I was diagnosed with Crohn’s disease almost 5 years ago. I am 27 years old and after seeing numerous doctors and given multiple treatments that were pointless, I finally received a correct diagnosis for my Crohn’s disease. Perianal Crohn’s. My symptoms are localized in the anus. Stricture, ulcers, fissures, itchiness, bleeding, pain when going to the bathroom, discharge. Occasionally, I will have nausea or diarrhea but that really is only if I eat a very rich, unhealthy meal or drink a lot of alcohol. I definitely do not have cramps or diarrhea all the time like a lot of Crohn’s patients do. I developed an abscess 3 months ago and after it drained a superficial fistula formed. My colorectal surgeon did a fistulotomy and I’m currently waiting for it to completely heal. We knew it would take longer than normal since that area is so inflamed from the Crohn’s disease. My colorectal surgeon had been treating the area with cortisone shots and anal dilation. He says this is a more “unconventional” method of treatment but it was giving me relief. However, I had to move across the country and as much as I loved my doctor I can’t afford to fly back and see him for injections every 3 months. I’ve been in the process of seeing multiple colorectal surgeons to find a treatment plan I am comfortable with. Most doctors will not do what my doctor was doing with steroid shots. I started metronidazole cream applied to the area 2 times a day and in the new year will possible start oral metronidazole for my perianal Crohn’s. I am terrified of taking medication long term. I am so hesitant to take antibiotics for an indefinite amount of time but even more opposed to immunosuppressants (remicade/humira etc). I am worried about the side effects. I also am scared that without medication I will have to get an ostomy because the area will become even worse. I plan on seeing a nutritionist about changing my diet and lifestyle to eliminate as much inflammation in my body. I am hopeful that can give me relief but at the same time I’m not confident that could be enough to put me in remission. Does anyone else struggle with perianal Crohn’s and have the same symptoms? What treatments have worked for you? I am curious to hear from other people with the same struggles as me. I feel hopeless right now.
Perianal Crohn’s Disease
- Thread starter bac715
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Sorry to hear about your situation. I totally understand the anxiety associated to committing to biologics, as we are in a same boat. Son had an abscess in July that turned out to be connected to a horseshoe fistula. No other signs or symptoms. All tests are normal and he is growing fine.
GI has given us a working diagnosis for Crohns and wants us starting on Remicade or Humira (our choice to select). Neither of us including my son are ready for this commitment, albeit we understand that might be necessary.
We have changed couple GIs. Neither believe diet or EEN will help perianal Crohn and it might have a negative effect on his growth. The colorectal surgeon is waiting for the inflammation to subside before surgery. We are going to see a wound care next week. The GI believes the hyperbaric oxygen might have a positive effect.
GI has given us a working diagnosis for Crohns and wants us starting on Remicade or Humira (our choice to select). Neither of us including my son are ready for this commitment, albeit we understand that might be necessary.
We have changed couple GIs. Neither believe diet or EEN will help perianal Crohn and it might have a negative effect on his growth. The colorectal surgeon is waiting for the inflammation to subside before surgery. We are going to see a wound care next week. The GI believes the hyperbaric oxygen might have a positive effect.
Welcome and sorry to hear you are having such problems. While the thought of biologic medications can be scary, remember there are MANY who get relief from them - I myself have been on Remicade for over 12 YEARS.....it is what finally got my perianal disease under control and allowed me to live a much more normal life.
It sounds like you need to look at additional treatment/medications to get things under control - unfortunately that is an area of the body that is pretty important....
If you have any questions about Remicade, please feel free to reach out to me privately if you're uncomfortable asking here.
It sounds like you need to look at additional treatment/medications to get things under control - unfortunately that is an area of the body that is pretty important....
If you have any questions about Remicade, please feel free to reach out to me privately if you're uncomfortable asking here.
Thank you for your response! How did the appointment for wound care go? I am very intrigued about hyperbaric oxygen treatment. However, the cost and time associated with it is insane. My colorectal surgeon is open to me doing it but I don’t know if I can make that financial commitment.
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Hello, a very well written post that explains treatments and meds. Not everyone affected by fistulas and long term discomfort is a medical expert. After my partial anal prolapse and a second operation for a fistula in my anus as well as chronic haemorrhoids, I was advised to stick to a high fibre diet for life and to avoid constipation. This week, I collected a prescription for a bulking agent/compound called Macrogol. When I read the leaflet, it said. Do not use if you have Crohn's Disease. How confusing is that ? If you have anal pain, hard stools are painful and will make haemoroids bleed.
I think pain relief is crucial to make life bearable. Unfortunately these ointments smell and can make people feel self conscious.
I think pain relief is crucial to make life bearable. Unfortunately these ointments smell and can make people feel self conscious.
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Wound care did not do anything. It was only a bridge to get referral to the Hyberbaric group. The Hypebaric doctor was very knowledgeable and believed we might benefit from it. However, he said because all studies so far for perianal Crohns and Hyperbaric oxygen treatment are case studies, although shown success, are not enough for insurances to accept to pay. He still requested authorization from our insurance which subsequently got denied
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Hello, after reading your post, it's clear to me that the British NHS approach is miles apart from offering patients new untested treatment options. I think my colorectal surgeon would have been very dismissive.
If I have further infections and fistulas, I'll be back under the knife for sure. I worry it may lead to colon cancer. That's partly the reason for not eating meat which stays in the colon longer than vegetables.
If I have further infections and fistulas, I'll be back under the knife for sure. I worry it may lead to colon cancer. That's partly the reason for not eating meat which stays in the colon longer than vegetables.
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@bac715
Are your current Gi recommending remicade /humira ?
I understand the worry about POTENTIAL side effects
But you have to understand the potential part .
Short term steriod injections may have been working
But inflammation long term in the gut especially the rectum has definite side effects (not potential)
All meds have potential side effects
Including infant Tylenol (death liver failure Steven Johnson syndrome)- all of which are listed on the fine print of the insert
But the benefit of using infant Tylenol for a baby outweighs the risk of potential side effects
My son was dx with crohns at age 7
Now age 17
He had inflammation in his rectum at dx
He started remicade at age 8
And then humira from 9-13
Now on Stelara for the past 3 .5 years
9 plus years of biologics
No ugly side effects
Healthier than my non ibd kiddo in terms of colds and infections
Lower risk of cancers since inflammation cycle was stopped
Nice healthy pink intestine
please ask your docs BRAND
B -benefits of a drug
R-risks
A-alternatives
N- what happens if you do nothing
D -decision
it’s a tough decision as a patient when you are forced to read the scary possible side effects
Even tougher as a parent
Never regretted biologics for my kiddo
Unlike 5-asa (Pentasa ), 6-mp, or methotrexate
They actually helped and had no bad side effects
Are your current Gi recommending remicade /humira ?
I understand the worry about POTENTIAL side effects
But you have to understand the potential part .
Short term steriod injections may have been working
But inflammation long term in the gut especially the rectum has definite side effects (not potential)
All meds have potential side effects
Including infant Tylenol (death liver failure Steven Johnson syndrome)- all of which are listed on the fine print of the insert
But the benefit of using infant Tylenol for a baby outweighs the risk of potential side effects
My son was dx with crohns at age 7
Now age 17
He had inflammation in his rectum at dx
He started remicade at age 8
And then humira from 9-13
Now on Stelara for the past 3 .5 years
9 plus years of biologics
No ugly side effects
Healthier than my non ibd kiddo in terms of colds and infections
Lower risk of cancers since inflammation cycle was stopped
Nice healthy pink intestine
please ask your docs BRAND
B -benefits of a drug
R-risks
A-alternatives
N- what happens if you do nothing
D -decision
it’s a tough decision as a patient when you are forced to read the scary possible side effects
Even tougher as a parent
Never regretted biologics for my kiddo
Unlike 5-asa (Pentasa ), 6-mp, or methotrexate
They actually helped and had no bad side effects
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Try Carnivore diet.
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If you eat veggies and fishies (not tuna which is full of mercury), olive oil and fruit, a Mediterranean diet, you'll feel better.
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Love this advice MLP.
Specifically in our case, the Doc is saying my son’s disease is only at the perianal area, and it is unlikely to move to the bowels based on the result of all his scopes/tests and also his prometheus test. I specially asked him about the fact that we read early treatment increases the success rate, etc. He believes those papers/presentations are referring to luminal manifestation of crohns and not the perianal. Same is true with diet and perianal Crohns. No diet changes recommended for him.
He is recommending biologics for trying to close the fistula (40-60% success rate). Based on both the GI and the colorectal surgeon, we are not facing any immediate risk as long as he has the seton helping with drainage. This buys us some time to decide. At first, i was terrified of biologics and losing sleep over it. Learning more about them and talking to our doctors have calmed my nerves a bit. Still it is a very difficult decision.
