated easily with mesalamine suppositories (Canasa), sometimes requires steroid suppositories or enemas, and sometimes it is chronic and doesn't respond to meds.

- irritable pouch syndrome (IPS): this is basically IBS of the pouch. It isn't well understood but it can cause symptoms that mimic cuffitis or pouchitis without the underlying inflammation.

- fistulae: Fistulae can form as a result of inflammation (usually this indicates a Crohn's diagnosis -- about 10% of UC patients who undergo j-pouch surgery end up being rediagnosed as Crohn's Disease post-operatively) or simply in response to surgery. A fistula is basically a "tunnel" that forms between two parts of the body that aren't supposed to be connected. As you can imagine, when a fistula forms between the j-pouch and another body structure, it can result in fecal leakage, infection, and pain.

- stricture: As a result of surgery, scar tissue can form in the anal canal that leads to stricture (narrowing). This can cause difficulty emptying the pouch, and, as a result, incontinence. Stricture also tends to occur at the site of the temporary ileostomy, which can lead to...

- small bowel obstruction: Anyone who undergoes any kind of abdominal surgery where the intestines are manipulated is at an increased risk for small bowel obstruction. Adhesions (scar tissue) form in the abdominal cavity that can cause the small bowel to be constricted or otherwise deviate from their normal positioning. The small intestine can kink and twist on itself (aka volvulus), or obstruction can occur at areas of stricture (e.g. former site of temporary ileostomy). These usually resolve on their own, sometimes after pain or nausea, but a complete obstruction that doesn't resolve at home will require hospitalization.

- hernia: A risk of any abdominal surgery. The incisions required to perform the surgery as well as the temporary ileostomy lead to a weakening of the abdominal wall, increasing your likelihood of experiencing a hernia in the future. Most hernias are merely an nuisance but a strangulated hernia (intestine trapped in the abdominal wall) can be fatal.

- general quality of life issues: And this is the big one. You should go into this surgery knowing with clear eyes that a typical outcome is to have six bowel movements per day. A typical outcome is to not be able to pass gas away from the toilet. A typical outcome is to have occasional nighttime leakage (this is based on survey data from UCSF patients). J-pouch patients report having increased bowel sounds, occasional skin irritation around the anus due to the increased acidity of our bowel movements, and bowel movements that tend to be, well, louder than regular people. I don't know if this is a "complication" of surgery but it bears repeating that although life is WAY BETTER post-op than being in a serious UC flare, it is by no means back to the same normal as before you were ill.

That's all off the top of my head...